I lost you guys!

Discussion in 'General Parenting' started by JLady, Mar 9, 2009.

  1. JLady

    JLady A ship lost in the night

    I lost the link to this website and had the hardest time finding you guys again. You probably don't remember me.

    My difficult child has been diagnoised after 4 months worth of appointments with the psychiatrist. Asperger's Syndrome is what she told us on Friday. I'm having a really hard time understanding it all. I've done some research and have a ton more to do. I really need someone who understands.

    I also received a letter from the school for an Student Support Team meeting. I've been working with the school all year and this letter is from someone I don't even know.

    It's all upsetting. It's all overwhelming. I don't know where to turn.
  2. Marguerite

    Marguerite Active Member

    I remember you. And form what I do remember, I'm not surprised by the Aspie diagnosis. Welcome to the club!

    Try to not let the label get to you - it can actually be good news. There are so many things it could have been, and with Asperger's, there are some interesting advantages. It's just a matter of getting to know them from the flip side of your child. For some reassurance, read up on Tony Attwood, he's an expert on Asperger's who can help you feel more comfortable with the tag.

    Welcome back!

  3. Fran

    Fran Former desparate mom

    I do remember you.
    Hopefully the student support team will help you, help your son. Start your research and ask yourself what does your son need to succeed. Work with his strengths and support his weaknesses with tutoring or any other sort of tool that will help him find his way. He is probably feeling lost and alone some of the time too.
  4. jal

    jal Member

    I remember you too. My difficult child was diagnosis'd Pervasive Developmental Disorder (PDD) - Aspergers last month. We had been told before he was BiPolar (BP), ADHD and nothing worked for him. We'd been through countless medications, IEP's etc. Looking at the new diagnosis we are now employing techniques and the right medications and it has made a world of difference. My difficult child is in a therapeutic school (1st grade) and is doing awesome. Excelling at math and spelling and his reading has come so far. He couldn't handle mainstream because of the large class size and the confusion it has caused him. He has learned so much from the structure in his new school and is really doing beautifully. Good luck with the student team interventions. Hopefully they will help you to get an IEP in place if you don't already have one, to give your difficult child the supports to succeed. It will be OK.
  5. JLady

    JLady A ship lost in the night

    Why am I so upset?
  6. eekysign

    eekysign New Member

    'Cause you're human. And a good person. *hugs*
  7. jal

    jal Member

    You are upset because you are human as eekysign said. Maybe like me you are upset because things did not turn out as you expected. We are not conditioned to think "oh, maybe my child will be born with Pervasive Developmental Disorder (PDD), ADHD, BiPolar (BP) or a multitude of things". Maybe you feel upset because you and your child you have to live with/through this. It's stessful, no getting aorund that. On the other hand it is not a death sentence, thank g*d, but a journey that requires a lot of strength and patience and education and the ability to fight for those things that need to be in place for your child to succeed. You can't change what is, but you can make the change for how things need to be for you child.

    You stand strong...you educate yourself and those around you...and you love your child and yourself! You CAN do this.
  8. totoro

    totoro Mom? What's a GFG?

    You will get used to it, believe me!
    Some days you will hate it. Some days you will love your quirky kid more for his differences. :)
    Only someone who is a parent can get it. (Adopted applies here as well :) of course)
    It is a journey. You will find out new things about yourself that you would never have if your child were *Normal* embrace him and love him all the more. You both need it.

  9. Stella

    Stella New Member

    I was the same when difficult child's psychiatric told me recently that he "suspects Autistic Spectrum Disorder". Even though I've thought it for a long time now, hearing it confirmed was a lot more upsetting that I thought it would be. I suppose it's because deep down a little part of me was hoping that there really wasn't too much wrong and that her behaviours were something that she might grow out off! delusional i know!! Anyway, your difficult child sounds like he's doing great, well done for all the hard work and now that you have a proper diagnosis he is getting the right help so it was all defintely worth it!
  10. JLady

    JLady A ship lost in the night

    Thank you for all the replies. I've been on the phone with the school board to find out what is available and have also reached out to a support group in our area. So much information to digest.
  11. Marguerite

    Marguerite Active Member

    My initial reaction - utter despair. I used to read a lot as a kid, I remember reading about autism and thinking, I could cope with a child who was blind, or deaf, or had some sort of other physical problem, but I never want to have to cope with a child with utism, it would be so heartbreaking.

