World Autism Day

April 2nd is World Autism Day.

I am mom to two children who light up my life, make me laugh, try my patience and make me feel like the luckiest person in the world.  Oh, and they both are autistic.

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We had two very different experiences.

I started to question if my son was autistic when he was between 6 and 9 months old.  I could only give vague examples of what was concerning me and my concerns were brushed aside by many.  I heard: “boys develop slower”, “sounds normal to me”, etc.  Our pediatrician took me seriously, but things were so vague.  Finally, I said: “not only as a mom with a gut feeling, but as a nurse with a gut feeling, something is not right”.  The process began.  We had to wait many, many months for an appointment at MGH Laurie Center for Autism.  When the date finally arrived, to say we were disappointed in the process is an understatement.   A questionnaire and a doctor playing with our son for 15 minutes…that was it.  Three weeks later, we were in the office receiving the official diagnosis.  I asked what our next steps were (besides ABA therapy) and was told: “Nothing. We’ll see you in a year for a follow-up”.  We were pushed into this world blind, flying by the seat of our pants.

Our second diagnosis blindsided us.  We did not see it coming.  The early intervention team suggested the possibility that our daughter was autistic (she was being evaluated for speech delay/therapy).  I called our pediatrician and explained that we were not going back to MGH as we were very dissappointed (trust your instinct moms out there and stand firm in your decision).  Awesome decision on our part!  We were lucky enough to be sent to Integrated Center for Child Development and placed with Dr. Castro.  Our first appointment was hours long with Dr. Castro and a neurologist.  We left that appointment with not only a diagnosis, but appointments already made by the doctor for a neurological work up, a full medical work up, genetic testing appointments, a list of recommended ABA companies, and a list of additional services in order of importance.  He reassured us that he would be with us for this long journey (“well into adulthood guys”).

My favorite part was watching him hold Miss ME, making her laugh and then turning to us and saying:”she is still the same adorable, sweet girl you walked in with…she’s just going to get some extra help”.

Needless to say, E’s care is being transferred to Dr. Castro as soon as we are over the initial business of Miss ME’s appointments.  Then we will do all the things that should have been done at MGH-full workups in many areas.

Because the spectrum is so wide, it can be a very scary diagnosis.  You need all the help you can get.

We are thankful for all the therapists (OT, PT, Speech, Developmental, ABA), E’s wonderful Pre-school teacher and aids, our family members (who understand and have patience with both the kids and us!), and our friends who support us in any ways big and small.  A random hug, the offers to watch the kids for a few hours, a friend gave us a no longer used iPad and another friend was generous and gave us a TouchTalk that was no longer being used in her family.  Suddenly E had another avenue to communicate.

A few things:

  • Trust your instincts.  You know your child best and if you are concerned or questioning if something is going on with your child-push, push, push. 
  • Know that you don’t need to go to the “big name hospital” there are other options.
  • Know that the spectrum is vast.  In my own household you will see two ends of the spectrum (non verbal/verbal, stimming/non stimming, eye contact we had to work hard to make happen/no issues with eye contact, etc.).
  • Know that professionals aren’t trying to hurt you or judge your child if they bring up the possibility of autism.  After the EI team left Miss ME’s speech evaluation and had brought up the possibility, I cried for three days and said some pretty mean things in my head about “those people”…I had already been though this process, yet I was angry that they had said it.  No matter what your situation, it still hurts your heart to hear anything might be amiss with your child.
  • Take time to take care of you.  I am still working on this.  An autism diagnosis means your life is going to become very hectic and your house filled daily with therapists (which is wonderful, but you can really feel a loss of privacy).  Taking time to go to a gym class or go to a coffee shop and read for an hour can help.  Heck, I once sat in a parking lot at the beach for an hour and had a really good, cathartic cry.  I felt a lot better after.
  • Take time to spend one on one time with your spouse/partner.  Your relationship can quickly become talking only about the kids and therapy and ABA reports.  Try to take at least once a month to go out just the two of you…we are still working on this.
  • Don’t hesitate to tell someone your child is autistic.  I was once in charge in the recovery room and helped a father keep his 21 year old autistic son safe after surgery and we started talking.  He said:”you were very good with him, thank you” and I told him my son is autistic.  He gave me some wonderful advice. Advice regarding availability of respite care, therapy agencies and something as simple as we can apply for a handicap parking placard.  Sounds simple, and I probably wouldn’t use it that often.  However, if I do have to take both kids out alone, parking lots can be dangerous.  My son doesn’t seem to have a sense of danger and he is a wanderer.  Getting from the car to the store door can be challenging.  Being able to park close to the door could be very helpful.

Know that the road will be long and hard, but filled with joyous moments! Your beautiful baby will continue to light up your life in ways you can’t even begin to imagine.  The day I hear my non verbal son say Mama will be super sweet. (I know it will happen someday!)

 

 

 

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