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
A wise woman once shared:
"May you always carry a sense of hope in your heart. A belief that your life will exceed your expectations. That your dreams will come true. Know that you will face some disappointments, but arund the next corner is a new possibility, a new tomorrow. HOPE"
I came across this journal block (designed by you for Leeco Industries) just this morning before reading your post about Simon. Please allow yourself time to process your sorrow--to grieve for the loss of some of your expectations. You have that right. It's clear that you are a strong woman Ali, but you don't have to act strong all the time.
Then, when you're ready, put that grief aside knowing that your family is not in this alone. Simon will be blessed to have a network of loving, compassionate people guiding, encouraging, and cheering for him--and you too. Everything's going to be okay....
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Ali,
I know it's difficult, but please remember that a "label" is just that - a label. It is so easy for the medical/educational world to categorize everything - this one is "gifted", this one is "Autistic" this one is an athlete or artist or singer, etc., but it doesn't leave any room for the unknown possibility.
I've read scrapbook layouts where people have automatically said "this is my son John - 10 yrs. old, my daughter kate - 8 years old and my son Steven - 6 years old "autistic" - "ADD". Why not just say, "my son - Steven." What does it help to label him at every opportunity. Why not say this is my son, Steven, with the sparkling blue eyes and smile that lights up a room. What would he become if he knew that everyone described him that way instead of "autistic" or "ADD" or all of the other labels.
So good for you that Simon will hear, "I'm Simon, I have a great laugh, heart-stopping brown eyes, can run like the wind and can count to 20 and say my ABC's. I learn "differently" than others and have decided not to talk too much right now and I warm up to certain things slowly, but I'm still brilliant and talented."
Take Care,
Michelle
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Ali, Let me echo my support and send some love your way. I know it's been a diffcult time of change for you. A new challenge for you and Chris, another chance to overcome, be strong and live together.
Melanie
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I am moved by your post about your little guy, Simon. I bet he is an amazing man and you and your husband are even more amazing. When I was in college studying psychology, I was focusing on working with autistic children. This was when it didn't seem to be so prevalent like it is today. All of my studies and the two children I worked with daily made me a believer that autistic children teach us a new way to view the world. Sure, there must be order and process in place to facilitate smoother functioning, but it is in honing in on those things that I truly learned so many beautiful things about life and myself. There is something amazingly tender about any child with autism and what a gift you have to spend each day with Simon. You are truly blessed.
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ali,
i love you with all my heart!
know you are in my thoughts daily.
hope to see you soon!
love, jess
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Hey Ali,
your little guy is something special! I have thought about you and your struggles many times.
Since you are in SLC, are you actually at the Primedia offices in bluffdale? Maybe you could stand on the roof and wave to me? DH works next door, at UNC. maybe wave to him? LOL
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Well girl I have BEEN IN YOUR SHOES, still there but not so sad....(although I will not LIE and after 3 years of having my son be labeled autistic (higher functioning as well but still autistic all thesame)....I still grieve from time to time..maybe once a year. But I was so where you are. ANd I Felt when I KNEW and then it was confirmed, that I was out of my body...is this real? Why am I feeling this way when I KNEW in my heart he was autistic before anyone else did! Also.....I scrap my Seth all the time. There is a layout in the Paperkuts April/May issue that has "Then Fear & Now Hope" that I did on Seth (although they didn't show the photos opening up) and well YOU'LL SEE his progress. It's amazing. I read this TODAY of all days when Seth got his Kindergarten report cared with ALL GRADE LEVEL and ABOVE GRADE LEVEL IN READING. This is a child taht had sensory issues at 3, screamed when we went into Walmart or anywhere with loud noises, dind't SPEAK but maybe 5 words and didn't transition well at all nor sit well (he still wo'nt sit at the dinner table the entire time)...but GIRLFRIEND WHAT JOY WHAT JOY...you already know that! And it's SO GOOD to know and get the help Simon needs. I think b/c we got early intervention, that Seth learned to speak (using PECS, picture exchange schedules...using pictures instead of words) To SPEAKING and now talks non-stop..OH YES believe it and READS AND UNDERSTANDS..oh my gosh....you just never know. I only take one day at a time. I don't know when learning will prove MORE difficult. I"ve come so far, Seth has come so far, YOU CAN DO IT ALI !!! I don't know it's kind of strange, but I"m happy for you..happy that you've got answers, happy that it's so common and you won't feel alone (I felt ALONE 3 years ago)...and all that good stuff. I"m happy that you're so willing, and I'm so down to earth too--it comes in handy when you're learning to get creative and think LITERALLY for your child to learn better. Now I don't do much of that at all, or I do and just don't know it. LOL
SO CONGRATS to getting the help ya'll need!! Thanks for sharing your story, never being ashamed or embarrassed--that is the ONLY WAY TO BE!! Hallelujah...
