Parents who won't accept testing or help for their child. GAH!

[Becky2005]

but your child is sitting in a 4th grade class reading on a pre-k level and that isn't embarassing for them?

Exactly & without the label (or IEP which would require the label), the teacher isn't going to know and is going to ask Billy over here to read the paragraph of the novel they are reading.

Talk about setting a kid up to get ridiculed OR the kid just absolutely refusing to do it -- getting the unofficial label of being a difficult student. I think I would rather take a bad behavior slip than let all the other kids know I couldn't read something they found simple.

 

[NotUrsula]

I've had the opposite problem. We FINALLY got DS properly diagnosed this year, at the age of 12, but I had to pursue it myself during the summer.

He has always totally lacked empathy, but since he was our first child, we thought at first that it was a matter of growing into it. His kindergarten teacher had some concerns, but the principal failed to agree with her, and at the time we thought it was just his normal shyness at being in a new environment, and he did adapt fairly well after a while. However ...

He has not been invited to a birthday party since 1st grade, never called on the phone by any classmate, and never played with any classmate outside of school, even though they live in our neighborhood. He was in Scouts, but hated it because he was constantly harassed by the other boys. Kids interacted with him during school hours, but always made excuses to decline invitations for other activities. I knew something was up, but DH insisted that there was nothing really wrong, that he was just a bit quirky, and that when he got into a larger circle of aquaintances, that things would get better, but of course, they never did.

When he hit middle school last year, his grades started to plummet, because he just couldn't deal with the necessary executive function involved in having a homeroom and remembering to bring books and materials to the correct class. DH finally agreed with me that something must be wrong.

We had him evaluated for Aspergers and he does have it (which I could have told them. He's had obsessions since age 1, has no empathy and never makes eye contact.), but the real surprise was his academic evaluation. He has an IQ of 130, but apparently has major issues with reading comprehension -- he reads beautifully, at a college level, but only absorbs about 40%, according to the tests. His oral comprehension rate, OTOH, is over 98%. This year we are getting/having everything recorded, so that he can listen as he reads.

All this time, the teachers kept telling me that the problem was lack of self-discipline; that if he would only pay attention and apply himself, he would do better. (His grades have always been average, not stellar, because he always tended to misunderstand the directions and lose points for it. Also, his permanship is totally illegible unless he goes REALLY slowly, so he was leaving papers half-done.)

What we're finding is that the Asperger's diagnosis doesn't faze him, and he doesn't mind kids knowing about it. The learning disability, however, is another matter. THAT he finds very embarassing, and he's very resistant to having anyone else know about the special provisions he is getting in the classroom because of it.

 

[daughtersrus]

I can sympathize with you. I'm a parent of a special needs student as well as a parent of two DD's majoring in SpEd. A few years ago, I was watching a little boy in my home. I had never seen a young child with autism but I had been around children a little older than him with a variety of needs.

I spoke to his mom telling her what he was doing during the day. He would "flap" his arms, walk in circles around my kitchen island, walk up and down my hallway with his arms out, obsessed with shapes(what 2yo knows the difference between a diamond and a triangle or a octagon and a hexagon). The boy could not respond to his name, respond to a question...

The parents were in total denial. Their response was "Oh, he's just playing ring around the rosy" to explain him walking in circles around the island or "he's pretending to be an airplane" to his walking up and down the hall with his arms out. When I told them that he doesn't respond to his name or follow simple directions, I was told that they've address that with their GP (he didn't go to a pediatrician) and he said that it was normal.

They did agree to EI testing because he wasn't talking. Once they told the parents that he has SID, the parents pulled him from all services. They denied that he was "different".

Fast forward a few years and all of a sudden "he is a very sick boy" and they are trying everything to cure him. They've changed his diet to GFCF and have been giving him doses of more things than I can remember for chelation. They've talked about buying a H-BOT chamber for their basement. They still refused to send him to school or get any services because she said "they're all a bunch of quacks" Instead, she was paying people to come to her house and do "Son Rise" with him. He is now 7 and in 1st grade so she either has to send him to school or home school him. Today I noticed a bus at their house so I'm guessing that he's in school, at least for now.

