Full of it....

 For the last few years I have read many different blogs from all ends of the blog spectrum.  The cureers, the bio-med types, the anti vaxers, the genetics causers, etc. etc. and at the end of the day we all love our kids.

With that said, I love my son.  I love every inch of him, his crazy hair, olive skin, little cracked toe nail, beauty mark on his cheek.  I love his giggle and smile, his imagination and his affection.....but if I was to say I don't exactly Love his Autism, I feel like I will be shunned by the autism community. 

Many times I have read the whole "I would never change my child for anything" blogs and comments....all I think is you can't be serious, your so Full of It.

I've been having a crappy few days.  This week my son went to school four days....and three of those days he bit someone.  I don't love this aspect of Autism and I wish I could shout it from the roof tops with out feeling like a bad mother. 

Day in and day out us parents work our butts off to help our children and there are some of us who will see little progress and others who will be stuck at a plateau for years.  Why can't I say I'm frustrated?  Why am I not allowed to murmur that this is not how I expected parenting to be.  Why can't I say that it hurts me to see my child having a tough time. 

If you sit here and look me in the eye and say you never regretted a moment of this, that you never wish you could change one little second of your child's life with Autism....I say to you,  your full of it.
Here it is, here is my confession, I love my son but there are things I wish I could have changed:

I wish I never had to watch my son be in pain because he couldn't communicate.  I wish he didn't eat crayons because he didn't know how to ask me for food.  I wish I wasn't as hard on him, because I didn't know.   I wish he didn't have to waste his babyhood in a room going through hours of therapy.  I wish I didn't have to put my baby on a bus for full day school.  I wish my son got invited to birthday parties.  I wish my son understood biting hurt people.  I wish he understood telling me he wanted me to die hurt me......I could go on. 

Every Ounce of my being loves that little boy.  At the same time, I think its ok for us parents to admit its not all peaches and cream, sunshine and rainbows.  Its ok to say sometimes Autism sucks, it sucks because it hurts my baby, but I LOVE him no matter what <3

The Neurologist Take 1

So I have finally gotten around to describing our trip to the Neurologist.  We chose a doctor about 45 minutes from our house by Stony Brook University Hospital, Dr. Gail Schuman.  If anyone on the island needs a pediatric Neurologist, she was great, so down to earth and understanding. 

When we got there I had some issues with referrals....apparently I needed one, as you guessed I didn't have one!  At least we got a faxed over referral from our pediatrician but that was a little stressful to say the least.  We had a pretty short wait and were brought back to the room to meet Dr. Gail.  Mostly she questioned us and watched him play.  He does have a diagnosis but I wanted a medical one also.  She said he had some great skills but wrote up that she also thought he needed ABA.  It seems the school district has decided by watching my son for a whole 30 minutes that they can decide that he does not need any behavioral therapy.  Hopefully Dr recommendation over takes the school districts decision, I will find out on the 16th :/.  So they checked LP's reflex's (great!) and some other little things.

We then got all of the recommended things we have to do.  I have to bring him back for an EEG on Aug 26th, have his blood worked up to check for chromosome issues and lastly get an MRI.  I am very anxious about all of these things but i know they should be done.  Even Dr. Gail asked me why they never did blood work ups on him at the pediatricians to which I had no response.  What got me thinking even more to the lack of knowledge on the pediatricians part is that they KNEW my son had soft markers for chromosomal abnormalities when i was pregnant.  This bothered the Neurologist.....

At my second trimester scan my son has calcium deposits in his heart and a cyst in his brain.....things they told me were soft markers for chromosomal abnormalities.  I refused an Amnio since my AFI work came back that i only had a 1 in 14,000 chance of having a child with issues.  He was born "fine" and no one ever looked into anything.  They said he was fine and those things probably disappeared.  So this is a main reason the Neurologist wanted the blood work up and to get a baseline MRI to see what it was like in there since we have no idea when and if that cyst went away.  So that's our first trip....with more to come.  Wish us luck on this journey!

Stop Spinning!

I don't even know what in Gods name is up with the boy today.  Seriously, the behaviors the last 2 days are pure insanity.  Many people have told me that when he is learning new things, it won't be uncommon for him to regress in other areas.  HOLY CRAP!  Here I am hoping that these Omega -3's and vitamins are going to help him out and he is behaving like a nutso......talking in sentences, but acting like a nut.  I guess that would prove the theory right, he's talking and having horrible behavior.....before he was being good and just using vocabulary.

He looks at me and says "mama, help me, get juice".  Aw how cute!  I get him juice and I go about my scrap booking.  I hear him drinking his juice and then I realize I hear spitting.  He had taken all 10 oz of water/juice put it in his mouth and then proceeded to SPIT it onto his castle and dinosaurs.  My carpet was soaked, his clothes were soaked and I was on the verge of loosing my mind.

Mind you this has come after a long day of cracker smashing into my rug and table flipping.  Yes, you heard me right, he tried to flip his work table over at least 5 times with all 3 therapists today.   Beasting out table flipping ala Teresa Guidice (Real Housewives of NJ).  He's also shaking his body and head uncontrollably which I've never seen before and spinning again, which I haven't seen in months.  The last thing he did was slam his head into the steps TWICE......he hasn't hit his head on something since he was 16 months old.   

I am so bummed today......I have this super optimistic outlook for my son and I get scared when I see these behaviors come out.  I ignorantly thought they were gone, today hurt.  August 9th I made a neurologist appointment for him.  I'm on  the fence about bringing him to a Developmental Pediatrician......I'd bring him to a DAN! Dr but they don't take insurance.

The last few weeks we started down this road of starting alternate treatments on top of his therapies (which I will say are the only proven methods of "Curing") and its just made me more stressed.  I am hoping I can see a difference soon, cant wait to try the behavioral balance in the coming weeks.  We are actually using my husband as a guinea pig first, we got him Omega-3's and the Behavioral Balance in pill form.....he starts tomorrow.  Hopefully that can work for him too and relieve some stress and help him socially.  All we want is to fix our baby.......I know there are people that say they want to leave their child the way they are but for us, slamming your head into a step and spitting on your toys is not ok.  Dear God, help us fix our baby.