How much more?

[LittlebitsMommy]

My daddy always told me God will never put more on you than you can handle. Well God my shoulders and getting real heavy and I dont feel to strong right now. I pray everyday for God to give me the strength that I need to make it through everything. I also ask him to guide me in the direction that I need to go in to help Kota. It seems like everyday something new is added to whats going on.

The ones that have read my other post know that the last few months have been really hard. Its been a really horrible roller coaster from hell. And it just seems to keep getting worse. My heart is breaking for Kota. He is my world and I HATE he is going through all this and I cant do **** about it.

I called the GI today to see if labs were back from Wednesday. The ones done on Monday Kotas liver count was high. Nurse calls me back and says part of the results are back but the doctor wont be in to read them today. She says I cant really tell you what they say. All I can say is they still arent normal but they are down a little from Monday.

A friend called this morning to check on Ko. She asked if he felt like us going to lunch. We havent seen her in a while and Ko loves her to death. I always say she is his second mommy lol. So we went to lunch. While we are eatting my phone rings. I know its a number from the hospital so I answer it. Its was a social worker from the Neuro department at the hospital. She said the Neuropsychologist that had done Kotas evaluation a few weeks ago contacted her wanting her to give us a few names of counselors if Kota decided he wanted to talk to one. She then told me that with Kotas IQ scores he is considered to be mentally retarded. She said that he would quailfy for certain services through the MHMR office. She said I needed to apply for respite care this way someone could come in and help me with him if I needed a break. Uh I dont need a break. Then she said you need to go ahead and fill papers out for this other program that there is a 10 year waiting list. Its so medicaid will take care of the bill if he should ever have to be institutionalized because you are unable to care for him. I thought I was going to start crying or throw up at the table. This is my caring and full of love little boy that I will do anything for and he is almost being talk about like he is an animal that I will get tired of taking care of at some point. If he needs me to take care of him forever until I die thats that I will do. I have said nothing to Ko about what she said he already worries about way to much. I am just in complete shock over this yes he has trouble reading but to say at some point that he may need to be institutionalized makes me sick. She emailed me info and said that we could meet on the 31st and talk when he has his Neuro appointment.

I dont even know what to do. I mean this has taken me by such a surprise. I knew for years that he had learning problems and tried to tell people that never listened. But he does everything that a 12 year old can do othe rthan read well. He dresses himself and does all his personal hygene. He does chores and can follow a list of instructions. Plays video games that I could never begin to play. Is the biggest dare devil ever. Sorry I am just rambling. Thanks for listening to me once again.

 

[DustyKat]

Hey LbM,

I am not a religious person hun but if that is what helps you to get through these dark days then you grab onto with both hands and you don't let go. :hug:

I don't know what to say about your boys IQ Test except that you know Ko better than anyone. An IQ Test is snap shot in time and that is all and in view of all Ko has been going through I wouldn't have thought he was in a fit state to be having IQ testing done. Plus, if he has reading difficulties as you have indicated then I would take those results with a grain of salt. Find out what test he had done and demand a copy of the report. A social worker is not a psychologist so I don't know why she is even discussing his IQ Test with you, that is a talk you should be having with whoever conducted the test.

How long did this IQ Test take?

Hang in there hun, you are doing just fine. I know it is easier said than done but try not to let what this woman said get to you. You know what is right with your boy and what isn't so don't have them doubting yourself.

Thinking of you, :heart:
Dusty. xxxxxxxx

 

[polly13]

Littlebits Mommy I am so sorry that you and your lovely boy Kota are going through this. I dont know what to say about the IQ test results, but if Kota has some trouble reading maybe the test wasn't suitable for him, you know your boy best and you know if he is able to function properly from day to day. Has he been assessed by an Educational Pyschologist, these are professionals who would be in a position to identify exactly what his learning needs and what supports he requires are. I dont know what your health system is like in the US but over here in Ireland the educational pyshcologist route would be taken in the first instance with any child experiencing learning difficulties. Big hugs to you and Kota.

 

[Tesscorm]

Marcia, my heart goes out to you!!! I do not believe for a moment that one test can determine Kota's abilities and, really, I know you don't either! You know what he is capable of, don't let anyone cause you to doubt yourself!!

When my daughter was in grade 6, I wasa concerned abt her marks (especially math), my concern was both her 'way' of learning (not ability!) And the teacher's ability to teach. During the meeting, the principal said that perhaps I needed to accept that some people are just going to be 'C or D' students! I was floored - cud I be wrong abt her abilities, etc. I was NOT going to accept neither limitations nor rigid expectations at such a young age! I hired tutors, helped her all I cud, etc. She just finished her first year of university and is taking Finance! Looking back, I think it was the principal who had the 'D' mentality!

:Karl:

 

[Twiggy930]

Hey LBM.

That phone conversation you had sounds HORRIFIC! What a thing to talk to you about over the phone!!! I am in shock!

I would definitely question how much and what sort of testing they have done. Both my kids have learning disabilities (dyslexia) and both were assessed by a psychologist that specialized in doing educational assessments (here it is called a psych-ed assessment). The psych-ed assessments that my kids had took 8 hours to complete. This was done in 4 seperate 2 hour sessions. It is very important that they test for his IQ in a way that doesn't require him to read, just because someone can't read doesn't mean they aren't smart. I would definitely request to talk to the psychologist who did the testing directly. The social worker doesn't have the same expertise as the psychologist.

