Frustrated...unsure of what to expect

[junethomp]

Hello All
My name is June...I have a long story in which maybe someone can give me hope in the medical community and for my son...
My son is 4 yrs old 2 months...and no words...
My obgyn at the time I had Matieus should have his license stripped and well be shot for what he practices...
He let me labor for 48 hours with a fever of 104. He let all the fluids in my amonitic sac escape during said labor ...gave us group b strep put matieus in fetal distress resulting in a lack of oxgyen and a apgar score of 4....figuring this was just bad luck first pregnancy ....I let him delivery my daughter again he screwed up...he left half the placenta in me...and then said it was an infection..a second opinion took a ultra sound did a d&c to remove the other half the placenta.
that being said my son now 4 has no words...when i expressed concern at 18 months when strep throat was recurrent, ear infections (black wax is apperantly normal in doc offices these days) I was told I was being a worry wart...
then they caused an impaction....cut his ear trying to cover their butts to try and get the impaction out...fired
second docs office said he wanted proof that I as his parent knew that he was having problems that I should prove it to him by putting it on video...fired
the school district decided that he didn't need any medical testing they knew what was wrong with him without looking at him...it was autism..fine will go with that....he got worse under them...I went from a child I could take place and do things with to a child that screamed at the sight of people and ran to his bedroom...or refused to do anything but sit on the ground and scream...fired.
now i can go places do things..have people over go to peoples houses ..house hunt
then the new doc came in ...remove the tonsils too much strep okay we remove the tonsils...I ask about his ears..their find no damage no indication of chronic ear infections...then we were admitted to the hospital...the hospital ped told me there's scaring in his ears from chronic infections...I asked the ent if there was any way he could have had strep and thats why we ended up in the hospital ...no no way...the family doc tells me its in his er records (caused they called unsure of the codes the doc used in the hosp) that he had an infection and thats why they admitted him...grrrrr fired two docs in one month...now have set up an appt with a new doc but not sure where to start and what to ask....all I know is I have a nonverbal 4 yr old who I have not done potty training with ...abc..colors..because I was told he couldn't by too many idiots...this a kid who can unlock any door operate any machine he finds...can take apart anything and put it back together..
the only bonus is now that the tonsils are gone...he is more coop...and he responds more to what I say...oh and he has started covering his ear to sounds when they are too loud...tv volume goes up...one bird to 4 birds...my daughters screaming all of sudden really really bothers him...
also confused on signs with him...my daughter who is never been sick is pick up signs left and right....plus i know signs from interpreter program that I stopped to have kids...(in laws hate sign and they hate me...at this point in time I don't care)so how many signs should I be using ...how many videos...what is too little what is too much...he defintely understands signs...my husband has picked up on the no and stop it sign other than he has no interest...oh also I have notice if I get down on his level look him in the eye and say what I have to say I get a better response than if I am standing up doing something and say it or if I have my back turned or if I am just busy doing something else..changing sister...ect....do i think he's got a hearing problem...no he hears the tv from one room and will go running for the sounds of his favorite show...I don't know what to make a big deal out of and what not to any more...I think the fact that he can't suck through a straw or blow is a bid deal ...my husband doesn't....
any advice
june

[lletiecq]

Yes, there is an issue if he cannot suck or blow through a straw. These are skills that are necessary to be able to speak. Our speech therapist actually gave us games to play with our daughter involving blowing cotton balls, blowing through a straw, and blowing bubbles to practice that skill.

It sounds like your son did have hearing problems for at least a good portion of his life, even if he does not now, due to the wax issues, ear infections, and so forth. All of this would put him behind in speech and developing language.

Can you go to the school district and insist upon a new evaluation of him? I am sure there are other people on this list who know more about dealing with school districts---we are just starting with ours. I would insist upon a full evaluation, including speech, hearing testing, and I am not even sure what else. Don't sign anything else unless you agree to it.

There are several places online with further information about IEPs and federal law regarding them. If you need some help finding something, please email me and I will try to help you.

I will say some prayers for your family.

[grojas]

I can sense your frustration. June, the only way to really know what is going on with your son is to have a complete or comprehensive evaluation. Because he's four...it is no longer part of the Early Intervention program in your school district but part of the preschool or early childhood program under special ed. You would specifically identify in which domains there are concerns or in which domains you want the child to be evaluated. It's fairly comprehensive (they will look at health, hearing, vision, social/emotional, communication status, intellectual functioning, academics, motor, etc.) From what you are describing...it sounds like he has oral motor concerns, definite language or communication concerns, sounds like non-verbal or abstract visual reasoning may be ok. Who knows...you need specialists in each domain to give you feedback so you can start to figure out the pieces of this puzzle. You will never really know how the fever, fetal distress, ear infections, etc. affected brain development you can only address how he is currently functioning and begin the process of remediation as quickly as possible. Does he go to school? Where do you live? Most school districts have early childhood screenings you can sign him up if he is not currently enrolled in a program. Just by virtue of no words and he's four will be a huge red flag to anyone in the early childhood department. Keep us posted with what you find.

