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Forum: Children with Special Needs

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  #1  
April 27th, 2009, 02:06 PM
hoping4more
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ok its a long story but ill try and make it short. i got married to a widow. he has two sons one is almost 17 and has some sort of disability. when he was young he went through testing and they said that he was severely autistic... the doc told them to ignore the diagnosis and prob. would grow out of it. well he is almost 17 now, and continues needed help in every area of his life really... if you tell him he cant have a bowl of ice cream because maybe because he was behaving wrong or already had one he would throw a fit, and you cant calm him down really, it will eventually get to the point where he is either lying on the floor crying or stomping on everystair crying all the way upstairs to his bedroom. in school he has not been able to remember more then basic adding subtracting division and just now fractions. although he does do simple algebra in class... it doesnt doesnt stay up there. one the school psycologist or something said basically what is going on is that his brain can not hold anymore information. if hes doing it right then with help fine but he cant recall later on. he also strugles greatly in all areas at school. right now he cant pass his drivers permit because his vocab is to low. the other day he was taking a prctice exam at home, and didnt know what horizontal, vertical, or diag. was to answer a question about crosswalks. he looks normal on the out side. he also has this tendency to huddle around his father... like if his father goes to the bathroom he leans against the door, if he walks anywhere in the house he gets up to follow him. when my husband comes home from work he will climb on his back ( we have two little sons so my husband gets on the floor to say hi to them ) with the other infants and calls him daddy. he has an obsession with having to touch things, or put his hands in his fathers hair or my childrens hair all the time, he must kiss and hug everything. he also flaps his hands usually close to his face, but my husband made him stop he would punish him like have him sit at the table if he did it. so now he cups his hands by his side and makes these motions that arent as obvious before he would flap his hands by his face and open his mouth kind of fish like. he is a great kid honestly, and im glad to have him. but my prob. is my hsband has been in denile that anything is differnt really up until this last year finally... finally he admatted he thinks there is something going on, but he wont ask teh doc. he said he would make the appt. but doesnt and any time i bring it up no matter how hard i try and do it as sensitively as posible he gets defensive. i just get frustrated.. he is a great kid, but its much harder to raise him and try and talk in ways that he comprehends all that im saying... i just dont know if their is something we can do to help him. but i was wondering if anyone on here knew anything about what im going through or if an symptoms sound familar or anything. im not complaining about him he really is great, but any of you moms i thinkwould agree sometimes it can be frustrating.
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  #2  
April 27th, 2009, 02:12 PM
hoping4more
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to add more detail,.... he also cant sit still, he is always moving, only is interesting in about one hobby nothing else can hold his attention. also they said he would never be able to go to a public school ( when he was younger ) he is in one now.... but i cant understand how he is passing the grades? he doesnt seem to have the knowledge a ninth grader should have. im super nervous about the mcas he has never passed them yet, and has to next year. he also didnt walk until almost three years old. please any help from anyone? i feel as though im in the dark.

Last edited by hoping4more; April 27th, 2009 at 02:52 PM.
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  #3  
April 27th, 2009, 03:50 PM
AlexKatieAiden Mommy's Avatar Linda
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I really don't have any experience with older children on the spectrum, my son is only 4. I can only tell you that your husband will have to come out of denial on his own. If he still isn't making an appointment with the doc, or bringing anything up, then he is most likely still in denial. The more you push him to make an appointment the farther you will push him away. He has to come out of denial on his own terms, you can't make him (I don't think that is what you are doing, just wanted to warn you). I know his son is suffering in the mean time without having appropriate services in place but you don't want to push your hubby farther into denial. I kind of did that with my son's father and it was bad, it is better now but it was bad for a while.
The symptoms you are seeing with his son does sound alot like autism. All I can say is hang in there and help him in any way you can. I would also do all the research you can on ways to help him. I know it is extremely frustrating when someone isn't on board to get help but there are things that you could learn to do that would help him out. PM me if you ever need to vent or just want to talk.
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  #4  
April 27th, 2009, 04:08 PM
Ditzzy's Avatar Stupid Lamb;)
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I'm really curious why a Dr would say to ignore it and he would grow out of it. What kind of Dr does he see? First off, I'd get him in to a developmental pediatrician. They are at any Children's hospital. Normally when children get diagnosed with Autism they have therapy (speech, sensory, OT) starting very young. My DS has been in therapy since he was 18 mths old.

