I’m a ‘Mom’. I’m a ‘Mom of Multiples’ (girl/boy twins to be precise). I’m also a ‘Singleton Mom’ (although no one refers to themselves this way). I’m a ‘Soccer Mom’ and a ‘Baseball Mom’ and a ‘Swim Team Mom’. I’m even a ‘Scout Mom’. But, at the heart of it all, I’m ‘Mom’.
But, when people ask me what type of ‘Mom’ I am, my answer is always, “I am an ‘Autism Mom’”.
3 years ago, my world was turned upside down for the second time in living memory. That’s when a developmental pediatrician told us that Ballerina and Music Man were both “clearly on the spectrum” based on both her observations of them in her office and on the reports I completed at her request. She wasn’t able to provide me with an “official diagnosis” at the time (tell me where on the spectrum each of them fell) based on the limited information she had, but that really didn’t matter. I was too shocked just hearing that phrase. I never thought I would ever enter “The Autism World”….even though I knew the incidence of autism was rising rapidly (currently 1 in 91 children are diagnosed somewhere on the autism spectrum and 4 of 5 cases of autism affect boys), it wouldn’t touch my home. I was wrong. I was DOUBLY wrong.
I was lost and in denial. I was trying to figure out what I did to cause this to happen. Was there something during the pregnancy? What did I do differently with my twins in comparison to Big Brother (who we refer to as our “Anti-Autism Child” as, for every autism criteria, he is the polar opposite)? Why are they both affected? And are they sure that they are autistic? Both of them? What could I have done to prevent this outcome?
Then I got smart. What caused their autism didn’t matter. What did matter was how I was going to help them now that I knew they were both autistic. And we’ve been lucky. Ballerina is an ABA success story (Applied Behavior Analysis – a technique used to teach autistic individuals by breaking everything down into its smallest parts and rewarding success). Music Man doesn’t learn using this technique, but we kept plugging away and found ways to reach him as well. They are now both extremely verbal, learning to handle situations and are developing ways to cope with being overwhelmed by external stimuli. They are both entering kindergarten in September and will have the opportunity to spend at least part of the day with their typical peers to learn how to interact with other children.
For the truth is that I truly believe there is NOTHING I could have done to prevent this. This is something that simply IS. I didn’t cause it. Their father didn’t cause this. And searching for someone to blame doesn’t help anyone. It won’t fix the outcome. I’m not saying we don’t need to look for risk factors so we can determine satisfactory ways to halt the rising autism rates. But what matters most is helping those who do find themselves with an autism spectrum diagnosis. What can we do to help teach them language and control? What can we do to help them overcome their sensory sensitivities? What can we do to help them in a classroom or in any learning environment? What can we do to help them develop independence so they can live happy and productive lives? And that is what I work on every day.
I have become an advocate. I give advice based on personal experience and based on what my research has taught me. And every time I sit in an IEP (Individualized Education Plan) Meeting, I do my best to represent my children to help them succeed in their respective schools.
Mostly, I have learned the best thing any parent can do is to be aware and to recognize the warning signs of autism as early as possible. Some of these include:
(1) Refusal to make or maintain eye contact.
(2) Will not return a smile.
(3) Does not respond to their own name.
(4) Cannot track items.
(5) Cannot follow a point.
(6) Will not try to catch your attention when they need help.
(7) Refusal to initiate contact or cuddling.
(8) Has no interest in playing with others (peers, parents, anyone)
(9) Atypical play (would rather just press buttons or line up cars rather than play with toys the way they are designed).
(10) Lack of language development.
I urge any parent who sees these behaviors in their child(ren), PLEASE contact your pediatrician and/or early intervention teams and ask for help. Autism is a scary thing – I know that better than most. But refusing to recognize the signs will only cause more problems as your child(ren) grows. Early Intervention (before age 5) really is a key means of helping these kids for the long haul. My family is living proof. And, if you do learn your child(ren) is autistic, remember a very important point……your child(ren) is the same as they were before someone told you news that you would rather not hear. Your child(ren) is loved and that will never change. But by learning such a crucial piece of information, you can become a more effective parent because you now know of issues that he/she/they faces. And you can learn to reach them in a way they can understand. It may take time, but as parents, we know that we NEVER GIVE UP!
Information pulled from: http://www.helpguide.org/mental/autism_signs_symptoms.htm
My name is Ilene and I’m a happily married stay-at-home-mom to 3 wonderful children. My eldest is a typically developing nearly 7 year old first grader. I also have a set of 5 year old girl/boy twins. We learned they were both “on the spectrum” (autism) when they were 26 months old. My daughter has also been diagnosed with ADHD and POTS.
My life changed forever on March 12, 2009 when we first learned this. But since then, I’ve gone from a mother in mourning for her children’s future to an advocate. I’ve learned that “Autism” doesn’t signify the end, but it gives me the tools to be a better parent. Since then, we have seen so much progress in both of them. They have both developed language and are nearly ready to enter kindergarten in the fall.
We have good days and we have bad days, just like everyone else. I started blogging (My Family’s Experience With Autism) 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.
I need to make one correction…….since I wrote this post, the CDC has released their new numbers. The current incidence rate is not 1 in 91 children as I stated in this post, but 1 in 88. This is up from 1 in 2000 in 1985. The rates are going up every time they are measured. We are truly in the middle of an epidemic, no matter whose criteria you use.
Thanks for sharing your story Ilene! I’m a teacher for kids with Autism and I appreciate your honesty in your writing!
Barbara, THANK YOU!!!!!