Wednesday, April 23, 2014

Help. And the Truth I did not want to hear

Well, we are finally finding some help for our son who has autism, o.c.d., adhd, odd and 18 p minus.
Okay for those of you who don't know.  He actually has pdd-nos (possible Asperger's).  It means he has some but not all symptoms of high functioning autism.  O.C.D stands for obsessive compulsive disorder.  His is "Our my hands clean" all day.  Most of you know about attention deficit hyper activity disorder.  O.D.D. is oppositional defiance disorder.  18 p minus is rare chromosome disorder.

Joshua is a very smart but hyper boy.  He is mentally a professor and loves to learn and soaks up information like a sponge.  He is socially immature and often plays with children much younger.  He has trouble communicating feelings and any time he does not feel good his opposition comes out.

While at this doctor.  She told us he missed all the important early intervention.  Which, we already knew.  But, she told us he would never hold a full-time job.  He might could do a part-time job.  The key word being might.  While, I always knew in my heart this would be his case.  it was still hard to hear it.

But, Josh is back to his happy self for which I am thankful.  I love my happy, flappy boy.

Tuesday, April 22, 2014

A Blessing

We woke up to a funny smell this morning,  We did not know that they were running the sprinklers out back behind our apartment.  So, we called thinking it was a gas leak.  Well, after the maintenance guy did all his tests, he called the gas company to make sure.  As it turned out we did have a small gas leak on our stove.

So, praise God for this.  Pray we find the answers we need for Joshua.  He is still coughing and a bit hoarse.  His eyes are still gunky, yet, they wont put him on antibiotics saying it is a bad spring cold.

Sick Day

Today, Joshua said, "i don't feel good enough to go to school."  We fed him breakfast and got him dressed.  He is home sick.  He still has a cough and his hoarse on and off.  He says he wants to go to school, but does not feel good enough to go to school.  We have been to the doctor three times in a week.  They are saying it is a bad cold.
Prayers please.  I am stressed out and so is my husband.

Monday, April 21, 2014

This Morning

After waking up Josh asked me if it was a tcap day.  I replied, "no".  He seemed disappointed.  Then said, "I  don feel good enough for school.  Please believe me".  He seemed stuffy.  So, I had him come down for breakfast.  He ate it, but was struggling to swallow it.  He seemed okay and then got quiet.  He was home sick with an upper respiratory virus last week.  The strep test was negative last week.  We took him in Saturday to a walk in clinic and they said it was viral.  I took him again, today and they said a bad spring cold, congestion, and fluid on his left ear.  I had to use a walk in clinic because his primary care doctor was out of the office and his ENT was booked solid.  A cold for a week?  So, now we have medicine for the cough and congestion.
Most people can function when they have a cold, allergies or do not feel good.  He has trouble functioning when the slightest thing is wrong or when he is stressed.

I am so ready for this year to be over.  It has been rough.

Sunday, April 20, 2014

The Struggles Continue

Our son was doing okay at his New School, until after spring break.  We could not figure out what was wrong and why he did not want to get on the bus.  Which, he usually loves.  Finally, we decided it was partly due to constipation (severe) which is part of the 18 p minus and diet issues.  Of course we are only guessing.

We took him to the doctor for sinus stuff but said it was just a virus.

I called, and emailed his teacher to see if she could figure out what was wrong and why he didn't want to get on the bus.  She said it was just after spring break.  But, nothing she couldn't handle.  So, when he had trouble again.  I emailed her.  Josh told me that he was afraid of social studies which is what he said last year and this year.  But, the teacher said he was doing fine academically and it was behavior issues.
Only God can tell us what is really going on.

I have been struggling with him getting on the bus since spring break.  Could it be his sister is right and he is feeling the teachers stress over tcaps.  She is gifted and feeling the stress, but, she can tell us.  Even teachers who don't assign homework are assigning homework.  He keeps saying the work is harder.

I am so ready for this school year to be over.  It has been rough on both my children.  Dont even get me started on my dislike of common core,  Only five weeks left.

