Help, How do you tell our cousin that you think her child has some problems?

[D L and K's Mom]

My DH's cousin who we see maybe once a year has a little 5 year old. The little guy had some real problems with speech and language and was given speech and lang assistance though the local BOCES program. The therapists came to her house etc. Little man is now 5 and in a Head Start type of pre-school program. The teachers and therapists all think he needs to be evaluated for learning problems and other problems. They told her they suspect he may be Autistic. Ok first they probably never should have mentioned the diagnosis of Autism before the child was evaluated. I know that was a HUGE surprise to them. I don't think anyone has ever used that word before. I am a teacher and I see many, many Autistic characteristics in this darling little one. I spoke to her mother ( our Aunt, little ones grandma) yesterday on the phone and said, YES, YES get him to a Dr who can put you in touch with the correct people and services. They don't want to. They feel the school is trying to label him and send him to a special program and not to a regular K class. I tried to explain that no matter what that is a decision to be made later (which school)...first get some evaluations done! Nope, Grandma of Little Guy says it is the Head Start program. He has problems because they are to strict....he is anxious and screeches and circles because he is nervous, he does not talk because they are mean to him, he flaps and runs and hides when he is upset because they pressure him. We see this behavior too. They also see it at home but mostly he just sits by himself. Again, we are told this is beacause he is shy and does not like to talk!! No, no , no. I have started this converstaion in the past but was pretty much told to MYOB by other family members but this time I was called so I feel I MUST put in my two cents. I am so sad for this little guy. We all knew he had problems but we all thought he was getting help for them. We now find out he really is not. I have a special needs child. I know what it is like to admit that your child has problems but .....it is so sad. I have to call cousin (MOM) today. Grandama /Aunt wants the name of our Dr. They are going to a regular Dr and I think the little guy needs a Peditrician. My Dr has 2 boys of his own who are autistic. I am going to tell them to maybe see him and start there. I think that just by bringing this up I am going to get her angry but her Mom called me to see what I thought and get the name of our Dr. HELP!!!! I know what it is like, I have been there but when he gets to school in the fall he is going to have so many problems. There is no K screening process I am told so this will continue until Sept. Should I just shut up and let the teacher in Sept talk to them? Should I just call and give my Dr's name and hope that he talks to them and hits them with some reality? I am so torn. I don't want to start a family rift even though we only see them once a year. What would you do?? HELP!!!!

 

[ducklite]

In all honesty I think I would call Child Protective Services. They aren't just there for abused kids. They are there for all kids who need any type of help and aren't getting it due to parental interference.

You don't even need to give your name.

If they are religious you couls also approach their rabbi/priest/minister/etc. about intervening.

Based on your description (especially the arm flapping) I would absolutely agree that this child is in the Autistic Spectrum. There are so many programs who could help him. He just needs to get into them.

Anne

 

[shades]

Why don't you give the aunt/grandmother the name of your doctor that has 2 austic children of his own? Even if he isn't a peds doc, he will recognize the sign and perhaps his personal expertise in autism will be enough to convince your cousin that he needs to see specialists??

I definitely would not call CPS. If the child is loved, fed, and clothed - he is far better off at this point than having CPS interfere and remove him from the home and placing him in a temporary foster home.

 

[minkydog]

I don't think I'd call CPS. the parents are misguided, but not abusive or neglectful. This child does sound like he has a lot of autistic features and sooner or later, the parents will have to face up to it. But I wouldn't start WW III in my family over something like this.

Don't push too hard, but since you were asked provide the information they are looking for. I know you are worried, but until the parents are ready to acknowlege the problem, you're barking in the wind and aggravating the heck out of them. Leave it alone. I know from whence I speak--my son is low-functioning autisitic and I can spot 'em a mile away. My sister's youngest son has had symptoms from day 1 but she refused to see it. Finally he was tested for a speech delays and found to have significant delays in other areas and now is receiving appropriate education.

