a little sad

Discussion in 'General Parenting' started by Dara, Sep 26, 2008.

  1. Dara

    Dara New Member

    We just our neuro appointment yesterday and 3 psychiatrist appts the past couple of weeks. A lot of the talk is about Sammy's ability to learn. Apparently the seizures have caused some good amount of damage in his little brain and then add the Pervasive Developmental Disorder (PDD) to that. We are trying to schedule a 23 hour EEG to make sure that the seizures have actually stopped but because of hurricane Ike, everything is backed up so we are on the waitlist. The thing that makes me so sad is that socially, sammy has a lot of anxiety and doesnt know what to do. It is something that is being worked on by a specialist in the school so she can help give him the proper skills and confidence to be social. He is at the age where kids notice differences and can be cruel. he is so innocent and doesnt understand why someone wouldnt want to play with him. It truely breaks my heart. Also once he gets into school it is going to be difficult and nobody wants that for their child. His behavior is horrid at home more and more Pervasive Developmental Disorder (PDD) traits are coming out. he seems to be getting worse not better. We are going to try clonidine for his behavior and hyperactivity. He didnt respond well to the antisphychotic medications so we are trying something different. I am so tired, frustrated and just plain sad!
  2. bran155

    bran155 Guest

    I am so sorry. I can relate to your sadness. We ache for our children. Hang in there. {{{HUGS}}} :)
  3. nvts

    nvts Active Member

    Dara! Hugs to you! You're truly a wonderful mom to feel his feelings so strongly.

    I'll caution you not to give up the ghost on this one. The human brain is an amazing thing. Sometimes it will re-route where and when it needs to and as always with our kids, stranger things have happened. He's only 3 and all the testing hasn't been completed.

    Pervasive Developmental Disorder (PDD) kids can be trained to work around their disabilities. I'm guessing that you've got him in early intervention. They'll help you figure out the best placement for Sammy when the time comes. I'd also recommend that you contact your local Office of Mental Retardation and Developemental Disabilities. They'll help you get the services that you need.

    We're here for you!

  4. witzend

    witzend Well-Known Member

    I hope that you and your family will find some answers soon. The poor little guy...
  5. Dara

    Dara New Member

    Thank you. our big thing is making sure that there are no more seizures. The brain cant heal if there is more seizures. the problem with Sammy's seizures is that you cant see them and they are short and frequent. When he was having them, he was having hundreds to thousands a day times 4 years so we can all imagine the damage that they caused. Hopefully, they have stoped and we can work on helping his brain to repair itself... I think that this year is going to be a very telling year on what we do next year. he is in Pre-k right now. The big decision will be first is he ready to move on to kindergarted and 2 can he handle being in a mainstream classroom or do we need to find a different classroom or school. I just feel so bad because even though he is so difficult with me and definat, he is fundamentally sweet and innocent. He doesnt understand meanness. He has such anxiety in social situations that he just would rather be by himself..of course you have to look at his parents. his father doesnt really want to be bothered to be in a social situation and his mother has social anxiety. I literally have to plan possible conversations in my head days before I go out in a social setting. He really hit the jackpot in genes...Poor guy!!
  6. susiestar

    susiestar Roll With It

    I am so sorry. I know hwo scared we were when Jessie was having lots of very short seizures (50+ ona 30 min EEG) and it was terrifying. The Pervasive Developmental Disorder (PDD) can get better, it iwll take a LOT of work and time. Never forget we are here for you.
  7. Marguerite

    Marguerite Active Member

    Dara, even without the seizure history, this was never going to be easy. As for his behaviour - there are just so many things working against you all right now. But don't lose hope, it needn't be that bad for long.

    However, there ARE things you can do to make it easier, as well as things to know to give you hope.

    First - he IS only 3. At that age he is such a huge unknown, there are so many things we just don't understand yet. He is also very young and his eventual capabilities are still a blank slate.

    There is one big question - are his seizures still happening? Until you know this, you can't proceed.

    Let's think about the two pathways.

    On one hand, his seizures are continuing. This means he can't make much progress if any, his learning is going to be severely impaired, he will need to be simply managed and supported. Your expectations need to be much lower in order to take a lot of the pressure off him.