Saturday, March 1, 2014

Bad Transtion and Rough school year

I told his i.e.p. team in March of fifth grade that he was not ready for middle school. There transition consisted of only a five minute tour of the new school.  I said, "He is not ready."  They sent him on his way to middle school because he is so smart and no child left behind ( a stupid law).  Sometimes children just aren't ready to move on socially or emotionally.
In August, our son who has multiple disabilities, but, is very bright had a horrible middle school experience.  He was refusing to go into the school.  He was so stressed out that he was literally making himself sick.  Nobody would help me all saying he was being defiant and needed to go to juvy.  I knew something was not right.  But, I did not know what.  The school, the autism team, and all parties involved refused to help me and him. They got mad at me because he wasn't doing well.
They bullied me into a meeting where they tried to say he was delinquent for missing so much school.  I had doctor notes.  He didn't not understand what they were saying.  Telling me doctor notes weren't good enough.  I tried explaining he had been really sick.  He gets sick a lot despite his o.c.d and constant washing of his hands.  And making us was our hands.
We called for an emergency i.e.p.  They switched him to a new school after much headache and going all the way up the chain in the board (which says the school system doesn't care). They decided to switch his schools and send him to the Why we try program.  A behavior program that he needed a long time ago.  This was after three months of struggle.
 It would be a few months later, that, I ran into an acquaintance whose granddaughter went to the same school before his transition to the new school.  She told me her granddaughter said, "he was getting lost all the time.  The autism team couldn't figure that out?  Simple solution would of been to give him the aid he needed, but, they are to cheap do the right thing.
I no longer have faith in our school system.  It has been an uphill battle ever since he started Kindergarten.  And the higher the grade the bigger the battle is.  Is it wrong to want what is best for my child?  No.  God created us all unique.  We have a new i.e.p. Tuesday and no I am not looking forward to meeting These people again.  I no longer trust them to do the right thing.
I will not sign anything this time.  I tried to worn them that middle school would not be right for him.  He doesn't transition well.  But, no they wouldn't listen to me.  I'm just his parent I don't know anything.
He is doing well now.  He has an aid thaat goes to every class with him and helps him.  It was all he needed.  While, I know something isnt right again because he is pretending to be sick, again.  /But, I do not know what is bothering him or what has changed.  Or if he is getting bullied by a teacher, a principal, or the students.

It is the beginning of 2013.  We have been through quite a bit since Joshua started Kindergarten.  He is now in the fifth grade without an aid.  So, lets do a recap.

At the age of four he had a lisp and we sought the help of a speech therapist at the school.  She told us he would grow out of it and there was no need for preschool program.  I knew something was wrong.

We signed Joshua up for Kindergarten at a local charter school, when he turned five.  His sister was in this school at the time.  It was the only year around school in our county at the time.

He was kicked out of that school on the second day of phase in day.  So, I signed him up for Kindergarten at our zoned school.  The same speech therapist tested him again.  This time her diagnosis was very different.  He had extreme pragmatic delays often found in children with autism.

So, our next step was to get a diagnosis so we could write an I. E. P.  So, after having the tests done by the school psychologist, we took her finding to a doctor.  He was diagnosed with ppd-nos and 18 p minus a rare chromosome disorder.
So, we started an I. E. P.  but any time Josh had trouble with school I was called to pick him up.  I felt he wasn't in school long enough to benefit from it.  He was once again being deprived of the education he craved and deserved.  I was frustrated and exhausted.  I thought there was no hope.

Then, the economy started getting bad.  Long story short we lost our house and had to move.  Our new place was in a different zone.  On our way out of school on the last day the principal chased us down and asked me if we were moving three times.  He obviously didn't want to deal with my son.

We moved into a local apartment complex and started a new school with the same aid he had last year.  He did better, but, still had behavior issues.  We went to another doctor as the first had retired.  Joshua was diagnosed with ADHD and OCD and ODD (oppositional defiance disorder).  We started medicine.  We tried just about everything and nothing seemed to work.  Finally, we found celexa which seemed to help.