Saturday, May 17, 2008

Micro- WHAT?






MICRO CEPHALY.

no lie. microcephaly. ever hear of it? how about significant microcephaly. relative microcelphaly. developmental delay. sensory integration disorder. pervasive developmental delay not otherwise specified......and (drum roll please,) last but not least.........


"we don't know." "he doesn't fit into any box so we would like him EVALUATED AGAIN BY A PSYCHIATRIST"
?????????????????????????????????????????

I am talking about my beautiful sweet loving son, Caleb. It all started one day when way back I took him to a well "infant" check up.

The nurse measured his head. The nurse measured his head again. She looked at the file and measured it again. She said, "humph" and measured his head AGAIN.


That was the begining of hell.

The doctor came in. She looked at the charts and measured his head. She looked at the charts and measured his head again. She said, "huh. ok we are just going to watch it".

WATCH WHAT?

His head circumference had not grown from 6 months to 9 months.

What sane doctor is going to think that a mother of a 6 month old baby..........who tried FOREVER to have this 6 month old answer to prayer...........and lost a baby early in a pregancy prior to having this 6 month old baby..............to "WAIT AND SEE" without worrying?

So I obsessed. I didn't have internet then which is a good thing, but I obsessed. My son's head didn't grow. I prayed with the church women and gave it to God- HE would know how to deal with this and make everything all right.

Then I walked into the 12 month appointment and well, the nurse measured his head. She looked at the chart and measured his head again..........and said, "oh"; looked perplexed; looked at the chart and measured his head again.

I knew this couldn't be good.

The doctor came in and measured his head. She looked at the chart and.........measured his head again. She said, "ok there is probably nothing to be alarmed about but we are going to send him for x-rays just to rule out Craniosynostosis."

Cranio- what? I got a social work degree not a medical one.

OK- long story short; my son's head stopped growing at age 6 months. We went to X-ray and his skull bones were not fused together to early (craniosynostosis). What I thought was good news turned out to be worse; his brain was not growing.

We then took him to Connecticut Children's Medical Center for an MRI. He was at the age where he might respond to "silly juice" which is apparently safer than anesthesia.

S I L L Y J U I C E

is not silly.


He became insane. He fell asleep in my arms and a demon took over. He started thrashing, screaming, throwing his body, but he could not open his eyes no matter how I tried to wake him. I was afraid he would kill himself on the hosptial bed. My husand and I had to hold him together while he thrashed, twisted and screamed in agony. 20 minutes went by. He finally went out. I cried.

The nurse walked in. She said when the kids are older they sometimes react like that.

Thankyou very much BITCH for not preparing me to keep my kid safe.

That is what I thought. I wouldnt' have said that outloud because I was at the time "a good christian wife and mother". Of course no one from our church was with us to pray, give support or love us........but back in those days I didn't think of that.

I had read the list of tests that the MRI and bloodwork was going to look for.

LISSENCEPHALY was one of them. I got my friend to look it up online. Not good. Lissencephaly meant severe retardation- smooth brain- and death at around age 2. So I got to freak myself out for the week before the MRI. Visions of funerals tormented me at night.

The results came back. NO lissencephaly. I thanked GOD. No abnormalities.... I thanked God. But a severly microcephalic head. VERY SMALL.

THE MEDICAL COMMUNITY HAD NO CLUE WHY.

So we visited more doctors for evaluations........the eye doctor looked behind his eyes to see any abnormalities- there were none. The ear doctors ran tests........he appeared normal for his age. The geneticists tested his blood and measured all his body parts.....she could find no "SYNDROME".

all was well?

no. the head refused to grow. At age 3 he had the head circumference 50%tile of a 6 month old baby.

I prayed for his head to grow. I fed him lots of fat- I mean brain is mostly fat, right? I let him drink half and half- they say the fat in milk helps the brain grow.......and I put him on every prayer chain, and held him tight at night.

He developed on age appropriateness.