    The reality that is so very different, is why I now cope. SO many of my preconceptions have turned out to be not true; many of my fears are totally unfounded. Instead of the emotionlessblob self-harming in the corner, I have discovered that my children are loving, intensely loyal, honest, hard-working and (when they're not feeling thwarted) get a lot of enjoyment out of life, sometimes from some very unusual places and in surprising ways. The unpredictability of what they do and say can sometimes be challenging, but also can be exciting. I realise now that most of what I read as a child was based on preconceptions and misunderstandings. The way we see autism is constantly changing, I have at times found myself discovering things about my kids that are still right on the forefront of understanding. As a result, I've had to learn to trust my parenting instincts and to "go with the flow" if we stumble onto something that seems to work well.
    For example - if there is any communication delay or difficulty, get access to 20Q, either the website or the hand-held game. It just happens to match an exercise difficult child 3 was given by the speech pathologist. The purpose of the exercise - you think of a word such as "apple" and then the child has to tell you everything he can think of, that connects to the word "apple". They grow on trees. They cna be red, green, sometimes yellow. Sometimes a mix. They taste sweet. Apple trees are shady and fun to climb. The leaves are green, thin and pointy. The bark is rough. Apple pies taste wonderful, especially with ice cream. Baked apples are delicious in winter.
    And so on.
    The purpose of this exercise is to help the child's brain put in a lot of the connectivity that is often reduced or lacking, when language has been delayed. Even though difficult child 3's language USE is now not only within normal limits, it is superior in a lot of areas, he hasn't got as much connectivity between items in his head, which means his word finding skills are slower. The exercise helps. We were driving around on holiday, practiicing this exercise, when we found the 20Q game in a shop, and HAD to get it. It really is effective at helping this exercise along, we found. So we bought one for te speech pathologist as well!

    THat's just one example - something we stumbled on ourselves, and shared. It's a bit like this, with an autistic child at the moment - you beclme the expert on your own child but often make amazing discoveries. Meanwhile you have a child who wants to please you, who wants to do the right thing, but who often has difficulty trying to learn what IS the right thing, and how to manage it in the confusion that is life. Helping your child see the pattern in the world, helping the child discover that life doesn't have to be scary, is very rewarding.

    It's not all wonderful, Jlady. I'm sorry if I made you feel as if you have no right to be upset - you have EVERY right. But it DOES get better, there are some blessings along the road that will surprise you.

    I'm glad you've made contact with a support group in your area - they will help you with good ideas as well as things you can access in your area. The way other children with autism tend to support one another is beautiful. Of course they will also fight at times (especially if one obsession clashes with another!) but I've observed, my autistic kids have tended to choose as best friends, other people with autism or autistic tendencies. Again, the intense loyalty seems to really kick in.

    Something else to bear in mind - you often find autism in families where there is also high IQ. Generally the autistic child can also be extremely bright, but testing doesn't always show this. Be very wary of psychometrictesting where splinter skills are found, but the tester still averages out all the scores to give you a final IQ figure - according to my understanding of how these tests are supposed to be analysed, if there is a big gap between the highest sub-scores and the lowest (more than about 6 points, I think) then the sub-scores should be left and NOT averaged out. The useful information form such a test would be, "Your child has scored in the superior range for X, Y and Z but well below the average in the following areas..." and you USE this knformation to help your child. Often the scores break down to a verbal performance, and non-verbal performance. A child with language DELAY may continue to get a lower verbal score for a few more years after his language comes back into the normal range (assuming it does - and it can) but the scores can change over time, as the child's abilities are honed. They take longer to get there, but give the child time and support, as well as sometimes intense remedial therapy, and it's sometimes magical what you can achieve, when it suddenly clicks.

