From Denial to Acceptance: Life on the Autism Spectrum (Part 2)
Posted by admin on May 17, 2012 in Blog | 13 comments
1 in 54 boys are on the autism spectrum and my son is that one. As a parent, an autism diagnosis broke my heart yet it explained so much. It explained the speech delay, it explained the lining up of toys in a row, the head banging (yes, Angel bangs his head now when he is upset). It explained the constant seeking of sensory stimulation, limited expressive language, hyperactivity, and why Angel is still in pull ups with little interest in being potty trained.
When I got his progress reports in Fall 2011, my mom advised me to look up developmental pediatricians. During my search, I found a remarkable special-needs advocate, Sarah Birnbaum. With Sarah’s guidance, we decided to have a neuro-psychological evaluation done instead. The appointments were interesting but that is for another blog post. I remember I was out of town when Angel’s dad took him to his last appointment with the neuro-psychologist. At the end of the appointment, he called me and I immediately asked how the appointment went. He replied, “Oh, the doctor thinks Angel may be on the spectrum.”
My heart dropped to the floor. He said it as if he was telling me that Angel had a cold. I am not sure if he fully understood the ramifications of what he was saying. I do not remember anything that I heard after that. I asked some questions… I think. Then, I hung up and the tears began to flow. I cried my eyes out that day.
When we got Angel’s diagnosis, I started wondering if it had been caused by something I ate during pregnancy. Then, I remembered that I was the “model pregnant lady.” At least, I thought so. I did not drink alcohol and I avoided second-hand smoke as much as humanly possible in New York City. I worked out, took my prenatal vitamins daily, and I ate healthful foods. I also avoided chemicals as much as I could. I was the pregnant lady who won’t even wear nail polish to avoid chemicals and harmful fumes.
I know that there is no definite cause for autism. During Autism Awareness Month, I read about the many possible causes. They include: maternal obesity, paternal age, vaccines, food, and the environment. The reality is we still do not know for sure. Yet, I still wondered, if it was something that I did.
I remember crying night after night. I grieved because I knew that my son’s life path will not be the same as typical children his age. I also listened to others trying to comfort me by telling me that everything will be ok. How did they know? I didn’t even know.
With this reality of autism in our lives, comes a new appreciation for everything Angel does.
If he puts on his socks, we tell him good job.
If he uses his spoon to eat instead of grabbing food with his hands, we encourage him.
If he sits on the potty, even if it is for 15 seconds, we praise him.
If he tells me to be quiet when I scold him, I smile.
Why? Because when you have a child with significant a speech delay, EVERY word is precious. Even the naughty ones.
A few weeks ago, I went to pick Angel up from school to take him to speech therapy. As soon as he spotted me, he ran toward me and yelled “Mommy!” He had never called me Mommy, spontaneously, before. I was thrilled and proud. The tears came and my heart swelled big enough to love him even more.
At this point in our lives, I have become “Angel’s” biggest advocate. I am also joined by a great team of people who love him and care for him. My team includes: Angel’s dad, grandparents, our family and friends, teachers, therapists, our advocate, and doctors.
No more will I listen to anyone telling me to wait and see. I refuse to wait and see when Angel can be getting the help that he desperately needs now. As we navigate this world of autism, I pray for the strength to continue to help him develop into the young man that God means for him to be.
How did you feel when you found out that your child is on the autism spectrum? What was at the top of your to-do list? How supportive were the people around you?
I look forward to hearing from you.
Sincerely,
Miz Kp
I am Miz Kp, the creator of Sailing Autistic Seas. My Web site is dedicated to my son "Angel" who is on the autism spectrum.
Thanks to the team. Angel is special and deserves special attention. Musubah
Wow Miz Kip your story are so true and it brings back reality. I hope you keep posting because it is such a motivation for other parents.
