My Victory Twins and Autism

When I was 6 weeks pregnant, I learned that I was pregnant with twins. This was, to put it mildly, a real shock, as this was a spontaneous pregnancy and there are NO (known) twins in my family. But, my husband and I were more excited than words can express and after a while, Big Brother too was excited about having a baby brother AND sister to play with.

They were born just over 6 months later. Two perfect little cherubs who practically fit in the palms of our hands. And, like all new parents, we saw their future…..TOGETHER.

Things don’t always turn out the way you dream about when you see your children for the first time. Their personalities assert themselves and their individual and unique interests emerge. But I had this image of sending them to kindergarten at age 5.5 to sit in the same classroom and learning from the same teacher. I imagined them sitting around the kitchen table with their older brother (who would be in 2nd grade), doing homework together as a team.

But when they were 26 months old, my world turned upside down. They were both diagnosed with Autism. Our lives became about the alphabet soup that all Special Needs families know all too well and others often have no idea. We became an IFSP / IEP family. We were faced with an ASD, PDD-NOS, ADHD, POTS diagnosis. We were receiving regular reports from ABA Therapists, SLPs, OT and PT Therapists and regular reports about SIBs. And, despite hoping that they would be able to enter a kindergarten program together, when they were placed in separate preschools when they turned 3 to address their individualized needs, I felt like that dream was over.

They are now 5.5. On August 27, they began Kindergarten, and Big Brother began second grade. But something happened. In our placement meetings towards the end of the 2011-12 school year, we discovered that they had been placed in the SAME SCHOOL. Music Man is in a special education classroom, following a general education curriculum with exposure to his general education peers. Ballerina has been placed in a general education classroom. They are in adjoining classrooms. Both of them continue to be supported by an IEP.

To say this is HUGE is an understatement. These are two children who, just 3 years ago, were barely verbal, 95% non-compliant (for any and all things) and a serious danger to themselves (they were “wanderers”, they both engaged in SIBs, etc) and really showed no interest in the world around them. They were both diagnosed with “Severe Autism” which is as far to the severe end to the spectrum as it goes.

So, I dropped them off at school on Monday, dressed the way you would imagine kindergarteners to be dressed on their first day of school. I dropped my Ballerina off with her class outside and then brought Music Man inside to his classroom. And I said my good-byes and left them to enjoy the day while I went home and cried that my babies are growing up and reveled in all of the success that this means.

Nearly 42 months ago, my world crashed down upon me as I was forced to consider the struggle my children will face as they grow. I had to consider that they would never be able to live independently and what that would mean, not only to Dad and myself, but to their brother as well. Now, I am watching my children do what everyone else’s children does every day…..go to school to learn “reading, writing and ‘rithmatic”. They will learn all of the crucial life skills that their peers will learn. They will have the opportunity to go to college and study those subjects that awaken their soul. They will be just like you and me…..only different.

 

 

Abbreviations
IFSP = Individual Family Service Plan
IEP = Individualized Education Program
ASD = Autism Spectrum Disorder
PDD-NOS = Pervasive Developmental Disorder, Not Otherwise Specified
ADHD = Attention Deficit Hyperactivity Disorder
POTS = Postural Orthostatic Tachycardia Syndrome
ABA = Applied Behavior Analysis
SLP = Speech and Language Pathologist
OT = Occupational Therapy
PT = Physical Therapy
SIB = Self Injurious Behavior

About the author:

My name is Ilene and I’m a happily married stay-at-home-mom to 3 wonderful children. My eldest is a typically developing 7 year old. I also have a set of 5 year old girl/boy twins, both diagnosed with Classic Autism. My daughter has also been diagnosed with ADHD and POTS. Life is not what I imagined it would be at this stage, but it’s still my life, and it’s good. We have good days and we have bad days, just like everyone else. I started blogging (http://www.myfamilysexperiencewithautism.blogspot.com) to cope with things not progressing the ways that I wanted them to go. Sometimes I vent about problems. Sometimes I share in a glorious moment. Sometimes I try to educate others. It really depends on what I feel like saying when I sit down at the computer to “blog”. But I do promise that everything I write is honest and heartfelt, even though I may contradict myself from time to time as I learn new things. I hope to share with others what we go through. And I hope you enjoy reading our stories.

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12 comments

  1. Amazing! I think this will help people on so many levels. I am in awe of how far they’ve come and am so glad they’re in the same school!
    Rebecca @ Unexplained x2 recently posted…Preschool Orientation and SeparationMy Profile

  2. Beautiful story. It’s so wonderful how much progress they have made, and it’s really a testimony to how dilligent you have been and how hard you have worked to get them where they are. They could never have done it without you, you are an amazing mom. They are as lucky to have you as you are to have them. Your family is beautiful.

    • Thank you Dollimama! As parents we never stop working for our kids. The hard part is letting go when the time comes. It’s so nice to see so much progress when it comes…..it’s always a give and take thing with Autism and it’s these successes that gets us through those less than stellar days! 😉
      Ilene recently posted…First Day Of SchoolMy Profile

  3. Thanks for sharing you story, Ilene! Your kiddos are amazing and growing fast. Your story will benefit others facing challenges for sure. Best wishes to you.

  4. Congratulations! It is amazing what early intervention can do.
    Christina Baglivi Tinglof recently posted…Tips For Taming Toddler TwinsMy Profile

    • MOST DEFINITELY CHRISTINA!!!!!! We would NEVER be where we are today without the patience and the support of Early Intervention — either from our local Infants and Toddlers Program or the public preschools offered by our school system.

      I can’t thank them ENOUGH!!!!!!
      Ilene recently posted…School is "Normal"My Profile

  5. I have a 7 year old and triplets who will be 3 on Sunday. I too visualized simultaneous milestones and while the girls were rocking along our only son was not. Friends said ” just the boy in him” but I work in Special Education and knew the signs pointed to ASD. I was right- didn’t want to be- and he was diagnosed with severe Autism at 20 months. He is now on developmental targets with the exception of social and adaptive. They will start kindergarten in 2015 and while they are in separate pre-k classes I have faith they will be in Kindergarten together! Thank you for your story!

    • THANK YOU! And you are an AMAZING Momma by recognizing the signs and getting him the help he needed so quickly. I only wish I would have been quicker to pick up on it all — I was in denial for more than 6 months from the time my mother-in-law first mentioned Autism to me, before having them evaluated and then just going through the motions for Ballerina because I couldn’t believe she was also Autistic, even AFTER the diagnosis.

      Without Early Intervention, I really wonder where some of these kids would be. The older they are, the harder it is for them to learn some of these things in the different way that is necessary for their brains to understand. By starting so young, we are really giving them the best chance at success that we as parents can possibly provide!

      Good luck to you, your older child and your triplets!!!!!!!
      Ilene recently posted…School is "Normal"My Profile

  6. Way to go mom! Early intervention is key. So glad that you found good help and it made such a difference. .

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