Today’s #Autism Discussion is about what you felt when you learned that your child has #Autism?
What was your initial reaction to hearing those words for the first time?
For me personally, it literally felt like my entire world was made of glass and had just been shattered. That the only way that I can describe it.
Please share your experience in the comments and hopefully by learning you aren’t alone, you’ll feel less isolated.
This is the best way I can think to describe what I felt.
[youtube width=”640″ height=”420″]http://www.youtube.com/watch?v=Af8mB9ABuJA[/youtube]
@Silachan very well said. Thank you
When I found out about it in myself, I felt validated. Like there was a REASON i struggled with everything. I wasn't stupid afterall. I wasn't dumb, lazy, or your typical teenager. I wasn't just a weirdo. I was autistic, and that explained why I struggled with things that no one else understood. The pieces came together.
Now as I go through therapy, I'm finally gaining some of the puzzle pieces of my life that were hidden from me. I'm finding out more about myself, and just how much I became affected by the bullying, the misunderstanding, the ignorance because no one knew I was autistic. They all just thought the same thing- "She's just different. Lazy. Unmotivated. Unorganized." etc. But no one saw how much effort I put into trying to pass as "normal" as possible.
It was a relief. I was in denial for the first half of the year, but after that I accepted it. It's not until you accept it and you understand what it encompasses, does therapy begin to properly help address the secondary issues that come along with it. Now I'm no longer ashamed to say "I'm autistic". It's a part of me and honestly I wouldn't change it for the world. It's shaped who I am today and I like who i am 🙂
I was relieved, in a way. I had spent so many years not knowing how to help my son, who didn't respond to any behavioral interventions, feeling helpless and often blaming myself. It was good to know I really wasn't crazy- there was something wrong neurologically with him, despite all my family being in denial. I'm glad I found out, because it started me off on a journey to help him, and though it's been a long road he is making steady progress and catching up to other kids his age.
@DeeBrake @whiterose I know what you mean and as my heart breaks and my eyes tear up all I can do is giggle as a wonderful memory comes to me. We have a teenage girl Chelsea who is a good friend/sister to me. She is a senior this year and she has a special bond with Riddick (6). I sat down with Riddi & explained this year that he has autism that his brain works a little different than ours, because he couldn't understand why his classmates didn't do stuff the same as him! She was talking about a boy in her class who also has autism to me in the living room. Riddick was finishing his supper. He jumps up runs into the living room. "Chelsea I'm Riddi I have autism I help your friend! My brain works same as him." Then he ran back and started eating. I was just in total shock that he had remembered that and so proud he wanted to help. I met this awesome woman at a confrence that when her son had a meltdown in public she had business card that says "my son has autism" that went on to explain it and she would just hand them to whom ever was standing and staring. I loved it!!! Probably not helpful to you but sharing is so helpful to me!! LOL
@MelindaKGraham @DeeBrake @whiterose That's actually not the first time I've heard of someone passing out business cards like that. I think thats a great, noncombative way of dealing with the less than understanding public. 🙂
It was a relief. Angie didn't get diagnosed until last year(she was 9), but always was suspected off and got great support from school without any diagnosis.
When the suspicion came across at the age of 2.5, it was huge feeling of fear with many unknowns on what is a head of us.
