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
Oh Ali, my heart goes out to you because I can feel your sadness and it must be very hard to be away from home on a day like today.
I've always felt that special little people are given to very special big people.
Simon is so very lucky to have you and Chris as parents. God knows the gifts that you have to share with each other. You are awesome parents with an awesome little dude.
I know that it's tough to hear the words that make it a fact.
sending hugs your way!
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simon is so lucky to have the two of you, such caring parents, and you're so lucky to be blessed with such a fantastic little boy.
thinking of you and saying a prayer that you'll find teh answers you need along this journey.
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Ali, this has to be overwhelming to process right now though you've been gathering information, meeting and preparing for this ultimate determination. But as you suggest, your little man is far more than a label or a diagnosis can imply -- your words in their simplicity are indeed profound...."He is Simon." If you keep that one thought in the forefrot of your mind as you deal with all of the practicalities, you and Chris can be stronger for each other and for Simon. I lift up my prayers, good thoughts and positive energies for your family as you begin processing this. Simon's journey has only just begun and with you and Chris championing him, God has many great things in store for the him undoubtedly. Keep faith, hope, and trust; keep smilin' and peppering your conversation with those positive words that Simon has already learned well "Awesome, dude!". Ciao, Dee
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Ali - thanks for sharing this. Reading everything you said, I felt like I was right there talking with you over coffee, nodding my head, agreeing with your feelings on things, listening and hearing you with my heart. I think you have a phenominal mental and emotional approach to this part of your lives. I am glad that the 3 of you have each other because you will soar together through this.
big hugs -
Terrie
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Ali,
I am so glad you guys finally got the answers you need to move forward. My prayers are with you and your family during this time of transition, and decisions. I truely believe that God has given Simon to you and Chris for a very apparant reason. You 2 seem like wonderful, loving, giving parents who will do absolutely everything in your power to make sure Simon has everything he needs and more. I can see through your scrapbooking that Simon is one very loving, happy, vibrant, energetic little dude. He's Simon...Who could ask for more? (((((HUGS)))))
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Ali,
I understand how you feel. It was devastating to get that diagnosis. But as you said, he is still your Simon and the diagnosis has not changed him one bit. Now you will know what direction to take to get him the help he needs to grow. It is amazing what can be accomplished with all the programs out there now.
My son Jacob attended one of those preschool type programs for 2 years and it was wonderful! He learned so much having all the other kids around. His language really started to take hold in preschool. Jacob wasn't answering any 'yes' or 'no' question either but has really improved with the help of a private speech therapist. We are getting ready to mainstream him into first grade this fall. This from a boy who had no language at all just 3 years ago. I love my little dude, Jacob, as you do with Simon. I know that he will blossom with the love and attention of parents like you and Chris.
Hugs,
Jan
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Just sending hugs your way, Ali!
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Dear Ali,
I, too, feel like I've watched Simon grow up via your scrapbook layouts. I was in your class at CKU-A and remember you talked about autism issues. I think you're right: it ALREADY is okay...it's just a different kind of okay than you were hoping for. If anyone is up to the challenge, it's you. I'll keep you, your husband and that precious Simon in my prayers.
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Dear Ali,
I, too, feel like I've watched Simon grow up via your scrapbook layouts. I was in your class at CKU-A and remember you talked about autism issues. I think you're right: it ALREADY is okay...it's just a different kind of okay than you were hoping for. If anyone is up to the challenge, it's you. I'll keep you, your husband and that precious Simon in my prayers. Celeste
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Ali-
Hang in there. As a mom of a child that has diabetes, I know times get hard. He is definitely still your "dude". My thoughts are with you and your family. I can tell you are amazing parents.
Angela
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Much love to Simon, Chris and you!!!
What an AWESOME family!!
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HUGS Ali!!! I hate those days after "big" appointments. With my little guy Alex we have known since he was born that he had pretty significant special needs but every time we are going to see a new Dr or therapist for a new diagnosis I have to spend a couple of days telling myself that no matter what "they" say, he's still Alex when we walk out of that room. I remember the morning before he underwent a hearing test under anestsia I took pictures of him waking up so that I could remember that he looked the same before we knew for sure that he was deaf. The words didn't change him.
Being a mom to a special guy is hard work but also the most rewarding work. You'll never take a milestone or accomplishment for granted. Everything that Simon does, says, feels will be celebrated for one reason or another. You'll get so much joy out of the little things.
HUGS again!
Moriah
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You and your husband have been blessed with an angel. Simon chose YOU before he came here because he knew you would love him and care for him with complete unconditional love. You must truly be an amazing woman to be blessed with such a wonderful little boy. My prayers are with you and your family.
Hugs-
Angelique
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Ali, you are so wise. Like you said, he is still Simon. Now you and Chris just have to help him become the best Simon he can be. He has you to love him, be his advocate, to cheer him on. He IS fine.
You'll be in my prayers.
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Thinking of you Ali...my prayers are with you, Chris and your amazing little boy, Simon.
Hugs
mcc
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I know your grief, I know your sadness, and I remember telling my husband that the dreams I had for our son were gone...and my husband, my wonderful husband said, "Our dreams haven't changed, we're just going to take the long detour to get there..." it's been 10 years since our initial news, and he was so right. the son we have is more unique and wonderful than i ever dreamed. Hang in there.
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Ali---I won't pretend to have any wise or sage words of advice to offer you. But I can offer support and friendship and a ear to listen if you ever need to talk. You're right about one thing for sure...he is still your sweet, lovable, little dude, the same boy he was yesterday and the day before. The same little boy you so obviously love and adore and with all of that and your strong support system, he will be fine! Just fine! Take time to let it all sink in, and then continue forward like you've been doing all along. Life throughs us curveballs sometimes, but I truly believe that God never gives us more than we can handle and he saw something special in you and Chris when he blessed you both with Simon.
Have a safe trip home, hug your little dude, and just....breathe! Thinking of you and sending you prayers and hugs!
Trina :-)
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Simon is so blessed to have you guys as parents! I am a teacher and can tell you there are TONS of resources and people to hold your hands out there. It is a journey, but you won't be alone.
Laura
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Ali-
After admiring you for your work for a long time and as a person I wish you and your family all the best. After meeting you for a brief moment and taking your class at CKU-MN I feel in some small way I saw the real side of Ali. The down to earth look outside the box, bigger picture Ali. Know you are admired by many and we all wish you well in you and your family's life. Stay strong you are one cool dude yourself. Simon is lucky to have you as a mama.
{r}
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Yet another comment of support and to let you know how many other mom have been through the same thing. We are here to support each other.
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