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Guests and Ghosts

Today was hard. There is no other way to put it into words. I can't tell you the frustration and disappointment that I felt when we were told Gavin would not be able to get his haircut today. The stylist did try and sugarcoat his refusal with an attempt to convince us that it was for Gavin's own good; his behavior places him at risk for being harmed. This same stylist has cut Gavin's hair three other times and every time we were in the salon he told us the next one would be better.

I truly believe today actually had the potential to be Gavin's best haircut too, but the stylist would never get to see that success. Gavin actually calmly walked into the salon. He sat in the chair frustrated and said no haircut, no haircut, but he wasn't screaming.

We built trust and rapport with this man. We told him on our first visit with him that Gavin had Autism and he reassured us not to worry. He encouraged us every time it wasn't that bad. So I can't figure out why today he turned us away.

We have attempted to go to this stylist three other times this summer, but he was off or on vacation all of the times we stopped by; it's a Supercuts and you can't make appointments. We thought about going somewhere else, but ultimately waited (and grew out Gavin's hair) because we knew he would do a good job with Gavin. Not only that, but we didn't want to start the process of a looking for a new stylist again. I didn't want to have to explain Gavin's dislike for haircuts to another salon and hope the new stylist would be patient with us when cutting his hair. I wish the stylist at Supercuts had told us at the last appointment that he didn't want to do it again. At least then we would have known that we had to look for a new salon. We still would have been disappointed, but we would have moved on sooner.

One month ago marked the two year anniversary of Gavin's diagnosis. August 13, 2013, will be a date that stays with us for the rest of our lives. Every time we feel like we have made progress something pushes us back and reminds us that these struggles are not going away anytime soon. The feelings/emotions that I felt that morning at his pediatrician's office are still so fresh in my mind.

There needs to be a lot more emphasis on what a child can do instead of what he cannot do. - Temple Grandin

gavin poconosThat's not to say that progress hasn't happened in the last two years. It was only nine months ago that I was writing about my desire to hear Gavin speak. I was so scared that he could be locked inside his own head forever with our family's own secret language, but now we talk everyday. Some days he's yelling as any toddler would do, other days he's telling me he loves me and screaming that he will miss me when I drop him off at school/daycare. There are no words to express my happiness when I hear his sweet adorable voice.

It's amazing though that finding Gavin's voice has made people act like he is cured. As if the only thing that was placing him on the spectrum was his speech. It's very frustrating and difficult to explain to people that yes we are beyond excited that Gavin is finally talking, but we are not going to minimize the other daily struggles that are still with us.

There are still an abundance of obstacles that we have ahead of us. The challenges we continue to face some days makes it feels like we are reliving August 13, 2013 over and over again. For instance, I still can't get him to change his shoes, the brands of foods he eats, the type of diapers he wears, or taking it even one step further to use the bathroom. Haircuts were something we thought we were slowing starting to figure out with him, but now we are back at square one.

Earlier this year we were interviewed for a training video for teachers working with special needs children. One of the questions the interviewer asked me was what I hoped for Gavin when he's older. I struggled with that question and still do as I honestly don't know the answer. Obviously I want him to be able to assimilate into society, to be strong, independent, and not need therapy the rest of his life. However, right now that's too far away to imagine what the world will be like for Gavin and how he will function in it. We have to focus on the day to day right now and not get lost in the big picture. Incidents like today also show me it is so much more than preparing Gavin for this world, but it's also about teaching this world about Gavin.

These are the thoughts that I have to wrestle with every day. These are the thoughts that still keep me up at night, make me tear up, and sometimes actually break down and cry. I have learned so much in the last two years about autism, about myself, and about the importance of family. It is so important for us to be one unit that understands that we are stronger fighting the fight together than apart.

walk autismIn a little over a month we will participate in the Autism Speaks Walk for a second year in a row. Today I was reminded why we walk. We walk to raise awareness about Autism. We walk to create an understanding that will hopefully one day lead to acceptance. We walk in hopes of seeing a world where individuals can learn to embrace and appreciate differences.

 

For more posts from Shawna visit salt127.wordpress.com

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