Then my world started to change.

Caleb started to spin.

and spin and spin and spin.........he could spin for over an hour and not get dizzy.

He could hear things that no normal person could hear and covered his ears and hid.

He would line up all my spices, open the tops.........and they became "GUYS" complete with story lines.

He would watch tv shows once and repeat it back to me VERBATIM.

He was echolaic...

He was toliet trained if naked; but could never feel the urge when dressed.

I worked with AUTISTIC kids that were also mentally delayed. I kept thinking- he's like AUSTIC but smart>?

So the doctor sent us for an autistic evalution because unknown to me- autism is a SPECTRUM. You can be smart and be autistic- in fact you can be genius and be autistic.

We went back to the geneticist who drew blood again and measured him every where.

A laughing moment was when she measured the space between his nipples. My four year old looked concerned for her. When she left the room, he turned to me and said, "MOM, the doctor just measured my nipples" and cracked up in laughter. I joined him because it was funny. Who is the weird one here???

The diagnosing clinician felt that she couldn't tell if he was autistic because the "social" piece was unknown........so he entered an early intervention preschool in town with a speech and language delay.

Their findings with the psychiatrist? GLOBAL DEVELOPMENTAL DELAYS AND SENSORY INTEGRATION DISORDER.
Want to hear something funny? He was no longer MICROCEPHALIC. HIS HEAD GREW. So now the label relative microcephaly.......meaning he once was.

We entered the world of occupational therapy and sensory diets...........

and Caleb behaved like a charm for preschool so he went on to kindergarten.

Kindergarten. He couldn't ride the bus, the noise was too loud and hurt his supersonic ears.

He couldn't stay for full day- it was just- too much.

We modified his program; half day kindergarten and he completed the year. He had to repeat kindergarten because he was only able to stay half day.
Kindergarten year 2 was horrible. He couldn't handle full day, he couldn't handle cafetaria or bus.........anything noisy.
He had no proactive sensory diet so he developed "BEHAVIORS".
Running out of the classroom when the noise was too much;
taking off shoes and walking through puddles on the playground;
hidding under the teacher's desk and removing his shirt;
yelling to teachers "fu#kitall"
are apparently inappropriate ways to behave in kindergarten. :)
They sent him home on homebound education.
I told them to keep their homebound educator, I could teach kindergarten and spare the child a "change". (did I say he doesn't take too well to new things?)
I despised the program that they were going to place him in, got a private evaluation.......and his new labels became:
PDD-NOS.
The new clinician thought I was wonderful. She thought that my skill and training was meeting
his needs. She thought the only thing pathological in his life was school, have I considered homeschooling? She labeled him on the spectrum- said he was typical aspergers kid but had a speech delay and no real OCD so.......he really didn't fit into that box.
PDD-NOS.
It means that you are autistic but not typical. You don't have the right problems to get a real name of your autism. You are not aspergers or autistic or high functioning autistic- you are pdd nos.
So I homeschooled him.
He stabalized quickly. He learned. He thrived. He laughed. He loved. He grew.
I got pregnant.
I got tired.
I got concerned that since he was doing so well, since he was behaving and thriving- could he return to REGULAR school with a para for his autism?
He entered a 2 hour diagnostic program with a wonderful teacher. He attends maybe 3 days a week. I homeschool him for his educational learning, he gets peer relationships, social skills and the practice of getting up every morning and getting somewhere.
They just completed his evaluations. Their findings?
He has a low probability of being autistic. He is AT grade level for IQ function. He has issues that don't fit into ANY of their boxes. They see some adhd- which is so NOT true.......
They are paying for a consult with a pyschiatrist to do more evaluations..........
WTF?
Is this to be a life time of evaluations for this child?
When does he get to be a little boy?
I am tired of therapies, tired of behavior programs, sticker charts and communication logs.......tired of evaluations that are completed by filling in little bubbles that are subjective and outdated..............tired tired tired.
SO HE DOESN'T FIT INTO YOUR BOX.
Make a new box.
Leave us alone. that is how i feel about this at this very moment. Leave my little boy alone and let him PLAY.