@fibromamaby3 Hi Lizzie, Yes as mothers we take a lot of guilt i think… i was always told NOSSD (not otherwise specified sensory disorder, for those, if any, who dont know) and because the twins were born premature and only 2 1/2 pounds each, they were followed closely by many doctors. So when Ayden failed a milestone it was noted and they questioned me about other things. i kept feeling like "they are hinting about autism, but my son does NOT have autism, it's something else". as time went on, my father kept asking if Ayden was deaf or partially deaf. and we would sneak up on him and clap to try to test the theory. Ayden's fixation on lining objects up was sort of a nagging ah ha moment waiting to happen that i was denying. i knew it was going to be autism but i kept calling it "sensory issues" the food issues, the clothes issues the fixating the sounds…. all sensory input issues… well that IS autism isn't it. i just didnt want to say the word. the doctors following him set up therapy from direct home services, they came to our house and played with him. it was great i could see him learning in leaps and bounds. i remember thinking HA it isnt autism, he is just ummmm something else. i remember the speech therapist writing on her pad AUTISM and giving a look to the OT, i felt angry. i said you keep writing autism, but he speaks at home he just doesnt want to speak to YOU. she told me i need to stop trying to protect him and consider having him tested. i felt like he was being bullied and that her personality was just off putting to my son. i wanted to scoop him up and run far far away from speech therapy. well, after i missed an appointment due to unforeseen schedule conflict, i was sent a letter, if i wish to reschedule the missed appointment i had to call, otherwise a no show was considered as "dropping services" and i never called. i was relieved to not have to torture my son to tears and big boogery crying over simple speech when he would say "words" to me at home. well, a while later the pediatrics team that was following him all along called me and asked if i had filled out some forms she sent 6 months prior. i had not. i KNEW they were to determine autism and i was ignoring those papers. THEY HURT to think about. the doctor told me she would send more and asked me to just fill them out n case, it might just determine he is normal, but either way i would get an answer. they referred us to a child psychologist, Jason, and he was very gentle with ME… i asked alot of questions about autism and aspergers, questions other people were giving such clinical explanations about… Jason explained little things, like how AYden;s mind was working. how he HAS the intelligence you just need to train it out… i filled out the papers…. Jason told me, i needed to get myself prepared, that even though everyone else isnt sure or think it is NOSSD, in his opinion it will be autism…… and in a while… and a long wait list, we got our diagnosis.. so yes i delayed it, and yes i felt guilty for that, and yes i could have ran off for a diagnosis when he was 2… but WE as a family had to come to terms with it, and during all this time Ayden was seen by a direct home specialist, an OT, a child psychologist and a speech therapist… and also pediatrics and preemie specialist… add in there some other doctors… IF we had a diagnosis at age 2…. it would have been a pediatrician and a home therapist (often with very little training) to do ABA and bore the heck out of Ayden with repetitive activities (which is what we have had for the last year and although it helped it was quite trying on his patience). in the end, even thought i initially felt SOOOO guilty about "dropping the ball" i realize in the end, i had not dropped it, we just juggled it around a bit. but that feeling took a while to come about after the diagnosis.
@fibromamaby3 DNA based genetics was an infant science at the time and they had to blame someone or something and because they saw mothers who dampened down their responses(in order to prevent meltdowns) with children having flat affects unless screaming. Kanner incorrectly assumed that that the mothers were the cause and the children the effect instead of the other way around. Behavioral science was not in existence at the time and so cause/effect were not well understood in psychological terms. Just another way to make us beat ourselves up.
@fbhmom2two LIZZIE! So glad you're coming out from lurking! And I agree about the acceptance by family is so important–especially as there are so few children born with ASD who have no relatives with ASD traits if not diagnosed! My family denied for years that anything was wrong with my daughters and still are not accepting of their oddities.
Rob being negative about you suggesting your son might be ASD or PDD fits in with my experiences. The perceptions of men are focused on very different things than women when hearing diagnoses about their children–at least in my experience they do–I have been on both sides of the desk and the men take a dx of autism much different than the women. Many run away emotionally and disassociate from the family completely. Dad is there physically but not emotionally or mentally. {Denial is not just a river in Egypt!} This leaves mom carrying the emotional baggage all by herself because she has lost dad's ear and she has no time to connect with a therapist because she is too busy running the newly diagnosed child to all the appointments for assessments with all the new therapists. This is why Rob's blog is so popular with so many ASD moms. Thank you, Lizzie for sharing your husband!
Karen
@Batty @fbhmom2two @fibromamaby3 for those that don't know, Lizze is my better half and wife of almost 10 years. I'm overjoyed that she is commenting as I love her opinions. 🙂
As far as me fighting Elliott's diagnosis, I wasn't really fighting it but more like questioning it. My basis for compassion of Gavin and Emmett. Gavin was clearly autistic and Emmett wasn't even verbal at the time. By comparison, Elliott seemed "normal".
Does that make sense? I just didn't see things the same way as Lizze at the time. I thought that Elliott's behavior were more mimicked and some are. However, it really necessary real for me during kindergarten orientation. I left in tears because I finally saw what Lizze and our boys therapist had been saying.
