Sad after getting autism diagnosis

posted 2 years ago in Parenting
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  • Post # 2
    643 posts
    Busy bee

    Allyg:  I’m so sorry. We all want our kids to be healthy and happy and I’m sure any news to the contrary is devastating. Just know that your son can still be healthy and happy and this diagnosis doesn’t necessarily mean his life will not be what you had hoped it would. 

    I wouldn’t be too hard on your partner – it’s all new to him as well. What you both need is support. You’ve done that for your son and that’s fantastic but don’t forget about yourself and your partner. 

    I’m sure there are local support groups in your area and I can guarantee there are online communities catered to parents who have children with autism. This is brand new and represents a new normal for your family. You all need time to adjust. Communicate with your partner and tell him what you need. 

    I wish all of you the best of luck. Get all the support, resources, and information that you can. This is the man you want to spend your life with and the beautiful son you created together – you can tackle this and you can win!

    Post # 3
    42135 posts
    Honey Beekeeper
    • Wedding: November 1999

    Allyg:  from the columnist Ellen Notbohm

    The autism diagnosis can feel like a loss, perhaps the loss of a vision that parents had for their child that may or may not be realistic going forward. They must adapt to that new image. It might well turn out to be no less fulfilling and no less rewarding than their original vision, but it is different and there is a period there where some parents have difficulty accepting it. And while grief and/or disbelief or denial are common reactions of many parents at the suggestion of autism, sad or negative emotions aren’t mandatory or inevitable. Some parents choose to react in the positive; the diagnosis comes as a relief, because now they know what they’re dealing with. They can gather resources, assemble a team, shape a game plan and move forward. That was my own reaction to my son’s diagnosis.

    No one, absolutely no one, can predict what your child may accomplish. At age three, my son was barely verbal, melting down several times a day and had severe sensory issues. I made every effort, every step of the way to see that he had the best teachers, therapists, family support. He’s in his twenties now, and I can’t even begin to list the things he’s accomplished: lives with autism without letting it define him, attended neighborhood schools and private schools, enjoyed Scouting, back-packing and camping, competed on swim team at elementary level and on track team at middle- and high school level, went to school dances (including prom), football games and other activities with friends, acted in community theatre productions, rides a bike, takes public transportation everywhere, cooks, drives a car, votes, graduated high school–as valedictorian, went to film school, has traveled by plane alone, manages a credit card and checking account, reported for jury duty, goes to college, holds a job, volunteers in the community, has been published nationally.

     I hope that’s enough to give you hope.

    I think what you are feeling is normal. I think what your FI is feeling is normal. We all process these things in different ways but get to the same point eventually.

    Perhaps you could see if there is a local support group for parents where you and your FI can get more first hand  experience from those who have travelled this path before you.

    Now that you have a diagnosis, you can do your best to ensure that your son receives the very best therapies that you can find for him.

    Post # 4
    151 posts
    Blushing bee
    • Wedding: August 2016

    Allyg:  I’m so sorry that you’re feeling so alone. From the perspective of someone who has worked extensively with autistic kids, the quote that julies1949 posted above is incredibly apt. I second the statement that what you’re feeling is absolutely normal – it definitely is.

    From a professional perspective – when you’re ready, start researching. Read all that you can, but most importantly, read up on your child’s rights. Find out what provisions your state makes for kids with your son’s unique needs. Assistance in finding, securing, and paying for therapy is available – and more than that, it’s your son’s right (under IDEA). Some of those therapies begin incredibly early. Look into music and art therapy as he grows. 

    A good place to begin might be your local school district. My experience is in supplemental education, but it is my understanding that the special services department would be able to provide you with an overview of what steps you should take at this point in his development and apprise you of any early childhood interventions offered. 

    Wishing you all the very best.

    Post # 5
    1230 posts
    Bumble bee
    • Wedding: June 2015

    Allyg:  Knowing nothing about your son or his case, I can totally understand how lost and out of control you must feel. I’m a teacher and work with all types of kids. In fact I have one student diagnosed with autism and another one I suspect who has it. What I can say is these kids, though “different” are special and challenging and hysterical and fascinating in their own right. These are kids that years later, when I forget all about the “normal” kids, I will remember.

