Wednesday, October 31, 2007

Alex/Aleksa Adoption can be a beautiful thing

Please visit my friend Meredith's blog and send up a prayer for Aleksa, the little girl they are trying to bring home. Aleksa lived in a baby house until yesterday, when she was moved to an institution.

We found out that Aleksa has been transferred from the "baby house" (orphanage) to a mental institution. These places are AWFUL and just writing this has once again started the tears running down my face. I cannot imagine at 4 years old being put into one of these places. PLEASE PLEASE PLEASE pray for Aleksa! Pray that she will be healthy, that she will have enough to eat, that she will be treated with care, and that she will be comforted by the Ultimate Comforter!

4 years old, with DS. Do you have any idea what the world is like in an institution in Europe for a small child with Down syndrome? This little girl is so loved, and so wanted. Sight unseen, by these amazing people. Their faith is helping them get through this:

But God doesn't intend it that way. Don't get me wrong, He intends for us to be on our knees, in tears, and broken for His children. Especially those that are orphans. Especially those that are facing situations that no child shoulld ever even know possible. But fear is NOT from God. His hand is on our family, is on Aleksa, and is leading the way. Gently. But his grip is strengthening as we petition His throne, and that is exactly what we intend to do. We have done so daily, but admittedly not with nearly the gusto that we have had renewed today. That has changed. The floodgates are opened.

Thank you everyone that is lifting up our family in prayer. God hears each and every one. Today we grieved. Tomorrow we plan. The next day... well, let's just take it a day at a time, shall we? My prayer tonight is that God will bless each one that has come to the Father for us today. May you be blessed as much as He has blessed us and abundantly more.

Please take a minute to visit their blog, or to go see the little girl they love already at Reece's Rainbow She is called Sasha there, a nickname. She is precious and beautiful. Godspeed, Cornishes...all of you.

War & Peace-Mothers

Jim is the youngest of 6 kids. Born to a devoted mother who made perfect meals and took her children to church and kept her family strong and united, he was spoiled somewhat by his position in the family. The youngest, the cute one, the baby.

His mom had 3 children early in her marriage, one after another, R, a boy, K, a girl, and M, another girl. She must have gotten too close to the empty nest syndrome, because when that batch of babies was becoming teens and young adults, she had another, three more to even things out...D, a girl, M, a boy, and then Jim. 3 of each, a perfect mix.

He got the best of both worlds in some ways, he was doted on by his older siblings and vied for place with the younger ones. As close knit and loving as his family was, they, like all of us, had demons. Their skeletons were not necessarily in the closet, they came out and rampaged in the public eye, for all the world to see. His Dad was a raging alcoholic, a good and hard-working man who found his solace in a bottle. As gentle as he was with his grandchildren, and without question he adored them all, he could be violent and abusive, especially to his youngest two boys.

My sister in law tells me stories of her coming in and taking the boys out of the house because she genuinely feared he would hurt them. She is married to the oldest son, and she has memories of Jim as a little boy that are all at once sweet and terrible, beautiful and horrifying. They all laugh at how, when his biggest brother joined the Navy, leaving behind a beloved car, little Jim decided to make R happy by painting his car for him. Someone looked out the window to see this 4 year old boy, paint rollers in hand, painting every square inch of that car. Their Dad being a painter, all the materials were handy. Jim does not like this story, for some reason. I get the feeling the punishment didn't fit the crime, and while everyone else laughs about it, he does not remember it with fondness.

Jim's next closest sister was about 6 years older than him. D was deeply intelligent, and deeply troubled. She read ferociously, searching endlessly for answers to all of life's questions. She had a deep faith, raised in a Catholic home, but she was seemingly interested in Buddhism and Wicca, Mahatma Gandhi...and marijuana.

No one talks about D much, most of her teen years were spent away, somewhere, institutionalized, put away, locked up. She lived with an Aunt for awhile, and though she was in and out of his life, Jim adored her in that way that little boys love teen girls. She doted on him, mothered him, perhaps he filled a hole she was trying desperately to fill? She also introduced him, at 13, to drugs. The first time he ever smoked pot, it was with his beloved bis sister. Just a year older than my Jesse now, I cannot imagine it. I blamed her for a very long time for shirking the responsibility of helping raise him right. She should have known better. But her demons were far more entrenched than marijuana and far-fetched ideas. D was teetering on the edge of insanity, consumed with paranoia and fear, schizophrenic and angry. Very, very angry.

When I met Jim, she was still living at home. We would giggle at her antics sometimes, she was impolite, to say the least. Bodily functions were wildly amusing to her, she would pass gas loudly then sit laughing about it. She ate weird foods, talked crazy talk, and adored her baby brother. She seemed amused by me, no doubt figuring "puppy love" had struck, we were all of 16 and 17 years old. Even then, I knew that their house held secrets I would never know. Clean as a whistle, warm, overflowing with food and French-speaking, laughing people, there was always an edge to it all, like the feeling you get watching people walk a tightrope, willing them to toe the line, holding your breath when they slide off course, your heart beating faster and faster when they start to fall. In their lives, the safety net was the silence, it seemed an unwritten rule: "We don't discuss those things." Whether that meant D's escalating craziness, dad's alcoholism and occasional sadistic abuse, or the simmering resentment that ran like a live wire through them all, we just didn't talk about it. Coming from my own dysfunctional (to say the least) family, I knew when to avert my eyes. You don't need to ask questions when you already know the answers.

Jim and I moved away to start a new life downstate. D moved to Connecticut and started hers there. She had a great job, was doing well in school, and yet still being pursued by the ghosts and goblins of her mind. We would hear bits and pieces, she was hospitalized, she was in a supported living unit, she had met a man. She would call with ever-increasing wildness. She broke her back, she was stinking rich, she fell under a bus. The spiral she was in seemed never-ending, and watching her free fall was painful, especially seeing it through the eyes of her little brother, who both loved and feared her by now.

We were making our way through life, trying to get ahead and struggling to make ends meet. Now firmly "away" from both of our families, we went home perhaps once a year, and kept in touch by phone as much as possible. We got snippets of every one's lives, saw them all now and again, but were increasingly limited in our contact. Families grow, and that means they grow apart, sometimes. Time, distance, and circumstance were fueling the divide. We heard bits and pieces about D, but hadn't seen her in several years. We knew she was dating a man named John. Then we heard she was pregnant, with twins no less! She had a very light hold of sanity at the time, and her paramour was brilliantly troubled right along with her. No two people seemed less equipped to raise twin boys than those two. In retrospect, the mother in me is saddened that I didn't reach out to her more, to try to help, to offer support. It was more a matter of whispering behind my hand, "she can't raise a baby!" Jim and I had our daughter, Kristin, and it was hard enough with all of our faculties in place. How would they feed the babies? How would they do this, with no money, no vehicle, and a genuine failure to understand even the most basic principles of caring for another human being? They barely kept themselves alive!

The twins were born in Hartford in in 1994. Tiny, fragile little boys, the state took immediate custody of them. D and her partner were called inept, incapable, their various diagnosis' deciding for them, in the eyes of the law, that they could not parent their children. Placed in a foster home, they grew and grew. Jim's oldest brother, R, and his wife fought for custody. The hearings dragged on for years, what could have ended gently, with the babies being raised by family, became an all out war. In and out of the courts, years later they were taken out of the foster home and finally placed with R and his family.

By then, D and John had found themselves pregnant again. Jim and I had had a son we named Jesse, a beautiful little boy who was the apple of our eyes. If I had known then what I do now, I would have allowed him to be our ONLY son, to have us sane and whole throughout his infancy and toddlerhood. Our daughter was 7, and our son was 1, when we won the right, after a year long battle, to bring D & John's youngest son home to live with us. There had been no question, this child would never be raised by his parents. Their hold on sanity was loosening, their anger at losing the first two was palpable. We, suddenly, were the enemy. We were taking away their son, to another state where visits would be nearly impossible. We, in the Judge's eyes, were more acceptable, little brother wasn't so little anymore. And he was deemed more responsible, a more fit parent. That had to hurt.

We brought Alex home when he was 8 months old. He had been in a foster home too, and in my heart I knew it was not a good place for him. I cried and cried over the months, hearing about his life. We finally met him, clandestinely, in a McDonalds. He was fragile, pale, and tiny. He needed us. We were determined, and we finally won the right to bring him home. Our new son joined our 1 yr old and our 9 yr old. Life was good.

3 days later, at a Pediatric appointment, Alex was determined to have Cerebral palsy. He was way behind on milestones. He could not yet roll over, at 8 months. He bruised easily. A blood test revealed that he had Von Willebrands disease, like hemophilia. It would mean human blood product every time he had a cut or needed surgery. He was diagnosed with VeloCardioFacial Syndrome on top of it all. There was a question of Fetal Alcohol syndrome to add icing to the cake. I loved him, and I said repeatedly, "I can handle that." He was enrolled in a special preschool. He smiles a brilliant smile, but he seemed to have dark secrets of his own.

Four weeks after bringing him home, On August 20, the day before Jim's birthday, we were pregnant again. Unplanned to say the least. We had had to try for years to have our son, saw an infertility doctor even. Had him, got Alex, and then pregnant? Our lives were rapidly becoming crazy, too. "I can do this!" I said. And we moved forward.

D called often, and John did too. They loved their son, but they seemed stuck on how to show that love. D would send packages of things for him, oftentimes clothing that was 10 sizes too big. She would send spices, poured into envelopes, broken crayons, one earring. always some odd, bizarre thing. I learned to know there was a package from her by the smell, walking to the mailbox. I was frustrated, angry, overwhelmed. She would call and be very unkind. She did not like that we had her son. She resented us, and she told us so. Her angry tirades often ended with me slamming the phone down, in tears. All the time, the children were growing, and so was my belly.

In June of 1998, our daughter was born. Ciarra was much wanted, if a surprise. We discovered on the day she was born that she was packing even more surprises. Down syndrome became the talk of the town. Our daughter, our youngest and last child, had been born with Down syndrome. Life changed dramatically that day, and although we couldn't know it, it changed everything.

