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5 Things the Doctors Won't Tell You About Autism

Jenifer DeMattia

By Katie Staines

 

I can remember the day like it was yesterday. "Your child has Autism", the doctor said. It was an answer to my questions. Why is he not speaking or interacting? Why isn't he meeting his milestones? Why does he only like the spinning wheels on cars? Why is he having these melt downs if we travel a different route in the car? Why doesn't he look at us when we call his name or speak to him? - Why - why.... on and on ... I already knew the answer before the doctor said it but it was different now. It wasn't just me diagnosing, it was a professional in developmental pediatrics at Children's Hospital confirming - yes what you have been thinking all a long is correct despite the disbelief of those around me that may have thought this was a stage or phase. No it's real now - this is Autism exactly as you thought, you're not crazy, at least not yet... 

Now comes the frantic flurry of early interventions and so on to the doctors, therapist, ABA, OT, speech, infants and toddlers, pick one or any combination. Right away you start getting your armor on and getting ready to go into battle. Nothing can stop you! You are becoming a warrior Mom on a mission to do everything and anything to promote assistance to your precious child so innocent and unaware of the heavy load that has just been unloaded on you.

In the first year of an Autism diagnosis life becomes a whirlwind of getting together a game plan for your child's medical team and getting yourself educated on autism and treatments. As you are going through this you will get all the facts and opinions, sometimes more than you care, but here's a few things I have learned through this process that the doctors aren't going to tell you about having a child with Autism.

 

1. Your attitude will be your next biggest challenge. 

As Scott Hamilton said, “The Only disability in life is a bad attitude”. You must believe in yourself and know that you are doing everything you can to support and encourage your child the best way you know how. Even if it was a bad day - it's another day that you survived and sometimes that's all you can do. Your attitude will shape everyone's attitude around you. Yes - it's beyond challenging to keep up positive thoughts especially when you feel overwhelmed. You are going to have those self-doom days but just always keep in mind that in your child's eyes you possess super human abilities that will inspire them to grow not because of doctors or therapists but because of just being a constant presence in their life. I can't tell you enough that sometimes the best learning is done simply. By experiencing every day situations at the park, playing with toys at home, acting out a scene in their favorite movie, hiding under a sheet with a flashlight in the dark or just rolling around on the floor remembering what it was like to be a kid. Bring that magic into every day life and you'll see their souls light up. You are their first best friend! Be playful and have fun, even if it ends in a melt down, something great happened in those moments where a connection was being made. 

 

2. Be their advocate. Ask questions. 

Get the details and know what they are working on in therapy or at school. Don't depend on others to tell you how things went. Go and observe them in their classroom. Take the tools and knowledge they are working on in school or therapy and integrate it into your home. If you aren't getting the answers to your questions, keep asking until you do get your child's plan with doctors or the school to a place where you feel that they are getting ALL the services and amount of time that is needed. You know exactly what your child needs don't just sit back and let the "experts" decide your child's future. You are their voice! Don't ever be afraid to go against the advice they are giving or question their course of action. Your number one priority is your child and if it means you have got to be a bit of a momma bear with them, then by all means go for it. 

 

3. As you get your team of doctors and therapists together also get your personal support team together as well. 

Your support team should include trusted people that can help watch your child to give relief to either get things done around the house or allow for a temporary break to enjoy outside activities.  Balance is extremely difficult to achieve as well as the feelings of guilt that come from allowing others to step in and help but from my experiences it's essential for mental and emotional health. It's important in dealing with Autism and it's a life long challenge to do some things that make you feel more human again even if it's as simple as going for a run outside. It doesn't have to be a weekend in Vegas (but that would be awesome!) just give yourself moments that are just for you and continue to keep friends alive in your life. Taking care of an autistic child can be a very lonely, boring, and depressing life but you can change that by making the choice to get off Gilligan's Island and keep in touch with your needs and emotions. Also be sure that you go out with your autistic child. Be sure to plan out your trips and if needed take a helper or friend with you out in public to help with melt downs or wandering. Don't become glued inside your house out of fear. We all need to get out more and not feel like we need to fit into the mold of society. So what if you get stared at or judged by others while your child runs around a restaurant or starts reciting his favorite movie lines over and over very loudly. It's ok to be different. The more social situations you can put your child in, the more opportunities there are to change these awkward moments into a more comfortable routine for you both. 

 

4. Autism is a label/diagnosis for service, not a definition of your child. 

Autism is truly a spectrum disorder. Each child with Autism will have a variety of degrees and symptomatic issues from sleeping, feeding, sensory, emotional, social, and educational development that will differ greatly from person to person and from symptom to symptom. It's so true that if you know one child with Autism you can't compare them to another child with Autism. They are as unique as snowflakes both made from the same spectrum but showing their own set of abilities and challenges. Be sure to treat the symptoms not the diagnosis and don't be surprised how much these symptoms will change, go away or come back at any time.

 

5. Celebrate all victories no matter how small or big. 

In our house we get excited about using "I want" sentences to request needs or allowing a new food texture to be attempted or even bigger going out for one of those family outings and surviving with minimal melt downs. There's something that can be celebrated everyday. Take the time to verbally acknowledge victories in the moment. Allow your child and the family to be proud of making these accomplishments happen as a team and individually.  

There's so much to be said for families who are dealing with the gifts and challenges of Autism. Having this diagnosis can give you and your family new eyes to see the world. You'll never look at life the same. Sometimes you won't think that you can take another day of juggling the roles of working mom, teacher, cook, cleaner, protector, researcher, fighter, driver and not to mention keeping your other children happy and a marriage alive. But then you do it and you continue to keep moving forward making your own personal progress. There is a light at the end of this continuing tunnel, though which there is hardship, pain, anxiety and feelings of overwhelming confusion. There is also the truth that you have been blessed with the honor of being pushed way outside of your comfort zone, coming face-to-face with Autism without backing down despite every failure, every bad day, and every doubt that threatens to cloud the beauty that is your amazingly quirky, wildly wonderful child who just happens to have Autism.


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