Now, my oldest DD is student teaching in a BD class. She has a student that is very destructive to the classroom and himself. She said that it's heartbreaking because last year when he was on his medication, he was doing so well. He's very gifted accademically so they were going to test him for a gifted program. Instead, mom decided to take him off of his medication! The boy (2nd grade) would tell DD that he knows that he's being bad but that he just can't help it.

So far this year, he's been in the time-out room at least once a day. Last week it was so bad that they had to call in an outside service that got mom to agree to have some evals done. He's been in a in-patient facility since. They're not sure if/when he will be back.

I told DD to get used to it because sadly, I think that she will see a lot of situations like this.

 

[Ember]

I told DD to get used to it because sadly, I think that she will see a lot of situations like this.

It's only my third year teaching, so I guess I had better get used to it as well... It's not a perfect world, and there are less that perfect parents out there and I guess there are things that I will just never be able to change.

 

[Pikester]

Those parents sound a lot like my sister. As my nephew was getting older I felt that something was off. I would see those commercials on TV about the signs of Autism and he had quite a few of them. He is my sister's second child so it's not like she could think that it was normal. He didn't talk much and he would not make eye contact with you. You could say hello to him and he would look right past you like you were not even there. He was in his own world. I tried to bring it up but in such a way that it wouldn't offend her. A very hard thing to do! She would just say that he would out grow ot of it. Made me so mad! Finally I was able to get her to have him tested. Our district puts an ad in the paper every year looking for children that parents feel need to be tested before they start school. I gave her the ad and she had it done. My nephew ended up having to spend two years in Kindergarten but is now in 5th grade. He has an IEP and gets help. I once asked if he had a specific diagnosis, like Autism, but my sister said no. Not sure what his "Label" is but I'm just happy he is getting help.

On the other side of things is my DS8. By the time he was 1 I was getting worried that something was wrong with his speech. His Dr and I kept an eye on it and by the time he turned 2 he needed to have a hearing test. Well, he had one, it got sent to the Dr (I assumed) and nothing was ever done. I really should have brought my DH with me for that because I barely remember the conversation with the Audiologist but I think she mentioned something about an ENT and that his hearing wasn't normal. I guess I figured the DR would read the report and I don't know what, but something. Because his speech wasn't improving he was tested for that and he qualified through an early intervention program to get speech therapy at our home. He had speech through this program for about a year and when he turned 3 he was transfered to the Preschool Program in our school district. They paid for him to attend a local preschool and a speech therapist would come so many times a week to work with him and a few other students that had also been placed there. During his time at this school, they gave him a hearing test which he passed. The next year he had a hearing test and failed. Went to his Dr who scheduled another hearing test and we ended up getting the same results as he had gotten when he was 2(by this time he is 4). I so regret not doing something about this. I either misunderstood the situation or was in denial. I guess I figured at some point during those 2 years the Dr would have mentioned the results during his yearly checkup. I hope and pray that him missing out on having tubes in his ears for that two year period did not badly effect him. He continues to have speech and his hearing is checked regularly. I don't think he needs hearing aids but who knows what the future holds.

I give to all parents and teachers who work hard to help children with special needs. It's a pretty thankless job and many people give you the harry eyeball when the children are having a hard day. Not to mention the idiots in charge who only make the kids IEPs but never have to worry about implementing them. That's left to the teacher and the para educators.

 

[ozarkmom]

My sil the queen of denial. Her son is now 22 and I have a son the same age. It's hard to explain his problems but if your around him it doesn't take long to realize he's different. I babysat him when the boys were four. He didn't talk at that time. They said Einstein didn't speak at four. He failed kindergarten. Our family has several teachers and everyone was talking about it but sil and husband didn't want to hear it. When my son tried to play something like Ghostbusters where you would be a character nephew just stood there with a blank look. He was 5 or 6 before he was potty trained. They moved to another state for awhile. She claimed he did well out there other sil went to visit and said they live in an isolated area with maybe 50 kids in the whole school. They moved back and he never was able to socialize with other kids not even his cousins. It was like he just didn't know how. He spends family gatherings sitting by his mom in sometimes repeating what she just said. In the eight grade she enrolled him in a small Christian school. She thought kids would treat him better. Her sister told her he needed to be where they could help him she didn't want to hear it. That school wouldn't take him the following year and she told me he couldn't read or do simple math so she was going to home school him. So now he's 22 and I can't see much difference in when he was 12. I don't know what will happen when his parents are gone. Not that it matters but his real mother is my husbands neice. She hid the pregnancy and had him 2 months early at home. The "mother" that he knows is really his grandmother.