I'm sorry you are dealing with this. ((Hugs)) It's great that you want to help him! I'd get a referral asap to dev. peds and go from there! Kup!!
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  #5  
April 27th, 2009, 04:52 PM
~~~Sara~~~'s Avatar Platinum Supermommy
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I think it's great you want to help him.

He definitely sounds like he has some issues, but I bet some of them could be improved with different therapy. I would suggest getting him to a doctor at children's hospital and also it would be of great help to get his IQ tested. Your local regional center is also a great resource to help you. If you do not know what a regional center is, let me know where you live and I can help you find resources.

He sounds like a great kid that needs some help, thanks for helping him and please keep us posted.
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  #6  
April 27th, 2009, 08:49 PM
hoping4more
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thanks girls, i agree with alexkatieaidens mom... about my husbands denial. though i need to dig in to some material.
sara im in eastern mass. pretty much coastal.
he does have a lot of therapy but it is all from the school... and to tell you the truth im not overly impressed. but at least he does have all the stuff somewhere.
if you guys could give me some links you think are good that would be an awesome place to start. thank you so much for all your help. i really appreciate it. im glad i found this forum, its been so frustrating in it alone... thanks again. i gotta run its wicked late. but ill check back tomorrow.
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  #7  
April 27th, 2009, 09:41 PM
AlexKatieAiden Mommy's Avatar Linda
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If you go to your local book store they should have tons of books you can read. I bought a couple from Barnes and Nobles that were awesome. "The Out of Sync Child" deals alot with sensory issues. "Autism Handbook for Parents" by Janice E. Janzen is good. I just started reading it. It is for parents who's children have recently been diagnosed. "Healing the New Childhood Epidemics" goes over some biomedical things you can do.
That's all I can think of right now. I'll see what I can find in my favorites for websites and post them a little later.
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  #8  
April 27th, 2009, 09:42 PM
~~~Sara~~~'s Avatar Platinum Supermommy
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Not sure if you are near boston, but there is a great children's hospital there, maybe you can call and ask to speak to a social worker to help you with ideas?
Children's Hospital Boston

There is also this organization for special needs kids near Boston
The Federation for Children with Special Needs

I hope that gets you started, I will say you have to push and push and push, if you aren't happy with the therapy he's getting in school, talk to his teachers and service coordinator/case worker type people. I can tell you with certain situations, I have asked every person I meet for months until I finally find a person that can help, I hope you can get some answers, I bet it will make a huge difference in his life.

Also you might be able to get some additional therapy through your private insurance, or does he qualify for SSI, or Medi-cal?

Not sure if you are near boston, but there is a great children's hospital there, maybe you can call and ask to speak to a social worker to help you with ideas?
Children's Hospital Boston

There is also this organization for special needs kids near Boston
The Federation for Children with Special Needs

I hope that gets you started, I will say you have to push and push and push, if you aren't happy with the therapy he's getting in school, talk to his teachers and service coordinator/case worker type people. I can tell you with certain situations, I have asked every person I meet for months until I finally find a person that can help, I hope you can get some answers, I bet it will make a huge difference in his life.

Also you might be able to get some additional therapy through your private insurance, or does he qualify for SSI, or Medi-cal?
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  #9  
April 28th, 2009, 04:54 AM
Ditzzy's Avatar Stupid Lamb;)
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Sara, you rock! Thanks for giving her links!

IMO, the father has had 17 yrs to come to terms with this. He hasn't. This boy needed appropriate care years ago. I wouldn't wait to his Dad to get out of denial. It won't happen.

Just to be clear, therapy alone is usually once a week for each type of therapy he gets. (ie my DS has ST and OT every week and they are seperate appts). That is just one type of the many different appts autistic kids get. They can be time consuming to say the least. BUT they make a world of difference!

I think you are doing such a great thing by helping him.
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  #10  
April 29th, 2009, 08:18 PM
hoping4more
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Quote:
Originally Posted by ~~~Sara~~~ View Post
Not sure if you are near boston, but there is a great children's hospital there, maybe you can call and ask to speak to a social worker to help you with ideas?
Children's Hospital Boston

There is also this organization for special needs kids near Boston
The Federation for Children with Special Needs

I hope that gets you started, I will say you have to push and push and push, if you aren't happy with the therapy he's getting in school, talk to his teachers and service coordinator/case worker type people. I can tell you with certain situations, I have asked every person I meet for months until I finally find a person that can help, I hope you can get some answers, I bet it will make a huge difference in his life.

Also you might be able to get some additional therapy through your private insurance, or does he qualify for SSI, or Medi-cal?

Not sure if you are near boston, but there is a great children's hospital there, maybe you can call and ask to speak to a social worker to help you with ideas?
Children's Hospital Boston

There is also this organization for special needs kids near Boston
The Federation for Children with Special Needs

I hope that gets you started, I will say you have to push and push and push, if you aren't happy with the therapy he's getting in school, talk to his teachers and service coordinator/case worker type people. I can tell you with certain situations, I have asked every person I meet for months until I finally find a person that can help, I hope you can get some answers, I bet it will make a huge difference in his life.

