Sunday, November 23, 2014

It's all relative... Autism in families

Increasingly each day parent's of autistic children are finding out they're also Aunts and Uncles to autistic nieces and nephews; or that their friend's now have a child diagnosed. The numbers are staggering. It has happened in my family multiple times. Each diagnosis I am told about is received with the same shock as I felt when I found out my son had been diagnosed. It never gets easier to accept however the diagnosis does get easier to explain. It suddenly becomes easier to relate to your relatives.

Autism in my Family

  • My son has Moderate-Severe Autism (Autism level 2-3)
  • One cousin with Asperger's Syndrome (Autism level 1)
  • One niece with High Functioning Autism (Autism level 1)
  • One nephew we believe to be on the spectrum
  • One niece diagnosed but not placed in a severity yet
  • One nephew diagnosed with High Functioning Autism (Autism level 1)
One of my nieces and two of my nephews are my sisters' children; my brother has a little girl with autism. To add to the amazement, my siblings who have children diagnosed happen to be on separate sides of my family. It is quite amazing the extent of this disorder in my relatives. It almost seems you have a better shot of having an autistic child in my family than you do having a "typical" child. This disorder didn't steal our children though, it gave them a different path to walk is all. It also created one of my best friends out of my little sister, without her I know I couldn't do this.

The "Club"

Each new diagnosis initiates a new member into our exclusive and diverse "club." Except our "club" isn't one full of massages and mud baths, our "club" in one of bags under our eye's and the amazing ability to operate on 2 hours of sleep. Our club consists of the toughest of the tough; the elite 1 in 68. Each new diagnosis sends a new family into overdrive and overcomes said family with questions and worry. The diagnosis tends to leave more questions than it gives answers.

When family members have children diagnosed [after our children] it's hard to remember that we were once at the beginning stage too; whenever they have children diagnosed before our children it's next to impossible to empathize with that parent, that family member. I still have a hard time with this part of the diagnostic process. I never say the right thing in the moment. It's hard to remember that there is a state of shock that overcomes one after the initial diagnosis, it's easy to hurt the feelings of others.

After all, there's a bit of forgetfulness in choosing ones words wisely-- this comes with fear. Sometimes there's also a bit of forgetfulness when considering the feelings of the warriors whom started their journey years ago.


Pity Me; My Poor Baby

When it comes to hurt feelings you have to remember these "newly diagnosed" parents earned the right to be less than careful with their words. If they want to ask a million times how their baby will ever live a normal life, let them; make sure you remind them there is no such thing as a normal life, each life is unique. When the parent is compelled to place pity on their child for autism having suddenly "taken their life from them" it's OK, let them; meanwhile making sure to tell them you used to think the same thing and they'll find their answer in their own time. When they need a shoulder to cry on, be that shoulder... when they need 2am advice on how to ease their child back to sleep, be that voice that laughs on the other end of the line and tells them to turn the coffee pot on....

When they need courage and strength, lend them yours...

They're allowed to break; they're allowed to wonder; they're allowed to tick you off... They just survived that diagnostic appointment that we all sat through. Their life was just turned upside down, they deserve the time they need to search their souls--just like we had [and in some cases continue to have].

Whether these mothers and fathers were afforded the opportunity to be in the room while their babies were diagnosed or if they heard it from family members, 2nd hand, because of personal circumstances--they still earned it.  Much like we seasoned parents experienced 10-15 years ago: your family member just became lost in a new world. Be the person they can turn to when they have questions or just need an adult conversation; not another person they have to endure.

Your family member/friend just developed a new relationship with you whether you realize it or not. You are now "autism family" and there is nothing stronger than those ties. 

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