We had been licensed as a relative foster home, and licensed by space allowance per child. We had barely squeaked by. When I found out I was pregnant, we were told we didn't have enough square footage to maintain our license with 4 children in the home. We took out a loan and added on. The walls were literally down the day I left to go deliver Ciarra, workers everywhere, trying to get it all done. I had a 9 yr old, a 11/2 year old, a one year old, and a newborn.

When Ciarra was first born, there were literally no walls on the front of our home. There was plastic sheeting stapled up, and the guy we had hired to build the thing was not interested in "hurry up". In his defense, he was now working around me and my new mom-of-a-child-with-an-unexpected-disability nerves, a curious 9 yr old, an even curiouser toddler, and a tiny fragile one year old who could bleed to death from any injury he might receive on said workman's tools, stray nails, etc. Plus a newborn. I was over my head, and I knew it. Depressed, scared, angry, volatile...all of those words could apply. I had gone from a nice quiet life as a mom of 2 to mom of 4, 3 of them babies, 2 with special needs, in a HURRY.

For much of that first few weeks, Alex was in his crib, in his room just off the living room where he could see everything and everyone and be safe from all of the commotion. Ciarra was often in her room too, but being a newborn, she slept a lot and didn't much care where that was. After a week or so of begging the guy to hurry, I fired him in a fit, after finding him smoking pot in the new addition. I was furious. So was he. Before he left, while words were being shouted, he promised to "pay me back" by making an allegation to DHS about me and how I left Alex and Ciarra in their rooms all day. I heard him, but I was so angry I couldn't respond. HOW ELSE was I to keep them safe? I could barely contain Jesse, never mind 2 infants. I cried for days, waiting for the knock on the door. Instead, I received a phone call, and a polite "Hey, can we just come over and see how things are going?" They did, in fact they spoke to Kristin and Jesse, checked everyone out to make sure they seemed "OK" and left with the promise of an "all clear" letter to be mailed. All clear is cool, when you have been accused of abuse/neglect. But it doesn't ever go away, in your own mind, once it is there it leaves a smell you can never ever be fully rid of. The letter goes into the file, marked "Unsubstantiated" and noted with the babysitters comments about how she was here and saw the whole thing and can verify that he did it out of retaliation. Today, 9 years later, that letter, that accusation, still sits there. I have seen the man who lodged it several times. Once at a funeral for a mutual friend, he tried to hug me, and when I resisted, he said something about forgiving him and letting go. I want to remind him that his lie started the ball rolling that would eventually cost Alex his life.

So, babies being babies, they grew. Ciarra thrived, she was meeting her milestones, smiling all the time, a happy joyful and sweet little girl. She was sanity for me, proof that I could do it right, and she was healing my heart in so many ways. Alex was in a wonderful preschool which sent a social worker once a week to sit with me and talk about his needs. I treasured her as a friend, and thanked God for her insights. She, above all, made me feel like a good mom again. I needed that, I was still terrified and overwhelmed, and disheartened by the allegation. Alex was 11/2, quite delayed cognitively and physically, and with escalating behavior and emotional issues we were desperate to address. Jesse was in the terrible twos, all boy, rough and tumble and ready for action. He wanted a wrestling buddy, and Alex wasn't it. He loved physical contact, and would create intricate walkways built of furniture, laundry baskets, stuff, on which to leap across the living room. He was determined to have a playmate, and dragged an unwilling Alex along with him. Kristin was a 3rd grader, and I am sad to say that that time with her is somewhat of a blur. I was grateful she was in school, at least there she had some routine and sanity. She gave up her room for the boys to share, squeezed into a tiny hole of a room that was meant to be a den. She didn't complain about her life, which had changed drastically and suddenly. But she started spending a lot of time in her room, with the door closed. I regret the time I lost with her in those days. I regret that Jesse got scolded often for trying to make Alex play, I regret that I was frazzled and bewildered by all of their needs, and was emotionally not in very good shape. I regret that when D called to check on her son, I was angry right back at her, and felt we were each other's competition. *I* was his mother, *I* was doing all the hard hard work. *I* wrote her off and chose to be short and abrupt with her. In fact, I was becoming short and abrupt with everyone, including the kids.

Alex was 21/2 when he had a crib accident. He had loose ligaments and hated his crib. He wanted to get out and get to the fridge. His food thing had begun to consume us. There was a question of Prader Willi syndrome. He ate constantly, till he vomited, and would eat that too if you weren't quick enough. He was constantly crying for food, constantly watching us eat after wolfing sown his own meal. We were meeting with a child psychologist, who told us that it was likely his emotional reaction to his first 8 months in the foster home, where he just might not have had enough of anything, love, attention, food, and he was filling that void with food. Dog food, cat food, people food, it didn't matter. In any event, I heard a terrible thump one night, just as Kristin came down the hall. I asked her what she was doing, told her to be quiet, the babies were sleeping. She said it wasn't her, I asked her to peek at Alex in his room. She did, and hollered for help. And there he was, lying half on the floor, one leg still stuck through the crib slats. It looked like he had tried to put one leg up and over and wrap it back through, to brace himself, then fallen. It looked BAD. I knew in my heart that his injury would always be looked at as something I might have caused. I was grateful beyond words to have the ER doc tell me that unquestionably, it did NOT look like abuse to him, but a simple crib injury exacerbated by his CP. The mechanism of the injury made it clear, he dislocated his hip straight up and down, and unless I had hung him by one leg and shaken him perfectly straight, it was impossible for it to have happened via abuse. Still, I faced the long searching looks of his DHS worker, who I called immediately. She met with the doc, she met with our social worker and psychologist. They ALL told her to give us the supports we needed to make it work, and to stop putting so much pressure on me. I knew then that I was beginning to change in my feelings. I loved Alex, but his needs were too much for me. I was so overwhelmed by then that I wasn't a very good mother to any of them. I was angry, I felt slighted by the allegation of abuse. I was humiliated, I was ANGRY. I began to realize that I needed to find a way out. I wanted to keep Alex, but I needed to end the DHS involvement. I told them either we adopt him or take him back, but STOP controlling every aspect of our lives. Stop telling me he isn't mine, when I am killing myself to make him better.

Months passed, again. In all the 3 yrs that Alex lives with us here, his Ct social worker came to visit ONE time. She called perhaps 4-5. She offered none of the support we needed. She wouldn't let us do anything without permission. She seemed unable or unwilling to tone down the contact from his bio parents, which was becoming increasingly bizarre. She talked down to me, asked questions about Ciarra that spoke volumes about her lack of understanding. Finally, she called, it was a beautiful late summer day. She said the adoption papers were ready. But there was one hangup. I wasnt to be Alex's legal parent. Jim and I weren't married. Only HIS name was to go on the paperwork. The child I poured my heart and soul into for years would never be mine. Jim, who loved Alex, and supported us all, but who had never attended one PET meeting, who had never faced DHS, who had let me handle...everything...would be Alex's only legal parent. I felt kicked in the teeth. It was the worst kind of disrespect. I was his mother. And yet, I would be nobody. If Jim had died that week, I was told, I would have no legal rights to this child. I told her, in not so polite words, to go to hell. It was the beginning of the end.

Jim and I talked in depth about what we needed, and about what we believed Alex needed. I knew in my heart that I was not a good mother to any of them really at that point. I loved them all, cared for their needs, but I was not emotionally capable of handling all the many many things they needed. There were 2 sets of social workers, 2 special needs preschools, medical appointments for 2 with special needs and 2 without. Trips to specialists, bleeding disorder docs, DHS paperwork, psychologist appointments to TRY to find out how to meet Alex's needs. Behavior supports we begged for and never got. He was now driven to eat, to demonstrate that one day I showed his social worker how he would eat an entire HUGE box (not the little box, mind you, the huge huge 2 foot tall sized box) of Cheerios. He ate it all and cried for more. She was shocked. I was resigned. In the end, we made a very hard choice. We decided that we couldnt meet all of their needs. We decided that Alex, particularly, needed to be an only child. He needed all the time and attention he could get, with no other kids to distract from it. He needed intensive therapy for his emotional issues, his eating disorder, and he needed constant monitoring by orthopedic, genetic, behavioral, occupational therapy, physical therapy, speech therapy, doctors. He needed far more time than I could give him. I believed, we believed, that the best thing we could do for him was allow him to be adopted by someone who would allow us to see him, to know he was ok. Where he would absolutely be the only child. Where his needs could be met and our own kids needs could be met, as well. Where I didnt have to watch over my shoulder every time I turned around that this kid with a bleeding disorder and human blood 1999....would either have a suspicious bruise that would invite questions or maybe bite Ciarra or Jesse, necessitating another round of HIV testing. His biting had become uncontrollable. His behaviors were wild and erratic, he would poop and hide it in her toys, under his bed, under Jesse's pillow. He was stealing food, screaming all the time. I felt like it was me. I wasnt doing something right. In the end, I conceded. I wasnt the right mother for him. I felt defeated, angry, sad, and so sorry. I was full of guilt, cried all the time, and yet I knew this was right.

D called often, asking how I was. I thought at the time she was rubbing it in. Now I think, maybe she respected me as his mom? I wasnt very kind to her, I was as short and polite and distant as I could be. I just didnt want to have to worry about her, too.

It took 6 months from when we told DCFS in Ct that we couldnt raise Alex for them to start acting on a permamency plan for him. Their sideways looks and ignorant comments, their judgement of us as parents, all went by the wayside. Suddenly, we were "good enough". They made virtually no contact with us over that time. They were so worried about his safety in our home that they left him here for 6 long months. There were days he would walk into my kitchen and be standing in a puddle of sunshine and look at me with his big blue eyes. My heart would sing, and I would go to reach for the phone "Forget it, I can do this." And there were days when I wanted to grab the phone and scream, "Please, save me, I cant do this anymore. Im scared. Im overwhelmed. Im not doing it right." I never called.

In August of 2000, we were moving forward. A friend of mine, whose cousin used to babysit Alex (and whos home had been DHS approved) was stepping forward. They wanted to adopt him. They would let us see him. He would be their only child, as they couldnt have kids biologically. They loved him, even now I believe that is true. They came to Maine to get to know him again. They took him on visits. I knew it was the right thing, but still, I was his Mom. I felt a tinge of jealousy, and wrestled with myself. I knew that the best thing for Alex was this. He deserved better than me.

