There are a lot of people who are in denial that their child has a problem and avoid the reality that something is wrong.
I am NOT one of those people ..
My son has Anxiety Disorder with traits of Asperger Syndrome.
I knew Jay had a problem the minute he was born. I don't really know what signs but as a mother I knew.
I had a normal pregnancy - I went into labor on Friday 18th October. Down to every 10 minutes too.. this went on throughout the night until Saturday morning - the day my parents landed from Australia to be with me for the birth of their first grand child. By the time they knocked on the door - contractions had stopped totally.. until Sunday night - again up to every 10 minutes until Monday morning when they all stopped again. So went to the midwife that afternoon to be checked out..all is fine..no, you're not dilated, no, baby isn't coming yet..hmmm
So off home again and 2 hours later, the contractions started up again.. this time up to 5 minutes..so grab bags! and off to hospital.
After getting signed in, stripped off and into a charming gown. I was admitted into the maternity ward.. okay, long story short.. I was going to have a natural birth - no drugs except gas and air.
2 tanks of gas and air later we ran into problems. Jay was stuck against my pelvic lip.. and with every contraction he was stuck and i started to swell..so the nurses/doctor decided to STOP my labor until swelling had gone down so they could move him.. by this stage i was semi conscious, the drugs they gave me then knocked me out totally.
I woke up 3pm the next afternoon with a epidural needle sticking out of my spine (no drug just the needle) and this sudden urge to push..no don't push, wait a bit longer.. screw that i pushed, my body told me too, so i did.
Jay popped out, literally.. major problem tho, the cord had ripped..i had retained the placenta and the umbilical cord was 5" long and 4cm thick.. nowhere near natural..no wonder the bugger was stuck.
I was taken to surgery straight away for a spinal block, placenta removed and more than 4 dozen stitches.. cheers son! lol
So birth was not natural after all.
Over the next few weeks I then fully knew that Jay had a problem..his eyes told most of my concerns - it's like he was vacant - actually - emotionless.
He didn't sleep .. 2 hours each time and didn't feed too well.. (nor did I for a few years either) After about 9months Jay was put onto a sleep aid..so he could get a good block of sleep - me too I can tell you..as i worked from 8-6 Mon-Fri.. luckily with my job, Jay came to work with me.
Jay developed physically ahead for his age.. he was born with 4 teeth, crawling at 4 months and walking by 8-9 months old..but no speech until he was 3-4 yrs old.
He would not take solids well, gag factor..some tastes he could do but mostly everything consisted of chicken, potato in a mush..until he was 4 yrs old.
By 18months I started to see more signs of problems he was encountering.
He could not handle being in a group of more than 3 people/children. He would scream if anyone entered his space. Not get away scream but like he was going to die. Piercing.
Everywhere we went , we had to take a train (Thomas) he would not let it go ever, even when asleep. He would freak out totally if someone knew entered a room. If another child made a noise then he would thrash his head and scream. Bizarre behavior which triggered me to become a really strong person with battling the world of Special Services in the UK.
I knew Jay had a problem and the battle was actually convincing people to listen and help me, so I could help Jay. I needed to know what he had wrong so i could help him, otherwise it's a vicious circle of frustration.
so first step doctor (G.P) well that's a challenge.. but after 6 months of visits, he finally gave in and at my request put Jay in for an M.R.I scan. I knew the problem was mental not physical. I had to know whether he was functioning on all 4 cylinders, as they say... so when Jay was 3 was put into the medical system waiting a scan.. (Yawn) bu i wanted to know if all was functioning correctly
while waiting I didn't sit still or be quiet either.. the doors wont open unless you knock hard..
So off to GP to ask to be referred to specialists.. mainly Autism..as I knew that this was some kind of strand of it.
The doctors never saw what I saw, or could see what I could see.. I had worked with enough children by this point that i knew what I was talking about and no way was I in denial that my son needed help and I was going to get it.
Eventually I got appointments with a special needs pediatrician - again she couldn't see through my eyes - just another child, just another patient..but after 4 visits she finally started to see something and to shut the mother up and get her away - she referred us to seek a full diagnosis from the Autism clinic.. NOW..here's the idiotic part.. this was in 2000 .. I am STILL waiting for an appointment (regardless of me leaving the country..lol) but we never did get to the clinic.
woooooooohoooooooooooo
That day was as traumatic as anything.. a 6 hr wait of no food or drink for a 3+ yr old.. not fun.. then the trauma of needles, taped monitors to head.. a child having a melt down (or yeh he also hates band aids / plasters .. could never use them.) so all modes were taped onto his skin....finally Jay fell asleep and the scan was done - i had to wait outside etc etc.. so I could not watch the process or be there if he woke up screaming the hospital done.. and boy did he.. people having no clue what to do.. finally I stormed through the doors, pushed away the 3 nurses and quickly picked him and removed the band-aids..and gave him back Thomas.. the screaming stopped within 5 seconds!
the results came back a month later.. they did a bloody CAT scan not a MRI..black and white still pictures , showing no blood flow, or activity .. I was fuming .. I was possessed I can tell you! boy was I on that phone and instantly on people's backs and in their faces..wasn't pretty lol
back to square one..
