Tired of fighting, and I have only just begun!

[Ohio]

As some of you know, I have decided to hold off on school testing. My difficult child recently had a speech evaluation, and we found out that he has some mild developmental delays. Now that I have proof of the delays, I contacted my difficult child's teacher. The teacher told me to contact the speech therapist, and I did. I asked her if he qualifies for school services, and she said not unless it's affecting his school performance. Now how do I prove that?

I feel guilty, because I don't have the energy to fight with these people; plus, I don't have much time, since I work full-time. As it is, we are looking at speech therapy once per week, and possibly occupational therapy. I mean there is only so much time that I can get off from work. I guess I just don't really want to bother with it. I know that they don't have to test him, unless they all agree that it's affecting his school performance. I am just so frustrated, and I feel like .

Plus, I am having major issues with my difficult child's daycare. He has a new teacher, who is seriously a poo poo head. I told him that my difficult child may not always communicate his needs, like he won't go up to the teacher and tell him that he wet himself. The teacher said well all the other kids do, and I am like he's not like other kids. I explained to him that we suspect that he has AS, and he had no clue what AS is. I told him about the large motor issues, social problems, strange hand postures, tics, etc. He goes on to tell me that it's normal child behavior. Plus, he had the nerve to say that he has only seen my child have a tantrum with me, like I caused it. It's like they seriously think I am a head job. Even when I gave one of the administrators the "official speech evaluation results" I was told that they didn't think that he had any problems. What do I have to do to have these people take me seriously?

 

[nvts]

Hi! First of all, I'm sorry, but how old is your son? What leads you to believe that he might have Aspergers? When you get a chance, go into "My Stuff" and fill in the profile, it helps those of us with horrendous memories understand the family dynamic, ages, diagnosis, medications, sibs, etc. :hammer:

Depending on his age, you can request Early Intervention evaluations that can result in Occupational Therapist (OT) and Speech be done on the daycare's time or even on the weekend or at night at your home. Or you can have the school testing done to have those services in a pre-k or k setting. I know what it's like to run all over the place trying to get everything done + a full time job! :smile:

Have you had a neuropsychologist done? These are pretty intensive tests that can better target what disabilities are there. You usually get them done at a Children's or Teaching Hospitals.

Trust me - don't fight battles that don't need to be fought. Once you have all of the information, depending on the disabilities, they <u>have</u> to work with you.

Beth

PS: there are a lot of words that are censored on the board. While it might be a term that you find inoffensive, others could be offended by it. Better safe than sorry when it comes to peoples various sensitivities!

 

[BusynMember]

Aspergers kids don't usually have speech delays. That's more Pervasive Developmental Disorder (PDD)-not otherwise specified, but it's still on the spectrum. While the wait (the long wait is worth it in my opinion), make sure he gets services. I'd consider putting him into an Early Childhood program for "at risk" children. I think that would help him a lot, it did my son.

 

[4sumrzn]

I noticed you are from Columbus. Have you considered getting a referral for Cincinnati Children's Hospital? Possibly the Kelly O'Leary Center for Autism Spectrum Disorders. That's where we have been waiting to get in to. I've heard great things. Just an idea. My thoughts are with you.

 

[flutterbee]

Did you try to contact the neuropsychologist that I gave you the number for? I was very happy with her and feel very confident she would be able to give you some answers.

Have you checked with your local MRDD for guidance?

 

[tiredmommy]

School districts are charged with the responsibility of finding children that need intervention from age 3 up. You need to dig deeper with the speech issues, in my opinion, chances are he was screened for articulation but not for any receptive speech problems. You need to send a certified letter to the Special Education director of your school district requesting a full & complete evaluation based on the presence of difficult child's developmental delays. You want this done now even though he may not be struggling greatly because you will have a baseline to compare to should he begin to struggle academically in the future. Let's see if I can remember everything Duckie was tested for...
Observed in preschool setting (socialization)
Psychological Exam (with input from parents & preschool teachers)
audiology exam
fine motor
gross motor
basic academic skills (identifying shapes, colors, etc)
There may have been others that I can't remember right now.
Her testing was done at age 4. While her psychological exam placed her in the clinical range (we went to a private therapist for behavior modification), her other tests placed her within normal limits. She was in the 23rd percentile for fine motor skills, but needed to be in the 17th to qualify for services from the school district. The good side of having had this testing done is that if she falls below her baseline established at age 4, I have a pretty good shot of arguing educational impact in the future.

 

[tired Cheryl]

Hang in there! We waited almost 6 months for our neuropsychology evaluation and that was with a referral from my son's neurologist at the same hospital! I just kept calling and telling them that I couldn't take it much longer. I think that my son's neuro got tired of my "sqeaky wheel" or we probably would've waited a year too.

BUT...It is worth the time and effort. These evaluations are our only hope to getting a diagnosis, medications, therapy, educational assistance, etc., that will make a difference in our kid's lives.

I know how tiring all of this can be and really feel for you.

Which of us really has time for yet another full-time career of dealing with doctors, preschools and school districts? Especially, since our difficult children take so much more time and demands that do PCs.

