Parenting And Autism

Discussion in 'Off Topic [BG]' started by BayStateBass, Mar 7, 2014.


  1. BayStateBass

    BayStateBass

    Joined:
    Jan 25, 2012
    Location:
    Central Massachusetts
    I don't know if there's any other threads like this here on TB, but if there isn't I thought this might be good. A good place for other parents or members to share some of their experiences about raising an Autistic child, or what it's like to live on the spectrum.

    Here is my son Dan. This picture is quite old now, he'll be 13 this year.
    [​IMG]

    Even from the time he was an infant, I was aware that he was not like my friends' kids. I think I could write a book on it...but he had a lot of the "typical" autistic tendencies. Or at least what our research told us. As a baby he rarely cried. He did not like to be held or cuddled. As a toddler he focused in depth on unusual objects, sometimes for long periods of time. We talked to his pediatrician, who told us not to be concerned. He seemed to be reaching his milestones on time, just like other children. His speech, as he learned to talk, was flat and monotone. And, of course, there were the meltdowns. They told us it was "the terrible two's". But we knew something was just.....different.

    School started when he was 5. Within weeks his teachers were contacting us about him, saying he was very unusual, and we should consider having him evaluated. He was placed on a 504 plan for fine motor coordination. Due to his age, we could not find a neuropsych expert who would evaluate him. He was released from his 504 plan by the end of first grade.

    His struggles, both socially and educationally, continued. And we continued to struggle as well. Our families did not support our belief that he had Autism. We were told that we were too demanding. Told we expected too much. My in-laws accused me of being an overbearing and harsh parent, which was why he acted out. Over time we were becoming desperate.

    By third grade he received a neuropsych eval. The results were in. He was diagnosed as having ADHD and an anxiety disorder. But assured he did not have Autism, mainly because the evaluator felt he did not meet the physical criteria, which we later learned was an outdated and antiquated criteria. The school refused to consider an IEP for him, and he was not put on any specialized education plan.

    And the struggling continued. We did all the research we could and worked daily to understand him, help him with his challenges, and so forth. By the time he was 8 he was eligible for a new evaluation. A new doctor tested him and the results were in. He placed firmly on the scale for Autism Spectrum Disorder, and given a diagnosis of Asperger's Syndrome. The school finally placed him on an IEP, but unfortunately no matter how hard we pushed they rarely followed it.

    Socially, he was tortured by the other children. His inability to fit in made him a constant source of ridicule and teasing. He was not athletic. He was unable to understand a lot of their social interactions, despite our constant teaching and role playing at home. He was (and is) very bright but his grades suffered, mostly because he lacks some of the processing speed that is needed for standardized testing. He was called "retarded", "geek", "stupid", and a whole litany of other names. Children stole his lunches and frequently threatened to hurt him, and sometimes followed through on those threats. And he had difficulty making any friends. And so it continued. School staff were unwilling to make changes, despite our constant effort. The principal targeted him as a "troublemaker", so he was often punished when he retaliated. He hated school. Even though he had become far more "mainstream" as he grew, the stigma of going to school with children who had labeled him at a young age was impossible to shake.

    We didn't know how much he hated his life until October of 2012. It was then, on a Saturday afternoon that my son attempted to hang himself in his bedroom. I was not home. My wife found him. Luckily she found him soon enough. He was hospitalized for 9 days afterward at a facility where he could be watched and worked with. He was later released back to our care. When asked, he stated that his reason for doing it was so that he would not have to go back to school and face the other children, ever again.

    You never feel you've failed so much as a parent as you do when your child would choose death over living, voluntarily.

    A lot has changed since then. We ramped up our efforts to help him fit in more. We switched his school. And, he naturally developed more social skills. He's now doing quite well. He has a lot of friends, and just yesterday he was asked by a girl in his class to be her "boyfriend". The last year has been a whirlwind of change, all for the better. But the reality is that for his entire life, he will be different. He knows this. But it won't hold him back.

    So, I know this has been lengthy, but anyone else out there with a story to share?
  2. pedroims

    pedroims

    Joined:
    Dec 19, 2007
    Location:
    Michigan
    Right now my 30 months old is in evaluation, the people that have evaluated him told us that he is not suffering of autism but certainly he has some problems, he is not able to say a single word, non mom-daddy, nothing, just tatatattatata but he understand everything, he will play with his toys and older siblings , he does not like to meet new kids, it takes time for him to feel comfortable.