    One is so smart. He is utterly fascinated with why people do things; he totally misses social cues. So for everyone, including me, we have to break things down in an intellectual level. Example: he didn’t understand the concept or benefit of “bringing food to your face, not your face to your food” until I broke down the mechanics of why and how. Sometimes he can be downright infuriating, but he always challenges me to do what I am supposed to do: teach.

    The other, while developmentally delayed with OT issues and a general disinterest in learning about anything that doesn’t interest him, is the sweetest, most sensitive, loving, adorable, and beautiful little boy. He makes me laugh EVERY. SINGLE. DAY. He seeks me out for hugs, needs physical and emotional connections moreso than any other kid I’ve ever taught. He mimics facial cues when unsure on his own. And for as little as he’s accomplished in his work, he is a sponge. It would be amazing if he only had a longer attention span. 

    So my point is this: I’ve worked with all types of kids with autism, ranging from violent and disconnected to mute to sensory issues, to poor social skills. I’ve also worked with regular kids who have driven me so crazy I thought about quitting my job. Kids are a lottery, and just because there’s an autism diagnosis, doesn’t mean your child will be forever doomed in life. Nor does it mean that a kid that doesn’t have it will be better off. Kids are kids and they all come with their sets of challenges. 

    Be an advocate for your child. Be consistent, stay strong, and know that there is support for families like yours. With good teachers and support, you and your family can weather this and find the best ways to educate your child. 

    Post # 6
    7281 posts
    Busy Beekeeper
    • Wedding: October 2011 - Bed & Breakfast

    PM me if you want. When DS was diagnosed with Aspergers I cried, and his psychiatrist, who is really good at what she does, just could not understand why I was crying. It was one of the most maddening moments of the whole experience. Why am I crying? My dreams for my child just got shifted in a heartbeat. The challenges he will face just because of how he is wired are numerous. And you want to know why I am crying?!?!?!?! What you are feeling is completely normal, and it will pass. You will create a new dream and it will be beautiful.

    Post # 10
    1136 posts
    Bumble bee
    • Wedding: March 2015

    Allyg:  I’m so sorry 🙁

    You are doing the right thing and like you said, he’s the same beautiful boy he always was. You are blessed to have eachother. The family your FI knows is a very sad situation and my heart breaks for their poor child if they’re not actively doing anything to help him..

    I can’t imagine how hard it must be for you. Hopefully with all the amazing things dr’s and scientists are doing his life will get easier as the years go by.

    You haven’t mentioned your concerns in this regard but it might help you to know that I was in the same class as a severly autistic boy when I was much younger (it was just your average school and wasn’t specifically catered to children with needs although he did have a carer with him) – and honestly he was just one of us. No one treated him any differently or disrespectfully.. He took part in everything we did along with everyone else. He was very sweet and i’ll always remember him.

    Support eachother and love eachother and know you are not alone xx

    Post # 11
    219 posts
    Helper bee

    I raised a child with Asperger’s.  My son will be 21 in September, and he is currently living with his roommates in an apartment while attending the State University getting his degree in Mechanical Engineering (He LOVES math). 

    There were times when I was actually relieved he had Asperger’s.  In high school, many of the kids would pick on him, but because my son isn’t able to understand sarcasm – all of the snide remarks would just go right over his head.  Example:  My son would raise his hand and give the wrong answer to the teacher when called upon.  A classmate would say “Way to go!” in a sarcastic tone and my son would reply “Thanks!!” with a huge smile on his face.

    Kids with Asperger’s/Autism sometimes will choose one interest to occupy their time and somewhat obsess over.  My son was interested in roller coasters.  Instead of getting bored and therefore getting into trouble during the teen years, he was at home playing his Rollercoaster Tycoon video game, telling me about how he wanted to design and make rollercoasters when he is an adult.  I told him to keep practicing with his math and doing good in school and then maybe one day he can be a Mechanical Engineer and get his dream job.  I took him to theme parks and we had the most fun ever riding the rollercoasters together, which is still something we do to this day!  This interest that he obsessed over kept him from getting into a lot of trouble – and redirected his focus on academics and his future.

