We are parents of a special needs child.
A child with autism.
A three-year-old child who laughs and giggles and runs like the wind. A child who will rub his back against the wall in his classroom when it is time to transition from one activity to another. A child who says "awesome" with the best pronunciation. A child who hesitates before stepping into his sandbox and then carefully examines his shoes when he gets out. A child who comes into our bedroom each morning, climbs into my side of the bed, cuddles in for a moment and then whispers, "get up." A child who can count to 20 and recite the whole alphabet but has no affirmative answer (no "yes" or "yea"). A child who gets himself up after being put to bed to sit in his big red Simon chair and look at books. A child who loves to be tickled and chased by his Dad. A child who has the best smile. A child who asks to have waffles at least three times a day. A child who eats ketchup straight with his fork. A child that has the biggest heart.
The meeting today with the Autism team was conclusive as to where Simon stands right now. He now has a medical and an educational diagnosis of Autism Spectrum Disorder. He is high functioning, there is no doubt about that - but there is also no doubt that he is on the spectrum. He qualifies for additional school services through the state. Our family is in flux right now with a move on the horizon - either back into Eugene or Portland. Depending on where we move he will likely be placed in a reverse mainstream (50% normal developing kids and 50% special needs) preschool with a teacher(s) that has additional training with special needs kids and an emphasis in language development. We will be connected with an Autism specialist from Early Childhood Special Education who will come to our home and work with us on issues we need help with - including school recommendations. There are great supports here in Eugene - and I am sure in Portland as well.
I went into the meeting today knowing what the outcome was likely to be, but hoping in some place in my heart that they would come in and say that he was fine. Maybe that this was all an over-reaction. Something we as over-protective parents had made bigger than it needed to be. It feels more final now - not in an overly dramatic sense - just made more real. In a lot of ways tonight I feel like I am grieving again...similar to how I felt that day back in January after the initial diagnosis. I am tired. So tired. I am so busy with work right now that I almost can't let myself process it or I will just completely breakdown. And yet, I know he is fine. And we are fine. He is the same little dude he has always been.
And it really is so nice to have something concrete - something that is in writing that will enable him get the help he needs. That will help us explain to people when they are shocked to hear he is Autistic. Or help explain his special diet. Or explain why he needs a bit more time processing transitions or directions.
Chris and I are such practical people. So level-headed. But I know we
are both feeling really sad right now. I am here in Salt Lake tonight
and it is hard to be away from home. I just want to say thank you to all of you for your kind thoughts and prayers and words of support. For sending me emails telling me your stories about your children and other family memebers. I will get back to you soon. I just want you to know that it means so much to me to have people out there who care so much about our family.
And yet, I know it will all be
fine. He is fine.
He is Simon.
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111 comments
I have read and reread this post Ali. it is awesome. You just get it. You write what you are feeling so perfectly.
I have loved being in the front row watching Susan change hundreds of peoples views on children with special needs. Whereas before if I saw a child with Down Syndrome or Autism in the line at the grocery store I would have quickly looked away - now I engage and WANT to engage and NEED to engage.
You (who I am so proud to call my friend) are doing the same.
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As the mother of a son with DS - Cathy, that means so much for me to read your post! Matthew has changed the way that I view and react to the world around me. Having a child with special needs to me means that life is just takes a little more time. Matthew is who he is, and I wouldn't have him any other way! :)
Thinking of your family Ali!
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WOW! What a great and kind and inspiring note! Thank you for taking the time to include me, a total stranger, in this very delicate and intimate ...what...Challenge(?) Simon's not a challenge; Other people, mostly adults may become such; "situation"(?), I don't know. Just thanks for taking the time to write a heartfelt story.
thanks.