    Or on the other hand, his seizures have stopped and he is beginning to learn. This could begin slowly and speed up - be ready. Let him learn what he can, at the pace he is ready. This means having an enriched environment for him, but also keeping the pressure off him. Let him know he is loved as he is but surround him with the things he enjoys. Stretch him just a little, don't push too hard. A child who is ready to learn only needs the material available, they will learn at their own best rate if they are permitted to. I speak from experience with my own gifted children too - I did not pressure-cook them (despite what I was accused of). I simply allowed them access to learning opportunities that normally they would have not been exposed to, and answered their questions truthfully. A child of mine who asked a question about ants, for example, would find themselves outside with me, both of us peering down an ant hole while we watched them. Or we would be looking up a book, or a TV program, to find out more. That was all my children needed, to learn so well - someone to allow it, instead of the brush-aside that so often happens.

    Looking at both those possibilities, we see that they have in common a need to let Sammy feel safe and to also allow him access to opportunities to lean as and when he is capable. Take the pressure off.

    Now to the future - I don't know what your options are going to be, but I do feel that mainstream is not going to work. If you could get him into a really good Special Education unit that would support him and also help him learn to manage his anxiety (or at worst, have them help him feel safe) then he will be more capable of learning.

    difficult child 3 did not learn AT ALL while he was in mainstream - his anxiety was just too great. This wasn't helped by the ongoing teasing, bullying etc that was allowed to continue. We put in place everything we could and still it was torture for him. His behaviour got worse, he got more violent, things began to escalate out of control and finally his anxiety became so severe that he was physically ill (even though he valued school as a place that provided learning, and he LOVED learning).

    I strongly recommend you do not send him to mainstream. You could try a mainstream K if you like, but you will not be able to hide the fact that he IS different. Some of the other kids, maybe even most of the other kids, will be lovely with him. But it only takes one (and there will be more than one) to be horrible, and everything good goes out the window.

    If we had our time over, I would have pushed much harder to get difficult child 3 into a Special Education unit close to our home. I also would have pulled him out of mainstream about halfway through Year 1. We also found that the problems with school (behavioural issues etc) would get worse partway through the school year. The problems would begin earlier each year. difficult child 3 was not the only reason - ALL the kids and ALL the teachers get tired as the year progresses, difficult child 3 was just one factor. He would be tired too, but everyone having a shorter fuse just made his behaviour worse again.

    The biggest argument AGAINST home schooling has been "How will he learn his social skills if he's not surrounded by other kids in a mainstream setting?"

    Please pay close attention - this statement is based on false premises. It's just not possible to answer this question as it stands, because of this. It's as useful as "When did you stop beating your wife?"
    The statement assumes that your child WILL learn social skills by being surrounded by kids in a mainstream setting; it also implies that it is the ONLY way the child will learn social skills.

    Both of these premises are very wrong and show a basic misunderstanding of autism.

    AUTISTIC CHILDREN DO NOT PICK UP SOCIAL SKILLS BY OSMOSIS. They cannot simply learn by being surrounded by it - that is how 'normal' children learn social skills. The reason autistic kids have social problems is because THEY DO NOT learn social skills that way! And yet educators still use these arguments to justify exposing our children to the torture that mainstream often becomes for them.

    The question now becomes, "How will your child learn social skills?" which frankly is the question for every day of the child's life anyway, regardless of where and how they are given their academic tuition. How do we teach ANY autistic child? It's not easy, but in our experience, unless you can keep a really tight rein on the school environment to ensure your child is NOT being tormented, bullied or made even more anxious by the crowds, the distractions, the intense need to hold themselves together for an entire day - then please, don't try. You will not only regret it due to deterioration in the child's behaviour, but there will not be the expected benefits ("At least he's mixing with other kids") because it just doesn't happen that way, with even a high-functioning autistic child.

    We listened to advice like this. It's why we failed to remove him. We were even blocked from removing him by educators who insisted they were right to do so. They were wrong.

