Thursday, May 1, 2014

And Then the Curveball



You know how sometimes someone is staring at you...screaming at you...waving at you...desperately trying to get your attention and you still miss them?  Then, when you finally see them, you realize that you heard the screaming and subconsciously wondered what it was and dismissed it.  You saw the waving but didn't think they were waving at you.  You wonder how in the world you were so oblivious.  They were right there in front of you.

I am the oblivious mom and the person waving is Autism.  I am 100% sure that Bunny has a dual diagnosis of down syndrome and autism.  It makes so much sense now that I have no idea how I have missed it.  How everyone missed it.  Now the autism yells at me all day long and I think I must have been completely blind not to realize it before now.

Two weeks ago I was making an appointment for Bunny.  There is a naturopath that just moved into our area that specializes in autism.  I wanted him to see Bunny because there are many crossover issues between autism and down syndrome.  Bunny has skin rashes and gut issues that his pediatrician was blowing off as "down syndrome".  I wanted someone to help me figure out what was causing these issues.

While I was talking to the naturopath's wife on the phone she asked if I thought Bunny had autism.  I said I didnt think so I just wanted a Dr who was "fluent" in special needs.  But the question gave me pause.  I googled.  The official websites that give symptoms of dual diagnosis (DS and ASD) were hit or miss. It was when I went to the blogs of mom's whose kids had a dual diagnosis that I knew Bunny had autism.  They described my son over and over.

Four days later we had our appointment and they also agreed with me.  Then as I brought it up with Bunny's therapists and I described my concerns and they watched him they also agreed.

Everything finally makes sense to me.  It's why Bunny is SO delayed in gross motor.  It's why Bunny is perfectly happy to play by himself all day.  It's why he stims all day (if I let him).  It's why....it's why....it's why.

I am having a REALLY hard time with this.  I feel like my heart has been broken all over again.  My sweet boy already has so much to overcome and now he has an even larger obstacle.  I am so afraid because I have no idea what this means for his future.  I really try not to dwell on it but my biggest fear is that I won't ever get to know my son.  I've been waiting so long to see his personality develop and to see a relationship grow with his twin brother.  The little personality I was beginning to see is just slipping away from me.

It was a shock and it was hard when I got his diagnosis of down syndrome.  But over the last three years I have fallen in love with down syndrome and I was looking forward to it.  Now I have no idea what I'm looking forward to.  I truly feel more alone than ever because I know no one in this situation.

The big picture is escaping me at this moment.  In my very small blip on the picture I am wondering what in the hell the plan was putting us all in the same family.  My kids all have big personalities and big needs.  Buddy takes up so much of my time just managing him.  Meanwhile Bunny stims away.  Boogie tells me on a daily basis she wishes she had me all to herself.  Baby is acting out because "I never listen to her".  I do most of it on my own because of Daddy's job.  It just seems like a bad plan.  I know it's not and I know there is a big picture but in my narrow view of exhaustion and heartbreak I am having a hard time remembering that.

I believe that the things I was already putting in motion...his neurodevelopmental program and working with a naturopath are the very best ways I can help him.  I have already seen a slight improvement in him just in the last few weeks.  I doubt I will go for a formal diagnosis at this point.  I don't see any benefits except that we would get aba therapy which I feel he is not ready for anyway. I may change my mind.

This does not change how much I love my son.  This does not change my commitment to helping him.  If anything, I am on a warpath.  I am in research mode. 

I haven't said anything to people because there is no formal diagnosis but I am certain it's the truth.  I wish with all my heart that it wasn't.




1 comment:

  1. Just read this tonight and my heart aches for yours. I am so sorry. WTF is really all I can scream along with you. I wish it weren't all so flipping hard and confusing and exhausting. I wish we could just shut off our brains and live in the right this very moment, moment. That is what I am working on, right this very moment. Sending you love and peace and hey, he's adorable!

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