Wednesday, April 29, 2015

On chain link fences...

When he was almost two, we brought him home a baby brother. One beautiful day during that spring, my husband decided to take his almost two year old son outside while he was doing a little yard work. It was sunny and bright. It was the way a spring day should be. I was inside the house with the brand new boy.
A little while later, my husband came running into the house with a sound of terror in his voice and a panicked fear that I never heard. He kept asking me if Griffin had come back into the house. I kept saying "what do you mean? He was outside with you? What do you mean? Where did he go?"

And we searched the house high and low. And we searched the yard high and low and there was no boy. My husband ran through the woods, neighbors we had never even met ran through the woods, the police ran through the house and the woods-everyone looking for him. No one knew which direction to turn to run in. Everyone's houses are spread apart. Everyone has thick trees and woods behind their homes. There are trees and creeks and animals and houses in every direction and no one knew which way to go.
And they were all moving and searching and looking. I stood in the backyard and watched everyone moving around me as if in a movie and I could not move my legs. I was actually paralyzed with terror. I was paralyzed with fear for my little boy. I literally could not move. I have never had that feeling in my life and I will never forget it. I could not breathe. I heard everyone screaming his name in every direction, echoing throughout the neighborhood-"Griffin. Griffin. Griffin. Griffin. Griffin."

And I finally screeched to the police- "He does not know his name. He does not respond to his name. He does not understand what his name means. He does not know he is in danger. He does not know he left our  property. He has developmental delays." The police kept saying that maybe he was hiding in a closet playing peek-a-boo or hide and seek. I said that was not possible. He did not think like that. And my heart-wrenching terror was not that just my child was gone, but also that I knew he would not respond to anyone searching for him. He would not know he was in trouble. He would not know he had wandered away from his home and he would keep wandering away. He could not communicate. He could not swim. He could not fend off an animal.

And about twenty minutes later, the longest stretch of my life, a neighbor whom we had never laid eyes on, came across the road with our son walking beside him. He was a shepherd trying to wrangle this little curly haired sheep back to where he belonged. Our son had crossed over two roads and wound up in the back woods of someone's home. And by the Grace of God, that man saw him back there, just walking around.
Our sweet boy looked like he always did- beautiful. A few scratches, but he was okay. He was my boy, my sweet GEM, back in my arms. He did not understand. I understood everything.

And, yes, I wanted to kill my husband. I could not even look at him for weeks. How he could let our son wander off was unimaginable to me. He said he just jumped in the shed to get a tool and then he was gone. He did not know which way to look or run. Griffin was not even two yet and a tiny little thing-he slipped away in an instant.

And after that day, it was apparent that we needed to set a boundary, a giant playpen to keep our boy safe. We knew that his wandering and communication delays were pieces of a bigger puzzle. We knew that this was beauty and truth. We knew we needed to fence in our property. Our backyard is on the larger side-we got a quote or two, and realized quickly that we could not afford to fence it in with anything fancy. We settled on the fence guy that could start the soonest. The cost was around 6 or 7 thousand dollars, that we did not have, so I think we just put it on a credit card. It did not matter.

I am sharing this story to let you know that you are not alone. To let you know that the beginning of the journey is often times terrifying. People dream about what their baby will look like and what they will name him-no one is ever fully prepared for a child with different needs and abilities. No one wants to talk about that at baby showers. No one wants to convo about it at Lamaze class, but it is reality. And, when you are given the gift of a child that you sense is different, you have to seek out what every answers you can get-from wherever you can get them.  You have to adjust your sails. It takes the wind out of you, but it also touches your soul in a way that you never knew was even possible.

My son wandered. He did not respond to voices-we thought he might be deaf and had him tested. He did not look at anyone in the eyes or face-we took him to many eye specialists. He could not eat solid food-we took him to pediatric GIs. We had a swallow studies done. He would cry if there was too much noise. If there were too many people. He had MRIs. Endoscopies. Developmental Pediatricians. Neurologists. Therapists. Tests after tests, appointments after appointments. We did not know what was happening, we did not know what was wrong, but we knew there was something different about our boy and we just kept getting him help any way we could.

My hope for this post is that I convey to you-early intervention is crucial for all kids on the spectrum. The earlier these children get help and therapy, the fuller their lives will be. Early intervention is your friend. It does not matter what the diagnosis-just get help as soon as possible.

I am never sad to see a kid with different needs. I love all their different personalities, abilities and quirks. It is what makes my heart happy. What devastates me in to see parents in denial. Or parents that do not seek help for their kids.
If you sense there is something wrong, there probably is. Trust your instincts. Ask your doctor. Go to a developmental pediatrician, neurologist-anyone that will listen and be willing to help. If you have a friend that is in denial or not seeing the signs, gently and lovingly let her know that maybe she should have her child checked out. Know the signs of Autism. Trust your instincts. Treatment started early is always best. Really. You are your child's best advocate and you are their best hope for a successful future.

April is Autism Awareness Month.

Awareness about the signs of Autism in your own child and awareness of the signs and acceptance of those special people you may meet along the journey of life. Don't judge.

If I can help motivate one person that reads this to take their child for an evaluation or screening, my soul is happy. 

Please share. 
Shine on.