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
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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sorry for all the posts...my computer is freaking out a little
jen
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Ali,
The longer I read your blog and take my peek into your life, the more I realize what a strong and courageous person you are. And you are right. Simon is who he always was. He has not changed, he just has another label added in to the many he carries already. He will continue to grow, to learn, and to amaze you. He will continue to bring you joy and to be someone you can be proud to call your son. And you will grow along with him and learn more about yourself on the ride.
I see all the comments from those who've experienced a similar situation with their children. I can't relate, as I've never dealt with anything like this with my son. But, I can relate to the emotional upheaval that something so stressful can cause. I've been there. Please take a moment to feel your emotions - to grieve, to cry, to let them out. Scream, throw things (but NOT your scrapbook supplies!!), and then move on and deal with the day to day.
Continue to be strong - and keep on recoginizing all the wonderful things that Simon does - you're so very good at that. Let Simon know that he is normal, that this label he's been assigned doesn't make the person. Continue being the great mom that you are and loving the great kid that you have.
Take care and hang in there!
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Simon is exactly who God created him to be.
And that is good :-)
I have to tell myself that a lot with my son. He is developmentally delayed, so we have similar, but definately not as life altering daily struggles. I did a LO about him that really touches on accepting him for who he is, I'm just a plain old scrapbooker- nothing too special, but maybe the journaling would encourage you.
http://www.thescrapbooksite.com/gallery/showphoto.php?photo=2185&sort=1&cat=500&page=1
that's the gallery it is in.
Hang in there. I have a good friend who's son is also on the autism spectrum. She has small cards made up to hand to people to help educate them about Autism and explain to the general public why her boy is the way he is. She has found success with that.
Hugs, and thank you for writing.
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ali, you're an amazing woman and mother. i'm so glad i met you in minneapolis. big hugs to you, lady.
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Simon chose his parents wisely. You are so right. He's still Simon. You're still an amazing mom. Nothing has changed, you just know now.
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Oh Ali...I've been down this road and know those emotions. My oldest daughter, Samantha, is also a special needs child. I remember the day we got the diagnosis - and it was part relief, part devastation. I had to find a way in my heart to get past the things that she might never do, and focus on the things that she could do...and the person that she is and will become. It's not an easy road - and you cry lots of tears, and you get angry, and you feel a whole host of emotions you didn't really expect to feel.
But then...you pick yourself up, and you marvel at the amazing person your child is. You marvel at the things they CAN do - the way they do what others said was "impossible". I can't tell you how much joy I get from watching my Sam do something that the experts said she'd never do. I can't express the happiness I get from seeing her becoming a wonderful young woman - vibrant and full of life. That's the part I try to focus on when the tears come...and even though we've known for many years, those tears still come sometimes. They probably always will.
Anyway, I just wanted you to know that you're not alone. Simon is VERY blessed to have you and Chris. He's got the most important thing he could ever have in his journey through this life - the love and support of his amazing parents.
Hang in there.
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Ali - your post this morning touched me. I will continue to pray for you and Chris to find the strength to guide Simon through this difficult time. One of my favorite sayings:
"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."
Hugs to you and your family.
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btw -- love your journaling here... full of what Simon IS.
sara
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My heart goes out to you and Chris as you begin this journey. What a treasure Simon is! You are not alone.
Laura
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Ali~ I am a longtime lurker of your blog. Your journey has been so touching and I enjoy coming here each day to read your thoughts. Take joy in knowing that God chose YOU to be Simon's mom. Nobody else would be able to provide for him the way you do. What a blessing you are to each other and to the world out there who has a little peek into your lives.
sending you good thoughts and prayers...
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Hugs to you and yours, Ali.
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Ali
you have been an inspiration to us all as an artist,writer,mother,wife and human-being.i always come away deeply touched by your words and experiences. thank you again for sharing so much of yourself. sending prayers and hugs your way....
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wow, there are alot of comments here but I just wanted to drop in and say that i just love you and Simon so much! Remember I told you from the beginning that since Simon was so close in age to Ashton I've watched him grow as well and just adore seeing that handsome little guy! You are right...he IS a cool dude..no matter what :)
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You are amazing. Simon is amazing & Chris is amazing! We ALL have special needs when you really think about it. Simon is a special boy...and very lucky to have you & Chris! God only gives you what He knows you can handle. Many blessings to you!
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I have been a huge fan of yours for a long time now. I've connected with your family through your pages, your beautiful journaling and gorgeous photos. Thank you for sharing your life with us. I've recently stumbled upon this site and have been following it for days. I just wanted you to know that your family is in my thoughts and prayers. Simon is an amazing little boy. I've loved watching him grow! You and Chris are amazing parents and my heart is with you. ~Lyndsay (aka hunnypot76) Singapore.
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I have been a huge fan of yours for a long time now. I've connected with your family through your pages, your beautiful journaling and gorgeous photos. Thank you for sharing your life with us. I've recently stumbled upon this site and have been following it for days. I just wanted you to know that your family is in my thoughts and prayers. Simon is an amazing little boy. I've loved watching him grow! You and Chris are amazing parents and my heart is with you. ~Lyndsay (aka hunnypot76) Singapore.
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Thanks for sharing this Ali. What a remarkable son you have - you should feel so blessed. You all will be in my prayers.
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big hugs ali. your love for simon completely shines. he is so blessed to have you and chris.
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I can't say that I've been in your shoes...but as a teacher of autistic children, I believe taht Simon is blessed to have you. I love reading about his progress and spontaneous things he has said....that rocks. Sounds to me like he's doing great. Stay strong. He's so lucky to have accepting parents who are his strongest supporters and advocates. Keep up the great work. You are doing an awesome job....he's one lucky little boy (and a very cute on at that).
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