I remember crying when I found out that the little boy in my life was diagnosed. I remember going to work and researching it and I went to youtube to look at videos that parents captured of symptoms of the diagnosis. I remember watching a child repeatedly ask where someone is after an adult replied and I began to cry as the child still continued to ask. I remember trying to research stories of good outcomes because I wanted to read stories of children who overcame it. I remember one story about a month ago on the news where a child, who was diagnosed years ago and was now 12 and he said in sum and substance: I used to stare out into space when someone asked me a question and answer them when staring into space…. but I’m normal now. I really wanted to cling to that hope. Amazingly, I wouldn’t want my little boy in any other way because as he is I love him. I remember about a year ago, I was sitting by the computer and he was sitting on me and he pulled his left arm around my neck and I thought what is my baby doing. He pulled my face down to kiss my cheek and this first sign of affection at 3 years of age warmed my heart so much. Then about 3 months ago, I noticed he repeated everything I said. I remember after the first diagnosis crying while reading online that kids on the spectrum may repeat things they hear and that would not be a sign of knowing anything, but just a symptom of the diagnosis. But my baby will point to an apple and say “apple”. Sometimes he will point to a a peach and say apple and when I say peach, I believe he is learning the difference.
I didnt quite grasp what was going on at first, I thought that Nick just needed a few speech classes. During early intervention was when it hit me….this is more than a speech delay. Night time was the hardest for me and it was then when I cried and cried. I could not understand why this was happening to me.
As I speak to parents of older children, I wonder if the tears ever stop because they still cry at times. I guess as time goes on, we can cope the best way we know how and love our children even more.
I am a mom of three boys who are on the spectrum, they are 15,5, and 4 yrs old. With my oldest son, I cried, with my little ones I already suspected there was something wrong so I wan’t surprised, but I still felt sad and a bit heartbroken, from my own personal experience as a single mom raiseing three on the spectrum, I have learned to be very strong, everyday I put on my suit of armour and go to battle for them, a battle that will never end, because it does not get easier when they get older, it gets harder, and for that, one has to be prepared.
Thanks for sharing your story. I can only imagine how it is raising three boys on the spectrum. I encourage you to keep reaching out to your support network including those online. I like your analogy of putting on your suit of armor because that is what we need to face the world and help them face the world. If you live in the NY area, please check out my events and support sections. Thx.
I do not know where to start, but I am glad I was able to come across this site. I was really distraut about this autism epidemic, but now I have a better understanding on how to deal with it. I love my child regardless of whatever he is diagnosed and I will always fight for my child’s freedom and well being.
When l read the start of your comment, “l do not know where to start” l think that is what many people feel and makes me realize how important support networks are. l think and truly believe that children on the spectrum are blessings, gifts from God, people made to be most innocent with the capacity only to love. That’s what makes me smile.
Angel’s smile and the constant “yeeehhhhheeee” are a reflection of your tremendous courage, strength, patience and love….you are one of God’s greatest gifts: A Mother Angel!!
Thanks, B. Your support means so much to us. Always has and always will.
I just started reading your blog today – I’d book marked it last week, when it was linked to another blog I read – but finally now just got a chance to read.
I didn’t know a thing about Autism before my son was diagnosed. I hadn’t even seen the cliche of Rainman. I knew it had something to do w/ being less social & I thought my son was pretty social, so whenever my search for answers on his various behaviors & delays led to a page on Autism, I clicked out of it.
He was evaluated for Early Intervention services when he was 18 months old – we contacted them only for his speech delay, not even knowing he had a myriad of other delays & behaviors that were not typical. (First time parents). And we thought once he started w/ the EI therapies, he’d be talking in no time & we wouldn’t need much at all.
Fast forward about 7 months – still not talking, increased rage-filled meltdowns & night terrors. Our pediatrician recommended a neurologist, as a developmental would take too long to get an appointment. We had a bunch of appointments & one was the Autism test. And then during that test, I started seeing the two specialists present making notes at various points & I knew. I just knew. I held it together while I waited with my son for the results & through the surreal moments of them explaining what PDD-NOS & Autism are, along with the follow-up appointments & recommendations they gave. I called my husband on the way home. And then I cried. I pulled it together & then cried again when I talked to my parents about it. I still didn’t know much about Autism, but I knew that day that our entire future & outlook had completely changed. And boy did it ever.
My son’s made amazing progress since then & I know that we are lucky in so many ways. But it takes time to adjust & readjust again & again.
Thanks so much for sharing your story, Jenny. Our journey has some similarities. I also thought Angel’s only issue was speech. I totally agree that it takes time to adjust and readjust again. Acceptance has been a journey for me. I am also so happy that your son has made progress. How old is he now? Angel will be six this year.