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
He IS fine. and you, too. Breathe in, breathe out. The rest is just the stuff of our lives. My heart goes out to you during this transition.
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Ali~
I am a distant admirer of both your scrapbooking and artistic abailities ~ all the way from Australia.
But most of all I admire the dignity with which you conduct yourself after what I am sure has been not only a draining day, but several draining months for you all.
The challenges that life throw us are not, as some suggest, to test us. Nor are they "sent" to those who can handle it. I have often been told that in the aftermath of two fights (so far) with cancer. I believe that when these challenges are sent to us, it is to demonstrate to us the BLESSINGS of life - because it is when you are under stress and pressure that the good things in life come into focus.
From my reading of your thoughts, you are an amazing Mum and Simon is growing into a truly amazing little boy. Your efforts, Ali, will be rewarded with your beautiful little mans love, now and as he grows into a bigger man!!
Stay positive - today's news will help you take the next step forward - one that I am sure you, Chris and Simon will take with courage, character and a camera on hand.
Kindest wishes ~ Kass
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been thinking about you and your family all day today and yesterday. i can only imagine how hard it must be to be away right now. thanks for the update -- and, you're right -- nothing's changed since yesterday. He is still the same old loveable Simon, only now he's got a diagnosis. one that will no doubt provide resources that would not otherwise be available to him or your family. sounds like you've got some big decisions ahead. you guys will be in my prayers. ;)
sara
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It must be so hard to be away from home right now...but you are right, it will all be fine. You are lucky to have Simon and he is lucky to have such loving, smart parents.
You will move forward as a family, a tight unit, and figure it out as you go along.
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I'm feeling sad too reading this~ I had hoped and prayed for a different outcome for sweet Simon. I'm sending you & Chris huge prayers & lots of strength to get through this time. As the above poster said, he is fine, he's your Simon, the boy you have always known and loved.And that's what it all comes down to, doesn't it? Please know there are so many of us thinking of you with positive& caring thoughts during this rough period. Hang in there Ali.
melanie
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You're right. He's the same little dude, and you have a ton of people that love you and will help you. Big hugs to your family.
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Ali - I don't know you (except for the fact that you signed your book for me in Bellevue) but I have been reading your posts about Simon. You are an amazing writer and I think you have documented your feelings perfectly.
I agree with you that he IS fine. When I start to dwell on the problems with my own kids I am always reminded that someone out there has it way worse than I do. When I was moping about my 2 year old daughter needing glasses I met a little girl who was about four - she was in a wheelchair and would be in one her whole life. It was exactly the kick in the pants I needed. When my friend was bringing her baby home from the hospital from his third stint with pneumonia (and complaining about another hospital visit) I reminded her that my sister-in-law never got to bring her baby home - he died in the NICU.
Anyhow, from what I have read I think Simon has amazing parents and you will all be fine :) Thank goodness you have great resources at your disposal and that you have an early diagnosis.
Take care (and give adorable little boy an extra hug for me)
Sue
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ali, my friend, i am again reminded how blessed Simon is to have you and Chris as his parents. No matter how hard things get, as long as you've got each other it will be ok. Praying for you as usual, with a special big hug coming your way!
Keep strong!
k.
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Isn't it amazing that there is comfort in a diagnosis? And yet, Simon is so much more than a diagnosis. Isn't it amazing how the love you have for your son doesn't change with the diagnosis it only grows more. And Simon he will always know and feel that love.
Be kind to yourself and each other on this journey. Your sharing the journey is an education for so many. Thank you for sharing the journey - may you never feel alone.
Traveling mercies to you
Leslie
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I feel your saddness through the post. Bad news is hard to take, even if you know its going to be coming. Keep your head up! I'm praying for you guys and Simon.
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Ali, I don't know what to say. I don't know you, and you don't know me. But, I feel like I have watched Simon grow up through your scrapbooking. The sadness in your post is evident, I know you were hoping for a different outcome. This I know, Simon has two parents that would/will do anything for him. He seems to be one happy little boy, and just like you said, he is still Simon. I bet a year from now, you'll be blown away with the progress he will have made. And, he'll still be a happy, loved, little dude. Hang in there.
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OOOhhh Ali,
I heard it in your voice in Dallas and I hear it here as well. I'm sorry it seems so "final". I do not walk in your shoes, but I know that feeling of "parenting" that is so hard. I'm thinking of you friend...
Mary-Kay
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Big hugs going out to you Ali.
After reading your post this evening, I was reminded of a quote that I found about 10 years ago and have since written in the front cover of my Bible: "We are always in the forge, or on the anvil; by trials God is shaping us for higher things." May you truly feel God's presence with you each step of the way--you and your fam will be in my prayers.
Simon is so lucky to have you and Chris as parents. The love you have for him is so evident. I loved watching you and Simon interact when my boys and I met you at Oakmont Park last summer. You have such a sweet relationship.
Thank you for opening up and sharing your life with others. You are truly an inspiration. Thank you.
~cc
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I was wondering how things went today. You are all very strong...getting the help he needs is a positive thing...everything will fall into place I am sure.
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no wise words, just lots of hugs and prayers coming your way Ali. and yes, he's the same dude. one who's very lucky to have awesome parents like you and Chris :).
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ali - another huge admirer from down under, no words just support for you today. He is the same boy you loved yesturday and he has the most amazing support team in his hands. his parents.
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Big hugs to you, Ali. You're such a good mom. He's lucky to have you. Both of you. And the both of you are just as lucky as he. :)
Sending love to you tonight,
g
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You are such great parents! What a wonderful family you are!
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Ali,
I cried when I read this. Declan, my 3.5 year old very particular late talker, so far has not been diagnosed, but we hear the austim label off and on.
I wish you the best and I hope you and your family find excellent services where ever you should move.
Peace-
Kristy
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Big hugs all the way from downunder.
You are an amazing mum ( or mom lol) and with the love and support of all your family and friends everything will be ok.
With how much you share about your family through your scrapbooking we have watched Simon grow into the amazing little boy that he is today. Even though we are on opposite sides of the world we love you all heaps and know that you are an amazing family.
Hugs to you all
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