 

[hoosll]

Those parents sound a lot like my sister. As my nephew was getting older I felt that something was off. I would see those commercials on TV about the signs of Autism and he had quite a few of them. He is my sister's second child so it's not like she could think that it was normal. He didn't talk much and he would not make eye contact with you. You could say hello to him and he would look right past you like you were not even there. He was in his own world. I tried to bring it up but in such a way that it wouldn't offend her. A very hard thing to do! She would just say that he would out grow ot of it. Made me so mad! Finally I was able to get her to have him tested. Our district puts an ad in the paper every year looking for children that parents feel need to be tested before they start school. I gave her the ad and she had it done. My nephew ended up having to spend two years in Kindergarten but is now in 5th grade. He has an IEP and gets help. I once asked if he had a specific diagnosis, like Autism, but my sister said no. Not sure what his "Label" is but I'm just happy he is getting help.

On the other side of things is my DS8. By the time he was 1 I was getting worried that something was wrong with his speech. His Dr and I kept an eye on it and by the time he turned 2 he needed to have a hearing test. Well, he had one, it got sent to the Dr (I assumed) and nothing was ever done. I really should have brought my DH with me for that because I barely remember the conversation with the Audiologist but I think she mentioned something about an ENT and that his hearing wasn't normal. I guess I figured the DR would read the report and I don't know what, but something. Because his speech wasn't improving he was tested for that and he qualified through an early intervention program to get speech therapy at our home. He had speech through this program for about a year and when he turned 3 he was transfered to the Preschool Program in our school district. They paid for him to attend a local preschool and a speech therapist would come so many times a week to work with him and a few other students that had also been placed there. During his time at this school, they gave him a hearing test which he passed. The next year he had a hearing test and failed. Went to his Dr who scheduled another hearing test and we ended up getting the same results as he had gotten when he was 2(by this time he is 4). I so regret not doing something about this. I either misunderstood the situation or was in denial. I guess I figured at some point during those 2 years the Dr would have mentioned the results during his yearly checkup. I hope and pray that him missing out on having tubes in his ears for that two year period did not badly effect him. He continues to have speech and his hearing is checked regularly. I don't think he needs hearing aids but who knows what the future holds.

I give to all parents and teachers who work hard to help children with special needs. It's a pretty thankless job and many people give you the harry eyeball when the children are having a hard day. Not to mention the idiots in charge who only make the kids IEPs but never have to worry about implementing them. That's left to the teacher and the para educators.

This sound like my DD who was deaf due to fluid in her ears for over a year from 9 - 24 months when the ENT put tubes in her ears after months of antibiotics from the pediatrician, we finally had to insist on seeing an ENT because she was not talking clearly. The result was speech therapy and an IEP because she was a visual learner ...

If you have a child who is hearing deprived for a time, they will probably compensate by using their other senses. My DD had a fantastic visual memory. When she went to school we made sure that she was placed in the front row so that she could watch the teacher without being distracted by having other students between her and the teacher - it is key that these kids not be visually distracted. We also worked with the teacher to make lots of notes on the chalkboard or hand out written pages with key notes. The hard part was for us to learn that she was not going to get it if we tried to explain things to her orally, it always worked better with props or notes to help her to find and remember the key elements.

 

[Lisa loves Pooh]

I was upset when I pursued an ADHD diagnosis for my eldest daughter. She isn't even in public school, but she was having issues in pretty much all of her activities. (someone told me it was b/c she wasn't in public school which is a slap in the face!)

I was afraid the label was my failure. It isn't--but at the time that is what I was afraid of.

I didn't want the label b/c I didn't want people to think I was looking for an excuse for how my daughter was.

