So how did we get to where we are today? I want to go back to the beginning of this journey and start from there, filling in additional information where it makes the most sense. I started blogging in November 2004 which was 11 months after we began the process of trying to figure out what was happening with Simon.
Simon's diagnosis was slow in coming. In the span of a lifetime it was quick, but in the life of a two-year-old it seemed to take forever. Our initial concerns began just before Simon's two-year check up. He wasn't matching up to the "standards" set in books and online parenting resources - as a new parent, the standards are often all you have to go by. At that time Simon said just a few recognizable words and was not stringing any of them together. We also noticed that he had a tendency to gain and then lose words. He would learn a new one, use it all the time, and then it would disappear from his vocabualry.
We talked with his pediatrician who suggested we get in touch with an early intervention program in our county called EC Cares. They would make an initial assessment and we would go from there. The phrase "many boys just talk later" ran through my mind and supporting friends echoed that sentiment. Chris and I were feeling concerned, but the idea of autism was still very far from our minds.
Once you start the process of early intervention, even simply for speech delay, it can take quite awhile. Phone calls, questionnaires, home visits, evaluations, etc. - you feel like you are answering the same questions over and over. And yet, it is all about getting him on the right track. It is all about early intervention. I can not stress this enough. If you have questions or concerns, check with your pediatrician. If they dismiss you, or downplay your concerns and you still feel strongly that something is going on with your child - get a second opinion, contact early intervention yourself, keep pushing until you get your child what they need.
By the end of 2004, as Simon was approaching his third birthday he was only saying a couple of two-word phrases. Earlier that summer, after beginning to receive early intervention services for speech delays, we began to question whether something else was happening with him. He was exhibiting other "interesting" behaviors such a lining things up over and over again in a very methodical manner, saying his ABC's and counting to 20 but not having a verbalization for "yes" - these were a couple of the things that made us question what was happening with him. (For more information see: What Should I Do If I Think My Child Has Autism or Autism Resources or ASA Diagnosis & Consultation)
Around this same time, Chris' Mom saw a program on TV about autism and mentioned it to Chris. We both thought "naw," but in reality we knew very little about it. We started reading about it online, obsessing over it, questioning everything, feeling afraid, wondering. We pushed to have him evaluated locally - he was put on the waiting list at the Child Development Research Center and our 6-month wait began. We could have gotten a quicker evaluation, but we wanted something that was more comprehensive: at CDRC Simon met with a developmental pediatrician, an OT, a PT, a social worker, a child psychologist, a speech pathologist, and an audiologist who collectively came to his medical diagnosis (here is a post from that time period - for more, go to the archives and read January 2005).
A diagnosis of autism is not simple. For Simon it was "probable" autism. What does that mean? One thing it means is that he was unwilling to complete some of the tests (he was three at the time - sound familiar), but it also means that the professionals saw things in him that were alarms - things that pointed to autism. Also, around here (and elsewhere I assume) you need the daignosis to receive services. In addition to his medical diagnosis he was also evaluated by the Early Intervention/Early Childhood Special Education autism teams to be able to receive certain services within the school district.
Being the parent of an only child with something not quite right with them is interesting. You have nothing to compare their behavior to; nothing besides kids at the playground, in the playgroup, or what other parents say online or over the phone. In some ways I have seen this as a blessing - Simon is Simon. We know no different. When we see him out amongst other children is when we really see a difference in his behaviors.
This morning I went on Amazon to gather together a list of books I have read since Simon's diagnosis. There are so many more available now, just one year later.
I remember Chris and I walking out of CDRC (where Simon received his medical diagnosis) and knowing that the next stop would be the book store. We are book people. Books seem safe and comforting; the whole knowledge is power idea.
These books are not easy reads. Some are considered controversial.
The first book I read cover to cover in just three days was: Unraveling the Mystery of Autism and Pervasive Developmental Disorder : A Mother's Story of Research & Recovery. After reading this book we immediately began the gluten free/casein free (GFCF) diet. Milk was removed three days after his diagnosis. Gluten, which is much more difficult to remove, took us months and months to get to the point where we felt like it was completely removed. It is a daily battle.
Others of interest:
Special Diets for Special Kids (if you are doing the diet this is a must have)
Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder
Evidence of Harm : Mercury in Vaccines and the Autism Epidemic: A Medical Controversy
And a couple novels:
Daniel Isn't Talking : A Novel - Ordering this one today. Looks interesting.
The Curious Incident of the Dog in the Night-Time
That was really the beginning for us. Looking back it is blurry. I am glad I have this blog as a record of many of my feelings during that time - I can see myself then, remember better how I was really handling (or not) what was happening.
And through it all, the most important thing has been Simon. That he is super wonderful Simon.
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75 comments
Bravo Ali! I am a former early intervention specialist now teaching about it in college in Illinois. You have done a great job of promoting early intervention. So many parents feel that using services is admitting that their child has something wrong. I understand it, but it is too bad for children. Thank goodness that there is more information out there. Too bad there's still not enough. I loved the video you posted a few days ago. I'm going to play it in class in a few weeks. Thanks so much for sharing your feelings and I know you didn't share them all. Take care and keep fighting the good fight. Hope Chris succeeds and can help even more someday. Love your work and your blog.
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Ali,
we, too, are book people. I have devoured sections of the book store and Amazon.com, trying to learn what I could about our son's diagnosis. It has been helpful, and one of the most blessed parts of it has been the ability to reach out to someone who is just starting on this path, to be able to say "it will be ok" and "you can do this".
