Keepers

Back from Vegas - was a great conference, and I have things to blog about!  However, because I am after all, me, I'm going to be difficult and post something entirely unrelated to my trip as my first post back.  Be happy though, this one has everything to do with Josh whereas anything I write about the trip won't.

There is a reason this one is getting posted now and that will be clear as I get on with it.

Over the course of the last 12 years, there have been many people who have been involved in this journey with Josh.  Some have come and gone, others were here anyway, some have come and stayed.  As with most things, not everyone that has been a part of his life in some way has been helpful or supportive.  There are a few though, that stand out among the rest, a handful of people that have made a big difference either for Josh, our family, or both.  It is this small group that this post is dedicated to.

I am very fortunate to have the family that I have.  I love them to death and they are amazing.  From day 1, they have been nothing but there for us - offering support, understanding, and unwavering love in the face of something that none of them have or had any previous experience with.  They understand why my house looks the way it does most of the time. They don't care that Josh runs around in a pull up or naked, has Blue's Clues on all the time, and eats like a foraging animal.  They ask appropriate questions, educate themselves, and accept Josh for who he is and love him unconditionally.  You might be thinking, well, duh, they're your family, this isn't exactly a newsflash.  Well, to be honest you're right, it's not a surprise to me because I know them, but, I still feel very fortunate because there are enough people out there who don't get this kind of support from within their own families to make it noteworthy. That's very sad but it's true. There are countless stories from parents of children on the spectrum out there whose own parents don't want to be around their affected grandchild or children.  Back in 2003, my mother, brother, and his wife, together helped me so that I could go to my 20th high-school reunion.  Josh was only 5 then and still pretty tough.  Ok, he's STILL tough.  But my reunion was back home of course, which meant that Josh would be with my mom where were staying - she lives in a small condo, surrounded by others on both sides as well as above so Josh tantrum was going to be heard and potentially disturb several of her neighbors.  She still took on the task and my brother and sister-in-law came to help, hoping that between the 3 of them they could keep him settled or at least reasonably so.  They came together to help me, my brother was helping my mom as well since she was quite nervous, and they all did this without hesitation so that I could have that 1 evening.  I went to the reunion and had a wonderful time.  Josh put my family through the ringer but they got through it together.  My mom had spoken to her neighbors ahead of time to let them know what was going on.  No complaints from anyone, even though he certainly made his presence known that night.  They did this for me.  It's only one example but it's a good one and one that I will always remember.

There have been a couple of stand-out teachers and support staff.  His early childhood crew was the best.  These were the ladies who had him back in the days when he would bloody his ears hitting himself so much and had to be removed to a portable building because his screaming would disrupt too many of the other classrooms at his school.  They were patient, loving, and consistent, and I'm not sure I would have gotten through those first few years of his schooling without them.

Over the years that we did ABA with him, we went through a number of therapists.  Out of all of them, there was only 1 who really ever understood how to work with him and that he truly bonded with.  Her name is Kristi (hi Kristi!! Yes, she reads the blog!) though Josh called her "Krunsti" for reasons none of us could figure out, but it was cute and hilarious so left it alone.  Kristi was very important to Josh, and while she was still an SLP student and before she got married and had her own babies, she was also the one and only babysitter we've ever had.  She was the only one we ever felt comfortable leaving him with on the rare occasions we did, and it didn't hurt that Zach loved her too.  Even though it's been many years since Josh has even seen her, he will still ask for her - out of the blue, he'll just look at me and say "Krunsti?" 

The people that own the dojo we go to are also deserving of a mention here.  Over the years from when I was first brining Zach to his classes and then going to my own, they have always been understanding and accepting of Josh and his issues.  Most of the rules about being in the dojo are allowed to be broken by Josh and pretty much ONLY Josh.  They never minded when he would be noisy during Zach's classes or when he would escape from me and end up out on the mats.  They always told me not to worry about bringing him even though I did (worry).  Again, this might seem like a simple thing, but when you are used to getting the hard stares and dirty looks and even been asked to leave other public places, this kind of acceptance and support is a big deal and means a lot.

Then there's the reason for this post in the first place.  Yes, I'm finally going to get to the point!  There is one person that I cannot thank enough for her presence in our lives.  She's not a teacher, not a therapist, not a caregiver, not family.  Believe it or not, she's my hairstylist.  She is also the person who cuts Josh's hair - this, being the more significant of the two.  When the boys were little I was taking them to one of those special kids' hair cut places. They got to sit in vehicles of some sort, there were toys, and they took kids with special needs.  One day I went and they were closed.  Forever.  And there wasn't anything similar anywhere close.  I was in a bit of a bind and had no idea where to try to take him.  I had just found a new place to get my own hair done and at my first appointment with Ryan (yes, her name is Ryan) we ended up talking about Josh.  Turns out she had a cousin that was autistic that she had been close to so she really understood a lot of what I was telling her.  I happened to mention the haircut situation and she suggested I bring him in to her.  I asked if she really would be ok with that, since it would likely be difficult and she insisted.  So I did.  He sat on my lap, and even though he wasn't still, I was able to hold him and she was skilled enough to be able to give him a great haircut despite his fussing and constant moving.  That was 8 years ago and we have been going to her ever since.  He's had his ups and downs over the years, sometimes being really great relatively speaking, sometimes being really really tough.  But without fail she cuts his hair, and she cuts it well, and unbelievably, it always looks great.  How she's able to manage this on a moving target I have no idea. There have been times when he's been loud and disruptive and times when he's simply hummed loudly the whole time.  She's always calm, always patient, never, ever, has she given up or been upset or frustrated.  Her manner has always helped me feel less stressed.  She got married and had her own baby boy this last year, and thankfully came right back to work - I am the most selfish person on the planet because all I could think of when she told me she was pregnant was "oh my god, what am I going to do without her?!"  But luckily she likes what she does and she was able to come back part time.  She has become a good friend over the years - she texted me right after she delivered her baby - but having someone that I can count on for something that is so difficult with Josh, is invaluable.  I'm writing this now because it was haircut time yesterday.  This time I couldn't hold him on my lap in the chair.  I tried but at 64 lbs and fighting with me I just couldn't do it.  At Ryan's suggestion, I got down on the floor with him.  That way I could sit behind him, wrap my legs around him to keep him from moving and bear hug to keep the arms down.  Yes, it's Wrestlemania but it's that or Josh looks like Cousin It.  Ryan got down on the floor with us and we got it done.  How many of you know a hair stylist that would get down on the floor with you like that??  All I know is, she is a special lady and if she ever stops working or moves I will be an extremely sad person.  And she's just so matter of fact about it all, I can't even really explain how helpful that is to me. 

So, to Ryan and the other special people who make this strange life a little less difficult, thank you.  You probably won't ever understand the impact your support and involvement in our lives has had, but you have made a difference, and that is no small thing.

 

I am actually leaving again for a couple of days and I'll be back Friday.  Look for Vegas stories and my review of the Cirque du Soleil show after that!

 

Also, a very big Happy Birthday to my Zach, who is 14 years old today :)