    He is attending one week session that is basically spending time with other kids, after 5 weeks he started making progress and now he can have some interaction with other kids in the room.
  3. nukes_da_bass

    nukes_da_bass Supporting Member

    Joined:
    Feb 19, 2006
    Location:
    west suburban boston
    As a parent I felt compelled to read this thread. When I read the "hanging" sentence my heart stopped!
    Special kids are only granted to.special.parents- believe that- you are an awesome dad!
  4. Bassist4Eris

    Bassist4Eris Non Serviam Supporting Member

    Joined:
    Aug 11, 2012
    Location:
    Scotia NY
    You just about described my childhood....including the part about switching schools. True story. From 2nd through 7th grades, I was the pariah of my school. Even the clique of unpopular kids wouldn't accept me, and I got beat up a lot. My parents moved to another school district between 7th and 8th grade. The restart made all the difference. How much of a difference? My senior year, I decided to run for class president. I won by a landslide. You made an excellent move there. Best of luck!
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  6. BayStateBass

    BayStateBass

    Joined:
    Jan 25, 2012
    Location:
    Central Massachusetts
    Well, not really. I'm not that awesome. At all. If I told you some of the things I've thought or some of my reactions to him over the years I certainly wouldn't be up for father of the year. But I have learned a lot and it has forced me to look at things differently than I might have had situations been different. It's ever-evolving, so to speak.
  7. Rush-2112

    Rush-2112

    Joined:
    Dec 14, 2008
    Location:
    New York City
    I'm currently enrolled in a Psych course called Autism Across the Lifespan...it's only been a few weeks and I've learned so much about ASD. Glad to hear your son is doing better...according to what I've learned in class, it's sad that so many toddlers with it don't get evaluated, especially when the red flags are there. Unlike you, a lot of parents seem to live in denial about it, which can be so detrimental.
  8. BayStateBass

    BayStateBass

    Joined:
    Jan 25, 2012
    Location:
    Central Massachusetts
    Well, the unfortunate part is that when most people think of Autism, they automatically think "Rainman", or the more severe forms of ASD. The truth is that it is a spectrum, so those affected can be very mild right up to very severe. What we've found is that even the so-called "professionals" have a very weak understanding of it. Every person with ASD will be different. There may be some commonality, but each one is unique. We've found that talking with other parents was our best resource for information versus professional counselors or doctors.

    Even though we knew he was likely autistic, it still hit like a ton of bricks when we were given the actual diagnosis. There are a lot of parents out there who don't look deeper. Nobody wants to be told their child is "different", and there is a real stigma still attached to Autism. And it's not "curable"; it's something you have to live with, and as a family you have to look at things differently and teach your child in a very different way than you would with most other children. Luckily, my son is considered very high-functioning, even among his peers. At his age, and with what he's learned, most people meeting him now would not immediately pick up on the fact that he's autistic. We never wanted him to be ashamed of it, but the fact remained that we needed to find a way to teach him to exist and be successful in a world that probably will not understand him. He still struggles with understanding why people do certain things, but overall he's become a pretty regular kind of kid.
  9. winston

    winston

    Joined:
    May 2, 2000
    Location:
    Berkeley, CA
    I don't have kids but my wife is a licensed Marriage and Family Therapist specializing in 0-5 mental health. She deals with a lot of children on the autism spectrum and their families. She is also the go-to in our friend group for parents who are concerned whether their children's' development is "normal."

    My heart goes out to all of you dealing with this issue! These suggestions might come as obvious but I'll put them out there anyway:
    • If you're not getting the care/treatment you expect from mental health professionals, be sure to find someone who specializes in disorders of early childhood development (0-5). Look for someone specifically trained in psychology (MFT, PsyD, PhD) rather than social work (ASW, LCSW) - the latter often focus more on case management/access to services than therapy per se. Of course a medical doctor should be involved, but be wary of psychiatrists who think everything can be solved with a prescription!
    • There is a lot of fear/shame involved in admitting that your child might have a problem, but confronting that is critical to getting your kid the help they need. A comprehensive assessment/diagnosis is essential for an Individual Educational Plan (IEP), which will get your kid the proper services in a public school.
    • My wife works with severely traumatized/abused children. She has consistently observed that such kids, who have to fend for themselves, learn to speak earlier than kids raised by loving, "normal," dare I say overprotective/helicopter-parenting families. If you are always putting words in your kid's mouth, endlessly asking rhetorical questions in a goo-goo tone of voice, or micro-managing their social interactions you may actually be hindering their development!
      :bag:
    • There are indeed developmental guidelines/milestones but there is no such thing as one-size-fits all "normal." My mother said I started speaking much later than my older brother did, but when I did I spoke in whole phrases/sentences, not just individual words.
    • If you haven't already, check out Wrong Planet, a site that is not just "about" ASD, but has much of its content contributed by folks on the spectrum, see especially the forum.
  10. Jared Lash

    Jared Lash Casting out the nines Supporting Member

    Joined:
    Aug 21, 2006
    Location:
    Northern California
    Really gut wrenching stuff man.

