How Can I Help My Sister in Law with Austic Son

Updated on April 27, 2008
J.P. asks from Hardwick, VT
20 answers

my sister in laws son is 3 1/2 and has looked and worked with the state for assistance for him has tried numerios things and they wont help her. Her resources have run dry the state will only pay somebody to work with him for 15 hour so the rest gets shelled out of her own pocket. she has 3 other children of her own so she stays home with them and watches my son on the side to help pay for the person working with him. He has gotton to a point that he needs more theaputic tools that are very exspensive. He cant dress himself or feed himself without help of some sort and still is in diapers no way near ready for potty training will soak him self and whatever else is around him and has no clue or care that he is wet. What can i do to help her? Is there more assistance out their that we are not finding?

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J.D.

answers from Springfield on

I would recommend getting involved with Department of Mental Retardation. They have a part that is totally for Autistic disorders. Autism, Aspergers...etc. They will pay for a lot of things and also I would get him on disabiltiy that will pay for a lot. My son is autistic and needs things these are some places early intervention and his autism therapy has told us to look.

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A.B.

answers from Boston on

if he's over 3 years old, then the local public school system HAS to provide all necessary therapies and accomodations.

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D.C.

answers from Boston on

Hi J.,

Try calling the local school district. They have early intervention programs that may help. Contact the local social security office and inquire about SSI. When my daughter was diagnosed with a congenital heart defect SSI helped us pay the bills while going to the many doctors appointments. It may be too late but many interventions (failure to thrive) done through the hospitals and clinics are covered by the Federal Gov't. through legislation that Senator Clinton passed when her husband was in office as a part of the universal health care she was trying to get passed. Check out these web sites too. http://www.autismspeaks.org/ This one donates money when you watch the videos: http://www.whatkindofworlddoyouwant.com/videos/list/filte...
http://www.nationalautismassociation.org/?gclid=CJjvmKWKz...
http://www.autism-society.org/site/PageServer
I found this video inspirational since it gives a different perspective to our interpretations of Autistic people:
http://abcnews.go.com/Health/story?id=4311223&page=1 and
http://www.youtube.com/watch?v=JnylM1hI2jc&feature=re...

There are so many more resources today than there were. Read Temple Grandin Thinking in Pictures to get a feeling for what your nephew feels. Best of luck to your family.
D. C
Mom fighting breast cancer, daughter 15, son 13 Aspergers, sons 11 & 7

1 mom found this helpful
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B.S.

answers from Providence on

J.,

My sister-in-law is an Occupational Therapist and works in both a private school dedicated to children with autism as well as other behavioral/cognitive difficulties and as in early intervention therapist. Here's what she wrote back to me for information on what your sister in law might be able to do:

This little guy would definitely qualify for services. Sounds like currently he's getting home-based behavior services or respite care. Although, helpful, usually those employees are not trained in how to implement specific therapies. It is mostly to give the family some downtime, so they can get things done around the house or go to the market...etc. The exception would be if they were qualified for ABA therapy, which is a specific behavior modification program (I've never seen it be very effective, but I also did not see it being implemented properly...that was when I was working in CT). Since this little guy is 3 and 1/2 he no longer qualifies for early intervention services, however, is probably eligible for services and an IEP through his school deparment (I would be COMPLETELY SHOCKED if he didn't qualify). What they would need to do is connect with their town's school department and get the special education process started. They would first probably need to sign off to have evaluations done. Next, they would have an eligiblilty meeting to decide whether or not he qualified for services...he has autism...so he would qualify! They may even draft an IEP at that meeting...setting functional goals with the family. After that, a placement meeting would be scheduled to determine what type of program would be most beneficial and the least restrictive environment for the kiddo to be in while reaching the already determined IEP goals and objectives (is it a 1/2 day? full day? incusion class?, #of days per week? etc) Some parents don't want their child in a preschool setting at that age (why? I'm not sure...it is most beneficial), they can still get the therapy services recommended, but would have to bring their child for services during the week.