The visits were going well. J&J, the prospective parents, were enjoying him, spiling him. We talked a lot about his needs, his food thing, his emotional needs. He was not fully potty trained, at almost 4. Developmentally, he was more like 2. He was tiny, just 25 pounds. His big bloue eyes and blonde hair made him waifish looking. He was beautiful. I bundled him up for his visits with tears in my eyes, but I hoped and prayed this was right.

On September 11, 2000, he came home from a visit with them and said "Mumma, J punched me." He was crying, great wracking sobs. I picked him up and put him on the table to face me, and asked him to say it again. He had a speech delay that left me unsure, did he say pinch or did he say punch? I wondered, in the space of a second, if he was just being a whiner and they were play wrestling and he, being Alex, didnt like rough play? I asked him, pinched or punched. I demonstrated punch, and he cried hysterically and threw himself into my arms. I held him till he fell asleep, and put him in his little bed in the room he shared with Jesse. And then I picked up the phone and called a local foster care support agency. I begged them to help me. I had made a mistake, I said, please help me. They are going to be taking him any day now. What do I do? She took my information and said she would call me back. I called his DCFS worker in Ct, in a panic, and left a message. I didnt trust her, and I knew she would think this was about me changing my mind. THe day was supposed to be 2 days away, he would be their son forever after that. I saw wondering who to call and heard the knock on my door. Two armed men came into my home, introduced themselves as DHS agents, and asked me to give Alex to them. I was so scared, so freaked out. There was an allegation against me, made by J...the soon to be adoptive father. Supposedly he had seen me hit Alex and throw him in his bed. Supposedly this happened from our mud room entryway, where he stood watching. I showed the men that it was impossible, the boys room was around a corner, and couldnt be seen. I begged them to listem, told them about what Alex had said an hour before. They steadfastly ignored me and repeated their request for me to get Alex. I woke him up from his bed, dressed him in his sweet little khaki overalls and flannel shirt, changed his diaper, and carried him out. My mind raced to Ciarra, asleep in her crib, and Jesse due home from Kindergarten anytime. Would these men take my other children if I fought them? Would I be able to stop this, would anyone believe me about the punch? I could never have known that that was the last time I would touch him while he lived. His little body still half asleep, warm and snuggly, he clung to me. He was afraid. The man reached out and tried to take him, he clung to me, arms tight around my neck. I whispered to him, "I will see you soon, Alex, you are going to be ok." The men said he would go to the DHS office, I would have time to make some calls, at least make someone listen to me. I handed my crying son to the taller man, and then the diaper bag, and a little red truck Jim's dad had given him that he treasured. And I watched them carry him away to their cars, screaming "Mommy" over the mans shoulder, arms reaching out. I will never forget that, I will never forget his face. And I will never ever forget how guilty I felt for not fighting harder to keep him here.

J's allegation was checked out by DHS. They agreed that there was no way it could be true the way he had said it. It simply is not possible to see what he said he saw from where he claimed to see it. I was told it would go down as unfounded...again...I found out later that he and the workman who made the original allegation were friends, and he knew just what to say to cause me trouble. making abuse allegations against someone destroys them. It is so easily done, and so maliciously done at times. And yet, it is the best way we have as a society to protect the Alex's. It is too bad, to say the least, that my own report of abuse aganist him went unheeded. For 2 weeks, until mid September, I was grilled by DHS, I was threatened with the loss of my own children. They were asked question after question about my parenting, about if we hit them, about stress. (And there was plenty of that, I can only imagine what their answers were.) Despite seeing with their own eyes that it was impossible to happen as he said it did, this was the 2nd allegation against me, and had to be checked out. While they were interviewing me and my children, Alex was making his way south, to Florida, in a baby blue Cadillac.

On September 25th, we had a meeting at home at home with our social worker. I will be forever grateful that she was here. We were talking about Alex, wondering how he was. I doubted now that we would be allowed to see him again. I was so angry at how it had eneded, after 3 years of our lives, a lie had cost my kids and Jim from saying goodbye. And I worried everyday about his placement. I never knew when they left for Florida. I never knew that J&J were given custody of him despite my calls. I was so busy dealing with all the emotions swirling through my house, the kids missed their brother, Ciarra looked confused, where is he? Jesse had just started Kindergarten, and I was grateful he and Kristin had school, they needed to be children. DHS had finally said they believed that my children were safe. They would not discuss Alex with me.

As the social worker and I sat talking, the phone rang. It was Jim's brother M. Alex was on life support in Florida. He had "choked on his vomit". I knew instantly that this was very bad. I felt so many emotions, anger, even hatred, vengefulness, distress, sadness, overwhelming grief, exhaustion, and the tiniest sense of vindication. I know that sounds awful, but I knew finally, without a doubt, people would believe me. But first they had to understand, this wasnt choking. It couldnt be. Something happened here, and they had to listen to me. Within days, they had. J confessed to wrapping Alex so tightly in a blanket that he couldnt breathe. He was punsihing him. Video shot earlier at a home depot store would show further abuse. Finally, someone was hearing me. Alex had to be ok. But what then? would they let us take him back? Should we? I wanted to run to him, to hold him and promise him he would never hurt again. A series of phone calls told me that that would never happen. Alex was brain dead. I would never be able to tell him I was sorry. I remember getting that call and screaming with everything in me. I felt so personally responsible. I felt such grief. He survived on life support until September 27th, when we agreed that it was futile. He had no brain activity at all, and had suffered such serious injuries that he could never recover.

Once again, the state took away my rights. Someone in the family made the decision to bury Alex in Ct, near "his mother." They wanted D and John to be able to see his grave. (Nevermind what we wanted.) I went to the church and watched the media firestorm erupt. Jim and Jesse were out front playing on a patch of grass when a cameraman rushed in from nowhere and captured their little game. I was so angry. My name, our names, were now national news. Ciarra's DS was now fodder for why we gave Alex up. Nevermind that it wasnt about her needs, it was about his. Even little Jesse's name was maligned, he was noted for being "rough" with Alex. Tell me what 4 yr old isnt rough with their little brother sometimes? I, of course, was painted in various colors throughout. I was the victim, the accuser, the abuser, the poor mother, the one who gave Alex to these monsters. All came partway near the truth, none ever portrayed me accurately.

We went into the church, and there was my tiny boy. Dressed in a little suit I had picked out days before. (May you never know how hard it is to buy a suit in early October in a size 3T. Walking through that store, knowing why I was there, while the world bubbled happily by on their quest for new school clothes, was an experience I hope never to repeat.) Facing D and John at the church was difficult. For better or for worse, I feel a strong sense that I let them down. I didnt do enough to protect their son. Suddenly, there in that church, he was their son, too. Even as I read the eulogy, in which I spoke of Alex;s love for greeting jim at the door each night with a "Daddy's home!", I felt keenly the sadness of Alex's biological parents, hearing about his life and knowing that they didnt know half of it.

As hurt and angry and alone as I felt, there was an odd kinship with D. We were, after all, mothers. She gave birth. I brought the tshirt from his beloved preschool to lay to rest beside him. She was seeing him for the first time in a year, while I was counting bruises and seeing his crew cut that took away all of his beautiful blonde hair, and admiring his tiny hands, so still. I hugged D, and as much animosity as there had been, we were alone in that church, we two, with our relationship. We were both his mother. We both loved him, in our own ways. We had both lost him. In fact, there was a third "mother", the mother who would have been if her husband hadnt beaten, smothered, and tortured him to death. We were fragile, we were broken. And the only one who really knew just how broken was each other.

And so we laid Alex to rest, in the children's cemetary in Hartford. Walking away from his grave was the hardest thing I have ever done. D goes to visit, but not very often. His preschool planted a flowering crab tree in his memory (yes, the pun was intended) and I visit that at every Christmas, his birth and death dates, and sometimes on days I just need to be near him. I think I probably visit the tree more than she visits the grave. But Alex isnt really there, anyway. There is a body there, but the spirit that he was is not there. I like to think it is here, with us, it is at his preschool, it is in his sisters smile.

D and I have a weird connection now. We arent close, and yet we are the only ones who always remember the days. Birthdays, death days, special days. She will call, we will make small talk about the weather. She will sometimes tell me some wild story about her life, and I dont try to guess anymore if they are real or imagined. Inevitably, she will say something about the day being special, and she will seemingly take comfort when I respond affirmatively, "I know". We dont talk about the details, but we remember the days. And we remember the son we shared, in our crazy mixed-up way. John still sends postcards, as he did throughout Alex's life. Inevitably, he thanks us for the love and care we showed his son, while recognizing that he was our son, too. It is a funny, peaceful, undiscussed alliance. We four, so different, but tied together forever because of one little boy with bright eyes and blonde hair and a killer smile. I shouldnt be surprised that this definition of family is dysnfuctional, to say the least. But it works for us, it functions for us.

Tuesday, October 30, 2007

Monday, October 29, 2007

21 things

1 She has a personal and deep relationship with God. She has been praying for people since she was teeny. Her understanding goes deeper than anything I can explain. She attends weekly Pioneer Club meetings after school, and I am told she consistently "gets it" when they discuss stories or she has to recall details.

2 Ciarra still talks about her big brother Alex, who died when she was 2. She tells me often that she remembers him. Once in awhile, she says she sees him and he is smiling at her.

3 There are 2 people in this world who understand Ciarra best, speech and behavior wise. Those 2 are me and her big brother Jesse. She adores him, and he her. They play together like puppies, and make me cry with their love.

4 Ciarra has made me face some demons of my own over the years. She has taught me so much about the courage it takes to live with special needs. I think she is making me pay back for all the times I didnt get it and was cruel in my thinking or my words.

5 Ciarra is utterly terrified of people in wheelchairs. I dont know why.

6 Ciarra LOVES animals. She wants to be a Vet someday. She is just starting to work 2 afternoons a week at our local vet. She feeds their small in house animals, does some cleaning, and learns a LOT.

