Opening up to the world-1 year ago

2017-98A year ago today I put my thoughts on Nolan’s differences to paper.  I blogged about the journey we were on that has led this to be quite the whirl-wind of a year.  It has been quite the year.

It was 2.5 more months before we got the diagnosis I already knew in my heart.  We have been through birth-3, through a home ABA program and into a center based one now, we have been through speech with birth-3 and now private speech.  We have made an IEP and have begun school.

I have also turned this blog into more than a family sharing for my out of town family, but a way to talk to and share with other autism families/special needs families/families just doing what they do.  We have also moved hosts so today, I copy and paste that post, and put it here.  This is where we were a year ago, next year will be another list of accomplishments and stops along our journey.

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Our sweet, sweet baby boy Nolan has been going through some challenges.  We have noticed many little things and alone they are just a quirky little boy, but put together they COULD be indicators of something more.  With my early childhood background I think I noticed them more than some people would.  I justified or explained them away them for a long time (he just got a sister, he’s just 2, he doesn’t see a lot of other kids, etc).   Well September 1, I had a dream and woke up shooting up in bed saying out loud, Nolan is autistic.  Now, was my dream true? I don’t know.  What I do know, I cannot deny it any longer we just need to investigate further so we can help our little boy.

I am not looking for someone to give me a diagnosis because I can’t handle my kid or need help handling him.  I am ok if they just tell me I have a quirky little boy, but at the same time, I want to be able to help him in any way I can.  If I can help him be more successful when it comes to school I want to help him.  I want to front load support and coping mechanisms before he is in school so when he is in school he can focus on school.

I contacted birth-3 and had time come out and visit. They discovered Nolan is right on if not advanced in his gross motor skills, fine motor skills, and academics.  He is behind in social and he is sensory seeking.  That being said, since he is still so successful still in the other areas and they help him compensate, they cannot really thing of any “goals” we need right now so we can revisit in 3 months (December).

Things we were noticing:

  • avoiding eye contact
  • doesn’t acknowledge Stella
  • would zone out/hyper-focus on things
  • avoiding social situations
  • upset in some social situations
  • make fists and shake when excited
  • jumping all.the.time
  • not a ton of expressive language
  • does not say Me, mine, my
  • copies phrases like a parrot (“I got you” when he wants to be held because thats what I say when I hold him, “Help you”when he wanted help because I always say do you want me to help you)
  • Doesn’t want you “watch me!” or “look what I did!”
  • Sensory seeking (jumps, rolls, roll crayons on head, likes pressure, etc)

Our pediatrician stated that birth-3 can help treat problems and provide supports, but they cannot necessarily diagnose.  He then recommended that  IF birth-3 said there were some areas of concern we should go to the local mental health and wellness center for kids to have him assessed to see if it would, indeed, be autism and they can do longitudinal studies.  Based on what birth-3 said, we are pursuing this avenue.  We have an appointment in December.

There were some areas they said he needed to work on that I had never thought of working on before. I was amazed at the growth he could make quickly!  We pushed drinking with a cup and using spoons right after they left and suddenly he had it easy.  He is starting to take off his own clothes.  He is using words more (we make him).  We use phrases like “relax” to remind him to calm his body (currently working!)  We have him look us in the eyes when talking to us to get better focus and practice.

We have gotten him a weighted blanket for bed to help provide pressure and calm him, got him a nursing cover from Cover Me Ponchos (he kept stealing mine–LOVES the fabric, so we got him one to have of his own.  It is stretchy/provides resistance, able to wrap himself in it, rub the fabric on his face, etc).  We are back to wearing the zippy, again for the sensory-helping him calm with the “limits” of the fabric.  We can encourage jumping on his mini-trampoline and riding in the jeep (vibrations).   We are going to story time at the library and working on putting him in social situations.

 

He has his strengths too!  He can count to 13, he knows his colors, he can jump with 2 feet, can go up stairs sometimes even alternating feet, his fine motor skills are age appropriate, and his problem solving skills are on track as well.

Counting up to 13 (this was months ago, he’s more consistent now)
Colors (sorry it is upside down)
Motor Skills, Golfing
Using eating tools/cup
Fake snoring (its dark because he’s fake sleeping!)

Now the feels….
Alex and I love Nolan with our whole being.  He is adorable, he is quirky, he is loving, cuddly and he is sweet.  He is smart, he is learning something new every day.  Our son is perfect-he is just different. When going through this, there comes a point when you realize that what your viewed as what would be your normal life has to change.  Now this is not a bad thing, but it is different.  You almost GRIEVE the loss of your original vision.  Then you accept that you will have a new normal.  Now this paragraph makes this sound easy and short and sweet.  The concept is.  Typing this 7 weeks later is.  That being said, it took me 7 weeks to get here.  I have sobbed, I have been angry, I have blamed myself (could I have done something different when pregnant or up to this point, should I have waited to have Stella, etc, etc.)  I am sad I have to learn different, I am angry at myself for feeling sad because it really doesn’t matter if it is different, he’s my perfect little boy–and this isn’t about me.  I have been through the grieving process and I thing I am finally at the acceptance.  We are ready to be the support system our son.

I am writing this because it makes things easier if people understand.  If they hear him sobbing through story time, they get why.  If you see him get rough, you also can remind him to relax.  You understand why we are saying relax.  You know he isn’t ignoring you but may need a touch on the arm and a reminder to look in your eyes before he can respond.  If I well up in tears because he is the only one having a hard time at something, you can smile and remind me this too shall pass.

We will keep you up to date and go through the feels more with you.  It is ok to ask questions and we are open to talking about it.

If you are going through this and you want to chat, feel free to reach out!  I would love to chat if you would find that beneficial.

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