Lizze and I always had a unified front despite the variance in our assessment of the situation.
I do think that dad's have a much more difficult time accepting something like this. But the truth is, a diagnosis of autism doesn't change when you're child is.
Feel free to connect me if I'm wrong Lizze.
@fbhmom2two You know, with Elliott Richard Rob fought against his diagnosis at first, as well. I mean neither one us *wanted* the diagnosis but in the same respect, I was more accepting initially. Where it almost seemed to me like Rob felt if he fought long enough and hard enough that he could actually change the outcome. Not that he ever loved Elliott Richard any less or felt differently about him as his son. I'm just usually the one who is more accepting of diagnoses…perhaps because I have so many of my own.
I had completely forgotten about that…It's funny (I seem to be saying that a lot today.) how someone can say something which triggers a memory isn't it?
@fibromamaby3 @fbhmom2two I honestly don't know why that was. Maybe it was because compared to Gavin, Elliott seemed very, very typical.
@fibromamaby3 I often think of the wasted time arguing with my husband about 'labeling' and his reaction when he saw first hand how our son functioned in what hubs believed would be a normal activity, easy peasy.
It was a soccer game – pee wee soccer – and our son had NO clue about team sports or collective thinking AND was nonverbal. I thank God every single day for the coaches he had, patient and kind, and very, very supportive. His teammates were frustrated by his inability to team play but allowed him space. Other parents, some quite competitive, grew to cheer for our son if he took the stop to kick the ball. then came the day my husband took a day off to see his star play soccer. Having been an all-star, all-state football player, his expectations were high. My daughter and I spent the week leading up to the game preparing my husband for the game.
So proud to have his dad in attendance, our son was more active than usual and managed to steal, dribble AND SCORE A GOAL. Wrong net but the entire place, other parents and teammates, cheered and congralated him like he's just won a gold medal. it was HUGE. Dad was furious. "What's WRONG with him? OMG" and our devastated son charged from the field headed toward the car, vomiting all along the way. I have NO idea what happened after son and I left the field, what others said to my husband, but to tihs day, a decade later, whenever my son thinks of that day, he cries. For the week that followed, parents and coaches called to check on him and cheered when he came to practice and the last game the following week.
I'm grateful for the experience as a parent, destroyed for the experience our son had. He still talks about Mr Garcia and Jose (coach's brother who did lost of 1-1 with our son) as if it were yesterday as well – and grateful for the outpouring of support from TOTAL STRANGERS that we STILL don't get from close family and friends.
Lizzie, as for the tripping a memory, I find it interesting how often that happens and then find myself thinking about how the random chance crossing of nerve-endings creates a thought but then wonder how it works for my son's brain.
Thanks for letting me share! And thanks for the blogs and inspiration I find here, too!!
Because of the road we'd traveled to that point, it was a relief to realize but came very late for help early on. At 13, I've known our son was on the spectrum since he was 2; he was formally diagnosed THIS YEAR (2012). Having always known, we were attending various therapies and groups for years. What caught me off guard most was my husband's reaction. He was always quite verbal about my assertions our son has PDD or ASD in a very negative way.
Being able to accurately and quite adequately relate events and hearing from my husband's mouth that the man I knew him to be was still there, during the evaluation process, helped me see him as brand new and we work together now for our children.
My point is to say that I'm really just now, all this time later, processing, rejoicing, grieving ~ in short, breathing. I'm glad to be a part of a place where I can honestly say that for me it wasn't a matter of accepting it; it was working to have Aspergers/ASD be recognized and honored by family, too.
It's funny what I remember and don't remember. Not funny ha-ha, of course. With Gavin, I remember Dr. Reynolds saying, "Asperger's is difficult to understand. When he comes home from school and you ask, "Gavin, how was your day?" he's more likely to respond with, "I saw a red balloon." than anything relevant.
I don't really remember Elliott Richard's diagnosis. I remember filing out the questionnaire at his 1-year, 2-year and 3-year check-ups etc. because we were TERRIFIED that we would be blessed with 2 special needs children. Especially, since that was about the time things were initially starting to get REALLY nasty with Gavin. For some reason, out of *everything Gavin had going on* Autism/Asperger's was our biggest fear.
