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
I sure know what you mean about getting a diagnosis taking a lifetime! Jonas doesn't have Autism, but he deals with several other delays. Everyone kept saying, "this is normal, he's just a boy", but I knew better. It was really hard not to second guess myself, being like you in that he was my first child. There were times I thought I was just a really bad mother, and that was why he was struggling so much.
Then I had my daughter, Maggie, who was a complete 180 degree different child. She was quiet. She cuddled, she responded to me- everything felt so natural and so much more peaceful with her than the constant frusteration my son experienced with his delays. I stopped giving myself credit for either of their behavior- good or bad- acknowledging the fact that they each came with their own special personality and challenges because they were uniquely them. I also am trying to not feel guilty for the fact that due to both MY personality, and the extra stress of rasing a child with a few special needs, I need more breaks than the average mother, because I'm not dealing with the average child. I have one friend who is so good at reminding me of this. It is funny how we can understand and accept our child's needs, but blast ourselves for repsonding positively to our own needs. The mother guilt- does it ever end?
It can be hard to look at my children objectively some days, and I really struggle with trying to like them both equally. I always love them more than I have words, but on some extremely difficult and negative days (weeks), it can be hard to like them, each in their own turn. I try to remind myself that how either of my children are is perfect for them. They are EXACTLY who God intended to them to be, and they came that way, to me, and to our family for a reason, even if I don't understand. That thought gives me strength and helps me to have patience.
I was reading CK today, and I so very much enjoyed your article. I wish we lived closer. I think Simon and Jonas would be good friends. Us too for that matter lol! Thanks for the lift. Thanks for understanding how I feel. Thanks for not blocking my IP address for writing you a response longer than your post!
Hugs!
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this is so inspiring. man. thanks for sharing this story.
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love it when you share, a. And the love that you have for Simon again shines through. After reading your entry earlier today i looked at my son, and had the same thought,"that he is wonderful (Cameron)." Thanks for always reminding us of the treasure our child(ren) are. Hugs!
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Wow, 63 posts so far....thats got to say alot, doesn't it? Good on you for doing this. i take my hat of to you for this! I imagine it would be helpful and comforting for many parents going through the same thing now. You truly are an inspiration Ali, and i look forward to meeting you at Kiwiscraps.
Zina :)
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Hi Ali,
Thanks for sharing your story about Simon. I have a daughter with Selective Mutism and we have spent most of her entire life seeking help, looking for answers, reading, researching and advocating for her. Someone gave this passage to me at a Selective Mutism conference and I thought I would share it with you.....
Cassie
Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
* * *
©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.
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WOW!! WOW!!! You really amazed me in all the areas I see on your blog and through your art. It is not easy being mom but you went with your gut feeling that something was wrong and found out what problem ways good for you!!!! Thank you so much for your blog today you have opened my eyes to autism. i will keep you and simon in my prayers.
tonya boone
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I am hesitant to post just because so many others have and I don't want to overwhelm you -- but I had to! I truly believe that God selects special people for the challenge of parenting special kids. And you and Chris were chosen for a reason -- and Simon will thrive with your dedication and love.
Many hugs,
Lain
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Ali
These books rock it out!
Another that helped me when we were early into our diagnosis with David was The Out Of Sync Child and then The Out Of Sync CHild Has Fun. I just picked up Of Mice and Aliens by Kathy Hooperman and Buster with the Amazing Daisy by Nancy Ogaz. They are both super to read to kids (like 2nd grad-ish). They are like beginner novels where the main character is a child with a Autism or Asperger's diagnosis. Just for down the road:) It is so exciting to see books like these available:)
kellicrowe
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great post, ali.
thank you for sharing your story.
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Your commitment to Simon and your willingness to share your story - AND all those amazing resources - are totally inspiring. I'm as yet unconnected in everyday life from anyone with autism but completely taked with all research about brain order & disorder. Thanks for sharing.
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Ali - thanks so much for sharing the story of your family's journey so far with autism. We have two friends with autistic children and the progress both have accomplished is nothing short of amazing. (I think we talked about this at CHA) Simon is definitely a cool kid... and having two totally supportive parents is one of the big keys.
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Ali,
just saw aomething on Soap Talk(believe it or not) about autism. This woman diagosned her daughter with autism at the age of 2. Long story short she wrote a book called Awakening Ashley. You can go on their webiste and get more info. They did therapy with Mozart etc.
so weird that i was watching this just this morning. Might be something to look into.
We have a neighbor little boy with autism (10 yrs. old) one of the sweetest and the most polite friend my son has!!!
You and your husband and simon are very brave to be fighting a fight you were thrown into.
Love hearing about Simon and all your adventures!!! Keep Strong!
Suezi
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Ali--
I just faound your blog a few days ago and have enjoyed reading it. I love your book and articles in CK. When I read about what is happening with you and Chris and Simon, it reminded me so much of what happened to me and my family over 10 years ago when my then 18 month old son was diagnosed as being deaf. What a shock. How our lives changed. We had no idea about the new world we were about to enter. But I heard a story then about Spencer Tracy's son John who is deaf and after his diagnosis his doctor told John's mother something about what exciting times she had to look forward to. She didn't believe it then and I definitely didn't believe it when I heard it but, wow, it's so true. Life is truly amazing and blessings come from the strangest thing. Now, I wouldn't change anything. Life happens for a reason. It's that old saying "If I only knew then...
Good luck and don't forget to enjoy the ride, Mary
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Hi Ali! I am the mother of two autistic sons. I am so thankful that you've has the wisdom to start him on the diet. Along with the diet, we have used lots of other biomedical approaches, and they are what has helped our precious boys more than all the other therapies COMBINED. I wish for Simon's continued progress.
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Thanks so much for sharing your story. It's almost exact to mine. My son just turned three two months ago and while he talks, he doesn't CONVERSATE at all. And he says his ABC's backward, counts to 100, lines things up and the list goes on.
He is in regular preschool right now and seems to be doing okay. Although he's the kid that doesn't participate all the time and sits and watches all the other kids.
We aren't really sure what our next step is so I came on here for resources.
Thanks for sharing.
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