So here's to our children....all of them!!!
Sherri Winstead
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Ali, i don't know you other than to say i ooh and ahh over your layouts and read each word of your journaling...you are gifted. simon is sweetness, that i can tell. you are the best mom for this little guy...hugs to you (from Canada).
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He is Matthew. He has amazing blue eyes that dance when he teases. He is smart and resourceful -- if he wants it, he can find a way. He is tender hearted and sweet, but doesn't like to cuddle up close. He is free-spirited and enthusiastic, but needs a predictable routine. He could say tracter at 18 months with remarkable clarity, but was two before he could say mom. He won the heart of his speech therapist within minutes, but confounded her easy assumptions. Why? Because he is Matthew. Matthew, my youngest boy. Matthew my beautiful, cherub-faced toddler. Matthew, my amazing, amazing son.
And so, I am Shelley, mother of Matthew. Shelley, who focuses on one sound at a time. Shelley, who helped Matthew master "p" and "b" sounds and has moved onto "h" and "w." Shelley, who meets with therapists and looks for answers. Shelley, who is careful not to hold her adorable boy too close or for too long, even though she longs to do just that. Shelley, who worries at night when it is quiet. Shelley, who looks at her boy each morning and is overwhelmed with love and hope and faith that her Matthew will become an amazing man because he already is such an amazing boy.
And you are Ali, mother of Simon. That's all you need to know.
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Hi Ali,
I am a fan of yours and a blog lurker. I don't usually post but had to on this. My son Jaron turned 3 in Dec. and was "labeled" developmentally delayed. He is now in a special needs preschool. He has been going to speech for a year. He has a twin, Jensen. I cried when I read your post. I just traveled that route in Jan. I don't have any profound wisdom - I am still struggling. I am just trying to celebrate every accomplishment as it comes. I am trying to look at things from God's perspective in that He has a purpose for all things. I will pray for you and your family. Thanks for sharing your life and thoughts with the world.
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Don't put so much emphasis on the diagnosis but on the extra help you will receive and in a few years you will most likely notice that he is growing out of this "label" the medical community has come up with. Most moms I know who have children who were high funcitoning that were diagnosed with autism or adhd said that by age 6 & 7 their children started to catch up with the others and were growing out the tendencies that were the basis of their original diagnosies. So just continue to be the best, most loving, understanding, supportive mom you know how and I promise you will see the light at the end of the tunnel. Structure and routine are your childs best friend. And seriously consider private schooling and a montisouri (sp?) style pre-school programs in addition to the therapy programs your state offers. My prayers are also with you.
God Bless and Keep Your Family in a loving protected environment, May the people who work with you and your child be the best trained in the areas that your child needs, may you be given the best advice first, may your internal instincts always prevail, may you know that a "label" does not change who you are or who little Simon has already proven to be - wonderful and perfect through the eyes of God, may you always have the strength to deal with all your days head on with a clear and happy mind, may this event turn into all things good and that Simon defies all labels becoming the most exceptional child ever, in Jesus' name I thee pray. Amen
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Ali, I've been lurking and reading your story. I'm a scrapper, who just happens to teach a classroom for children with autism, both prekindergarten and kindergarten. Know that Simon's teachers will also see Simon as a person. That he isn't just a "child with ASD" to them. I treasure each of my six children and love them for their own personalities. Good luck in finding the perfect teacher for your boy. He sounds like a joy.