Emmett John's initial moment of diagnosis will forever be etched in my brain, like a bad tattoo I can't have removed.
We thought he was deaf. He had passed his initial test at birth but failed every test since then. He wasn't responding to noises – loud, soft, SUPER loud – any of them. I felt horrible for weeks because I had discussed with his paediatrician that the options were severe to profound deafness or Autism, I PRAYED for him to be deaf! I began learning sign language. I looked for a class for Rob and I to take to further our knowledge of sign language so we could teach Emmett John. I even began teaching him basic signs. Then I went with my birth mother and took him for his ABR (a detailed hearing test where they check to see if the ears aren't working or the brain isn't processing the sound while the child sleeps).
He PASSED and the nurse looked at me and said, "Well, look on the bright side, at least he's just Autistic." I fell apart and lost it. Even thinking back on that day breaks my heart all over again.
And those are my long, rambly stories. :-
As a writer, I found writing about it helped me. For me, my reaction was too much to verbalize to loved ones:
http://www.hippocampusmagazine.com/2012/04/passed…
http://www.youtube.com/watch?v=Af8mB9ABuJA
there was a mix of emotions. first i felt an "I KNEW IT" relief. finally someone was going to tell me i wasnt imagining it. and immediately after i felt like "I SHOULD HAVE DONE MORE EARLIER AND FOUGHT HARDER" i felt like i failed for years at pushing harder to get my son the needed help, he DID have early intervention but it was like i was repeatedly told he was just a little quirky, and a little shy… but i KNEW there was more to it and never pushed hard (i have since learned that the therapy he got at the time was JUST PERFECT for him and i would not change it. i was always doing what was best for him even without a diagnosis) and after that feeling i just CRIED and CRIED and CRIED i knew finally there was an "answer" but it was like now it was carved into a stone now. "hello, i'm Dee and i have a child with autism." just tasted so bad in my mouth… and even though i knew it all along, it still tasted bad! acceptance took a few days to sink in, even though i knew. the relief was mixed with pain.
@DeeBrake Thanks for sharing.
@DeeBrake I felt like that with Emmett John. Like I shouldn't have spent so much time focusing on sign language (which ended up helping him learn to talk in the end). I should have fought harder for Autism based early intervention but there was no way for me to know.
Still, as mothers, we beat ourselves up over what we feel we should have done regardless of what we have accomplished for them. The unattainable goals we set for ourselves, huh? 😉
FYI—there was a theory devised by Leo Kanner (who named "autism") in the 1950s (that was debunked almost immediately but which is still being thrown up into the faces of parents even today): that of refrigerator moms. Mothers who are so cold that they destroy the ability to feel emotions in their children and cause them to become autistic. Mothers compared to the SS and Nazi stormtroopers! Even though it was proven that cold mothers didn't equal children with autism, others in the field of psychology, particularly child developmentalist Bruno Bettelheim, took up the hue and cry to promote their own self-importance. If ANYONE says this to you, fire them right away! Doesn't matter of the person is your doctor, your child's psychiatrist, therapist, social worker, your minister–fire them immediately because their intent is not to help you and your family, but to tear you apart from one another. These are the people who want to tell you that everything you are doing to help your child(ren) is wrong and that you need to take them in hand and PUNISH them while you are being open and emotionally accessible. Then your children that have been labeled autistic will be CURED. NOT!!!
@Batty Honestly, I think that firing them would be second on my list. I leave the first your imagination.
Excellent point.
@Batty Honestly, I think that firing them would be second on my list. I leave the first to your imagination.
@lostandtired I know–me too, but I have to remember that I am the only parent my kids have. I don't think that visiting mom in jail is an effective treatment for autism or anything else–LOL!
@Batty I've heard of this theory before, although never with the term "refrigerator moms". Why is it that no matter what we do, even though we are harder on ourselves than anyone else could ever be, they are always ready to throw us under the bus for this stuff? Geez oh Pete, we can't win.
I remember 2 reactions: relief and despair. I was relieved to know there was a "term" for what was going on with her. I was in despair because there was now this label and I was left without knowing what to do next.