 

[taximomfor4]

Just an anecdote....CPS was called on my parents because someone felt my teeth were being neglected (No, I didn't have tooth loss or cavities, I had many extra teeth and not enough room so the dentist felt I would not be able to adequately clean my teeth.) DOn't know who called. Anyway, CPS talked to my parents and talked to my dentist. Then they sent papers to my parents saying that I MUST get orthodontic treatmet or it would be neglect. I got extractions and braces, and have been able to properly brush AND FLOSS ever since.

I say this not to advise calling CPS, but to explain that this IS part of their job and that they can interfere. I was never removed from the household (even with MUCH worse going on.) They want to keep kids with their parents but sometimes parents need a *nudge* to see the importance of some medical issues.

Good luck with whatever you decide to do. I have no advice for you except that when/if a diagnosis gets made, they will need your support. Hugs to them and to you for caring so much!

 

[SueM in MN]

My DH's cousin who we see maybe once a year has a little 5 year old. The little guy had some real problems with speech and language and was given speech and lang assistance though the local BOCES program. The therapists came to her house etc. Little man is now 5 and in a Head Start type of pre-school program. The teachers and therapists all think he needs to be evaluated for learning problems and other problems..............
I have to call cousin (MOM) today. Grandama /Aunt wants the name of our Dr. ......................I think that just by bringing this up I am going to get her angry but her Mom called me to see what I thought and get the name of our Dr. HELP!!!!

It sounds like the child was in the local early childhood program (I'm not sure what BOCES is because this abbreviation is not used in places I've been, but it sounds like the birth to 3 program). If that's the case, he is already "in the system." In some states, Head Start is the place that provides services for children with special needs who are over 3 years old until they actually get to Kindergarten age.

I agree with those who would not call CPS. I would not report this kind of situation to Social Services (I am a nurse, so I am a mandated reporter and this is not something I would be obligated to report). It is not abuse or neglect and the child doesn't sound like he is in danger of being abused or neglected. It's more misguided (plus the child is already in a school program, which would have responsibility to evaluate him). The situation taximomfor4 was a situation where someone apparently did think her dental health was being neglected, so it is different.

If the teachers and therapists all think he needs to be evaluated for learning problems and other problems, that information will be part of the information that gets passed on to whatever school he does go to. Even if it's not, a 5 yr old with that type of behavior is going to "stick out" to the teachers when he gets to Kindergarten.

I would provide the information you were asked for - the grandmother is making a first step to get some help. I agree with what was written by minkydog:

Don't push too hard, but since you were asked provide the information they are looking for. I know you are worried, but until the parents are ready to acknowlege the problem, you're barking in the wind and aggravating the heck out of them.

My older sister's son has Asperger's syndrome (on the Autism spectrum) and had a lot of behaviors from an early age that made him "stand out". People telling her he needed help actually delayed them getting help for him. They were well aware that he was not acting the way kids his age did, but people pointing it out just made them more defensive and willing to rationalize there was nothing wrong.

It's not always necessary to get evaluations done by a doctor - the school is obligated to evaluate children who seem to have special needs and should have the resources to do so (in some states it's called "Childfind"). They should be used to dealing with parents who are resistant to admitting there might be a problem.

 

[D L and K's Mom]

Thank you all so much for the support. The Dr I was refering to with the 2 autistic sons is a PEDS Dr. He sees all my children (my son with special needs and my 2 girls who do not have special needs) He is a great Ped. He also sees 1 of my students and is very involved in his CSE mtgs and I have met with him a few times to discuss this student (with Mom and we do have a HIPA waver so we can talk freely). I have decided to pass on all info I have about my Dr. Also I am giving them the name of a great lady I know who is an Autism specialist for my school district (She said SURE!). She said she will give them links to some sights and some parent sites. If they want to contact her great, if not maybe they can use her insight later. I will not call anyone. This little guy is so loved. They got him services for his speech as soon as they saw there was a problem. He is not an only child and the ohter children are loved and cared for as well. I know this could be seen as neglect. It isnt. He goes to school, he is fed, loved and well cared for. I really see it as Mom and Dad are just not ready to see that there may be a problem. I know the teacher will pick up one it immediatly and then she/he can be the one to guide them. Thank you, I just really needed to get this out. DH is also caught in the middle. We are going to give the info, let them decide and back off. If they need us we will be here. Thanks again.