But, we have to dig deeper within ourselves and keep going and pushing. This is a great forum for support and venting not to mention excellent advice and info.

I hope that you gain some strength here. We care and understand.

:flower:

Cheryl

 

[svengandhi]

Your son definitely seems to have some Aspie signs, but there is other stuff that doesn't seem to fit in. My Aspie son never smeared feces or had bowel issues, he has bedwetting issues even at 17, but those are due to his PANDAS. Most Aspie kids I know (and I know quite a few because my son attends a school which specializes in it) have not ever threatened to kill or harm themselves or others. I would suggest that you look into a good neuropsychologist evaluation as you may have a few things going on here.

The Thomas the Tank engine obsession as a young child is one of the hallmarks of Aspie in my son's age group. We have the complete set from when my son was a toddler and was obsessed. None of his 3 younger brothers ever played with the toys beyond the age of 3; my son played with them daily until age 8. My son did the Star Wars thing as well, but he moved on quickly to a Titanic phase (could recite the list of the survivors alphabetically) and has now seemed to be into WWII history for the last 5 years.

The sports thing is not necessarily an Aspie function either. My Aspie played baseball (badly) from pre-K through grade 6, he did soccer, ice hockey, basketball and football for short periods of time as well. My younger sons (who are 13, 11 and 8) have almost NO interest in sports; only the 11 year old actually does any sports at all. None of them is Aspie, the 13 is ODD/anxiety, the 11 is easy child but dyslexic and the 8 year old is just reading delayed. The poor coordination which my son did have was found in his case to be due to a difficulty in proprioception, which is how one sees oneself in the large picture. My son could throw the ball if he had it in his hand but he could not run after the ball and catch it because he did not see himself in his mind's eye properly as related to where he saw the ball and where the ball actually was. He could bat ok because he was stationary. The difficulty was when both he and the ball were in motion at the same time.

I would seriously seek out a good neuropsychologist evaluation, read Tony Atwood's book "Apserger Syndrome" It's my bible because I finally saw that my son's issues fit in there. In my case, I do have a caveat which is that we believe that his Aspieness is actually neuro damage from lead poisoning but Aspie is the closest I have come to categorizing him and the therapies for Aspie are the ones that have worked best with him.

 

[flutterbee]

I did a search and it looks like she moved her office. I've sent you a PM with her number and address.

 

[susiestar]

Hi! First off, welcome and I am so sorry your son is having problems.

If you have a chance to get into the Children's hospital in Cinci it is truly amazing, more than even what we experienced there 10 years ago.

I am not sure why a neuropsychologist would only see you in cases of injury or trauma. I do think a good neurologist exam is in order to rule out many problems. It surprises me every day with the different behaviors that are cause by neurological problems, not just by psychological or psychiatric problems.

It is a good idea to look up the Parent Report in the archives (general section, I think) and work on one. It will help you organize everything you see and experience with your child, as well as all the info you get from various specialists.

As for MRDD resources, being hig-functioning doesn't mean you don't need them. They can be very helpful.

Hugs,

Susie

 

[My3girls&me]

Hi Ohio.

I am from the Cincinnati area and was interested in your post. I have a 4YO daughter that is showing AS and ODD symptoms. I have also been referred to Cincinnati Children's and have high hopes. I wanted to comment on your son's daycare. When I started to first really have issues with my daughter she was going to a daycare that was so completely non-supportive. I also got the "well none of the other kids seem to have trouble controlling themselves" speech. I was so frustrated and got to the point where I was having to leave work DAILY to go and pick her up because they would not even deal with her. There is a number is Cincy that you can call that can tell you all about the schools in your area as well as daycares and early learning centers. I called and the lady mentioned to me to maybe check into Montessori type learning. I put her into a early learning center in my town that teaches public school curriculum coupled with montessori ideals. It is more expensive than your average daycare but it is so wonderful! I must say that my daughter's teacher is amazing and a little more understanding and patient than most, but the Montessori style of learning has been such a lifesaver to us. Maybe you could check into it in your town. In my daughter's classroom, social interaction is taught along the same lines as math or reading -- they are given the same priority. They focus on emotions and the golden rule of doing to others what you would have done to you. They emphasize self control and believe in the concept of prevention (i.e - my daughter's teacher will ask another teacher to fill in and stop the world to take EK for a walk BEFORE she goes into full meltdown mode). Like I said, I am convinced my daughter's teacher is a direct send from God, but I think the style itself has really helped EK thrive. It has been 3 weeks since she has been in the principal's office - and even that day they didn't even call me, just handled it on their own. The school also really focuses on independence and responsibility. This has helped tremendously with EK's tendency to blame every other possible person for everything. She has started to realize what actions and consequences are. I know everyone has their opinion, but maybe this is something that you could look into. I know with my daughter, I was so fearful that by the time she got into public school she would be labeled a bad kid and not get the attention and education she deserves. I truly believe her new school has (and still is) teaching her the tools she will need to better help herself when she gets in first grade next year.