Just told the boys that V has Autism Spectrum Disorders (ASD)

Discussion in 'General Parenting' started by Ktllc, Nov 9, 2012.

  1. Ktllc

    Ktllc New Member

    We have been talking about Autism Spectrum Disorders (ASD) for a couple weeks now, reading books and explaining in simple words that everyone is different in many ways.
    Partner was even able to tell that one child at gym has probably Autism Spectrum Disorders (ASD) (I actually know he does but did not say that to him since diagnosis are confidential). I told Partner that just because he acts a bit different, it does not mean he does not want friends.
    Today, they had gym and the teacher teamed Partner and this child. Partner did such a good job helping this boy and making him part of the game. The teacher congratulated him for being such a good friend and such a good helper. I asked Partner if this boy talked to him. Partner said that he does not talk. Then I asked him if he could tell wether the boy had fun or not. Partner was all excited that they both LOTS of fun together.
    I am so proud of my big little guy.
    So after stopping at the pediatrician's to talk about genetic testing and schedule the referral, the boys and I made an activity: V found all the different blue crayons we have and Partner all the gold/yellow ones.
    They each drew little stick guys in the different shades of their respective colors.
    We then talked about being the same color but still being different from one another (tall blue guy, light blue guy..).
    I explained that V's guys were on autism spectrum, just like V. And that Partner's guys were neuro-typical just like him.
    I kept a straight face but gosh! I was emotional to tell my beautiful 5 year old little boy that he has Autism Spectrum Disorders (ASD).
    They both took it very naturally. We also read a excellent book: "ethan's story: my life with autism".
    We talked about the good parts of Autism Spectrum Disorders (ASD) (V's ability to see details, being able to watch and observe animals and nature for hours) and the harder parts (making friends, understanding what people mean).
    V was amazing. He kept on saying "I'm just like Erhan" "I have autism". And V was so excited to learn that Ethan is a real person!
    And now, I'm so proud of them but yet I keep swallowing my tears.
    I know they were both ready to know the truth.
    V is slowly collapsing at school and at home. I know the storm is coming as things get harder at school and V cannot keep up. He knows he cannot keep up. He had is first mini-meltdown at school yesterday. The teacher called me to let me know. It's the first time she sees the other side of V. I'm sure more will come. It's been about 1 week that he has those mini meltdown at home...
    The pediatrician was shoked that V has no help at school. She told me to not wait beyond January. Then, I have to really fight the school. She said that elementary testing will be very different from the preschool testing we 6 months ago.
    I have all those pots on the fire and I feel like my head is going to explode. I need a vacation on the white sanded beach!
  2. buddy

    buddy New Member

    That was a really nice way to say it. I do think if it just comes up in conversation over time then it is not as big a deal. I have done that too though at first he found out because he heard someone say something about his classroom at school.

    Your little partner really touched my heart. I am sure you and husband are very very proud. He has such kind parents, so he has that fundamental/core value to care about others, I have experienced your family love for others first hand, it is something so special.

    I really understand the tears coming on every once in a while yet trying to just go on as if it is just a piece of information....

    There is surely a grief component to this. Even though you kind of knew, there is always that little hope or just not the final answer that lets you have an out. Of course it is still not certain what the outcome will be when he is a grown man. Now you know to prepare for as much support as he may need, but you can access therapies and work on skills in a way that matches what you know of Autism Spectrum Disorders (ASD) and his individual learning style. He may end up having a more typical life than many neurotypical people have. He has a great chance with you as his mommy, that's for sure.

    Funny when I read about you saying neuro-typical, when I was at that fund raiser for the ranch/retreat independent living program....two of the adults with asperger's said to me that they have a bunch of DNT friends. I asked what that meant and they said ... Dysfunctional Neuro Typical friends ! I thought that was a GREAT acronym!
  3. Malika

    Malika Well-Known Member

    It is great you have talked to the boys. I understand your sadness, of course - a kind of grieving, perhaps? Things openly talked about and acknowledged become so much more manageable, I think. And it would be heartening to think that V will have an ally and a protector in Partner.
    As for the school, it is I must admit confusing (and how much more so for you!) Since V now has his diagnosis, from the top as it were, and since it is clear that he is not keeping up seamlessly with what is on offer at school, why is help and testing not being offered as a matter of course. I'm sorry this has also turned into a bit of a fight... do you still have your idea of possibly moving to a place with better accommodations?
    Although it may sound a bit strange, I think it is good you managed to communicate that there is something a little different about V in a way that the boys understood and accepted. I have never had any success with talking about hyperactivity or ADHD with J! He doesn't see himself as different in any way (or, if you ask him, he will say only that he is different by being Moroccan and for speaking three languages...) and he has always stated that he is very happy as he is, moving all the time. He gives you the sense that the world doesn't fit in with J's rhythm but that that doesn't mean there is anything wrong or strange with J :) So I've kind of given up with all the conversations you're supposed to have and the books you're supposed to read...
  4. buddy

    buddy New Member

    I think he has been assessed and didn't qualify and sadly the way it works is that only those kids who have huge delays, set by mandated criteria or who meet criteria through other means like mental health or behavior challenges qualify for Special Education.services. The work till that point has to come from general ed. interventions and that is where many use a 504 plan to start hoping people will be consistent and use accommodations that allow him access and success in the class. I wish it was different.

    At.this point if they didnt find a way to override Criteria or a way to test him into some form of sp ed. (Sometimes kids can qualify under a sp.lang IEP if the clinician is creative and can use legal tests that you know will hit the childs weak spots and then at least they can get someone from sp ed to help support the student and how they do in class, but at V's age he has to pass very few items on most tests to be considered to not have a problem. Kids like V without a mom like he has fall.thru the cracks until there is a huge gap as he gets older or when things come to a head behaviorally. It's so frustrating on both sides sometimes. (Assuming they are really doing their jobs and assessing the problem areas .)

    Programs are audited and if you wrongly qualify a child the district is fined and funds can be taken away, and it will trickle down to the person who let it happen.
    I wish there was a better way....
  5. TerryJ2

    TerryJ2 Well-Known Member

    Beautiful, Ktllc!

    I am sorry about the mini-meltdowns, but in a way, it's good so the teachers can see how frustrated he is.

    Yes, definitely get a 504 or IEP now! It's going to be a lot of work in the beginning but eventually, it will flow and be just monitoring. Sadly, the monitoring won't be with-your difficult child, it will be with-the teachers. :( Every yr, there's one who doesn't "get it." I spotted the ones this yr from the get-go.

    Yes, a vacation on a white sand beach ...