The Christmas list 2014

Every year I write about great gifts for my super sensory kid.  Like so many families with a different needs child, it is simply really hard to buy gifts for us.  It is hard for me to "make a list" because what is on it you may not really want to buy.  But believe me.... it would be helpful & appreciated! 

Here are my hints for this year...

Cliff Bar high protein kids granola bar (chocolate chip mint flavor is his FAVORITE). Pecans.  Organic high protein milkshakes.  Because his diet is so wonky, we buy these OFTEN. (Whole Foods gift card!)

Memberships.  Zoo, children's museum, national park pass or pool.  We go when we can, for as long as we can.  We utilize them.

Pay for his therapy, doctor or medication.  We spend minimal $55 a week on just these things.  It never stops. 

Amazon, iTunes and Target gift cards.  My child loves books and we purchase educational games on the ipad for him.  He can manage to shop by himself at Target and not enter a meltdown.

I know.... something he can unwrap because there is so much about that.... Our house is littered with things he rarely plays with.  He is not a child that sits quietly and plays alone with something.  He dumps everything out and then wants to go outside.  It is just how he plays. 

Outside things - he REALLY wants a collar for his bike.  This gadget allows the handle bars to spin without jacking up the brake line.  Ramps, half pipe, etc....  A racing helmet. 

Hot Wheel cars & tracks. He especially loves the motorcycle line.

Interesting games.  That help him manipulate fine motor or gross motor or word recognition. 

Flashlights. 

Legos.   

Science experiment type kits.  He loves to see how things work.  He is curious about simple experiments he can do himself. 

Play doh, watercolor paint, finger paint, white paper.

Clothing is rarely a good idea.  He wears a very limited wardrobe.  Because he is sensitive to tags and seams and doesn't do buttons or zippers well enough to have independence (which he craves).  He wears hand me downs more then not because they are already broken in.  And I assure you when he unwraps clothing he is not impressed or even happy.  He just doesn't care.

Anything that smells is a bad idea.  We use the same soap, shampoo, toothpaste, lotion and laundry detergent. We don't mix it up.  We don't use scented lotions.  It drives him mad.  Stuffing his stocking with smells will make him overloaded.

There is so much about a gift that my child just doesn't get.  I assure you we are training him to say "THANK YOU".  It is an ongoing process ~ one we will grow into eventually in our own way. 

Alone again

On Tuesday I subjected my beautiful child to yet another long evaluation.  We had worked hard with a doctors referral to get an evaluation at the leading Autism Diagnostic Center in Nebraska.  A 5 hour appointment with speech / language, psychiatry and autism screening assessments.  We walked away with a report of "your son has quirky behaviors but nothing that falls on the autism spectrum".  Really QUIRKY?  Is that official language?  And what in the hell should I do with that....

I can assure you hearing that my son is a "normal" little boy is not exactly comforting.  Nor is it helpful in any regard.  I can assure you that we live differently and have for 5 years.  We have learned to make it work and to make concessions.  The things we deal with on a daily basis take "normal" to a whole new level.  But for our family THIS IS HOW WE LIVE.... and few understand it or are able to relate to it.

What now you may ask??  We have decided no more appointments.  No more.  We have the medication and we will continue to go for medication management.  But we are not going to see a behavioral therapist or psychiatrist or psychologist with him.  We are going to read some books.  We are going to keep pressing him into activities he excels at.  We are going to wing it.  We will do what works and when it doesn't, we will figure something else out.  Just the 3 of us.  And when that stops being effective, we will search for some answers or some help from professionals. 

Because what happened is that my beautiful son wanted to know what is wrong with him.  He wanted details about ADHD, autism and ODD.  He wanted to know if he was broken or sick.  He wanted to know why we leave school to go see so many doctors.  He wanted to know if he was going to be ok. 

So after this last assessment and hearing he has "quirky" behaviors and answering a million questions from a 5 year old about what is wrong with him I knew we were done.  Because really at the end of the day, we 3 still live in this house, in this environment with the behaviors.  We never get away from them.  We are the ones who work on training him to look at us, not run off, stay out of the street, not eat weird things, use a fork, use the toilet, to be gentle with pets and people.... our needs are different then a typical families but at the end of the day, we are the ones who do the work and get the rewards with our son.  No amount of education or degrees would prepare anyone for what we experience and face. 

My little boy is perfect.  What ever happens it is because of how we teach him and the support we give him.  He is not sick or broken or wrong in any way.  He is wildly entertaining on most occasions but not sick.

For a few weeks I felt like YEA SOMEONE FINALLY LISTENED TO MY TALES AND NOTICES THAT WE ARE LIVING IN A STRANGE WAY AND WE WILL FINALLY GET HELP FOR THE THINGS WE DON'T UNDERSTAND HOW TO CHANGE.... and now I think we are still in it alone and perhaps it is the way it should be. 

I will continue to share our experiences, struggles and joys.  Because often they are humorous and unbelievable!  But because somewhere there is a mom like me who is just starting off with and she is going to struggle and I know what that is like.  Believe me... I KNOW.  And one of you may read this blog and share it with her and she will for just that moment feel like she is not alone... it is all I can do... pass on my experiences and keep moving....