Here we go again

It's that dreaded time of the month again when Gavin needs a haircut. Sigh.

The last time, I took him to Supercuts just before Christmas so he would look adorable for pictures. Before we could even get inside Gavin started screaming. He remembered this place immediately and the rest of the trip became my strength over Gavin's. I sat with him in the chair and held him down the entire time. I swore to myself I would not go back to this location so that he would not get worked up a head of time and that I would not go by myself again.

Fast forward to today. I found a new place for us to try called Snip-its and they specialize in children's haircuts. I actually did a search on them and they are highly recommend for kids with Autism. The woman cutting his hair insisted on using the trimmer on him because it would be faster and more accurate. I panicked because we have only ever done a scissor cut before, but Doug had a good idea to hold them up to him to see how he did with the sound. When she turned them on he definitely squirmed, but it wasn't anymore than he had in the past. She made a comment, "Oh he's a sensitive one isn't he?", to which I quickly jumped in with, "Yes, he has Autism". I have to give her credit though, her demeanor immediately changed. She became very understanding and very patient with Gavin. She threw out multiple suggestions on things we could do to distract him, but unfortunately none of them worked. By the end of the haircut, Doug was sitting in the chair with him holding him down, and I was standing behind the chair holding both of his hands....no wonder this is a traumatic experience for him! After 45 mins. we were finally done....that's right 45 minutes!!!

I felt awful for Gavin for so many reasons and I wanted to cry myself because I hate restraining him. The worst part of the experience should have been what we put him through, but unfortunately it wasn't his crying, or us fighting with him to calm down, it was the horrible stares that we were receiving from the other parents. We specifically chose this place to try because we figured we were amongst other parents. Maybe not special need parents, but there is an expectation between parents that you get it and shouldn't be judging others.

I felt like we were on display and it really sucked, to put it bluntly.  I initially noticed a 7 or 8 year old girl looking at us and I thought, "sure she doesn't understand". However, I then saw her father two chairs over staring at us. I wanted to go up to him and say at least I'm trying to help my child you are just reenforcing bad manners with yours. Doug knows me and my worries so well and tried to make me smile at the end and said "Don't worry, I don't think anyone noticed." I laughed, but was still to angry to let it go. I responded to him with a very passively aggressive comment "Oh no, everyone was staring!". Our hairstylist commented to me "oh sweetie they were just reminiscing about when it was their child". Ok, lady whatever you need to tell yourself.

The least amount of judging we can do the better off we are. - Michael J. Fox

I want to talk to my son

Growing up one of my favorite movies was Mr. Holland's Opus. The main story centers around Richard Dreyfuss' character, Glenn Holland, who takes a job as a music teacher just to make ends meet.

One of the sub-stories in the movie focuses on Dreyfuss' character's son, Cole. Cole is diagnosed with a hearing impairment as an infant. Dreyfuss' character becomes saddened and disengaged about Cole because he thinks that his son will never be able to enjoy and experience music the way he has his entire life.

So why on Earth am I mentioning this movie in my blog?! No I haven't suddenly taken a new job as a movie critic, I actually do have a point. There is a scene early on in the movie between Richard Dreyfuss and his wife played by, Glenne Headly, that I think about often after we received Gavin's diagnosis. Dreyfuss and Headly are arguing about enrolling Cole in sign language classes. Dreyfuss is against it because he thinks Cole will never speak, but Headly's character is arguing that she wants to do it because she thinks it will help them communicate with him. At the end of the scene she breaks down and starts hugging Cole who has been having a tantrum the entire time and screams "I want to talk to my son". 

This scene broke my heart as a teenager...without a thought in the world of being a parent. Now that I am a parent, in particular to a son I can't communicate with, this scene just hits the nail on the head.  I included the segment below, but the actual argument I'm referring to doesn't start until 45 secs into the clip.

In case you are wondering, yes, I know that Gavin isn't deaf. However, he is non-verbal. It breaks my heart when I can't figure out what he needs or wants. This scene is very real and happens daily in our house; just ask the students in the building because I'm sure they hear him! Gavin pulls us into the kitchen, his bedroom, our living room, the room doesn't really matter, and he tries to tell us what he wants. He will point at different spots around the room and will shriek loudly until we figure out what he is really asking for from us. Through his early intervention program and Building Blocks program they have taught him a few signs, but they aren't trained in ASL so it only gets him so far. Right now Gavin knows the sign for help, more, all done, up,  and me. Pretty limited when trying to tell someone what he wants. 

I keep thinking about signing up for an ASL class for me and him. His receptive language has improved so much that I think he could catch on rather quickly to the signing. I honestly think it would be great for him if he had some way to utilize his own version of expressive language. I remain hopeful every day that Gavin will speak, but the reality is right now at 27 months old he is still non-verbal. And at the end of the day...I want to talk to my son...and I will do whatever I have to do to make that possible!

You have met ONE child with Autism

For the past six weeks we have been watching Gavin's eating continue on a downward spiral. I used to brag that he was the absolute best child eater. He would seriously consume anything you would put in front of him and repeatedly ask for more. Slowly though he stopped eating his favorites, he experimented with a few new things, but now has stopped eating altogether. A typical day for him now consists of 1 cereal bar, 2.5 chicken nuggets,  and two glasses of juice.

We took him to his pediatrician yesterday and learned if this continues we should be concerned about dehydration because his diapers are barely wet. In addition over the last two weeks he has lost four pounds, which is obviously not good for a small child. When asked what's causing it no one knows. The answer we get is pretty generic that it is normal toddler tendencies, layered with Autism, layered with his sensory issues....but there are no real suggestions of where we go next.

Kendall has always been commended by her teachers for her amazing empathy skills. This week she has shown me on several different occasions her amazing compassion for others, most importantly her brother. The other day she came up to me and said "Mommy, next year I'm going to ask Santa to help Gavin like food again so he can eat.".  Then yesterday she pulled me aside and said "Mommy I really wish Gavin could talk because then he could tell us why he gets upset and that would make him happy." Talk about melting your heart. I am so blessed to have both of them as my children, but I feel like Gavin doesn't even know what an incredible big sister he has in her.

I continue to have faith that he will start eating again soon, but it's a struggle to remain hopeful most days. Each meal I sit him down and try to get him to eat. He then either screams at me to remove the food or just throws it at me or on the floor to avoid eating it. His lack of eating has also turned into a lack of sleep because he is waking up hungry. On evenings when we can get him to successfully eat he sleeps through the night, but if he doesn't touch his dinner it is hours of restless sleep for all of us.

I often tell myself not to get upset because there are so many things that could be worse for him. This is not a terminal illness, but instead a disorder that causes him to live life differently. But the trouble with fully believing that and being ok with everything is that there are so many unknown answers with Autism.  I have been told by several people if you have met one child with Autism you have met ONE child with Autism....no two are alike and that is the struggle in trying to figure out answers when things aren't "normal" with your child. The doctors know that it is probably related to ASD, but why it's happening, if they have not seen it before, is a new mystery for all of us.

“With faith, there are no questions; without faith, there are no answers.”
― Yisroel Meir Ha-Cohen