7 Ciarra is a Daddy's girl most of the time.

8 Ciarra refuses to do homework with ANYONE but me.

9 Ciarra can now take a shower completely independently. (YAY!)

10 Ciarra is a WHIZ at video games. She particularly likes Halo....oops. She has mostly E rated games, but her big brother has some M ones...and she LOVES to sit and play with him.

11 Ciarra's name was a big battle. I used to call my friend Ruth's big sister Sarah "SeeAirUh" when I was small. Nichole is after Jims niece, my favorite. Her last name is very French as well. Jim was adamant he did NOT like the name Ciarra. On the way to the hospital, we were following a big black Sierra pickup truck, and he said "You want to name her after a TRUCK?!". When she was born about an hour later, and she looked at me, I knew she has DS right away. He never argued about her name again, and I love him for it.

12 Ciarra has been in

2 commercials,

1 Blueberry Shoes movie, “Discovery: Pathways to Better Speech for Children with Down Syndrome.”

and her story has been in 2 books. One book will be out soon, it is called My Child My Gift the other is called Defiant Birth

13 Ciarra is a natural born photographer. Somehow, her photographs just come out right. I am often quite taken with the expressions of the children she photographs. They are shot at her level, their expressions are open and yet questioning at the same time. I think they are beautiful.

14 Ciarra is a VERY good artist. If my scanner was working, I would show you the Spongebob she drew last night. She has a talent, and I need to find a way to nurture it.

15 Ciarra is not interested in Hanah Montana or ALL. She loves spongebob, Charlie & Lola, rugrats, and Jimmy Neutron. She likes Drake and Josh. She LOVES the entire premise of characters that are DRAWN.

16 She is very visual. We learned that color coding our measuring cups and putting a dot next to recipes calling for certain amounts of things allowed her to get it sooner...and helped her learn fractions.

17 She LOVES pizza...just cheese. Loves PB&J, hates butter. LOVES steak and veggies. LOVES ice cream. Doesnt like mashed potatoes. LOVES cheeseburgers.

18 Ciarra has ALWAYS loved Pepsi...from infancy. If you didnt watch it, she would grab it.

19 Her best friend is a yr older and wears hearing aides. Her name is Jade.

20 Ciarra hasnt had a 1-1 aide since Kindergarten. She has NO aide now.

21 She is very good at basketball and baseball. Only her size makes us rethink it every year.

Sunday, October 28, 2007

I am a Community Blogger! Thanks Shannon!

Shannon at Gabi's World has awarded me with the Community Blogger Award. Thank you, Shannon!

She said:

Michelle at DownBlogger who has a daughter much like my Gabi in so many ways including the extra chromosome they share. Michelle works to educate the community about the misconceptions of Down syndrome and those who have it.

For those who have not yet met Shannon and her absolutely adorable little girl, Gabi, go,'ll be glad you did. I have discovered that watching videos of Gabi is good for the soul. Her giggle just makes my face hurt. Cute doesn't cover it, she is just the sweetest thing. I so wish they lived nearby, because our girls are SO much alike.

I will pass this on to the following worthy Community Bloggers:

Kim at Life, Not Just A Cereal Anymore Her stories and pictures about her kids charm me and inspire me. And she has been a wonderful friend to me in ways she may not even realize.

And Our Life, by a fellow Mainer. She has a little one with DS, plus 2 other young ones. Her blog is a peaceful reflective place, great music and wonderful concise posts that make you think and remind you to celebrate all the good things in your life.

It is funny, in the "real world", people have no idea what it means when I say "I blogged about that today!" Blogging has opened so many doors for me, to really look into others lives and see their most important thoughts shared with the world. Its a cool thing, this blogging.

George's sister shares

I should do this more often! Friday I had lunch at McDonalds and got to watch George in action. He has worked at McDonalds for 10 yrs. and when my children were young we use to go quite often to watch Uncle George at work but in the last 5 years or so we have seldom gone there while George was working.

Just some history, George is my brother and he has lived with me and my husband for 28 of our 29 years of marriage. My mother died shortly after our marriage and my father was diagnoed with terminal cancer six weeks later. George has Down Syndrome and is soon to be 47 yrs old and I am one of his sisters and am 5 years his senior.

As I sat down just inside of the play area and I could see George cleaning up the tables of napkins and wrappers. He is very efficient and serious about his work. The room was filled with young mothers and very young children, (school age children being in school) running amuck in the play equipment. I watched as George talked to mothers asking if it was ok to throw some things away and all smiled at George and called him by name as they answered him. (It seems that George is well known to these young mothers and their children) Later I watched as he handled a pushing match between two 4 yr. olds. I started to stand up afraid that the mom would take offence to George telling her son not to push but she came over and made her son apologize to the little girl and to George for having interrupted his work!!! Then a mother asked George to get her 2yr old out of the play equipment (he had climbed up too high to reach.) and George was soon quickly bringing the child down the slide.

I sometimes forget how much things have changed. Attitudes are so different now and I rarely need to educate adults anymore. Kids are still kids but George is such a great ambassador for himself and for future ds adults that I even seldom have to educate them when George is around.

I also forget that George has a whole world of experiences that I know nothing about. Every day he goes to work he meets hundreds of people and they meet him and I know nothing of those encounters but the few glimpses I get when I visit or the many times we have been out together and a stranger will walk up to George and greet him as an old friend. They all know about me, my DH and my children. (George tells everyone about us and shows pictures!) When we ask George how were things at work today all we get out of him is okay.

I wish our parents had lived to see how good George’s life is. They fought so hard to change the hearts and minds of people, always with patience and facts and kindness, (even when they really wanted to sock them) and to see how wonderfully George has been accepted just makes me cry! When my mother was dying she wrote me a wonderful letter (someday I may share it if there is an interest) and in it she expressed her concerns for George's well being and the future. George was still in high school when she died and she never got a chance to see how it all turned out. Well it turned out just fine.

George's life is full of love and friendship and respect. What more could any parent ask for!

Sister of George,(47yrs, ds)

Saw this post on a board I visit often, and was so touched by it. The love and respect is almost palpable, isnt it? I asked permission to share it here, and have asked to see the letter the mom had written as well. I have long had such an incredible sense of gratitude to the moms and dads who went before us and paved the way. We owe them a debt of gratitude. Imagine this mother, dying before she got to know how the story ended? I know that is my worst fear, to not know how Ciarra's life will turn out. I want to be able to look at her life someday and sit back and smile and know all the tears and the battles and the love were worth ten times what they cost us. I want to share George's story as much for his Mom as I do for him and his sister, or for me. I hope she is looking down and seeing that He made it, he is ok. She must've done one heckuva job raising her children, because you can feel the love a hundred miles away. Thanks, Wisha.

The Letter
This is the letter I received upon my mother’s death, I was 24yrs old and George was 18. My sister and brothers each received a letter. Each was very different and spoke to my mother’s understanding of each of her children. I offer you this letter with the hope you see that what we say to our children can greatly impact on who they are. My mother, though her words has guided us though our lives.

My Dear Felicia,

How can I say “goodbye” to you – my “happy little huntress”? (This refers to my name Felicia Diane which means happy huntress) I have loved each of you equally but each in a different way because of your different needs and individuality. You have always been my “soft” one – too sensitive – too caring. But with all of that, you have a great strength and the will and determination to do the things you must. Like grandmother Brownewell, there is an iron fist in your velvet glove!

I shall be forever grateful to you – you have eased my mind and brought peace to me by your love and willingness to care for George. You – perhaps more than the others – understand that has been the nightmare in the back of my mind; the fear of someday leaving him. Thank you my darling for loving him as much as I do and giving me the greatest of gifts, your love.

I am grateful for the years we have had together and the deep understanding we have had between us.

I hope you children will always remain close and keep in touch with each other – love each other as I have loved you all.

I have no great philosophy to pass on. I hope that you will live your life so that there will be no regrets and that the words honor – duty – honesty – and love are as important to you as they were to me, and to my parents and grandparents. Few of us were ever wealthy but our credit was always good and so was our word.

I have little to bequeath except my love but I love you very much.

Friday, October 26, 2007

Casting call...newborn with DS!

We have an assignment!

Please help me out and forward this email to anyone you know anywhere in the US and Canada that might have contact with a brand new Caucasian baby girl who has Down syndrome. Forward this to any list-serve you may be on for DS.

The book "The Memory Keeper's Daughter" is being made into a film for the Lifetime Channel. It is shooting in Nova Scotia in November. They are looking for a baby girl born in October 2007 to appear in the film as the new born Phoebe. They only found one baby with DS born in Nova Scotia in 2007 and she is 6 months old. In Canada it is a law to screen every expectant mother for DS not just a guideline, scary isn't it?

I need to hear from any parent of a newborn who might want the =
opportunity for their little one to work in Nova Scotia in November =
2007. I would also consider older babies weighing under 8 lbs. I know =
from my son Blair being a preemie he didn't hit 8 lbs until he was about =
4 months old.

I have an agent that would negotiate all the details making sure to get =
appropriate pay and travel for the family. Please have anyone =
interested contact me at the DSALA office at 818-242-7871 or they can =
reach me by email at Thank you for helping me with this =
search, and watch for the film on Lifetime next spring. Gail

Gail Williamson
Executive Director
Down Syndrome Association of Los Angeles, Inc.
315 Arden Avenue, Suite 25
Glendale, CA 91304
818-242-7871 voice
818-242-7819 fax

Sunday, October 21, 2007

Gap casting call!

lets all enter our kids, and show the world what TRUE beauty is!! I am entering a few pics we took today at the park. Enter yours, then come share!!

Saturday, October 20, 2007

Ain't no chickens here

we went to this haunted house tonight, it is called Fright At The Fort. Its an old cement fort near here that used to guard the riverbank. One of the main sponsors is Stephen King and his radio station, if that tells you just how scary it is.

I was adamantly opposed to taking Ciarra, thought for sure she couldnt handle it. My best friends 10 yr old was too scared to go, if that tells you anything. This place is creepy in the daytime, nevermind full of ghouls and goblins at NIGHT.