@whiterose i know what you mean. it is like being handed a certificate. congratulations we know the answer….. NOW WHAT…. that "LABEL" carrying so many stereotypes and expectations of struggle was hung around a small boys neck. i even asked the doctor… how shall i introduce him, now. "this is my son, he has autism?" she said…. say "this is my son" but when curious eyes and people wanting explanations surround you, you feel like you need to pull on that label chained to his little neck and show them. Is that is all a label is good for, explaining away the oddities? it isnt like they handed you a label and an owners manual to go with it….
I was grateful and relieved. I knew that there was something different about him from the time he was a baby. It was nice for someone else to finally confirm that I wasn't just some overbearing, over worrying mom. As a parent, we know out kids best and when I did get that confirmation, all the naysayers didn't know what to say.
@Brianne Lynn Well said.
Relieved I knew he was special from the moment he was born and now I was going to keep figuring out how to make hislife the best it could be…just like any other child, just like my other son. I was so tired of people telling me it was because I wasn't parenting him right or if I'd just do this .. no leave me alone I KNOW my child I KNOW that I'm trying my best there is something special about Riddi that makes him see things differently that was it. We still struggle but each day is a wonderful messy hard day.
@MelindaKGraham Thanks for sharing. I can totally relate.
For me I was relieved. Granted my daughter has asperger's and is quite high functioning. I did not "lose" her in a way many parents with kids on the spectrum did. I was relieved because finally after all of my research someone with a degree validated what I knew for some time. There was a reason for all of her "quirks" (tantrums, eating, feelings). Now we are at a point of finding resources and trying to find a therapist that she can talk to that is covered by insurance and that we can afford that doesn't involove driving 1 hour each way. Living 45 minutes from Phoenix, AZ one would think that these resources were more plentiful. I am also recognizing signs in my son who is 4 1/2 that he may qualify for the asperger's diagnosis as well. The jury is still out on my husband and I as to whether we are on the spectrum. I grew up an extremely shy and socially awkward child, love to collect things and LOVE learning and researching. He was diagnosed as having ADHD in 1980 but he also shares many characteristics of the spectrum. We do know that out 6 yr old daughter has ADHD and our oldest who just turned 12 has always had sensory issues and is a very black and white thinker. Imagination was and is a huge weakness for her. We are just one special needs family trying to survive every day through all of our quirks and eccentricities. some days are better than others and I am thankful that we are believers in Christ who gets us through each day.
@JenniferWhynott your story brings up a really good point. How many people feel relief because you have finally figured out what was going on and what to do about it. Sometimes knowledge is power.
Thanks for sharing 🙂
@JenniferWhynott I was going to start with funny and I think I still will … Funny my husband & I share some spectrum qualities. I can see how he came from us and how a mixture of our quirks lead to him. He was not taken from us like so many others had happen he came into this world just as he is. He is moderate to high functioning so my feelings probably would be very different should my experience been different.
@MelindaKGraham @JenniferWhynott So many parents fail to recognize what you elegantly stated. Gavin was taken from us. He was like every other kid until he turned 3 or 4 years old. We put him to bed one night Gavin, and he woke up a different person.
By the time we figured out what had happened, it wasn't devastating because we had already lost him. Now we learned the name of the kidnapper, so to speak.
Thank you for saying what you have because so many people don't get that. 🙂
@lostandtired @MelindaKGraham @JenniferWhynott The children in the fairy tales that are taken away and a child of fairy left in the place is silent and tantrums–this is how autism was described from at least the dark ages on. That is how my girls were. Now when we talk about their childhoods, neither one can remember anything–so we say that when they were little they communicated in the language of autism and that is why they can't access those memories–they are in a language they no longer speak.
When I first heard about Gavin, it wasn't devastated because I barely knew what Autism was. When I learned about Elliott and Emmett, I was devastated because over the years since Gavin was diagnosed, my heart had been broken countless times seeing how he struggled.
the 2nd and 3rd time around, I knew more and I was completely heartbroken from the start.
In that one moment, it felt like all my plans for the future had been shattered.
The way i explain it to others: when i found out about my son having autism, it was like my heart was ripped out and a ton of bricks dumped on my head. Grief and shock and then feeling utterly alone.
@KarimanElgoharyShama I can totally relate.