    Example: After a Learning Team Meeting I was standing on the steps of the administration block talking to the school counsellor and the District Special Needs Coordinator. We were gazing over the playground and the school counsellor said to me, "Isn't it wonderful to see how well difficult child 3 is doing now. The way he mixes i with the other kids in the school playground, he just blends in now. You wouldn't know he was any different."
    I looked over the playground to a sea of kids all wearing grey flannel trousers and sky blue shirts. "It's called a school uniform," I said. "That makes it easy for them to blend in."
    She persisted. "Look how well he joins in now," she said.
    I looked. In the middle of the basketball court there was a group of kids throwing a ball around. difficult child 3 was nearby, to be sure - he was walking along the line that ran around the basketball court, one foot carefully placed in front of the other. His head was down and his eyes were on his feet as he placed them carefully. I watched him "walk the line" around the basketball court, then turn and walk the line back. Over and over. And this was "joining in"?

    In the best classroom environment, difficult child 3 always did better when he had a quiet place to go, where he could concentrate on his work. This wasn't always available or practical. Mainstream schools just aren't set up to provide special facilities like this. A child needing a great deal of intervention is usually only given makeshift facilities unless they're lucky. A separate study area (assuming one exists) is usually no more than an anteroom or veranda. No chance of there being a special, sealed, sound-proofed room walled with one-way glass where the teacher's voice can be miked in but no other sounds can penetrate?

    Another really big problem with mainstream and autistic kids - they are far less adaptable to the need to do everything as part of a large group, to adapt to the needs of the group and the majority. ONe of the biggest problems in mainstream, is that children learn at different rates. The slowest kids struggle and may not finish their work. Meanwhile the brightest kids finish their work and are at a loose end while they wait for the others to catch up. With neurotypical kids, generally the brighter kids are also more mature and will be more likely to wait patiently.

    However, autistic kids are likely to be much slower at times; bored at other times, and without the maturity (or self-control) to wait patiently.

    Task changing is also a HUGE problem which can't be dealt with on an individual basis, in mainstream. FOr us now, with difficult child 3, we allow him to choose when to change the subject he is working on. That way he doesn't have to stop working on, say, Chemistry, until HEW is ready. Generally he will chose to change task when he has completed a problem and not in the middle of one.
    Similarly with English - difficult child 3 will choose to finish a writing task, or set exercises, before changing to another subject. This is logical, it is sensible, it is also best practice for efficient learning. It is also not easy in mainstream. Again, a neurotypical kid will take these problems in their stride. An autistic kid is far more likely to be rattled by it, to be anxious about not having completed a problem. And as autistic kids get increasingly anxious, their ability to stay on task drops. Instead of getting on with his work, an autistic kid will be fussing over not having finished the previous exercise, or not having his pencil properly sharpened, or losing the top off his biro, or having his shoelaces not exactly even, or having an itch behind his left ear, or hearing a bird outside twittering at exactly two octaves and a guartertone above Middle C, or...

    You get the picture. Lower the anxiety, and the shoelaces, the bird, the pencil, the biro top, become less important.

    Since undertaking education at home, difficult child 3 has learned a great deal. A lot of his previously missed education is caught up. He is currently working at grade level in most areas, recent assessments of all the students in his grade in Australia show difficult child 3 functioning above the national average in all subject areas. In most of the subject areas, he's more than one SD above the national mean.

    I do not know if Sammy will ever do as well as difficult child 3. But then, difficult child 3 doesn't have Sammy's seizure history.

    My point is, difficult child 3 wouldn't do as well as this, if we had kept him in mainstream. I also believe that if we had pulled him out of mainstream years earlier, difficult child 3 would by now be doing much better. In mainstream, he was too difficult and so he was just left. This is despite having a really good aide. A good aide just is not enough. His anxiety was too extreme, work that I know was covered, simply didn't sink in with him.

    But what about the social stuff?

    OK, here comes what is considered heresy by some - as far as autistic kids are concerned, I think we expect far too much of them socially. Why does it matter? SO what, if the autistic child never learns to play nicely as a six year old? So what, if the autistic child chooses to play with only one or two other children at a time, instead of a crowd? So what, if the autistic child prefers to not play football, but chooses chess instead? Or tennis? WHY do we get so hung up about autistic children and social skills, when we do not worry to the same extent about blind children or deaf children?