As usual, she WANTED to go. Told me she would protect me and wouldnt be scared.

The first thing, a guy comes charging through the line with a chainsaw, it was kinda scary...she backed up and sorta flinched, but then leaned over and laughed in his face...

Then we saw this cowboy looking guy, he was outside, while we waited in line. She was teasing him, calling him "Hey cowgirl!" and he called her over. He lassooed her and then let her lasso him and fire his gun. She LOVED it, and she actually lassooed him pretty well! Wendy took a picture...and, well....creepy. The guy looks completely see through.

Ghouls, goblins, witches and ghosts...nothing scared her. She screamed BOO at the few who rattled her a bit. She actually jumped one of them when she screamed once, which was incredibly funny to see.

The kid is brave, no doubt about it.


I had a BIG debate the other day on the DSTNI list. The DOCTOR that runs the list actually told a worried new mom that "kids with DS are not on a par with normal kids". WHAT!? I was so angry to hear that.

Inevitably, I mentioned the things Ciarra can do that ARE "on a par" (While pointing out what "on par" means equal, as valuable) People take offense everytime someone points out the things that they themeselves will say are "high-functioning" in the next sentence. It is difficult to give hope to a new mom being told that her baby CANT or WONT do things and not give specific examples. And then be seen as a braggart. Sometimes, I feel ostracized with the DS community, because I am "not allowed" to brag about the things I am excited about. I have learned to not talk so much about the things she is doing and focus instead on ability in general.

I absolutely fight for the rights of all kids with DS, but if we are going to be fair, as a community, we need to start seeing ourselves as we seek out "high-functioning" role models. We ALL want to share every high-functioning story we read, from Karen Gaffney to Sujeet & Carrie. They give us hope. I was saying in my back and forth with the doc, basically, if we are going to, as a community, continue to point out gleefully the ones who are highly successful and put them on pedestals, then we better be prepared to have some intellectual honesty regarding our OWN issues. We cant tell the world that it doesnt matter until we, ourselves, stop making it seem that the "cream of the crop" are somehow DIFFERENT than our OWN kids. Yes, we aspire for the best for them all. Yes, some will find their ways more easily. YES, we need those role models. Any of us that have ever blogged or written about or posted a story about a person who has done something the rest of the world would be surprised by are JUST as responsible for this.

I talk about my daughter's ability. If she were working on potty training at 9, you can bet I would be bragging when she got that, too. Im happy for her when she gets stuff, we all are. I dont much care what things she is doing, just that she is doing them. Im proud of her. I have heard the term high-functioning SO many times. I have USED the term myself. You will NEVER catch me saying or thinking "low-functioning", because it is abhorrant. But in the eyes of the world, we use labels. Ciarra is "high-functioning" and thats ok with me. I know that gives people hope sometimes. But it doesnt mean that I or ANY other person sees her as more valuable. She is NOT. Cindy and I have had this discussion so many times, and I wish more people could see it without all the crap that inevitably comes along. The truth of my child is what it is, the truth of HER child is what it is. They bring different things to the table, they are valuable in SO many ways. Ciarra might be the one doing the talking someday, but you can bet your butt she will be thinking about the gentleness and heroics of the Noahs that dont have the same voice. ALL of our kids bring something to the table. In our rush to use the right words and not offend anyone, we are talking out both sides of our mouths, often. We CANNOT be so quick to point out the "superstars" and then chastise someone for wanting to see that in their own kid. If we dont admit that we hope and pray for it for them, we are full of poop. If we make people who do talk about the things their kids do, even when those things are deemed "high-functioning" then we have our own prejudices to deal with. I hope this makes any sense at all. It is very hard to articulate well.

All I want is to not feel like somehow we dont fit the DS mold. My dd has DS, regardless of where on the spectrum she falls, her abilities and disabilities should not define her. There is no magic *I* performed to make my daughter do the things she does. There was no magic pill, no therapy, she was born with a certain ability to dodge some of the big DS issues. It was not me trying harder that made her this way. Although, I completely believe it was in large part that I didnt hold her back and believed in her that those God-given abilities shined through. She was lucky, her heart healed itself. No gastro issues. Poor vision and chronic sinus crap, but otherwise very healthy. I dont use the term "lucky" because that implies otheres werent lucky. She is who she is.

I think if we are going to talk about accepting people for who they are, then that means the ones on both ends of the spectrum. I love my friends kids who are less able to make their way in the world. Not because of DS, but because they are people. I dont define them by what they can do. I am thrilled mine can do what she does. But it doesnt define her. It just hurts when people discount it in so many ways, either by saying it cant be done or she must have a "mild case" of DS. She is precious to me for so many reasons, not the least of which is the many ways she teaches me about my own prejudices. Blanket statements dont apply to ANY of our kids. All I want is for my own child to be seen for who she is, and that is not dictated by her number of chromosomes.

baby boy

just shot his first deer. Not sure how I feel about it. They just called, apparently he took it in one shot, cleanly. It is a big buck for a little kid, 6-8 points they said.

I am happy for him, and for his Dad, who has been teaching him about hunter safety and respecting the hunt and the animals since birth.

I am sad because a beautiful animal died.

I am happy because the meat will be donated to feed a hungry family.

His voice breaks now when he talks, he is almost taller than I am. And today he shot his first deer. No more baby boy screaming and crying when Dad brings home a deer. He used to cry, telling daddy the deer was "hewt Daddy, wet him go" much so that daddy used to take the deer to a friends house because Jesse was SO upset. Now he is fine enough with it to shoot it himself.

I asked him last night, driving home from football, if he was sure he was ready to kill a living thing. He looked at me like I was crazy. "You dont have to do it just because dad loves hunting, y'know" He replied "Mom, *I* love hunting too." So there it is. No more baby boy. Almost a man.

Friday, October 19, 2007

"They are SO happy"...but who is THEY??!!

I have spent the last 9 years of my life trying to do my part to dispel some of the myths of DS. People first language was a biggie, that seems mostly accomplished now. No one in our lives wants the lecture, so "Downs kid" just doesnt come out of their mouths lol. There is still one nurse who calls Ciarra "A DOWNY"...after repeated requests not to. Recently, I called her supervisor. Let's see what she has to say to him on the matter?

Setting the bar for her has been a bigger challenge. It was one I learned not to do early on. She taught me to smarten up quickly the day I was in the living room on the phone and her barely 2 year old self dug oven mitts out of the drawer, opened the oven, took out the cookies, placed them carefully on top of the stove and announced..COOKIES DONE! Once I chased my wildly beating heart back into my chest, I sat staring at her, looking at her tiny hands again and again, wondering HOW she knew to use the mitts. HOW I could be SO stupid as to leave her anywhere near a hot oven. But even more, HOW on God's green Earth I could have ever believed she wasn't SMART!? Oh boy, that'll teach ya! I didn't know whether to beat her or hug her. In the end, of course, I hugged her. Then I bought an oven lock. But I never underestimated her again, and I refuse to allow anyone else to. This year she is in a regular third grade, with no aide. She does 3rd grade work for the most part. She is not treated very much differently than other kids her age. She sets her own bar, and she sets it high.

The biggest challenge for me has been overthinking her relationships. I wanted her to dodge that awful loneliness that I read so much about. I wanted her to have friends. I wanted...inexplicably, for her to be the HAPPY little girl with DS that everyone told me she would be. You know, "[i]they[/i] are ALL such HAPPY little people". That statement bugged the snot out of me. "They", who?! Ciarra wasn't a they. She was her, she, an individual. She was not a member of some subspecies. She wasn't in a herd or part of a pack. She..SHE...was my daughter. A daughter prone to smiling, to be fair. Ok, a daughter prone to...happiness. Ok, ok, so she was HAPPY. Not in the condescending, drawn out "Haaaaaaaaaaappy" kind of way so many people told me she would be when she was born and the diagnosis bestowed upon her. Not THAT kind of happy, not the clueless, dont-know-better kind of happy they meant. Ciarra was happy just living. She smiles a lot. She is...happy. She sort of exudes...happy. But, she can be pretty darn UN-happy sometimes too. She has a temper. She has even learned some words to show just how unhappy she can be. "Butthead" is a word that comes to mind.

But overall, this kid giggles in fits of laughter for a good part of her day. She is animated, blessed, blissful, blithe, captivated, cheerful, chipper, chirpy, content, convivial, delighted, ecstatic, elated, exultant, flying high, glad, gleeful, gratified, jolly, joyful, joyous, jubilant, laughing, light, lively, merry, mirthful, overjoyed, peaceful, peppy, perky, playful, pleasant, pleased, satisfied, sparkling, sunny, thrilled, tickled, tickled pink, up, upbeat, easy, easygoing, lighthearted, fanciful, resilient, sprightly, get the picture. Ok, darnit...she's HAPPY. ;)

This morning, Ciarra got all dressed up in her new knit dress and leggings from Gap. Put on her little black shoes with the sequins on them, and set out to make a Birthday card for her best friend. Today is that friend's Birthday, she turns 10. She is having a big pool party on Sunday, to which Ciarra is invited, along with a dozen or so other young girls. But today is special. It is her real Birthday. And she called last night, asking if Ciarra could get off the bus today after school to go do something fun to celebrate. Just the 2 girls and Jade's Dad. Ciarra has been, at times, jealous of the other kids who her BFF plays with. This morning, with a glint in her eye, she said "Just me?" And I said yes, just you. "Not Haley? Just me, no other kids?" Nope, just her. She smiled one of the biggest smiles I have ever seen. And I realized just how much it meant to her to be THE ONE, chosen because she is the BEST friend. It struck me how that is all any of us want, to be special to someone, to mean something. To be HAPPY.

The big bus lumbered down our road and pulled to a stop at the end of our driveway. Ciarra stood looking for a second, scanning the windows, looking for something. and then there it was. Jade was in the window, smiling back at her. Ciarra's hand shot out, pointing straiught at her "Jade, I'm going to YOUR house after school. JUST ME. Best friends!" I saw jade smile back, then stand up to make room for Ciarra beside her. Ciarra likes the window seat, and Jade is a good friend to let her have it. The last I heard was Ciarra excitedly telling the bus driver, "I'm going out with Jade, it's her Birthday. Im SO HAPPY."