I know several teachers and while it isn't like they sit there and gossip all day about kids, they have come across a few in their tenure whose parents just do not get it and refuse labels. (one has a child where the parent insists on inclusion and it is sadly to that child's extreme detriment.)

Who knows what truly motivates children.


But if that child is harming kids, the threat of expulsion from the principal is spot on. And at least in your school's favor, they can't blame an illness he doesn't have for his behavior and sue the school for it.

I have a son in speech and I am labeled a nut for having him there. He is apraxic. His language has finally come in and one would think that with ST that he would be talking normal for his age and he just isn't. There is no rhyme nor reason for his consonant subsitutions. The only thing consistent is his deletion of most beginning syllables--so his ST focuses on starting the word for words that he can say and then encouraging voicing of sounds he doesn't know.

My mother had a coronary for this b/c boys talk late and how horrible I was for doing such a hasty thing as throwing him into Speech when he was 20 months old. I kid you not that she was more PO'd at my son having a 30 minute speech/play session a week at 2 than she was with me medicating my dd (which she is very adamently opposed to and feels that ADHD is "fake" and simply a parenting issue.)

So perhaps these parents refusing the labels--are concerned for backlash, I do not know. But hypochondriac seems to get thrown around so freely. KWIM?

What are the parents explanations, justifications for your student's behavior?

 

[JoiseyMom]

It's great that there are so many caring teachers on this thread. DD13 good friend is on the spectrum, but was very bright and did well academically, but she couldn't tell time. Her mother had to fight tooth and nail to get her the help she needed. She was main streamed until last year, 7th grade. Her mom had to hire a lawyer to get her dd the services our district could not provide for her. It is sad that she had to do that.

Now my DS8 has ADHD, and was in a class with an extra teacher last year. Now, the teacher was there for other kids, he really doesn't need that sort of help. He is very bright and has problems sitting still and being quiet. His teacher had no idea how to deal with him, I have no idea why she was given this group of kids. On his last report card she said DS needs to work on his behavior. If the women was standing in front of me, I swear I would have punched her in the face! I was LIVID. My DS has a neurological disorder, he CAN"T control himself!! OMG...what was she thinking!!!!

It is a new school year, new school, new child study team, and I am hopeful for a great 3 grade for DS, at least as great as 1st grade was (wow he had a teacher that was the best teacher I have ever seen in my 26 years of being a parent!!!!).

 

[daughtersrus]

I have a son in speech and I am labeled a nut for having him there.

But hypochondriac seems to get thrown around so freely. KWIM?

I understand. My DD's delays/problems are very evident but I still understand. I've been labeled a nut also for fighting for my DD's rights. My thinking is that if I fight for them, the administrators say I'm a PITA but if I didn't fight, they would think that I'm a bad parent for not caring. So, I decided long ago that since I was a pain either way, I might as well be a pain in a way that allows my DD to get the services that she needs and can hopefully improve, even if it's just a little.

BTW, I've also heard from other parents that schools are wasting money, time and space trying to help children like my DD when they should be spending the money on regular children that will get more benefit.

 

[Lisa loves Pooh]

BTW, I've also heard from other parents that schools are wasting money, time and space trying to help children like my DD when they should be spending the money on regular children that will get more benefit.

I have heard this--but schools have sort of done this for years haven't they? There's just more kids needing help now.

The way I figure it--if more money is spent on aids and specialist, it frees up the regular teachers time for the regular students instead of wasting time attempting to remediate a child who is beyond remediation.

I had a TNT coach whose constant statement was--a rising tide raises all boats. This was to encourage people that it is okay to donate to leukemia, b/c typically--the research may benefit other cancers as well. It isn't like you are saying--no to lung cancer or anything. (I am slaughtering what he means--not doing it justice!)

If you help the kids who need it--it does benefit the children who do not.

And if parents don't like it, I would just refer them to the ADA.

