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
The love that shines through for Simon is so wonderful - even with this news you realize he is the same little boy, someone you will continue to love, nurture and watch grow as he will love you back. You are wonderful parents to not lose sight of who he is, an individual. Who is very lucky to be surrounded by you are parents. Wishing you all the best.
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Big Hugs from here too.....and you are amazing! He is the same, wonderful little dude....and you are so cool and so wise. I have a friend whose son has Asperger's Syndrome and I respect her enormously because she has embraced her little guy's diagnosis.....and him. I did a layout about her and the thing I find most amazing about what she does is that she embraces him for who he is. All too often, I see moms who dwell on who they thought their children should be and not for who they really are.
He is Simon.......your gift! God bless you, Chris and that great little dude you've got!
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I hope you're comforted by the support here and elsewhere. Your family has been in my thoughts through the past few months. Thank you for your willingness to share your experiences and feelings through this process. Simon is such an awesome little dude!
Take care!
Kelli
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Hi Ali,
first, hugs. I know what you are going through. I am a cut and dry - find the answers person. My sons dg. was very difficult also. My best advice is to always research and network. I am continuously learning about diets, vaccinations, therapies, etc. Oh and most importantly the law and advocating for rights. If you would ever like to talk or have any questions feel free to email or peamail (jsiperko) me.
You are a wonderful mother and Simon will flourish w/ your love and support.
Jackie
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Simon is so blessed to have you and Chris as parents. Big hugs to you, Ali. Hope time passes quickly for you until you get home with your guys again.
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Big hugs to you guys, Ali. It's so nice that you have such fantastic resources where you live - to give Simon only the best educational experience.
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Oh Ali this just made my cry. Not because I know Simon dude is not going to get the best resources that he can (and has two kick ass parents), and that he is indeed one outstanding little guy, but that I know all too well the feelings that you are having right now.
the push and pull.
the give and take.
the researching until your eyeballs are about to come out of your head.
the sense of overwhelming that comes with a diagnosis like this.
Simon and Aiden are alike in many ways it seems, and I think what makes it more difficult for me is the fact that he is so high functioning, that when he does something like walk half and inch from the side of the wall darting his eyes across to the side, is that people give us strange looks. Still very hard for me to deal with that part. Very hard.
I am here for you if you need anything. everything. nothing at all.
hug that little guy tight when you come home.
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Ali,
Hugs to you and your family. I know this is not easy. I was with my sister when her little girl was diagnosed with autism 7 years ago.
They just spent a week at my house. She's fine. She is amazing.
As is your little guy...
Blessings,
Jacquie
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(((HUGS))) Ali. I am so amazed at your strength during all of this. Simon is one lucky boy.
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Ali,
I know that feeling, that secret hope in your gut that you're just overreacting, that they will tell you your child is just fine. Simon is fine, he is Simon, he's your boy. You know his needs like no one else. Simon is blessed to have such amazing, loving, spirited parents. All will be fine. I wish you and your family all the best.
d.
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I literally could come and give you a hug today if you need it. My thoughts are with you and your family. :)
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Simon is very lucky, Ali. To have you and Chris. And you are right. He is Simon. The same little wonderful amazing boy you've had all along. The same little soul who came to this world exactly as he was supposed to. To be your son.
I love you!
have a safe trip home.
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With knowledge comes power! And this is truly the best thing that could have happened... to just know what you are dealing with. Knowledge... and now a defined course of action! They have made such progress with this in children.... I have a friend who's little guy is doing amazing now that he has the proper support network in place. You can do this Ali! You will do this, and you will do it amazingly. Because you are you! :) A strong, capable women with a very supportive husband and family.
Hugs to you and your little dude!!
Shelley
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((hugs)) Ali---I know you guys will come through this with flying colors. He could not have a better mother to handle all of this for/with him!
april
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My son was diagnosed in December 2003 with SDD ( severe development delays). He was 40 months old at the time. He had delays in every area (speech was a big one for him) except for fine motor and cognitive. He started his special preschool class in Feb of '04 after 4 weeks of that we moved and he started in a special preschool class at the new school at the end of March that same year. It has been a year now and he is pretty much normal, only has a little trouble with with some speech (listening to two part instructions etc.). He will be in a normal kindergarten class in the fall. He is above average in reading and math.
I guess my point is, the school will help so much, I'm sure you have already noticed from the the short time Simon has been there so far. I'm looking forward to a year from now just to see what Simon is like. You are doing everything right! Simon WILL be fine.
-amy
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Ali,
We have a dear family in our church whose 8 year old son, Nate, also is a high functioning autistic child. For whatever reason, Mark (my husband) and I have been drawn to this little man since we moved here four years ago. He is, without a doubt, one of the most tender, loving and sweet children I have ever encountered. Recently, his mother was sharing with me a story- there had been a situation in which Nate had been hurt, deeply, by some family friends. It was the kind of story that you couldn't help but cry along with his mother as she shared. Yet Nate, sweet Nate, responded in the most unbelieveable fashion. I told Nate's mom, Megan, that her son, her precious gift, had so much to teach the world, this community, us. So, Ali, I trust does Simon. Your family will be in my prayers, daily, during this critical time of decision making and processing. May I leave you with this... "For I know the plans I have for you, plans to prosper and not to harm you, plans to give you hope and a future." Jer 29:11.
You are fine. Simon is fine. Christ is fine. Together, you three are unstoppable.
Kelsey
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Love the honesty and beauty in your words. Describing what is real, your (collective) lives, your emotions. You will make it through, you are making it through, together. Loving your dude. He is perfect, exactly how he is.
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Ali, you inspire me.
Artistically, intellectually, personally.
I've been reading your blog daily since meeting you at CKU-A and have to say that I admire your strength and view on the world.
You and Simon and Chris will all conquer this together, hand-in-hand.
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Ali
I step out of my life for a moment to read about yours. I feel humbled and my heart grows. I can never really step into your shoes but coming here I enter your heart a little and feel the humaness in that.
thank you,
i send you love.
k.
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no one knows what you are going through exactly, this time it is your family, your son, your lives. it's personal. just know that there are people out here who are putting you in their prayers and thoughts. you are an amazing woman, who has accomplished amazing things and will continue to accomplish so much more.
hang tough,
ann
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