    We're in the process of trying to get difficult child 3 reassessed. It's been quite a few years, and the last time he was tested, they focussed mostly on non-verbal (which scored through the roof). At the same time his school counsellor did another assessment on him (without my knowledge or permission) and, as usual, she averaged out the scores and got a very different answer to the one I'd just had done through a research group. The research group had said, "We can't give him an overall score, because his sub-scores vary too much. But in his high skill areas, which cover most of the test, he scores in the 140-145 range. Low scores in other areas are due to the autism, rather than a true indication of his potential."
    The school counsellor's report was verbal, and saying, "He does well in some areas, not so good in others. But overall he's doing very well indeed, considering his IQ is only just above average, he's not as bright as you thought. So it's amazing how well he's doing in his exams."
    The idiot school counsellor - I wanted to tell her that he did well in his exams, because in those subjects he IS "smarter than the average bear." But it was in her interests, and in the Dept of Ed's interests, to average it all out in order to not only find NO high ability in anything (which would need extension) but to also find no learning problem due to low IQ (which would need remedial support) THis way they eliminate entirely, the category of gifted but learning disabled.

    JLady, you have a smart older son. He's possibly a signpost for you to the intelligence level in the family, because members of the same family tend to be within 10 IQ points of each other. We also choose partners who match us in intelligence.

    Talk to the people in your local group, maybe see if there is a sporting event or family picnic day you could go along to, to meet some of the other families. It's likely to be intense to begin with, but also probably fun as well. It's also interesting to observe how other families deal with their kids. I'm still learning a lot, even though difficult child 1 is 25 now and you would think there would be nothing left for me to learn! But they are all so different!

    Another thing I have discovered about myself - I am now so tuned to Pervasive Developmental Disorder (PDD) in various forms, my famiy reckon I see it under every rock. I think they're right - because it's there to be seen.

    You'll be OK, JLady. But if you need to go have a good cry, feel free. You will need to, at times. It's OK. Just be on the lookout for the good stuff as well. It IS there.


  12. JLady

    JLady A ship lost in the night

    Thank you Marg. I'm quite overwhelmed with all the information I have been reviewing. Needless to say I wasn't very productive at work today. I'm not thinking that my child will have opportunities to excel. I'm glad I live in an area that has programs for him. I just need to get the ball rolling and get him accepted into the programs that will help. I hear that can take some time.

    Getting my family to understand is going to be quite difficult. Unfortunately, they are quite closed minded. I've cried and I've tried to look at it form a positive point of view. I guess now I know why nothing I was trying was working. Perhaps now we will be on the right path to success.

    I really appreciate you taking the time to write all you did. You have no idea how much that means to me.

  13. Marguerite

    Marguerite Active Member

    Unsupportive family only maks it more difficult.

    To be fair to them - they are very much in denial. We all grieve the loss of the child we thought we had, the child we longed for, the perfect, brilliant child. The further we are away from the coalface, the longer we grieve. There is something about dealing with the reality of it day after day, that helps you face up to it faster and overcome the grief.

    Give your family time. Don't rub noses in anything, maybe even don't tell them stuff until they can handle it. I had problems with my in-laws not accepting that there was anything wrong. father in law never knew about difficult child 3's autism, may not have handled it too well. He wasn't comfortable with the ADHD diagnosis for difficult child 1. I'm sure he would have come round eventually, he was a wonderul man and I know where his concerns came from. However, there were some things I learned to not tell him or mother in law. There are still some things I'm reluctant to tell mother in law, if I think she will get upset about it. But as she now spends a lot more time with us and sees the kids close-up, she is more aware of t he problems as well as their good points. She's come with me a few times to appointments with psychologists, which in previous years would have had her shuddering and refusing to come inside. I explain to her what the appointments are for and as long as I can find a practical reason (and nothing purely "touchy feely") then she is happy with it. Of course this means I sometimes lie to her.

    I guess what I'm trying to say - if family aren't ready to accept that there is a problem, then don't lean on them for support until they CAN handle it. The same goes for friends, even your closest friends. My best friend can sometimes be incredibly thoughtless and dogmatic about thigns that surprise me. I've learned to not go there, if it's going to cause a problem. We have too many other areas where we DO have a meeting of minds. And in time, mere exposure can soften her attitude.