Ok, baby girl. Happy is one thing your Mom can live with.

Thursday, October 18, 2007

What is Inclusion?

Inclusion is not just a place a kid goes. I used to kind of think that way, like...if shes in that classroom, with typical kids, THAT is inclusion. But it wasnt. Inclusion is sort of a state of mind, a commitment to educating a child with a disability while seeing them as completely capable individuals with their own strengths within the classroom. A child might be IN a classroom that calls itself Inclusion, but still not really be INCLUDED.

Inclusion means someone is taking pains to make him a part of the community within the classroom, and holding him accountable too, to being a member of that community. For instance, Ciarra has long been IN an Inclusive classroom. But it wasnt working, she was withdrawing a bit the last 2 yrs, pulling away, sort of afraid to emotionally open herself to the other kids. Intimidated, I thought. Her teacher was wonderful...but....she clearly and fully saw Ciarra as different, and not in a way that made her want that challenge. She assumed things couldnt happen that could have, with care. She loved Ciarra, and so she tended to baby her a bit. To be fair, there was no program around her that supported her Including Ciarra, either. "Here is this kid, educate her" was how it happened.

This year, we went into third grade with a strong belief that what we were seeing before was NOT Inclusion. It was a place, plain and simple. There was no scaffolding to support any of them, Ciarra, the teacher, or the other kids. If Ciarra turned away from other kids or was intimidated by them, then that was fine, "we wont push". THIS year, we have set about creating an Inclusion atmosphere. It is in every second of the daily planning, and it took a LOT of work and a LOT of faith by the staff (and by ME) that it was at least worth a shot. This morning I had my first monthly meeting. And I was told, point blank, [i]we didnt believe this could happen. But it IS happening, in fact it is awesome![/i]

A teacher committed to Inclusion will make it work. She will find things the children have in common, whatever those may be. She will see at least ONE thing in your child he can be successful at and build on that. An example for a little older kid would be...if a child is a good photographer, he/she might take photos for a group project. His or her contribution is valuable, important, and equal.

COMMUNITY is vital to Inclusion. Creating a community in which the child feels valuable, capable, smart, is so important. A good teacher will find those things and let him shine. She will encourage friendships by assigning tasks to groups, by having your child choose 2 friends to take the lunch money to the office with, encouraging friendships along the walk, she will ask kids to make goals that involve personal attributes...things they can do that make the community work better. Like manners, helping one another, being a real friend. She will teach the children to give him time to respond when they speak to him, and find ways to encourage them to need to speak to him within the context of the classroom. "Johnny, are you having white milk or chocolate at lunch today?" and wait for his reply.

If you arent sure about how your teacher will handle this stuff, go to the guidance counselor and ask her to research Lunch Buddies or Circle of Friends. Elicit the help of everyone there to make him feel successful and WANT to engage. Ask the Spec Ed teacher to brainstorm with the reg ed teacher, to come up with a plan. Often, it isnt the placement that is the issue, it is the scaffolding around that placement.

Is it the Ginkgo Biloba?

Ciarra has now been taking GB (2.5 mg per pound) for about 5-6 months on a regular basis. Since she learned to swallow pills, it has been a daily thing.

In June, she had NWEA testing, state testing to measure her ability. She did "ok", but was obviously not completely on track academic wise. SHe has been staying close, but slightly behind, her peers for a year or so now. In some areas, she is very much on track, in others, such as math, she has to work her cute little butt off to be in range.

In September, she was retested on the NWEAs. She jumped 40 points in math! 4 months had elapsed, 4 months of summer, no summer school. Basically vegging, the park, hanging out with mom and a babysitter while mom works.

So what is the difference? What caused that big a jump in scores? Well, either one or the other test was flawed, or something is going on here. She has been back in school about a month and a half now. One after another after another, people approach me to tell me that there is something going on here.

"She has more depth to her language."
"She GETS it!"
"What is going on, she seems like a different person?"
"I cant put my finger on it, but Ciarra has matured in huge ways..."

Yeah. Something is definitely going on here.

I wont say 100% it is the GB. But you know what? This doubting Thomas is starting to believe it.

A friend asked about the Ginkgo Biloba, what I knew about it. So I'm guessing others may be curious, too. Here is what I sent to her:

Hi Cindy, I have done SO much research on Ginkgo. The active ingredient in it is Bilobalide. Have you seen the studies done this summer at Stanford? Craig Garner is one of the lead researchers, and he and I have talked at length. Safety was my biggest concern, and so I researched for almost a year before we decided to go for it. Craig's study was the deciding factor. This is gonna be a LONG email, so bear with me, k? The youngest kids I know taking it right now are about 2, maybe slightly younger. PLEASE talk to your doc. Now Foods is a good brand, can tell you where you can buy it locally. Good luck!

PS this site (I really dislike the name) explains GB in VERY English terms.

Warnings, Interactions, Adverse Effects

During the past 20 years, an estimated 2 billion daily doses (120 mg) of ginkgo have been sold. The most important potential clinical problem with ginkgo is caused by its inhibition of the platelet-activating factor; this makes the use of ginkgo in conjunction with warfarin (Coumadin), aspirin, or other antiplatelet agents a matter of clinical judgment. A recent safety study37 of the interaction of ginkgo and warfarin showed no change in the international normalized ratio. Ginkgo should be discontinued between 36 hours and 14 days before surgery, based on either pharmacokinetics or consensus opinion.38,39

ME: (GB can make blood flow faster, so you have to monitor for injuries or be extra careful prior to surgery. ALWAYS talk to your doc before you start GB)

Herbal medications that may increase the risk of bleeding if used concurrently with ginkgo include the following: feverfew, garlic, ginseng, dong quai, red clover, and other natural coumarins. Several case reports of bleeding complications associated with ginkgo use include subdural hematoma,40,41 subarachnoid hemorrhage,42 intracerebral hemorrhage,43 and hyphema44; the causality of these events has not been established. One case report45 discussed an elderly patient who developed elevated blood pressure while taking a thiazide diuretic and ginkgo. The patient's blood pressure returned to normal when both substances were discontinued. This reaction is paradoxical in light of the known pharmacologic actions of these agents.45

ME: (To date, NONE of the 50 plus families who have tried it have seen a single bleeding issue.)

The unprocessed ginkgo leaf contains ginkgolic acids that are toxic. Hypersensitivity to ginkgo preparations is a contraindication to use. Ginkgo is generally well tolerated, with side effects being rare, usually mild, and including nausea, vomiting, diarrhea, headaches, dizziness, palpitations, restlessness, weakness, or skin rashes. Although no studies have been performed to support any restrictions on the use of ginkgo during pregnancy or lactation, it seems prudent not to administer ginkgo in the absence of any data.1,2

ME: (I researched, called, emailed EVERY company whose product I tried. I did not settle on any of them until they told me in human terms EXACTLY how much ginkolic acid was in their particular product. If they cat tell you or say they dont know, do NOT use that product. GOOD ingredients and their amounts should be looked for: 24% ginkgo flavone glycosides and 6% terpene lactones)

Nutrivene puts out a brand specifically made for kids with DS, I believe they send free samples too:


For patients who have memory problems and dementia, the dosage of ginkgo is 120 to 240 mg daily, taken in two to three doses. The dosage for patients who have tinnitus and peripheral vascular disease is no more than 160 mg per day, taken in two or three doses. An initial period of six to 12 weeks is recommended to assess the effectiveness of ginkgo, although results have been seen as early as four weeks.13,46,47 The monthly cost for the usual daily dose of 120 mg is approximately $15 to $20.

ME: (the suggested dosage for kids with DS is 2.5 mg per pound of body weight. My understanding is it isnt a great idea to exceed 240 mg, although Ciarra is still quite small and only gets 180 mg daily now. We give it to her at bedtime, one 120 mg capsule, and one 60 mg one. We tried Liquid GB, YUCK. Mixing it with orange juice helps, or a VERY strong koolaid concoction. Grape, the pharmaceutical companies tell me, is the best taste to mask it. )

GB in the news:
WASHINGTON (Reuters) - An old drug once used to study epilepsy can help improve learning in mice with a form of Down syndrome and also might help people, U.S. researchers said on Sunday.

The beneficial effects the drug, called pentylenetetrazole, or PTZ, continued for two weeks after treatment. This suggests the drug, like some other psychiatric drugs, can make long-term changes in the brain.

The finding, published in the journal Nature Neuroscience, also can help scientists understand what causes the mental retardation seen in Down syndrome patients.

"This treatment has remarkable potential," said Craig Garner, a professor of psychiatry and a director of the Down Syndrome Research Center at California's Stanford University.

"So many other drugs have been tried that had no effect at all," Garner said in a statement. "Our findings clearly open a new avenue for considering how cognitive dysfunction in individuals with Down syndrome might be treated."

Down syndrome is the most frequent genetic cause of mental retardation and occurs equally around the world, in about one in every 800 births. About 5,000 children born in the United States each year have Down syndrome.

It is caused by the presence of a third chromosome, known as chromosome 21. Most people have two copies of each chromosome and the additional activity of the genes on the third copy of chromosome 21 is believed to cause the symptoms of Down syndrome.

Symptoms range from moderate mental retardation to very mild disability. Many Down's patients also have health problems, especially heart trouble.

Fabian Fernandez, a student in Garner's lab, was exploring the possibility that the brains of Down's patients are too strongly affected by a chemical called GABA, a neurotransmitter, or message-carrying chemical, that stops brain cells from becoming too excited.


"In general, learning involves neuronal excitation in certain parts of the brain," Garner said. "For example, caffeine, which is a stimulant, can make us more attentive and aware, and enhance learning."

Inhibiting this process can interfere with learning.

PTZ does this by causing more GABA to be available in the brain. Overdoing this process can cause seizures and PTZ was once used to study epilepsy. But it is no longer approved for use in people.

Fernandez gave daily doses of PTZ to mice specially bred to have many of the same genetic differences that cause Down syndrome.

