Choices, Chances, Changes

I really don’t have time to be writing this at this stage of the game, but I almost need to.  I need to process how after years of being an “autism warrior mama” so many things can be changing all at once, leaving me feeling like “the new kid” all over again.

That’s the thing about autism, since there is no “right way” to parent, or seek treatment for our kiddos, and there is no “end game” involved either.  There is no, ok, well we sought “treatment” or “therapy” and now we are all set.  Nope.  There is always something different that can be tried; there is always someone over your shoulder making suggestions.  And no one is right, but everyone is, because no one really knows.  In some ways, it’s positive, because there are always other avenues to explore if what you are doing isn’t working, but, there is always that feeling of not knowing what you are doing, and if you are me, always feeling like you aren’t doing enough.

Tomorrow is the start of some huge changes.  Nathan has finally been approved for ABA- starting tomorrow we will have therapists and techs here 8:30-11:30 am Tuesday, Wednesday, and Friday, and 4-6pm Tuesday-Friday.  Jack is right behind Nathan, and will be finishing his ABA evaluation on Thursday.  For Nathan that means a lot less down time, and less time at Cisco Center, which has been a huge part of his life for the past 2 years.  As I said to Cisco over the weekend, this is not a reflection of our opinion of Cisco Center, this is just me, as a mom, trying absolutely everything I can to help my son.  But that doesn’t make it easy, for Nate, or frankly for me.  This will change everything about our day to day life, from my schedule while working from home, to cleaning the house, preparing meals, to getting Nathan on the bus for school (I will need to drive him to Cisco center after lunch as that is where the bus picks him up).  My “guess” is that Jack will also end up with daily ABA 4-6 pm, after school.  Talk about crazy afternoons!  It’s worth it, and they deserve it.  It’s just more change.

Add to that the fact that Nate’s transition IEP meeting is this Thursday.  There will likely be about 12 people, in a room, reviewing all of his progress or lack thereof, and deciding where he will go to school next year.  I am pretty confident of what the decision will be, and I agree with it, but that doesn’t change how extremely emotional it is.  Because beneath this exterior, I am still that mom who wishes more than anything that I could put my little guy on the regular old bus with the neighbor kids and send him to kindergarten like most parents do.  There are several kids on our street who are the same age, and I will be watching them go next year.  It’s just all hard.  None of this is easy, and contrary to what people have told me a million times, it doesn’t get easier.  It gets harder

We are also working on new medical interventions for the boys, new supplements, dietary changes, the “usual”.  Jack has several medical consults coming up.  Nate still needs to complete his final NIH sleep study, as we had to cancel it last week when he was sick.  Jack’s IEP meeting is April 9^th, this year has been rough for him at school, and I don’t feel he is getting the support he needs.  His new BCBA and an educational advocate will be helping me prepare for this meeting.  I love his teachers, and his special educator, but I am seeing changes in him that concern me, increased anxiety, increased behaviors, and an inability to keep up academically. 

So in a nutshell, I know we are doing “the right things”.  But I feel like I am living in a pressure cooker over here.  There are days in life when all you can do is focus on “walking through” all of this.   Never in a million years did I think that there would be this many people involved in the raising of my two children.  Never in a million years did I think that I would have no idea what to do for my own kids.  But here I am.  I am extremely fortunate to have all of this support coming for the boys- but I am overwhelmed.  I think I need to seek some more support for ME.

Kindergarten Planning In Our Alternate Universe

It doesn’t matter how long you have been preparing yourself, how many times you have told yourself that it will be fine and you are prepared for what is to come, that you are doing what is best for your child.  When the time comes to confront your child’s challenges yet again, it HURTS. 

I remember Jack’s kindergarten transition, how nervous I was, how concerned I was that he didn’t have the services he needed (he didn’t) and that he would struggle a lot because of it (he did).  And now I know that relatively speaking, it was child’s play.  That experience was merely the training wheels for now.  The training wheels are off, and I find myself having a very difficult time coping.

Bottom line- I want my son to go to kindergarten.  I know that he can’t go- not to traditional kindergarten.  But right now, I am mourning this loss.  Even though I thought I had prepared myself.  I am angry, and I am devastated.  I am disappointed in myself, and all of the interventions and therapies that we have employed to help Nate.  We couldn’t get him there.  And God knows we tried.  I feel like a buzzer is going off “buzz!  Time’s up!”  Early intervention time is over, time to move on.  You had your chance and you blew it.

That’s not “what it is”, but right now, that’s what it feels like.   It’s hard to accept that these years of early intervention, these years that I was assured would be effective and I “wouldn’t even recognize my child in a year”, were unable to get him where he needed to be.  My kid is obviously not the only one, and we are super lucky to have the options that we do, but honestly, that doesn’t make it hurt any less.  I hurt for him, for what he doesn’t even know he’s missing.  I hurt for my husband, who would love to be able to coach a team for him and likely never will.  And yes, I feel sorry for myself.

I avoid moms who have kids Nate’s age, even friends who had babies at the same time I had Nate, especially when their kids are with them.  It is so incredibly painful- even if their child just interrupts a conversation “mommy, can I have this..?”  I can’t take it anymore.  It’s so incredibly, beautifully normal.  These kiddos are going to go to kindergarten and my beautiful perfect son will not.  They will be getting on a bus of their peers for the first time; my son has been taking a bus every single day since he was 3.  I ran into someone in the grocery store last week, her older son was in Jack’s preschool class when he was 3.  She has a daughter Nate’s age.  She was talking about the preschool, where her son continued to go, that her daughter is about to “graduate” from.  This weird feeling came over me.   It’s like I forgot it existed.  I forgot that world kept going when we had to bow out.  Nate never got to go to preschool.  I guess those other kids did- why this didn’t occur to me is beyond my comprehension.  We are living in an alternate universe over here.

We will be fine, I will be fine.  We will find a good program for Nate.  None of those things are in question at this point.  I just need to go through the process of letting this happen.  Of reacquainting myself yet again with what will be our “normal”.  I know that I would never want to subject Nate to typical kindergarten; it would be absolute torture for him at this point in his life.  But letting go of that dream, it’s just really hard.  No one will ever know what it’s like until they experience it.  See, there I go, trying to try to wrap a nice little bow around this post and end on a positive note.  You know what?  I’m not gonna do it.  THIS SUCKS.