 

[tazdev3225]

I have 2 DGS's that I worry about. The 3 y/o did not talk. I told his pediatrician, I take my daughter so I have always been there, and she gave me the standard "some boys talk late" speech. At 2 1/2 I told her again and got the same speech. My DD means well but because the Dr. said there wasn't a problem that was what she believed. He is now 3 1/2 y/o and is in an Early Intervention program. He has some hearing loss, gets speech therapy once a week and they are dealing with his behavioral issues also. If I had been listened to earlier he might be talking better than his 2 y/o cousin.
My other DGS is 5 1/2 y/o. I have known since he was an infant that there was something off about him. He hated to be bound up. He screamed if things were to tight and would not make eye contact. As he got older he stripped out of his clothes every chance he got, and still does. He is obsessive about certain things. He knew the name of every dinosaur before he was 3. He usually doesn't answer to his own name, it's some version of spiderman or a dinosaur. He has to change his underwear every time he goes to the bathroom. I know that he falls somewhere on the spectrum. My DDIL to be had had a very hard time accepting this about him. He is going into a Special Ed kindergarten but they still won't give him a diagnosis. They think maybe it's ADD, the school that is. My DS knows that it isn't this because he was ADD and knows that my DGS is different. It has been very hard on his DF to accept it although she is coming around. When he graduated from nursery school she left in tears. My DGS lay on the floor in a fetal position covering his ears while his classmates sang their songs. It was an eye opener for her.
It is not always easy to accept that there is something different about your child. It took seeing how my DGS was in different settings for my future DIL to see the problem. Sorry for the long post but this has been painful for me as the grandmother to see my DGS's suffer and not be able to do anything.

 

[Pigeon]

I've got a nephew with Asperger's. Unfortunately, it was almost unknown when he was born. My sister for a long time refused to acknowledge there was a problem and thought he was just quirky. I'm not sure what would have happened had he been tested early because there really was almost nothing known about it then, and almost nothing for intervention.

 

[a1tinkfans]

I have a child in my class who is exhibiting classic signs of being on the autism spectrum. Without going into detail, the child is clearly in need of help. Mum and Dad have flatly refused all testing for their child and have done so for several years.

The child is starting to exhibit concerning behavior such as a physically hurting classmates. The principal is now involved and is saying the child gets tested or will be expelled as there is now a threat to the other children in the classroom.

I feel so badly for this child, it breaks my heart. It is not their fault and there is help available, the parents just won't access it. As a result, it looks like the child may be expelled. How does this help anybody?!

Just needed to get that out...

So much help put there if one asks for it.
All kids need their parents as their advocates.
Perhaps they are testing on their own? I pray so, and that it is not denial as that is so very sad for that child.
Early intervention is always best.........as far as a safety issue, that is a very touchy subject when they (school) already acknowledge a possible medical issue.......hope they have social services involved and school nurse and such...
My heart aches for all children that do not get the support and direction they need to succeed. And they CAN succeed!!!

 

[a1tinkfans]

I've got a nephew with Asperger's. Unfortunately, it was almost unknown when he was born. My sister for a long time refused to acknowledge there was a problem and thought he was just quirky. I'm not sure what would have happened had he been tested early because there really was almost nothing known about it then, and almost nothing for intervention.

Now, there is SO MUCH help, if you know where to find it. With AS, early intervention is crucial to (early and sustained) success.
It is not easy being an AS kid......being so black and white with no gray, etc etc....
social integration classes, sensory integration classes, nutrition counseling (for all those picky eaters),
oh there is so much out there and from first hand experience, it WORKS!!! It is never too late for anyone to seek additional support....even minor help can make a HUGE difference!
I wish much success to your nephew......

 

[Pigeon]

Now, there is SO MUCH help, if you know where to find it. With AS, early intervention is crucial to (early and sustained) success.
It is not easy being an AS kid......being so black and white with no gray, etc etc....
social integration classes, sensory integration classes, nutrition counseling (for all those picky eaters),
oh there is so much out there and from first hand experience, it WORKS!!! It is never too late for anyone to seek additional support....even minor help can make a HUGE difference!
I wish much success to your nephew......

They finally got a diagnosis when he was an adolescent, but only because my sister had done a ton of research and presented the info to his therapists. He was seeing a psychologist and a psychiatrist, but neither had ever heard of it. I think early intervention would have made a difference.