"My idea was that it might be possible to harness this excitation effect ... to benefit people with Down syndrome," Fernandez said.

He gave the drug to the mice and then gave them a maze test. Normal mice tend to explore first one arm of a T-shaped maze and then the other, while the Down mice are more random in their exploration.

But after 17 days of treatment, the drug made the Down mice explore and learn more like normal mice.

"Somehow the drug treatment creates a new capacity for learning," Garner said.

More tests showed that daily doses were required for several days before any effect was seen, and the mice acted more normally for up to two months after the drug was stopped.

That may suggest the drug is changing brain structure, Garner said. His team may explore testing the drug or a similar compound in people as a possible treatment for Down syndrome.

Ginkgo could aid memory formation
03 March 2007
From New Scientist Print Edition. Subscribe and get 4 free issues.


MEMORY could be boosted in people with Down's syndrome using a ginkgo tree extract.

People with Down's syndrome often find it difficult to remember facts and events. This could be because neurons in the hippocampus - an important area of the brain for memory formation - are overinhibited by a neurotransmitter called GABA.

The ginkgo extract, called bilobalide, and another drug called pentylenetetrazole (PTZ), both block GABA. In a mouse model of Down's syndrome, mice that drank PTZ in chocolate milk, or received an injection of bilobalide, once a day for 17 days did significantly better at memory tests, such as recognising which of two objects they had not seen before. The improvements lasted for up to three months after the mice stopped taking the drugs, suggesting that they had caused long-term changes in brain activity (Nature Neuroscience, DOI: 10.1038/nn1860).

"With time you're teaching the brain to suppress the excessive inhibition in the hippocampus," says Craig Garner of Stanford University in California, who led the study. He says PTZ has the most immediate potential because it has already been rigorously tested in humans and can be taken orally.

From issue 2593 of New Scientist magazine, 03 March 2007, page 17

this one is interesting but a bit pessimistic:

In a study that could hold promise for children with Down Syndrome, Stanford University researchers have found that a long-discredited drug can improve the mental abilities of mice with the genetic disorder, which causes mental retardation in humans.

The mice were better able to navigate mazes and recognize new objects after receiving the drug, and the gains continued for months after treatment stopped. The researchers ultimately hope to test the drug, known as pentylenetetrazole, or PTZ, in people with Down syndrome.

"It's a very exciting piece of work," said David Patterson, a Down syndrome researcher at the University of Denver who was not involved in the study. "This is really the first time that I've seen such a striking effect in terms of reversing the memory and learning difficulties the mice have."

Both Patterson and the Stanford researchers caution, however, that the research is preliminary and it is too early to tell if the drug will be successful in people. Although PTZ was once used as a heart stimulant, it was taken off the market and now is used only in research. The process of doing further tests and getting government approval to use it as a Down syndrome treatment could take more than a decade.

Quality of Life Improvement?
A genetic disorder caused by an extra copy of the 21st chromosome, Down syndrome occurs in one of every 733 live births. More than 350,000 Americans have the condition, according to the National Down Syndrome Society. The disorder typically causes mild to moderate mental retardation and can increase the risk for Alzheimer's disease, leukemia and congenital heart defects.

Because people with Down syndrome are now living much longer, with a typical life expectancy of 56 years, researchers increasingly are studying ways to improve their quality of life. Some studies have examined whether Alzheimer's drugs could improve their mental abilities, with little success, said Craig Garner, codirector of Stanford's Down Syndrome Research Center and one of the authors of the new study.

In the study, published online Sunday by the journal Nature Neuroscience, mice genetically engineered to display the symptoms of Down Syndrome were fed 17 daily doses of milk containing PTZ. After treatment, they performed as well as "normal" mice in running mazes and recognizing objects for up to two months.

It took some time for the drug to work -- an effect seen with many psychiatric drugs, including antidepressants. The mice also received two other compounds similar to PTZ, which worked about as well. The "normal" mice did not see any cognitive benefit from the compounds.

Releases the Brakes
Stanford researchers believe that PTZ and the other compounds may work because they block a neurotransmitter that slows brain function. That neurotransmitter is believed to work too well in Down syndrome patients, hampering learning and memory.

Garner said these compounds help "release the brakes" on chemical impulses in the brain that drive cognition. "If you drive the car with the brake on, you don't get anywhere," he said.

The Stanford researchers want to continue studying PTZ, rather than the other compounds used in the study, because it was once approved for use in humans.

The drug pentylenetetrazole was used as a heart stimulant and has been used experimentally to study seizures. When used in high doses, it can cause convulsions. The U.S. Food and Drug Administration removed the drug from the market in 1982 because it was not effective in treating disease and could be harmful, Garner said. However, Garner believes the drug can be safely used in very small doses.

"We think we're slowly being able to understand what's causing reduced cognitive ability in people with Down syndrome," he said, and there are new approaches and strategies that could improve their quality of life. Still, he added, "This is not a cure. We're not making a kid with Down syndrome normal. There are limits to what medicine can do.

Drug shows promise for Down syndrome
LOS ANGELES, Feb. 26 (UPI) -- Researchers at California's Stanford University report a drug known as PTZ can improve the learning and memory of lab mice with Down syndrome.

After receiving once-daily doses of PTZ, or pentylenetetrazole, researchers found the Down syndrome mice could recognize objects and navigate mazes as well as normal mice, The Los Angeles Times reported.

The improvements lasted up to two months after the drug was discontinued according to a report by the researchers in the journal Nature Neuroscience.

Lead author Craig C. Garner, a professor at the Stanford School of Medicine, told the Times that after more preliminary studies his lab will prepare for conducting human trials.

Down syndrome is the leading cause of mental retardation. It results from an extra copy of chromosome 21.


and Craig's entire scientific report, with his permission

Published online: 25 February 2007; | doi:10.1038/nn1860
Pharmacotherapy for cognitive impairment in a mouse model of Down syndrome
Fabian Fernandez, Wade Morishita, Elizabeth Zuniga, James Nguyen, Martina Blank, Robert C Malenka & Craig C Garner

Department of Psychiatry and Behavioral Sciences, Nancy Pritzker Laboratory, Stanford University, Palo Alto, California 94304-5485, USA.

Correspondence should be addressed to Craig C Garner

Ts65Dn mice, a model for Down syndrome, have excessive inhibition in the dentate gyrus, a condition that could compromise synaptic plasticity and mnemonic processing. We show that chronic systemic treatment of these mice with GABAA antagonists at non-epileptic doses causes a persistent post-drug recovery of cognition and long-term potentiation. These results suggest that over-inhibition contributes to intellectual disabilities associated with Down syndrome and that GABAA antagonists may be useful therapeutic agents for this disorder.

Ts65Dn mice, like patients with Down syndrome, show comprehensive deficits in declarative learning and memory1. Previous research suggests that these cognitive deficits are not due to gross abnormalities in Ts65Dn neuroanatomy2, but rather derive from selective decreases in the number of excitatory synapses in the brain3 and corresponding changes in synaptic connectivity4, 5. These findings are supported by in vitro studies showing that synapses in the Ts65Dn hippocampus can express normal long-term potentiation (LTP), but that excessive GABA-mediated inhibition impairs its induction6, 7. Assuming that triplicated genes found in Ts65Dn mice shift the optimal balance of excitation and inhibition in the dentate gyrus (and perhaps other brain regions) to a state in which excessive inhibition obscures otherwise normal learning and memory, we theorized that subtly reducing the inhibitory load in the Ts65Dn brain with GABAA receptor antagonists might rescue defective cognition.

After establishing that the pattern of cognitive impairments in Ts65Dn mice (3–4 months of age) matched those observed in children and young adults with Down syndrome (Supplementary Fig. 1 online)8, we then assessed whether a non-epileptic dose of the noncompetitive GABAA antagonist picrotoxin (PTX; intraperitoneal (i.p.), 1.0 mg per kg body weight, a dose used extensively in classic rodent studies on memory consolidation)9 could improve Ts65Dn object recognition memory. Although pilot studies indicated that a single dose, 1 d before testing, did not rescue Ts65Dn object recognition performance, a chronic 2-week daily regimen had clear beneficial effects (Supplementary Fig. 2 online). We therefore initiated a 4-week longitudinal crossover study. Here, wild-type and Ts65Dn mice (3–4 months of age) were randomly assigned to groups receiving daily i.p. injections of saline or PTX (1.0 mg kg-1), and were submitted to four weekly repetitions of object recognition testing, in which the animals were serially presented with four different object sets. At the 2-week midpoint of this experimental period, wild-type and Ts65Dn mice that had been receiving saline were randomly segregated into groups that either continued to receive daily saline injections or began daily injections of PTX. Conversely, wild-type and Ts65Dn mice that had been chronically administered PTX in the first 2 weeks of testing were now switched onto a saline regimen. Alongside saline and PTX, we also evaluated the efficacy of bilobalide (BB; i.p., 5.0 mg kg-1)10, a PTX-like compound that could be safely administered for the whole 4-week experimental period.

Not surprisingly, Ts65Dn mice injected with saline during the first 2-week period of novel object recognition testing, or those receiving saline over the course of the whole experimental period, did not show novelty discriminations significantly above chance (DI > 0; t16 = 0.8169, P > 0.4260, and t40 = 1.524, P > 0.13, respectively; Fig. 1). In marked contrast, Ts65Dn mice treated with PTX during the first or second 2 weeks showed normalized object recognition performance, as did those that received BB throughout the study (Fig. 1). Moreover, unexpectedly, Ts65Dn mice that had undergone chronic PTX administration during the first 2-week period of novel object recognition testing maintained their improved performance when evaluated 1 and 2 weeks later (Fig. 1 and Supplementary Table 1 online). Notably, wild-type and Ts65Dn mice did not differ in total object exploration time, invariably spending 25% of their experimental sessions investigating objects (Supplementary Table 2 online).

Figure 1. PTX and BB rescue Ts65Dn performance in the novel object recognition task.

