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
Love this Ali. I remember a lot of this time too and some of the thoughts I had then. I remember watching him ealier than 2 years old playing numbers on the keyboard, first 1-10, then 2,4,6,8,10, then again 9,7,5,3,1. As a PT's daughter I thought, wow this little man is special and super smart! Wonder if I fully shared that at the time? Simon is a gift to all of us and the challenges this has brought you and Chris are a compliment from God - he know's what you are capable of! Love you three! Liz
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Thank you very much for sharing the beginning of your story!
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Ali - what a wonderful post. I've been following your family's journey for about a year now, while at the same time embarking on our own journey. I totally agree with you that it is SO IMPORTANT to go with those feelings in your gut. If your pediatrician tells you to 'wait and see', contact early intervention yourself. Our pediatrician said, "Ah, he's just got a little speech delay. There's this early intervention thing in the state, but he won't qualify." Here we are now getting OT, PT, speech, hippotherapy, and early intervention preschool. :) Needless to say, he's no longer my son's pediatrician. We found a wonderful developmental pediatrician who's willing to take parents' feelings and observations into consideration.
Thanks for continuing to share your journey - Simon is an amazing little dude.
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Such a wonderful post -- love that you let Simon be who he is! Such a wonderful amazing gift to any child :-) So amazing of you to keep an open mind (tough as that is) throughout this process, to keep in mind that you need to, as parents, do what is best for your child....
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lovely post. you're the best, Ali. how lucky Simon is to have you as his mom.
how old is Simon now?
assume you know Dr. Temple Grandin's books. her mother also wrote a book about what it was like finding out that Temple was an autistic child. Imagine you'd like that one. i came to Temple's books (Animals in Translation & Thinking in Pictures) from the dog angle. (I'm one of the ppl who scrapped their dog at your "Fave Pix of 2005" in NoVa!).
hugs to you & Simon. slowJudy
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Ali,
I don't know you, or Simon, but what I see in photographs, scrapbook pages, your book and blog is that you have a beautiful, handsome son who is blessed with wonderful parents who are loving and working toward the best life path for him.
God Bless you all.
Susan
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I'm so glad that you've come so far in doing what is best for your son. My daughter is in EI and has a very significant speech delay. She is the youngest of 3 and it took awhile for her to get into the program. Thankfully our Ped and ST fought for us.
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S*I*M*O*N is one lucky "little dude".
-p
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Thank you, Ali, for sharing more about your story. I am at the point of just having contacted my country's early childhood intervention program for my son (now 19 months because he has no words)... our intake is scheduled for Monday... they come ask me to fill out forms and then schedule the evaluation.
My other child(my 4 1/2 year old daughter, had sensory issues... and I agree that when you have one it's interesting because you do not realize they are different. It was when she was with other kids that things seemed to pop out and become very noticeable. And getting a diagnosis.. and tools that we could use to help her cope (and us) was *very hard* to come by. On of the places that we went to, a supposed special center that was held in high regard, made us feel like it was our fault and that we were bad parents. Until we found the OT that we connected with it was extremely hard. Jessi, too, lined things up methodically. So we, at one point, thought it was Asperger's... but it turned out not to be... we though it was trichotillomania (since she had pulled out almost almost her entire head of hair - not easy to see this happen to your little girl) but it wasn't.... and instead the vague "Sensory Integration Disorder" was given to her. So, being a book person as well, I read everything I could. The Out-of-Sync Child was the biggest help in helping me understand what was going on. Things seems to be better... I think it's just that we are coping better... although we still avoid certain situations if we think it could be an issue.
I look forward to hearing more about your situation and experience and learning more about autism. Thank you for the links and for sharing your story. Simon's very lucky to have you two as parents. It's all about being your child's advocate. And always loving them no matter what is going on.
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Ali,
Thank you for sharing your journey with us. For being so open to the world through your blog. I've written to you many times as a mother of a son with autism. I literally could have written your post. We did the same things in the same time frame as you did and got similar answers from "experts." Thank you for being such an advocate. It is very comforting to know that there's someone else out there going through a similar situation.
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He is SUPER WONDERFUL SIMON!! Ali - thank you for sharing yourself, your family, and your journey with me. Thank you. thank you. thank you for being super wonderful Ali!
Robin
P.S. Simon's bubbles are on the way! : )
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You are a very inspiring woman in your own right and I am so glad you are educating others on Autism. Over 10 years ago I worked for a woman attorney who had THE most difficult time getting a proper diagnosis for her autistic son and then a long drawn out fight with our local public school system to have him educated. Times change with education and awareness, thank you for sharing your story.
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Thank you for sharing Simon's story. You all are truly blessed to have each other.
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This was a very cool read. Neat to look back and see things with a different perspective. I bet I could do the same with Seamsu but hadn't thought about it before. Thanks for sharing this.
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What a wonderful read, you are such an inspiration :)
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It is so wonderful & refreshing to see people with influence (and you are that person, ali) use themselves & their time & energy to share, open themselves up, and give.
What
a
God
thing
...that your talent as a 'life artist' ;o) has such the following that it does & as a result of your acheivements you are able to share & give so much. I applaud you & can only imagine the blessing you & chris & simon are to each other's lives. <3
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Great post, Ali. So insightful.
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Ali-
FYI...there was an article in Scrapbook Retailer magazine this month about scrapbooking and children w/ autism. Thought you might like to check it out.
Thanks for your story! Keep up the great work w/ Simon.
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Ali,
Our nearly 12 year old has Asperger's Syndrome, according to the assessment from the school district. He had early intervention also, to age 3, then started in a Head STart program at the elementary school, which was the biggest help for him. Initially Alex was labelled with Expressive Speech Delay, and with PDD-NOS (such a nice catch all). He would exhibit some Autistic tendencies, but was not falling in a classic range of behaviors. Once we had the newer label (and I still wonder if a 'diagnosis' from a pediatric neurologist is necessary, even though I am very confident in the school's assessment based on their testing results), I started reading also. Even though my reading was centered on Asperger's alone, I found Songs of the Gorilla Nation: My Journey Through Autism, by Dawn Prince-Hughes very interesting. It gives a voice to the brain that is inside our kiddos, and helped me see some things differently. Simon is unbelievably blessed to have you and Chris as parents.
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Thank you for sharing your story and insights. By doing so, you may help other parents seek an earlier intervention for their own child.
Much of your experience with Simon at age two reminds me of our own experience with our oldest child at the same age. Our son had speech and language delays at that time, as well as a few quirky habits. Due to a misunderstanding, I initially didn't think I could pursue diagnosis and/or treatment for him UNTIL he was three. That cost us a few months in time and therapy. When our son was almost 3, he was finally evaluated by a speech therapist, audiologist, OT and PT. He started speech therapy at that point and progressed rapidly. Despite some sensory issues, it was determined that he didn't need OT.
To make a long story short, our son was ultimately diagnosed with Auditory Processing Disorder. He is almost 5 now, and doing so well that he was just released from speech therapy. I hope you see the same encouraging progress with Simon. . .Wishing you all the best.
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