The diagnostic path is long, and scary, and frustrating. We went to our pediatrician, who just told us Zeb was 'unique'. Well, yes he is, but he also has a diagnosis that requires some help, and it would have been nice to start on that help a little sooner. Also, a mental health specialist who told me, a couple of years later, that she suspected autism or AS when she saw him at his day care, but didn't say anything because she thought it might upset me.
So parents need to be incredibly pro-active about this. I can't tell you the number of times I said to a doctor, or therapist, or nurse, "I may be way off base here, but I'd rather come across as an over-protective mom than look back and think 'if only'."
Thank you thank you for sharing this so openly and honestly. You truly were put in this place at this time to be of use and service (my favorite phrase) to those around you. Your forum allows you to reach many people and spread the word, offer comfort, direct others to help. Bless you, Chris, and Simon - a very cool and very lucky little boy.
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Thank you so much for sharing your story, Ali. I am a special education teacher and wish more parents were as proactive as you and Chris are with Simon. He is blessed to have the two of you as parents.
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Thank you so much for sharing. Simon is one lucky boy to have such amazing parents. Its so important for you to follow your heart when your trying to give your child their best life, best shot, best future. Your doing a wonderful job!! An inspiration to parents of all kinds of children.
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Ali, isn't it amazing the ride you are on. All because of a glowing spirit named SIMON!!! you are a wonderful woman - and a beautiful soul - given this gift.
Keep it up. You are helping so many more than you will ever know.
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Not being the mom of a child on the Autistic spectrum, but being good friends with someone who has two boys on it, I can't recommend "The Curious Incident of the Dog in the Nightime" enough - it is really good and gives an excellent picture of the thought process.
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you absolutely amaze me on so many different levels. i love how you share your story!
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What amazes me from time to time is that while no two children with autism are the same, the process that parents and children go through to receive this diagnosis is almost always the same--the early worries, cautiously asking questions, referral to specialists, endless waits to see the specialists, trying on and rejecting other diagnoses, pinning hope on "it's just a speech delay" and speech therapy, seeking other answers when "just a delay" is clearly not the answer. And then those sickening 24 hours after diagnosis when half of your brain is overwhelmed and grieving for the child who was just taken away from you while the other half of your brain is saying "he's still the same child he was yesterday. He's still my baby who I love. Nothing really has changed."
It's been two and a half years since my son's diagnosis and your post just brought all those memories flooding back.
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Dear Ali,
Hopefully for so many others the fame that has been created for you do to a corporation will elighten the mass of people who are seeking for support and answers regarding the arena of 'special education'...and hopefully spur others towards early intervention and going with your instinct as a parent.
Thank you for inspiring!
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Ali, thank you for sharing your story. Peace and blessings to you and Chris as you continue this journey with Simon. Have a wonderful day!
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Ali,
As a middle school teacher who has had the priviledge and joy(and yes,also frustration, reaching each child-with or without autism- takes a different approach!) of kids with autism/ asperger's in my classroom I encourage people to read the Curious Incident of the Dog in the Night...really shows people a glimpse into the world of the child's mind...a resource that is different than other books...thanks for recommending this to others!
Kris
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Hi Ali,
I am going through this with my soon to be 4 year old daughter, Julie... At 16 months we thought she was deaf when she wasn't responding to us (she has a twin sister Maddie who was doing things much quicker). We went to get her hearing checked and that is when the audiologist told us she is hearing but we should see someone from early intervention. At this time she wasn't giving us any eye contact. Like you said early intervention is a MUST!! She started with therapy at 20 months and is still getting it. They "think" she has PDD. She will be four in May and she is talking with some stuttering but her therapists are hopeful.... We hopes for Julie is that she never feels inferior to her twin sister or to her younger sister Hannah (15 months younger).
But Early Intervention is definitely the key....
Mary
ps. See ya in Split Rock in January!!!!
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thank you Ali. this is a wonderful post.
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So cool. You guys are so cool. Love that your blog is an resource for me. I'm learning more and more.
Hugs to you guys!
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Ali- I'm always so happy to see how you keep Simon in the center of it all- he is your son, and he is who he is. You and C are such great advocates for S- it's good to see. So much of what we do as parents is mediating between the world and our children so that they experience life at a pace they can handle, no matter what kind of pace that is. Sometimes that takes more work. You're doing a great job!
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Wow. I do not have kids, but it moves me to the point of tears every time I read one of your posts concerning autism and/or Simon. You handle it with such grace. Not to mean it's a negative thing to "be handled." I just mean that you inspire me even when talking about something completely removed from my own personal experiences. I appreciate you for that. And of course for being a bad ass artist! :)
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You seem like such a great mom!
J
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Ali thanks for sharing your story (or shall I say Simons too!) You are an inspiration! Lots of love and hugs!
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I just wanted to thank you for being such an inspiration and such a wonderful advocate for autism. Looking back at my own experience of first finding out about Vince's autism, I remember that feeling of helplessness. We also didn't get a clear cut diagnosis of autism right away. One specialist even told us that Vince "is not autistic. He just hass PDD..." Of course now we know so much more. Vince would not be doing so well right now if it wasn't for Early Intervention. And now he in included in a regular education kinder class and ranks 4th in his class! He still has delays in speech and social skills but we never thought he would be doing this well in a regular education class. Where once before, it was difficult telling others that Vince had autism without me crying, I can now proudly exclaim "Yes, Vince has autism and he is just amazing!" Simon will have a wonderful future. With you guys as his parents, he's already won half the battle. Thank you again for advocating for autism.
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Thank you for sharing your story. I admire your courage - your openness. It gives others strength. Thank you.
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