[junethomp]

We live in colorado land of sucky schools and even suckier policies on the disabled...they are currently being sued for withholding federal funding that belongs to the disabled...blind, autistic, deaf, downs...ect ect..
I have gone the school route once ...they made him worse. Its taken me a year to get him back to where he is now..an issue I plan on addressing with the new doctor...
I also refuse to be brow beaten this time and intimidated and made to feel inferior by the school district. (They insisted they would withhold all until he talked milk, water, food ect and when i didn't want to play they told me he would never talk...all this without his medical history amazing) After finding out all that I am finding out (GOD I love the internet and at times hate it...but rather have teh good bad and ugly then nothing) But to answer your question no he's not in school partly because of what happenned last time partly because I didn't potty train him yet because I was told he couldn't understand and young naive me believed them then his sister came along and well now I have to figure out how to potty train them both (both are afraid of going on the toilet..but not sitting on the toilet...odd?)And unless their potty trained its hard to find a school that will take him or her.
I also plan on going in there with the backing of a doctor this time. And I have a good idea of what I want and what I am agree to compromise on and what I am not willing to compromise on...I also have a good idea of what my son is and is not capable of and what he is and is not doing.
For some reason maybe its this site maybe its age maybe its a new prespective or maybe foolishness but suddenly I feel like no matter what the outcome all will be okay.
June

[brenkachika]

He is entitled a free and appropriate education. It is the law. As far as school goes, it sounds like you need to find a good advocate. Are there any support groups in the area? Autism, cerebral palsy... any of these could get you in touch with an advocate. Does he have a psychologist or psychaiatrist? My son's psychiatrist has been our biggest advocate. He will go to bat with the school - even coming to the IEP meetings if need be. There is an excellent book that will help you navigate thru the laws and evaluations and meetings. It is called "From Emotions to Advocacy" By Pam Wright and Pete Wright, I think. That book has helped me get my now 5 year old son the services he needs. (They were going to send him to kindergarten mainstreamed with NO SKILLS TRAINER at AGE FOUR! Just because he is too smart for preschool! Well, I educated myself on the laws and on due process and I threatened due process if my son did not get what he needs, what his Dr. is saying he needs, to get along in kindergarten.) My son is now doing great. He will be repeating kindergaren. We have a great speced teacher who sees how important the skills trainer is to Christian and he will have the skills trainer next year too!
Anyway, educate yourself. The best thing you can do for your child is to be fully armed with knowlege.
It sounds like you have really been thru the wringer. I hope you can get some help and that your little boy can recover and thrive.
-Kerry

[JoeyMom]

Wow, June, that's quite the roller coaster. If you want a plan of action, here's what I would do based on this info:

1. Have the child fully and INDEPENDENTLY evaluated. Skip the school. Schools have a basic conflict of interest in evals. You need to look for a cognitive eval, an educational eval, and a medical eval. Medical evals are the easiest. You should get his hearing checked by an audiologist. You should have him looked at by a developmental pediatrician, a neurologist, a speech therapist, and an occupational therapist, at the very least. Educational evals can usually be donethrough universities with education programs, "learning centers" such as Sylvan, or you can try to find an educational testing center that specializes in special ed. If you have a local Community Board, theymight know where to locate these people. Ditto with cognitive testing- you'll need a specialist.

2. Get very familiar with special ed law. I recommend starting with Wrightslaw (http://www.wrightslaw.com/). Be prepared to spend a lot of time going through this website, it has a lot of info you'll need handy.

3. Hire an advocate. Never go to a meeting with school personnel alone.

4. Look into ABA (Applied Behavioral Analysis). It may not be exactly what you need, but the discrete trial methods can be useful when trying to teach a kid new skills. It is acually pretty simple- you tell the child in very simple language what you want, and when the child responds, you correct inappropriate responses and reward appropriate responses. You repeat this until the child consistently responds appropriately. Behavior training is very popular with autism, but the teachingstrategies behind it are what you may be interested in to reinforce learning skills.



The long and short of it is if you are about to enter the world of special education, you are going to need to be prepared to specifically ask for services, and be able to prove your child requires those services. You need to know what to ask for, and how to word the request so that the law requires that the service be provided. So you need evals to tell you what is needful, a knowledge of law to know what your rights (and your child's rights) are, and an advocate to advise you on the details and be another person in a meeting on your child's side (otherwise, you are the ONLY person in that room with your child's interests as a priority).

[junethomp]

Well thought I would give you all an update and thank you all.

1) we just switched insurances (due to job changes) yeah...better insurance and it covers autism and hearing problems both so no matter where we fall with the diagnois we are covered bad news I had to reschedule the appt ...and well he's booked for 3 months out...they promised to call if they get a cancellation.

2) I joined a sign language group on meetup.com...and there is this wonderful lady who was the head of Disability services for university of california irvine plus an interpreter plus she has a masters in pysch......well she is moving to colorado to be an advocate for the disabled ......and she is wonderful. She had a lot of helpful resources already built up for me to look at here in colorado. She's also very very angry that the school handled this the way that they did.

3) Matieus has started signing sort of...I messed up when i taught him jump...i did the sign in his hand so now he thinks you have to sign jump in another persons hands...but he has also picked up car milk and there's another one but its slipping my mind at this hour...He understands about 50 words in sign but does not seem to know how to sign them or is unwilling to Oh and he now says mom and up but not consistenlty yet. He also loves it when i take his hands and have them do the sign. We have been invited to a deaf chat where I am going to meet up with some parents and their children who are deaf....they know that he might not have a hearing problem but that he might and they are willing to accept that and help me. Which I am grateful for.

So all in short thanks to your posts which were a big help in putting my head in the right place (still haven't gotten over the guilt) and the conversation with her ....the signing time videos and me putting myself out there for my son...we are making progress.
Unfortunately I am going to be missing for a while...we are switching some stuff around to make my husband more accessible for job interviews (always looking for a job that means only one job and earning a little closer to what we were earning previously (we work manufacturing and well when everything left we lost an 80k job) and lower our costs so we are switching phone, internet, wireless stuff all up in the air for the next week...more time to focus on matieus and cleaning my house.
june