    The autism makes them unique – but aren’t we all?  There are many things that I had been through raising him that were challenging.  I was scared to death to teach him to drive, especially since most kids on the autism spectrum can only seem to handle doing one thing at a time, but because of this we took our time.  My son got his driver’s license at the age of 18 instead of 16, and he is one of the most cautious driver’s out there because we weren’t in a rush.  

    I guess what I am trying to say is that many people with autism go on to live full and productive lives. Please don’t be upset over your child’s autism diagnosis.  🙂

    Post # 12
    2661 posts
    Sugar bee
    • Wedding: May 2014

    This really is a lot to absorb.  I am a mother myself, and I know we want the best for our kids.  Receiving a life altering diagnosis, is, I would imagine, a very emotionally staggering experience.  I can imagine you are overwhelmed.

    I hope once you have had some time to absorb all that is going on, you can find support from your healthcare team, church (if that is important to you), family, and others in similar situations.  Hopefully you will be able to find the new normal for your family.

    Post # 13
    3016 posts
    Sugar bee
    • Wedding: July 2014 - Prague

    It is normal for you to feel like this. It’s part of the process of accepting the diagnosis, so let yourself feel what you feel right now. Then move on from there. I suggest you do  a LOT of research. As I’m sure you know, the spectrum of autism encompasses a lot, and your child is of course unique.  

    Your husband is also processing these events and needs time to do so. Hopefully with time you will move out of the grief phase and come together with as much information and love as possible. 

    ETA: I wanted to chime in on what the above teacher said. I recently moved away from California, where I taught for 10 years. The student I remember with the most fondness was an autistic boy, Stanley. He was an absolute joy to work with and made me smile and laugh every day. While I know he will have challenges other students won’t have, I never once felt sorry for him or worried that his life would be anything “less” than any other student’s. He was an extremely happy boy and i think about him often.

    • This reply was modified 2 years, 3 months ago by  prahajess.
    Post # 14
    231 posts
    Helper bee
    • Wedding: September 2014 - Lubeznik Center for the Arts

    I think maybe you should try ABA (Applied Behavior Analysis) – I worked for a non-profit with a large autism center and ABA really helps kids develop their activities of daily living and can help them be less sensitive to environmental irritants, which I know can be really tough on kids w/ autism.

    I am not saying you should be too “hard” on your FI, but I would tell him in no uncertain terms that you will try every intervention (that is evidence based) to help your child achieve his potential, and frankly, that if he stands in the way, you will attack him like a mother wolverine. 

    I know I sound like an ass, but I’m just saying, there’s so much you can do for kids with autism and it would be a disservice to your child to not get those services. This is a tough diagnosis and I hope you and your family find the help and coping skills to deal with it – I think you will find your child to have special talents and skills and to be unique and wonderful in his own way.

    Post # 15
    474 posts
    Helper bee

    My youngest sister was diagnosed with a developmental/intellectual disability (along with being stone deaf) when she was 2 years old. I was 5, and I remember my mom putting on her sunglasses in the elevator of the clinic so that she could cry without my brother and I seeing. 

    Now my sister is 25, and lives with my parents (who are no longer devestated – far from it). From an outside perspective, it probably looks as though she functions on the level of an 8/9 year old. That may be true academically, but she has a part time job and cooks for my folks almost daily! She’s so fun/funny to talk to, and in her own way she is extremely wise. SHE IS THE MOST AMAZING HUMAN BEING THAT I KNOW. I can’t imagine life without her, or with her being “normal”. I’m so proud of all that she has accomplished. She has blessed so many people and taught us (her family) so much about priorities, patience, having fun, LOVE, etc.!

    I hope that you find that a little encouraging. I can’t speak from a parent’s perspective, but from a sibling’s I can tell you that your child will be a blessing, a teacher, and will be loved! :}

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