    I'm not saying we should completely ignore their social needs or the need to teach them how to interact appropriately. But you DO NOT teach them appropriate interaction, by shoving them in with a large group of kids who themselves are still very undisciplined and selfish.

    We spend a long time living in this world as adults. When we are adults, we mix with the full cross-section of humanity, across a wide range of ages. When we are adults, we spend time with our friends who can range in age from much younger than us to much older. We talk to our neighbours, we work with many different people, we go shopping with many different kinds of people - where, in these future scenarios, do we need to be able to get on with a large group of six year olds? Only if we become teachers. And even then, we are interacting with these kids as adults, not as another six year old.

    Something else very important - a child who is struggling in mainstream often has a lot of homework. They also don't have many friends they can have playdates with. An autistic child who has been struggling all day at school will often come home and let fly, temper tantrums exploding. It is all so very difficult. Assuming the child even wants to go visit a friend (after probably spending all day with other kids, he wants to spend more?) he probably has too much homework, or is grounded for bad behaviour.

    What we find now - difficult child 3 spends school hours working steadily on his lessons, at home. If he needs to he can telephone a teacher. Some of his lessons are online, sometimes he has to write a report on a topic and email it to a teacher. But when school hours finish, he can stop work. He is far less anxious because his environment is much more controlled. So is his workload. His schoolwork has been tailored to his specific needs and capabilities. He finishes his work just as the three or four kids who are his good friends, get home from their school. Whereas before difficult child 3 would get home form school and have to get busy doing his homework (which always took us hours) now he's free to go and socialise. He mixes in smaller numbers and copes better. He is free to come home if an interaction is not going well - this trains him to walk away from unpleasant behaviour, a coping skill we were told to instil into him.

    And a HUGE source of social education for difficult child 3 - shopping - happens far more often. He works so well at home that sometimes we go shopping during school hours. His education can continue - shopping for groceries, paying for your purchases, all make for very effective mental arithmetic lessons. But while we're out, he is learning to interact appropriately with a wide range of people from all walks of life. Again, he is in more control of his environment - if difficult child 3 is getting anxious while at the supermarket, he knows he can go outside to calm himself down. Sometimes he used to go back to the car and do some schoolwork sheets we'd brought with us (not any more - he is now VERY capable when shopping).

    It works differently for different kids, but in general this is much less stressful and the child is far less anxious. Therefore they learn better, they behave better and it's all good news.

    I wouldn't necessarily recommend home schooling or correspondence so vehemently for all kids. But unless you can get a really good fit with a Special Education unit, or unless your child's autism is really mild and they are adapting well, I would not recommend mainstream schooling for autistic kids. I cannot find any good points about mainstream schooling of autistic kids, which can't be easily bettered by NOT putting them in mainstream!

    Dara, you know you have my sympathies. I won't go on about how sorry I am for you - I'm a pragmatic person and you already know I have strong feelings in support of any parent struggling like this. But there are too many things to get on with, to simply say, "there, there," and not actually try to find some way to help as well. Hey, it's just me. And maybe it's an Aussie thing, too - when the heifer is bogged in the mud of the dried out dam, we don't pat the farmer on the shoulder. We go get the tractor and a tow rope. So please don't take my apparent lack of sympathy for not caring - I do care. I'm just thinking differently. You will get plenty of sympathy from others - that is good. I don't need to add to it all.

    You've been given a pessimistic prognosis for your son. Don't be too distressed - first, where autism is concerned doctors often ARE pessimistic because each child is an unknown quantity and they don't want to give you false hope.
    Second, doctors are still learning, themselves. And interestingly, they're learning from parents, and patients who are now reaching adulthood and amazing doctors with their capabilities.
    Third - difficult child 3 was given a very pessimistic prognosis. "He will never learn. He will never be able to attend a normal school. He may SEEM capable, but he is not, in reality he's just like a parrot that seems intelligent because it can mimic human speech."

    Oh boy, were they wrong.

    I keep hearing similar stories - difficult child 3's many drama classmates. Just about all of them were also given very negative outlooks. And just about all of them have exceeded all expectations.

    I think Sammy, too, has the capacity to do much better than anyone expects.

    And if you don't expect much - then you're likely to really enjoy watching him develop in such marvellously unexpected ways.