5 comments:

Jayne said...

Whew.... you know I read this feeling like you feel. The difference is, I fully have the diagnosis, which will never change. Bless yours and Caleb's souls. I've always said that as much as they might want to pound my little square peg and make him fit, he'll never go into that round hole. Thankfully, we live in a district that sees Sam's strengths and works with us to accommodate his needs. PDD-NOS... a very gray area indeed. Wishing you peace and a way to just give him what he needs... a way to learn and grow out from under a microscope.

Sherry at the Zoo said...

OMG....You sound so normal to me! Since I homeschool, I see so many parents who have children "outside the box" who do WONDERFULLY when homeschooled. And they are NORMAL! They learn, they play, they smile, they laugh. I wish the schools and the experts would just lighten up a bit and not expect every child to be like a little robot perfect in all ways.

We made it through public kindergarten (barely) and have homeschooled since and never looked back. I know all about sensory integration, speech therapy, occupational therapy, physical therapy and on and on and on......

My advice (which you didn't ask for I realize - LOL!) is to take a year off from all the schools, therapies, professionals. Just read, do some math, and HAVE FUN! You'll be surprised how much that does for your entire family, and how much they learn from the world around them when there is no pressure to be occupied with the what society wants and thinks they should learn.

You hit a nerve, can you tell?

Meg said...

I have an 18 yr old son with Aspergers Syndrome. I haven't had the bitch of a time you have had with doctors, but I have had it with school officials, psychologists, teachers without a clue, abusive teachers who shouldn't be in the profession a. tall, AND.....abusive elders who told me my son was the worst case of emotional dysfunction they had ever seen. HAH!!!!!!!!!!!

THEN, told me 'all he needs is his mother's love', to cure him. This from a group of men who think every malady from autism to bankruptcy is the result of women who won't submit to them.

The elder who pronounced this judgement on my son used to be one of MY high school teachers, has worked with teenagers his whole pathetic life, and has four, count 'em, four, teenagers with various levels of autism in the group of teenagers he is responsible for at his church (a couple of hundred kids all told.) He also has...get this....a mentally retarded son. SO, if anyone should know how to approach this sort of thing, it should be him. But, he is also a horse's patootie, so we won't blame him for his incompetence.

So...I can empathise fully with your pain at the 'establishment' being without a clue, and I fully endorse, celebrate and encourage your female intuition, and special understanding of your own son.

THat old saying "mother knows best", is really where its at...and the more 'experts' out there who understood that fact, the better off we will all be.

shaun said...

Man,
I just love you more all the time (in a strictly platonic sense of course)You just sound so much like my wife and on these types of issues I so agree. We have a son(not my biological son, but mine none the less) Who also has extremely odd behaviors and can be a challenge. I have referred to him as Aspergers boy on occasion , although he is not diagnosed with anything as of yet.
Oddly enough, it wasn't because of him that my wife decided to pull our kkids out of public school, it was because of AJ an extremely socially well adjusted boy who was just a bit behind what the school now considers on grade level for kindergarten. Actually it was the talk of an FCAT for kindergarten that scared her enough and him getting labeled right of the bat so his scores won't count against the school's rating. More and more (especially if they have special needs)our kids are becoming pawns in an education system that is much more interested in self-promotion /perpetuation than it is in educating our kids.
You do what you feel is best for your son and tell the naysayers to piss off because they don't have to live with your son or take care of him after he has been disabled by their ignorance.
Peace

Tiaras & Tantrums said...

Just let your son be a little boy!
I went crazy over the therapies and finally just let it all go. Now my son still has issues, but we deal on a issue basis at that time theory. He is gifted beyond gifted, like yours, can't attend school FT b/c of the audio levels, like yours. Just let him be a little boy!! Sounds like a plan!