Today I'm reposting a post from my personal blog (My Family's Experience With Autism). I'm posting this mainly for anyone reading this post who recently learned that their children are on "the spectrum". Nothing is "over". Their future isn't "lost". Tomorrow still holds the wonder and mysteries that it did before you learned your child was "autistic". And THAT will never change!!!!!
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This week was our anniversary. Anniversary of learning that we were a living in "The Autism World". We had been living there for a while at that point....we just didn't know it.
Yup.....March 12, 2009 is when a developmental pediatrician told me that both Ballerina and Music Man were "clearly on the spectrum". All those questions went through my head.....the "hows" and "whys".....the "what are you talking about"s....the total disbelief and feeling my entire world crashing all around me.
3 years ago, neither of them were showing any interest in language and communication. Neither of them were making eye contact. Neither one showed any interest in playing with toys (appropriately). Music Man loved to flap and spin. Ballerina NEVER smiled. Music Man was a TERRIBLE sleeper. All of these should have clued us in that something was wrong, but we missed it all. We just thought they had a language delay and we kept falling back to the excuse that "twins develop language later". The rest.....we just didn't see it. We never thought about how I always had to keep them in the stroller when we went out -- we just had never done anything different. Rigidity in routines? All kids thrive on routine. Tantrums.....well, they're 2.....2 year olds tantrum all the time. That's why they call it "Terrible Twos". Did you find yourself using any of these excuses before a diagnosis was staring you in the nose?
But now, they are totally different children. Ballerina talks up a storm and love to play. She practically potty trained herself when she was 3 years 4 months. She's often smiling and we've been told for almost 2 years how much her teachers LOVE to work with her. We go to the playground and she climbs up every climbing structure she finds, seeks out slides and goes down them forwards and backwards, loves to play on the computer, on her iPhone/iPod, knows her letters (upper and lowercase) for reading and writing, knows her numbers and can manipulate her numbers.....we are even considering the possibility of her entering a typical kindergarten classroom next year. Music Man also talks all the time, loves to play at the playground (although he will still sit under the structures to play with the mulch), can handle social situations, enjoys playing on the computer and on his iPhone/iPod, knows all of his letters (upper and lower case), can clearly read even unfamiliar words, knows his numbers and can do simple manipulations, and (we can finally say) is potty trained. He will be entering an academic-based special education kindergarten classroom next year and will work on mainstreaming through his elementary school years.
Who would have believed that we'd be sitting here when they realize where we were just 3 years ago? Another example of the living proof that you never know what the future will hold. You just have to take it one day at a time and keep trying your best. Remember that the future isn't pre-determined......it's malleable and just waiting for you to shape it.
It's been an amazing and CRAZY 3 years!!!!!!
Robin Ferrier
8:33 am on Thursday, March 15, 2012
Ilene: Thank you for sharing your story. I wanted to let you know about an upcoming art exhibit in Montgomery County titled "Autistic. Artistic. A Life Ahead." It's a joint show between the Madison House Autism Foundation and Johns Hopkins Montgomery County. The exhibit will be at JHU's campus in Rockville and all of the artists are adults / young adults with autism. It may be uplifting for you -- and other parents of children with autism -- to come to the opening on March 29 @ 7 p.m. and see how well so many of these adults with autism are doing. Details: http://www.madisonhouseautism.org/artistic-autistic-a-life-ahead/. Please feel free to share information about this show and the opening with your friends, blog community, etc.
Ilene Krom
6:38 pm on Thursday, March 15, 2012
Thanks so much Robin!!! I didn't know about this program, but I will be sure to share with others!!!!!!
Tom Rowse
2:05 pm on Friday, March 16, 2012
Hi Ilene, thank you for sharing your story. I have a 10 year son with Autism and can identify with the initial denial that you so eloquently expressed. I know now looking back that I was clearly in denial and I was wrong. It is of the greatest importance that you get the necessary intervention at the earliest stage possible in their young lives. As my wife and I look back on it now, we saw traits and behaviors that clearly show that our son was on the Autism spectrum as early as 18 months old and while there is no way to go back and change what has already happened, I can make sure to be a voice that helps parents to understand that early diagnosis of the disorder is essential to your child’s future. Parents must step forward and get the services their child so desperately needs and the only way to make this possible is through expanding Autism awareness throughout the world. You may have noticed that I have capitalized the word Autism throughout this comment and I do that because of the impact is has on my life. Thanks again for sharing and raising awareness.
Ilene Krom
4:04 pm on Friday, March 16, 2012
Tom, thank you so much for commenting here!!!! My mother-in-law first suggested that Music Man was not developing as he should when he was 19 months old and what she was pointing out were things that we had been seeing for a long time before that. Ballerina presented less typically, but the things that they pointed out were also there for a long time before we were given the news. Early Intervention and Preschool services are invaluable when it comes to conditions like autism or any disability that affects development and learning. The brain is so malleable as it continues to expand and develop. That's why they call birth to Age 5 the "early learning window" -- it's not just hype. A typically developing child learns MUCH during this time, but this window is much more crucial in a special needs child.
Please continue to spread the word about Autism. Next month (April) there will be an international effort to promote Autism Awareness, but people like us who live it all year round, needs to keep that awareness effort going.
Thanks again for your comment!