    I know we worried about 2 of our 3 young kids (both of the boys) being autistic or having aspergers because of behaviors they showed as toddlers and it was a difficult thing to think about. And while we were relieved to discover they weren't on the autistic spectrum I never forgot how it felt to face that possibility

    My heart goes out to you and I wish you, your wife and your son the best of luck dealing with things.
  11. hrodbert696

    hrodbert696 Supporting Member

    Joined:
    Jan 15, 2010
    Location:
    Like old Hampshire, but New
    Thanks for sharing your story, it's a powerful and terrifying one. My kids aren't autistic, but we've had other issues and I know how being a father through these times can push you to the limit. Some of our friends' kids are autistic and it calls for extraordinary patience. For a kid that young to attempt suicide is incomprehensible, but it happens. I'm so glad your son is still with you. I hope he's getting all the help he needs.
  12. BayStateBass

    BayStateBass

    Joined:
    Jan 25, 2012
    Location:
    Central Massachusetts
    He generally does, but that, in itself, provides certain challenges. Danny is aware that he is different, and that awareness makes him very self-conscious. He is high functioning enough to recognize that he is not like the other children, and this frustrates him. A lot. He has wanted nothing more than to be just like the other kids, so anything that he deems "different" with regards to counseling, treatment, or educational plans is usually met with some resistance from him. Being ridiculed most of his young life, he is not exactly happy with any sort of program that would draw any attention from the other children. So he doesn't like being tested differently. He hates being taken out of the classroom. He does not enjoy being on an IEP, even though it is what is best for him. In some ways, he'd rather fail at things than use any accommodations that would allow him to succeed if they are noticeable to the other children. So it can be tough to moderate everything, keep him happy, and also get his needs met.

    It's interesting raising him, and often heartbreaking. We have probably made a ton of mistakes, but I'm hoping we did some things right. One of the things that always comes up, and we see it a lot with other parents we talk to, is how many accommodations do you make? How much do you bend the rules for our child who does not "fit the mold"? One thing that struck us is that we saw other parents with children older than Danny who had adjusted their entire life, and the lives of their children, to make huge accommodations, or change the child's world, to appease what the child wanted or they felt the child needed. And what we saw with this was children that had virtually no ability to function in a world that did not match what they were trained to live with. One thing that resonated with me was the idea that one day, my son would be thrust out into the world and would have to exist in it, as it is. Nobody was going to change what they did for "Special Danny". So I made it my goal to work with my son, no matter how hard, and teach him how to exist in a cold world that would have no interest in his condition and would still maintain the same expectations of him that they would of any other person. It's made it harder for both of us, but I think it's probably the best thing for him. Maybe I'm wrong, time will tell.

    It's cool talking to him. He's actually a good guitarist. Much better than his Dad. Although he doesn't want to pursue music the way I do. But it's funny, he thinks thing through so much. So he has this big plan; he's going to go to a tech high school so he can be an auto mechanic. Then he wants to go to a tech college to further his education after high school. After that he wants to become a dealer mechanic for a few years, then open his own garage. In his spare time, he is going to play music, and work in music production somehow. I have to laugh, but in a good way. He tells me he has no interest in being in a band like me, or like his grandfather. He doesn't want to write or play songs live. He actually wants to become a DJ and spend his spare time mixing and chopping up songs, making new arrangements and sampling stuff.

    Every day is a new experience.
  13. sjeverett

    sjeverett

    Joined:
    May 10, 2013
    My 13yr old nephew is Autistic. He was diagnosed before starting school. My sister and brother in law are always on the go with speech therepy, gymnastics, swim therapy, and the private school he goes to. They went skiing in Colorado a few months ago at a facility that was geared towards autistic children. They also went to Key West for a swim program where John-Ross got to swim with dolphins. Its hard for me sometimes because I'm very close with my nieces but not so much with my nephew. Not because I dont want to be but because he only gets to see me a couple times a year and unless he's around a person constantly, he doesnt interact with them.

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