In the end it really doesn't matter what your IQ is, what matters is what you do with it! I've known loads of really smart people who have done NOTHING with their apparently high IQ. No matter what his IQ is what is important is to find ways to teach him that work for HIM. I would, however, look in to what other services they are saying your son now qualifies for. There may be something useful there in terms of education supports and services.

Try to take all of their assessments with a grain of salt. You know your son best and none of their testing changes who he is. Just use their tests to guide how you help him with schooling and learning in general.

:hang:

 

[Tesscorm]

Excellent post, Twiggy.

Marcia, Twiggy makes avery good point in using what the tests tell you to guide you in how to help him and do take advantage of what they offer you. There are so many people who learn differently (my daughter included), they need extra help not because of their abilities but because the educational systems are developed based on how the majority of the population learns but, I believe, most not in the 'majority' are not 'disabled' just different.

 

[Sascot]

So sorry to hear all that you are going through. It is shocking that she would tell you all that over the telephone - although maybe it is a good thing that your poor boy didn't hear what she said!
I would also agree not to take the tests too seriously. If it was a standard test, maybe the layout and questions were just not suited for Kota. With everything he has been going through lately, he might have just been having an off day or not been feeling great which wouldn't help his concentration. Definately worth questioning it further! You know your child best.
You are a wonderful mother who is going through so much stress to help your child. Thinking of you!

 

[Clash]

LBM,
I'm also floored this was related to you over the phone. I wouldn't take any tests reaults given under less than normal conditions a lot of weight. As a small child, my nephew was given several labels, one similar to your sons. A nurse at the local clinic took an interest in his results, asked around and sent him to an ENT turns out he had severely infected ears resulting from chronic fluid build up. The Dr said his pain levels were so high that noone realized he was suffering. He had tubes put in, adenoids, and tonsils removed. All testing after that he scored in the highest percentile for his age. You know your sons limitations and his abilities better than any test. I would request testing at a time when his physical illness might not play as much a role so they van netter determine what help he does need for his reading issues. Hang in there, you know your son best!!

 

[crohnsinct]

Amen sisters! Learning disability is a label of the past..they do call it learning differences now but I continue to use disabilty for the lay folks so they understand what I am actually talking about.

I have been in the LD world since my youngest was 3 (now 8 and reading on grade level thank-you but it is a daily struggle) and I was told she would never really attain much and was severely limited. Took her to a neuro psych and 2 to 3 months later found out she has a genius IQ and we just had to figure out how to tap into it (that's if you believe IQ tests which I really don't but and this only made me more frustrated).

Interestingly there is much research about changing the way we teach all kids. If they use the LD methods of teaching reading all kids succeed even the LD kids and districts that have adopted these methods have dramatically reduced their special ed budgets. Unfortunately few of us live in those districts and it is up to you to advocate for your child...sound familiar?

 

[izzi'smom]

^^^ditto!
Especially the fact that this conversation happened over the phone. Completely outrageous.

I am so sorry for all that you are going through right now, and am wishing you strength to deal with the heavy burden you are feeling. :ghug:

 

[LittlebitsMommy]

Thanks everyone.I could not believe that she called and told me all this over the phone. So much for a nice lunch with Ko and friend. After that I couldnt eat and wasnt sure if I was mad, sad or wanting to throw up.

You are all right I do know Kota better than anyone else. I know he can do anything and understands anything just has trouble with his reading. And when it comes to his reading he has always struggled with it. Thought maybe it was his eyes but the glasses havent made that much of a difference.

He knows so many words and can tell me what they are as long as I call the letters out to him but when he has to look at them he struggles with making the word. We finished a book yesterday I called every word out to him by me spelling the word to him. Yes it takes a long time so we do take breaks but I will do whatever it takes to help him. Every so many pages we would stop and I would ask him so what is the story about so far and he could tell me. Then at the end of the book I asked questions and he could almost tell me word for word what he had read. But if he tries and reads it himself by looking at the words he cant remember anything he has just read.

I am going to meet with the social worker and see what she has to say. Becca is going to go with me so she can walk around or sit with Ko after he is Neuro because I dont want himin there when I meet with social worker. He already worries enough.

Thanks once again for listening to be and being here for me

 

[Johnnysmom]

I am a social worker an that woman is a terrible social worker!! I am appalled. No one should ever predetermine what your sweet boys future is. Kids development varies so much and he has a lot of growing and changing yet to do. Get more information about how your son learns and what you can do to help him but you know your son best. About the liver enzymes, my son had the same issue. They cut his 6 mp dose in half and added allopurinol and he is fine now. Hang in there,keep fighting. (((((Hugs)))))

 

[Dearie]

So sorry to hear that you and your son are going through so much right now. Keep praying and stay hopeful that things will soon get better. Praying God sends blessings your way.

 

[Catherine]

My middle daughter has asperger. She has had a educational IQ test. From how the IQ test was broken down for me you can see she strengths and weakness were.

On some parts of the IQ test she is on the 93% level (this means only 7% percent of the population test higher than her. On other hard she is on the 25% in other areas (75% test higher).

She had questions which she got wrong according in the test about when she explained her answer to the tester the tester could not fault she reasoning.

In her case the dx has been the best thing that has happened in her schooling, she marks have improved and she is happier at school.

Good luck, ask lots of questions. Find out how the test was conducted.