 

[Tinker*Shell*Bell]

I have Been There Done That , but on the other side. I was the parent who's kid was "Fine, thank you very much!" But he was really not fine. He is now diagnosed as Aspergers Syndrome (on the autistic spectrum) and it is very hard to get services for him in school because he did not enter Kindergarten with services. I went to a meeting before he started K and told them how smart (IQ 132) he was and how great he is at home and it is all on record. Now when he needs help, they pull out that paper and ask "why he didn't need help then but does now?" We are stuck fighting for the smallest things (extra time to complete work, note takers, movement breaks, ect...) He was in head Start too and Head Start would have helped push for services for him going into public schools, but because of my denial we are stuck in an endless loop of meetings and disagreement. Please try to share (I know you are) with them the importance of starting help early and letting outside people help with that process. My son is in all regular classes, which is great but if I had let them help sooner he would be in regular classes with a little help from other services. It would have made such a huge difference for my son.

 

[scojos]

I have Been There Done That , but on the other side. I was the parent who's kid was "Fine, thank you very much!" But he was really not fine. He is now diagnosed as Aspergers Syndrome (on the autistic spectrum) and it is very hard to get services for him in school because he did not enter Kindergarten with services. I went to a meeting before he started K and told them how smart (IQ 132) he was and how great he is at home and it is all on record. Now when he needs help, they pull out that paper and ask "why he didn't need help then but does now?" We are stuck fighting for the smallest things (extra time to complete work, note takers, movement breaks, ect...) He was in head Start too and Head Start would have helped push for services for him going into public schools, but because of my denial we are stuck in an endless loop of meetings and disagreement. Please try to share (I know you are) with them the importance of starting help early and letting outside people help with that process. My son is in all regular classes, which is great but if I had let them help sooner he would be in regular classes with a little help from other services. It would have made such a huge difference for my son.

can a brit put her opinion pls?
i have the same probe with my ds6. He *behaves* in class, like typical aspergers child, knows the barriers, rules and is fine. However, in "down" time during recreation or less structured play he can be disruptive or even distressed. I voluntarily called child protection before his diagnosis as i was unsure of what to do. They sent me a social worker who said they could do nothing, as he was obviously healthy and well cared for... sometimes you wonder why you try and do the right thing...
Now he has had his diagnosis, they do take into account certain things, he is always first in the line, as he cant do cues, (How exactly are we going to do wdw ) and he is not given food at break if he doesn t want it (before they were encouraged to hav milk and fruit).
joshs teacher is very good, messages are sent back and forth constantly so i know of anything out of the ordinary that day. Josh suffers very badly from nightmares... ASO kids dont need to be in seperate classes, as a high school teacher myself we have several aso kids in mainstream school, if thats what they are worried about... knowledge is power, and they must do what is best for their child, sticking their head in the sand imho will not help...
tracy

 

[ducklite]

Just as an FYI, in some states (SC is one of them) CPS has a division that specifically deals with putting appropriate services in place for children with disabilities. It has nothing to do with children who are abused or neglected.

The entire purpose of the division is to assess a situation, make sure that the child is or has been properly evaluated, and that appropriate services are currently or are being put into place for that child. If a parent disagrees with the services that are suggested by the results of the evaluation, then a law guardian is appointed for the child to represent the childs best interests. The law guardian is nuetral and sides in the interest of the child, not the "professionals" or the parents. My sister used to work as a preliminary investigator in this field, and found it generally satisfying work.

Only twice did she have a situation that her report caused a child be removed to a foster home, once because the infant was FAS, had unexplained bruises, and was living in a home with drug abusing mother and her boyfriend who had some sort of sexual predator charges pending. The other because she arrived at the home which was a 25 year old mobile home with no phone, power, or running water, found squalid conditions and six other children and immediate dangers such as a steak knife sticking blade up between sofa cushions. Obviously those were cases that any mandated reporter (or concerned citizen!) would have done the same thing.