    This means you need to find your support place, either here or your local network (or both). That way when you talk to family, it can be about family things - what was Uncle Albert thinking, to dance on the collapsible antique bridge table? You may find yourself not attending so many family gatherings, or perhaps staying for much shorter times, or not taking difficult child. Again, it depends on who will be there and how they handle things.

    One thing that helped - if anyone had a go at me, saying, "There's nothing wrong with him, why on earth do you keep insisting your kid has a problem?" my answer was, "I didn't diagnose him. I don't have the qualifications. He's been assessed by a number of different people who all agree on what is wrong, and together all these people are working with us to help him be the best he can be. Argue with them if you want to, you go talk to them but leave me out of it. He's an amazing kid, but he is going to need a bit more help and understanding than average. It would be good to have you on board with this. I know you love him like I do."

    With Pervasive Developmental Disorder (PDD), people find it most difficult because they see the high function stuff and assume that the child is ALL like this, and it's not just splinter skills. People don't understand savants. Even difficult child 3's English teacher last year, a nice person and an experienced teacher, experienced difficult child 3's superior vocabulary and ability to write poetry, and expected him to be able to write an essay - he just can't, he doesn't know how to phrase an argument or to even discuss a topic without giving you either far too much or far too little. He goes off topic. There are tools he can use and can improve, but the level of support he needs seems at odds with his superior ability in some areas. Crikey, even I can't explain exactly where the borders of his abilities lie, so if I don't fully 'get it', how can I expect his teacher to?

    But it IS frustrating!

    Meanwhile, the child soldiers on, and whatever he does I have learned to watch, because he seems to instinctively work in ways that are best for him to learn, everything he does is geared towards helping him adapt to a world in which he will always feel an outsider. He is learning, often when we're completely unaware of it and he seems to be wasting time.

    Watch your child - you may see similar things. Apparent lack of progress, frustrating you for ages; then he will do it seemingly overnight, perfectly. Infuriating, if you let it get to you. But wonderful, in another way.

    One last strong recommendation - keep a diary. YOu WILL forget stuff, and there is a lot of it. But reading back over it a few years later will give you a great deal of encouragement, when you see just how far you will have come.

  14. jal

    jal Member

  15. JLady

    JLady A ship lost in the night

    Thank you. Thank you Thank you. That is all I can say. The responses and support are amazing.

    The diary idea is wonderful and I am going to do that. I'm feeling a bit better today about things. I meet wth the school on Thursday to discuss what avenues to take with my son. I find myself not able to explain to anyone what is wrong because I don't understand it myself but the more I read the more I get it. It's all so fragmented. There isn't one thing or two. It's several things put together and those individual "quirks" are all over the place. A very complicated way to put it all together for understanding. Did any of that make sense?

    I've had many years of frustration. I'm hoping that now we can move beyond frustration.

  16. susiestar

    susiestar Roll With It

    Welcome back Jlady!!! I missed you!

    Sorry you needed to come back though. I was hoping things were going wonderfully for you.

    An Asperger's diagnosis is NOT as bad as it may seem at first. It will eventually help you understand your son and work with him so that he can overcome the challenges of Aspergers.

    There is one of those "Everything" books for Aspergers. Several people at the phosps recommended it because it is supposed to be easy to read. I already understood the problems and only skimmed it at the bookstore. It seemed like a pretty good starting point. You might have to go to amazon.com rather than the bookstore though. It was several years ago that I saw it. (And you can go to amazon through the link on the site - and help support the board!)

    I STRONGLY suggest working with an Occupational Therapist (OT) to handle sensory issues as a very high priority, especially now while he is learning so much and having so much brain development. It can make a HUGE difference. Carol Kranowitz has a book called The Out of Sync Child Has Fun and The out of sync child. The first one is all kinds of activities to help with sensory problems. The second explains sensory integration disorder. They really helped Wiz make huge strides.

    Again, welcome back!