Now at this stage of the game I had met Alan and we were about to embark on the biggest choice I have ever .. moving countries from UK to the USA and stopping everything I had fought for..but the paperwork came with me, as I knew I had to start all over again. And the trains came too - the whole box. I wasn't stripping him of everything.
Jay is routine based - everything has to be planned out and told to him. we're going here, then here, then we do this, then we do that etc etc - very military life
In June 2001 we moved to Wyoming and for the first time Jay and I were together 24-7 for a whole year..it was good for both of us
no school, no routine, no planning ..everything was gone from the life that Jay knew.
It was a very strange year..for the both of us, as i had worked full time since the age of 16 and now retired at the age of 33
after 6 months i started the school process.. as he would be starting school in September 2002
So I went to the school he would be going to - Centennial) and spoke to the teachers and within an hour they were on the phone to special ed and the same afternoon I had an appointment to meet the case manager .OMG.. I wasn't used used to this.
Met special Ed and instantly they saw what I saw with Jay
within 4 hours Jay had a space at "Normal" school..WITH
1) Speech Therapy
2) Educational Therapy
3) Behavior Therapy
4) Para Professional
HELLO?!
I could not believe it.
No banging on doors, relentless calls..all handed to me on a plate. I was astounded by the willingness to help Jay succeed in a normal everyday life.
Jay from day one of school was on an IEP - Independent Educational Program .. with annual group meetings and assessments.
now Jay starting school wasn't easy - the screaming, hiding under tables, hiding from people, reacting to noises. to the point where Jay wore headphones for 3 years so he could work and not hear the sound of a pencil - big hate with him.
the teachers were brilliant and coped extremely well with every situation Jay pulled.
At his first evaluation it was decided to have a diagnosis done of Jay, as they had worked with him for a year and got a real understanding of him.
So they called in 2 psychologists into assess Jay at school to observe etc. (For an hour)
at the resulting meeting, they both came up with ADHD..oooh here comes the possessed woman again..
No it wasn't
so at this meeting I confronted both of these people..asking whether they work on commission for Ritalin and their reports are worthless and they could leave the meeting as they did not explore other possibilities and just like alot of kids..diagnosed and drugged up for something they haven't got.
now the IEP people saw who they were dealing with. The case manager then (reluctantly) organized a diagnosis from a Psychiatrist (a real doctor) and the following week we went to Fort Collins and after an hour and a half of him being alone with Jay .. he came out with Anxiety Disorder with traits of Asperger.. HALI-bloody-LUYAH ..finally we had the answer
so now we can move on and get Jay's life on track
We held Jay back one year (no child gets left behind rule) and he repeated first grade, so that Jay could catch up with his education..
He couldn't read or write till the age of 7 - 8
Last summer when school was out for 3 months of summer vacation - Jay read the Hobbit, then Fellowship of the Rings, the Two towers and then 5 books on his school program.. the first books (home choice) are not what I call kid books to read either, or small.
Jay with his elementary teachers on his last day of school
Jay is now 13 and has just left Centennial Elementary , graduating with A's and B's
We are so proud of everything Jay has accomplished throughout his life so far - he is the hardest working child I know that , through diversity and obstacles, he pulls of these grades and all at grade level too - we never thought that he would get that far, and that's a hard thing to say as a parent too, as you all want your children to succeed,
This kid.. blows me away.
He starts junior High and his IEP carries on as it has done since the age of 6.. he will have all the help he can possibly want to succeed at school, the rest now is up to him.
One thing we have done with Jay since he was old enough to understand.. responsibility..
he is in charge of his own decisions..
actions and consequences are his alone..its his choice with everything he does.. if he screws up then his choice to do so and accept the consequence..etc..
Jay is control of his own actions through all his decisions - he is a very black and white / true or false..there is no gray and in between .. he cannot lie to save his life..he tried and decided to come clean and confess he screwed up ..
He still thinks in the negative first - everything is going to be bad.. he does not see the positive in anything until it thinks about it, digests it and analyzes it to the max before he settles into what is going to happen - this I don't think will ever change
this is helping him grow stronger and more his own person and we are tough parents with boundaries and guidelines and rules and expectations for him to be the best that he can be.
I will not belly rub - hot milk and cookies with Jay, or any child.. they cannot grow if they are over protected and restricted from making their own choices, as long as they understand the consequences if they screw up..or consequences if they succeed too..
He is compassionate, has empathy, respect, manners and morals - something that is quickly disappearing from children today. he cooks for himself, does his own laundry, vacuums the house daily and he does NOT get an allowance - he is learning that being part of a family means helping as a family for no monetary reward. But he wants for nothing. He saves his own money from Xmas, birthdays into a savings account to save up for his own saddle and after the saddle, his first vehicle. He has grown up that parents are not a walking bank account and if he wants something he has to work for it and respect the value of a dollar .
Things do get easier - you have to fight for what you want - you have to fight to get heard - but if you make enough noise finally someone will listen
I am proud to say that my child has special needs
There is only one advocate for your child..and that is YOU