This is what I was referring to when I suggested calling CPS, I was not inferring that the child was being abused or neglected. (Although if the child is not receiving services that would benefit him because the parents refuse to admit that their child has a disability, then that would fall into neglect IMHO.)

Anne

 

[SueOKW]

I think people are only going to hear what they are ready to hear. A woman I work with was quite used to her middle child not communicating etc... I'm not sure what finally got her motivated, but now she's accepted the child is delayed and perhaps slightly autistic, she's going to special classes, IEPs etc. She's seen huge progress, too!

I agree with Sue that the school should be able to deal with this. Too bad they went about it rather ham-fisted. Let's hope they keep pushing (they will) and your nephew gets some special attention!

 

[D L and K's Mom]

Thanks so much for all the info and kind words. One of the reasons this is killing me is because I am a teacher and I have seen what school districts can do and not do if you wait to long. I have a little on in my class (!st grade) We went armed to the CSE, Mom, Dr, Teacher, autism specialist, behavivoral specialist, speech and lang teacher, OT all with letters, justification for a one-on -one aide etc. He has a one on one aide and in his case it is the least restrictive thing for him. He is smart as a whip, he has a terrible time transitioning, he has huge anger problems etc. His aide sits next to him and just reminds him to raise his hand, she brushes him, rubs his back and helps him keep his anger in check. He has a few other issues but the mtg went GREAT because we all went in ready and knew what he needed. He will continue to be in a regular 2nd grade with his aide. YEAH!!! I think labeling their child is a huge thing for them to do.

 

[ozarkmom]

I can feel for you my sil has never been able to admit that her DS has some problems. He's now 19 and if you spend a couple of minutes around him you know there is something wrong. I babysat him when he was 4 my DS was the same age and the differences were glaring. I tried to take into account that kids are all different but it was too much. He started K in public school and was held back. They then moved to a very rural part of Arizona for a few years and she kept talking about how much better it was in a school with a total of 25 kids. Then when they moved back home she put him in a private school that didn't offer any remedial aid at all. After a couple of years she tells me in a surprised tone that he can't read or do simple math so I'm going to homeschool him. Now when we're at family gatherings everyone pretends that nothing is wrong. We have my DS and a few other cousins all the same age. They're all in college or working cutting up and doing all of the normal stuff for 18-25 yr. olds. I think it's sad he's never had any friends it's just always him and his mom and dad.

 

[dreamsofdisney]

Hi there....
So much to say, and not a lot of time to post right now, but I wanted to chime in!

I live in CT now, but am originally from your area (Brockport!) and my son attended the BOCES #2 program in Specncerport for children on the Auitsm Spectrum. He was also mainstreamed in our local school district while we lived in NY. I probably even know the wonderful autism specialist that you mentioned and have the name of a fantastic Developmental Pediatrician at Strong.

Feel free to PM me if you want to chat some more, or share some names and contact info. I'd also be willing to be a parent contact (via phone or email). When I lived in the area, I'd started a support group with another mom, and now I work in a program doing therapy with kids with Autism here in Connecticut.

 

[Snow Brite]

Gosh this is hard, isn't it? As someone said they can spot a child with an Autism spectrum disorder, I can spot kids with ADHD a mile off since I live with 3 of them!

I have found the best and most gentle way to help is to let the parents figure it out on their own. I ask a lot of questions, questions I probably already know the answer too, but let them talk. It can start with...Is Joey enjoying school? What does he like to do there? Why do you think he has a hard time at school? What do the teachers say about that? How are you going to solve that? Etc etc. Depending on how the conversation goes, I could end with...Do you think there is something more going on? Even if they put on a happy face and say that Joey is doing GREAT and school and just LOVES it, maybe you can get them thinking.

If they ask questions of you, answer them and ask some more back. But the best way is to let the parents figure it out.

Under NO circumstances, short of true neglect or abuse, would I involve CPS in anyone's life. They have far too much power to destroy families based on one social workers opinion. I would not want anyone I loved, or even just kinda liked, to be on their radar. Something we think is just fine could easily be interpreted by someone having a bad day, or just doing a bad job, as immediate danger requiring intervention. No way, no how, is that a good idea.