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Hey Ali...what can I say that hasn't been said here?? Many wise words! I am a believer that attitude is everything...and yours is right on! I have no other insights really....I just want to add my hugs and send them off to you.
{{{{{hugs}}}}}}}
Lisa
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Ali, I just want to say that you have said things about Autism that even I can't. Just beautiful and wonderful words. I was the same way when they gave the diagnosis for Brendan and, though he is a million times better then what he was, he will, I think, always will be on the autistic spectrum. (((HUGS))) to you.
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Well, comment # 75? Will you get this far? Yes, I'm sure you will. I have to think though that we all have to give up and mourn the child we thought we would get, which makes the way easier to love the one we have. Who of course is a much greater blessing and more fantastic person than we ever could have imagined. Simon is a cool kid with a couple of great parents! Hugs!
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Sending hugs to you, Ali, from someone else who has been there. I can completely relate to having a feeling of a certain amount of relief at having a diagnosis - my son Jonathan had worn a variety of different labels through most of his childhood until he was diagnosed with Aspergers at age 12.
I'm happy to say that my precious boy turns 18 this month, and will be attending U Mass Amherst in the fall. There is always hope, there is always a light at the end of the tunnel - even if it seems far off right now.
Wishing your family the best, you'll be in my prayers!
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Big hugs to you, my friend. You are such an amazing soul. I am thinking of you...and I am continuously amazed at how strong you are and the wonderful "mama" you are. Keep on, girl. Simon is going to be fine...little dude. :) I keep waiting for when I can repay you by giving you a new mantra, but the one you got seems to be working for you. You continue to inspire me...and it is beyond creative inspiration at this point. You are a beautiful person.
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Ali,
I just happened into this blog thing a few weeks ago and yours was one of the first blogs I ever checked out. I was truly captivated by your writing, insights, thoughts...I sat there that first morning and read all your past entries and was truly amazed.
So you were definitely in my thoughts today and I am truly sorry that the outcome was what it had to be. But you and Chris are supportive, loving and amazing parents and Simon is sooo lucky to have you both. As you both are lucky to have such a neat little dude like him...like you said, he is Simon, and no matter what he will always be Simon...
My daughter was recently diagnosed with ADD & Auditory Processing problems so I know how it feels to have your expectations completely blown away. I've always known she was delayed with her reading and math skills even though she is soo bright otherwise but now that we know what is actually happening we have started our steps to make school a little easier for her. And we changed her diet too:) (we prefer to not go the medication route)
So I wanted to just let you know I was sending positive thoughts your way and know you WILL get through this with the same dignity you already lead your life:)
jen
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Ali,
I just happened into this blog thing a few weeks ago and yours was one of the first blogs I ever checked out. I was truly captivated by your writing, insights, thoughts...I sat there that first morning and read all your past entries and was truly amazed.
So you were definitely in my thoughts today and I am truly sorry that the outcome was what it had to be. But you and Chris are supportive, loving and amazing parents and Simon is sooo lucky to have you both. As you both are lucky to have such a neat little dude like him...like you said, he is Simon, and no matter what he will always be Simon...
My daughter was recently diagnosed with ADD & Auditory Processing problems so I know how it feels to have your expectations completely blown away. I've always known she was delayed with her reading and math skills even though she is soo bright otherwise but now that we know what is actually happening we have started our steps to make school a little easier for her. And we changed her diet too:) (we prefer to not go the medication route)
So I wanted to just let you know I was sending positive thoughts your way and know you WILL get through this with the same dignity you already lead your life:)
jen
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i never know what to say at moments like this...i always seem to want to crack a joke and pretend you didn't say what you just said. But the truth of the matter is, you are so brave and an incredible advocate for simon. i can't imagine your pendulum swing at the moment, but i will always be there for a beer and a laugh! love ya
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