Also you might be able to get some additional therapy through your private insurance, or does he qualify for SSI, or Medi-cal?


thanks im very much near boston, though getting an appt. would be impossible for me, because im only his step mother. its been so frustrating because i dont have an actual diagnosis and i dont know where on the spectrum he is or anything and once he turns eighteen there is almost no way ill ever find out, because no one has ever told him that he was diagnosed as autistic.... he knows himself that he isnt like all the rest of the kids... but hes in the dark too really. its very hard. i wonder if he will be able to live on his own, or not. its kind of ify at this point. there are many things he can do, however there are so many things he struggles with like simple math, and remembering anything. i dont know if he could remember to pay his bills or keep track of his money so he has it to pay the bills when they're in. also i wonder about cooking he has such a lack of patience that he doesnt read any directions, and even when we make him he has such a hard time understanding something ssimple like boiling macaroni. ill check into those books though, unfortunately i think i need to keep it on the dL. i really dont know about my hubby. i talked to my childrens pedi. about my stepson and he suggested that it sounded like this form of autism that many people who have it end up living pretty normal lives, some get married and have kids of there own. i cant remember what he called it exactly though, i remember reading about it on-line once but havent been able to find it again. i guess its also hard because spencer ( my stepson) doesnt treat me like i exist most of the time, he is so much all about his father, which i dont disagree with. but if im talking to him about something he will just act like im not there and start talkingt o his dad. i do so much for him and i feel like he just doesnt care. my husband makes him stop and pay attention to me, so at least i have my husbands support in that, but its been years now, and he is always the same. i know im only his stepmother so i dont expect him to be overly attached to me, but it still hurts. sorry this is so long. anyway i'll try and stop by when i can. things have been getting crazy here. housework is piling up ive got tons of doctors appt. this month it seems, and my hubby is gone back to 7 day work weeks. ill try and keep posting. thanks for your great support, you ladies have taken a load of my sholders, i dont know if its just knowing there are other people out there, and finally talking with you, or what but i really appreciate it. thanks.
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  #11  
April 29th, 2009, 08:49 PM
AlexKatieAiden Mommy's Avatar Linda
Join Date: Apr 2009
Location: Wisconsin
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I don't know if you are thinking he has aspergers. It's like high functioning autism. And from the sound of it that is what you are thinking. Here are some posts of websites that I have found helpful.
All Things Autism; As Seen From Parents of Autistic Children
Autism Speaks, Be Informed, What is Autism, An Overview
An awsome site about things you can do at home to help someone with aspergers. and some other sites about aspergers.
Asperger's Syndrome-Home Treatment
ASPERGER'S DISORDER HOMEPAGE
Asperger and Autism Information by MAAP Services, Inc. - The Autism Source - A Global Information and Support Network
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  #12  
April 29th, 2009, 11:46 PM
kittycat's Avatar Platinum Supermommy
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Quote:
Originally Posted by Ditzzy View Post
Sara, you rock! Thanks for giving her links!

IMO, the father has had 17 yrs to come to terms with this. He hasn't. This boy needed appropriate care years ago. I wouldn't wait to his Dad to get out of denial. It won't happen.

Just to be clear, therapy alone is usually once a week for each type of therapy he gets. (ie my DS has ST and OT every week and they are seperate appts). That is just one type of the many different appts autistic kids get. They can be time consuming to say the least. BUT they make a world of difference!

I think you are doing such a great thing by helping him.
I have to agree, and not to be harsh (because I think it's incredible and wonderful that you are and want to be there for him) - but find it a bit disturbing that your DH has allowed his son to go untreated all these years. Getting help isn't the end of the world - it's not admitting failure or fault. It's help for a child that needs it. The doctor was certainly wrong to ignore it - but maybe back then they didn't know as much about autism as they do now. However, the delays could have severely impacted his ability to learn and function normally - learn to cope and manage what's going on inside. He needs a developmental pediatrician, therapy, and testing done. Testing will likely include head scans (MRI/CT/EEG). They could find something very treatable, or offer advice on how learning/testing in school - as well as solutions on behavioral issues. He might qualify for special tutors, and special testing support at school - even in college. Therapy will be a big help in this - but you can't wait forever. This is life impacting, not just on you/your family - but his long term development and future.
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Last edited by kittycat; April 29th, 2009 at 11:51 PM.
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  #13  
April 30th, 2009, 08:33 AM
~~~Sara~~~'s Avatar Platinum Supermommy
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I am sorry you're having such a tough time, I am a step mom to 2 girls, now 17 and 20 and it's a normal reaction, then if he is autistic, he may be more withdrawn, sounds like he only trusts his dad, which you can not take personally!

I bet you could call and get info on getting him an appointment and then talk to his dad about taking him. I make appointments for my stepdaughters all the time and I do all the "leg" work, as guys aren't typically as good at the details as we are.

Also, if you can hurry to get him tested, he may be declared to me incompetent to make his own medical decisions, even once he's 18, which would be good in a way if he needs the help, then you guys are there to help him.

It does sound like your hands are tied, but don't give up and hang in there!

I would at the VERY least call the Federation for Children with Special needs and tell someone there your situation, even though you are not his legal parent you may be able to get a referral out on his so a social worker can come meet him and order some testing, there ARE services for him that he's not getting, I can almost guarantee you that!
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