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Hi Ali! First, I echo the sentiments of many -- your creative designs and scrapbook work are an inspiration each time I have the pleasure of seeing your work or reading your articles. Second, I too have a son who was diagnosed with Autism Spectrum Disorder ... only it took us til he was nearly five to get that diagnosis. Like Simon, my son Wes is high functioning. We were so blessed to find a very small school here in the area where he gets the 1on1 ABA teaching, sensory integration, occupational therapy, etc. The progress he'smade in a little over a year is astounding. I know you and Chris will experience the same astonishment as you watch Simon flourish as he is aided through mastering those areas that trouble him. And you are also dead on in having that concrete way to "explain" thing to others. The differnce in how my son is "handled" by doctors and such after learning that he is Autistic is remarkable. And although it felt awkward trying to explain the first couple of times, people's understanding and adjustment has helped Wes move along through situations that used to terrify him (and usually lead to some odd behaviors or a melt down:)
Hang in there Ali, Simon *is* fine. As a friend of mine put it to me about Wesley: "Well, maybe for him he hears the colors and sees the sounds" I'm not sure why it resonated so much with me, but it did. Now to go watch Wes play with the vacuum ....again :-)
Lisa L.
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Ali,
I truly know what you are going through right now, as I have a son with the same diagnosis. I highly recommend the educational program you spoke of. Here in Florida it's called the Early Exceptional Learning Program (EELP). My twins have been in this classroom for two years now (exiting next month) and it has helped them tremendously! I was scared to put them in it at first, scared of the unknown, but so glad I did! It is so so hard to understand why this is happening, but all you can do is be Simon's best advocate and follow your heart. Take each day moment by moment and try to not think too much about the future, that will drive you nuts! Hang in there, we're all in this together!
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Hi Ali,
I just wanted to know that my heart is aching for you and your family. At the same time you have the most special little boy. You must feel so blessed. I just wanted to offer you a hug and a caring heart.
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Ali, I know you do not know me, but I admire your scrapbooking talents and my husband and I are friends with Carrie (who has a link to your blog). I just wanted to say thank you for sharing your story. I have friends who have a son that has autism and they, like you, just received a diagnosis. I will pass this site on to her, in hopes that she will see that she is not alone. She and her family is so strong and I think you and your family are too. My prayers are with you.
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you & chris are amazing.
little dude is a flawless jewel.
your family is PERFECT.
you are blessed.
you are loved.
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Ali,
Here in New Zealand I was just looking through your garden seeds on 2peas (waiting for the latest August seeds to pop up!) and I remembered telling my husband about your "Go Dog Go" layout from a recent CK, I think. (He was reading our 3 year old Maddie the same book and failing to get her to eat at the time). I told him that I had a feeling your son may be autistic from little things I had noticed in your layouts (such as his love of lining things up!). So just now I googled you and this popped up. Maddie is also autistic, although we are lucky in that she has great language skills despite obvious difficulties in processing spoken language. She also has an obsessive love of numbers and the alphabet. Like you no doubt do, I find it hard to tell people she is autistic because they feel they should say "oh no" or "I'm sorry" yet to us she is just Maddie and we adore her, as you clearly adore your gorgeous boy. She hasn't changed because of the label and we enjoy her just as much. It also seems to me that, with your obvious love of books, language and creativity, that Simon couldn't have better parents to help him achieve all that he can. Wishing you all the best, and I hope you know how your wnderful layouts about Simon have touched so many people even on the other side of the world. Love Lynn
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After 6 months of probing and sleepless night , my nephew of 3 year old is going to be austic or not and just now received the news from my sister that the little fellow has been diagonised as mild austic..
It seems the whole world has started sliping behind my feat and my sister tone of sorrow still eco in my ears.
I believe the God who has given this little guy as the first joy to our family will also give has courage and wisdom to bring the guy the way he wants to bring him up and fill us with the Lost happiness.
my personal prayer and wish for all who are broken in their sprits because their loved one is struggling with austim.
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"In a lot of ways tonight I feel like I am grieving again..."
This is me at this very moment. I was longing for someone who could truly understand what I'm feeling right now, so my first thought was to read some of your old posts (always a comfort to me). I can relate so much to what you wrote on that day. He received a clinical diagnosis of Autism today (the final report on the eval we've been doing since April). I know it doesn't change anything really... it just feels so real for some reason. I think I'm using your comment section as a journal, so I'm going to stop now... just thanks for being such an open book. You've helped me so much this year, more than you know.
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