Shown are DIs of wild-type and Ts65Dn mice involved in a 4-week crossover study. (a) In the first 2 weeks, untreated and saline-treated Ts65Dn mice did not show a preference for novel objects (DI > 0; t17 = 0.7737, P > 0.4497, and t16 = 0.8169, P > 0.4260, respectively), whereas PTX- and BB-treated Ts65Dn mice discriminated object novelty (t9 = 4.083, P < 0.003; and t15 = 4.390, P < 0.001). (b) Saline-treated Ts65Dn mice given PTX during the second period of object recognition testing (Sal PTX) started out with the same deficits as those continuing to receive saline (Sal Sal), suggesting that there was no sampling bias for animals in later treatment groups. (c) During the second 2 weeks, saline-treated Ts65Dn mice switched to PTX discriminated novel objects similarly to wild-type (WT) mice (t8 = 3.756, P < 0.006). PTX-treated Ts65Dn mice switched to saline in the second 2 weeks also maintained their ability to discriminate novel objects (t6 = 3.250, P < 0.02), suggesting a persistent change in brain function had occurred. (d) Compilation of WT and Ts65Dn mouse novelty DIs with no treatment or treatment with saline, PTX or BB, showing that PTX and BB normalized Ts65Dn object recognition memory (F5,187 = 5.204, P < 0.0002; all post hoc comparisons with Ts65Dn control, P < 0.05; all other post hoc comparisons, P > 0.05). Control observations were pooled from untreated and saline-treated (PTX-naive) mice, and PTX observations from mice given PTX in either the first or second 2 weeks. DIs for each condition are tabulated and defined in Supplementary Table 1. Error bars, s.e.m. All experimental procedures were approved by the Stanford University Institutional Animal Care and Use Committee (IACUC) and conducted in compliance with the US National Institutes of Health Guide for the Care and Use of Laboratory Animals. See Supplementary Methods online for experimental details.

Full Figure and legend (38K)

To extend these findings, we next evaluated the effects of pentylenetetrazole (PTZ), a noncompetitive GABAA antagonist with a long history of medical use11, on declarative memory in the novel object recognition test and in a modified spontaneous alternation task. To mimic the most typical route of drug administration in humans, wild-type and Ts65Dn mice were administered PTZ (3.0 mg kg-1 in milk; a non-epileptic dose that can be safely given to rodents for up to 1 year)12 via voluntary oral feeding (see Supplementary Methods online). In total, wild-type and Ts65Dn mice received 17 daily doses of milk or a milk-PTZ cocktail and were subjected to two repetitions of novel object recognition testing, or to three daily T-maze sessions at the tail end of the treatment regimen (Fig. 2). In agreement with previous results, milk-fed Ts65Dn mice showed an inability to discriminate object novelty in the object recognition task. PTZ-treated Ts65Dn mice, by contrast, showed discrimination indices (DIs) on a par with those of wild-type mice (Fig. 2a and Supplementary Table 1). In the spontaneous alternation task, milk-fed Ts65Dn mice also showed a pattern of impairment similar to that of untreated Ts65Dn mice. However, mice receiving oral PTZ showed normal levels of alternation of 70%13 (Fig. 2c,d and Supplementary Table 3 online). Notably, wild-type and Ts65Dn mice and those on PTZ did not differ in object exploration time in the object recognition task and did not show arm biases in the spontaneous alternation task (Supplementary Tables 2 and 4 online).

Figure 2. PTZ elicits long-lasting cognitive improvement in Ts65Dn mice.

Novelty discrimination indices of wild-type (WT) and Ts65Dn mice directly (a) or 2 months (b) after an 2-week treatment with PTZ. (a) Although Ts65Dn mice on milk did not show a net novelty preference (t17 = 1.099, P > 0.2 , those receiving PTZ performed as well as WT mice receiving either milk or PTZ (F3,71 = 3.356, P < 0.03; all post hoc comparisons with Ts65Dn on milk, P < 0.05; all other post hoc comparisons, P > 0.05). (b) The normalized object recognition memory shown by Ts65Dn mice immediately after treatment was sustained 2 months later (F3,38 = 5.134, P < 0.005; all post hoc comparisons with Ts65Dn previously on milk, P < 0.05; all other post hoc comparisons, P > 0.05). Discrimination indices are tabulated in Supplementary Table 1. (c,d) Alternation scores (%) of WT and Ts65Dn mice across 3–6 sessions of testing in the spontaneous alternation task. In contrast to WT mice, which showed optimal alternation percentages (70%), untreated or milk-treated Ts65Dn mice showed significantly lower alternation percentages (t83 = 5.051, P < 0.0001). However, PTZ normalized Ts65Dn alternation scores to WT levels (F3,272 = 5.998, P < 0.0006; all post hoc comparisons with Ts65Dn control, P < 0.05; all other post hoc comparisons, P > 0.05). Alternation scores for each condition are tabulated and defined in Supplementary Table 3. Error bars, s.e.m.

Full Figure and legend (45K)

To better define the longevity of Ts65Dn cognitive improvement after GABAA antagonist administration, we subsequently evaluated Ts65Dn mice in the novel object recognition task, exactly 2 months after the termination of a 17-d oral PTZ regimen. Consistent with the post-drug recovery in cognition observed with PTX, Ts65Dn mice that had been administered PTZ showed normal object recognition performance at this time point (Fig. 2b).

The ability of animals to learn and remember is thought to be encoded at the synaptic level, and it involves the ability of synapses to undergo long-term changes in synaptic strength. Indeed, recent work has provided compelling evidence that LTP in the hippocampus occurs during learning14 and is required for memory15. Accordingly, we assessed LTP in the dentate gyrus, the structure that shows the most pronounced inhibition-related pathology in the Ts65Dn brain4. Specifically, we examined, at 3–4 weeks after drug treatment (a time window congruent with performance improvement by Ts65Dn mice in the novel object recognition task after PTX treatment), whether LTP deficits at perforant path synapses in Ts65Dn mice had been rescued by chronic oral PTZ administration. In agreement with those behavioral findings, we found that PTZ-treated Ts65Dn mice showed normalized LTP in the dentate gyrus 1 month after the cessation of drug administration (Fig. 3a–d; P < 0.05). We then assessed the relative permanence of this LTP rescue in Ts65Dn mice, and found that the Ts65Dn dentate gyrus continued to show greater LTP in PTZ-treated mice than in milk-fed ones for up to 3 months after the drug regimen (albeit diminished relative to that of wild-type mice) (Fig. 3e–h; P < 0.05), in keeping with Ts65Dn behavioral improvement 2 months after PTZ administration.

Figure 3. PTZ rescues LTP at medial perforant path–granule cell synapses in Ts65Dn mice.

(a,b) Averaged data for LTP induced in wild-type (WT; a) or Ts65Dn mice (b) treated with milk (WT milk LTP: 115 4.3%, black circles, 2 mice, n = 7 slices; Ts65Dn milk LTP: 104 3.2%, black squares, 2 mice, n = 7 slices) or PTZ (WT PTZ LTP: 110 2.9%, gray circles, 3 mice, n = 9 slices; Ts65Dn PTZ LTP: 113 2.1%, gray squares, 3 mice, n = 9 slices), evaluated 1 month after the cessation of drug administration. (For comparison, data from milk-treated WT mice are also shown in b (white circles).) (c,d) Cumulative probability plots of LTP observed in WT (c) or Ts65Dn mice (d) fed milk (black line) or PTZ (gray line) after high frequency stimulation (HFS). (e,f) Averaged LTP graph for WT (e) or Ts65Dn mice (f), 2–3 months after discontinuation of milk (WT milk LTP: 117 3.6%, black circles, 5 mice, n = 14 slices; Ts65Dn milk LTP: 108 2.1%, black squares, 3 mice, n = 12 slices) or PTZ treatment (WT PTZ LTP: 115 2.9%, gray circles, 5 mice, n = 16 slices; Ts65Dn PTZ LTP: 113 2.1%, gray squares, 4 mice, n = 13 slices). (For comparison, data from milk treated WT mice are also shown in f; (white circles).) (g,h) Cumulative probability plots of average LTP for WT (g) or Ts65Dn mice (h) previously fed milk (black line) or PTZ (gray line). Sample traces in a,b,e,f are averaged from ten consecutive field excitatory postsynaptic potentials (fEPSPs) taken at the indicated time points. Accompanying scale bars are 1 mV, 5 ms. Values are expressed as mean s.e.m.

Full Figure and legend (96K)

In summary, we have demonstrated that chronic administration of noncompetitive GABAA antagonists (at non-epileptic doses) ameliorates cognitive deficits in Ts65Dn mice for a period of months extending beyond the window of drug treatment. Likewise, we have shown that drug-mediated improvements in Ts65Dn learning and memory are accompanied by rescue of impaired LTP, the most prominent synaptic correlate of learning and memory in the hippocampus. These results point to over-inhibition, in at least some brain regions, as one possible mechanism that reduces cognitive performance in a mouse model of Down syndrome (see Supplementary Discussion online), though further experimentation will be necessary to more directly test this mechanism and to elucidate the neuroadaptations that are orchestrated in response to repetitive GABAA antagonist administration. The results also highlight the potential clinical utility of noncompetitive GABAA antagonists in Down syndrome (including BB and PTZ), providing one window into how cognitive impairment in Down syndrome may be pharmacologically mitigated over time (see Supplementary Discussion online).

Note: Supplementary information is available on the Nature Neuroscience website.

Author contributions
F.F. designed and executed all behavioral experiments with the assistance of E.Z. and J.N. W.M. performed all of the electrophysiology experiments. M.B. provided technical expertise in breeding and genotyping. F.F., C.C.G., W.M. and R.C.M. wrote and edited the manuscript.


Received 3 January 2007; Accepted 31 January 2007; Published online: 25 February 2007.

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We thank the Down Syndrome Research and Treatment Foundation (DSRTF), the Hillblom Foundation, the US National Science Foundation (NSF), the US National Institute of Health (NIH), Jax West Laboratories, the Stanford Down Syndrome Center and W.C. Mobley for their support.

Ciarra and Dr Mobley: Dr. William C. Mobley is Professor and Chair of the Department of Neurology and Neurological Sciences as well as the Director of the Center for Research and Treatment of Down Syndrome at Stanford University.