Another option is to ask their pediatrician for an "OT evaluation and treatment, as neeeded for sensory processing concerns". These are the types of referrals we got at Rehab New England (in Warwick). The doctor may also want to refer for a speech eval. (if they got the OT eval done...more than likely the OT would also recommend a speech eval). If services are necessary (I'm sure he would qualify...the potty training difficulty could be linked to sensory processing dysfunction, more specifically, sensory defensiveness) the families insurance would more than likely pick up the cost...since it is medically needed. If they are in the RI area...Meeting Street, Hasbro, and Rehab New England could all be resources for this type of service, as well as the Autism Project (located in Cranston), Autism Speaks (in Warwick) and RIPIN (RI parent information network) for more services in the RI area, parent support, rights, etc. If closer to MA area, there is a GREAT sensory based clinic in Watertown, MA with very well-known (in the OT world) clinicians. The school and/or the clinic where this child gets services can ultimately writeup a NEED for any therapeutic equipment, supplies needed at home and more than likely the insurance company will have to pick up the cost.

If you would like more info, feel free to email me back at ____@____.com and I'll reach my sister in law for the info.

Best of luck,
B.

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K.B.

answers from Providence on

Is she collecting Social Security for him. I only ask, because once he is involved with state funding, she should be able to get more resources.
Frist I would go to the Mayor of the town that she is from. Then she could contact her church (if she belongs to one), If none of that works, then I would go to my state representative. Tell him what she is up against, and see if he can pull some strings, or get the laws changed.
She could also try contacting her local childrens hospital.
Has she tried to have her son's doctor right a prescription, or demand that he have regular rehabilitation???? What about talking to her insurance company?? See if they have any advice---or read your policy--for clues. You could also contact your local Autism group---her local hospital may have a phone number for them, to find out where and when the meetings are held. I hope this helps---good luck.

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M.C.

answers from Providence on

what state are you in? In ma and with that Diagnosis he would be eligible for a special needs preschool program run by the city beginning at age 2.9. You just ask the school district you want your son evaluated or if you already have a medical diagnosis just call your school department and ask to speak to the director of Special Education. He would be placed on an IEP and would receive services from the school including speech and language, OT, PT not to mention specialized learning instruction. Did he attend Early intervention in your area?

Mary

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M.L.

answers from Boston on

Have her call her local school district and they will provide information on what she should do. Once a child turns 3 and has disability or suspected one the school district is responsible for providing services or screenings for this child.

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J.A.

answers from Providence on

I work for a non profit agency through DSS and I can find out more for you this week about all the services.
E-mail me personally since I do not get back on here often.

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J.O.

answers from Boston on

is he is preschool? Once a child turns 3 they should receive services from the school system. If her local school does not have an autism preschool program she can request that they send him out of district. This should get him more intensive therapy. If she is having trouble getting anywhere with the school then she should look for a parent advocate. An advocate is a person that is familiar with the IEP process and will help her get the services she wants for her son. Her son's school or the local early intervention office should be able to tell her the best place to find an advocate in her area. Here is a website with links that discuss the laws of special education for parents:

http://www.familyvillage.wisc.edu/education/advocacy.html

I know in NH there are state programs where a parent can request additional money to assist with paying for educational or medical expenses. In NH there is one specific for Autism and then there is Katie Beckett funding. Her local area agency should be able to help if she is in NH. I'm not sure where she lives though....

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A.G.

answers from Boston on

Im not sure if this really works but I found it about a week ago. Here is a site that says a dairy free gluten free diet helps a lot. http://www.gfcfdiet.com/Successstories.htm They are stories from families that says the diet really helped then it gives more info on the diet.

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J.N.

answers from Boston on

I believe that now he is over 3 years old, the school system can be involved. I suggest your SIL call her town's school system to push for services, evaluations, etc. If she has already done this, I'm sorry for the repetition!!!!
Good luck - your SIL is lucky to have such a caring family :)

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H.G.

answers from Boston on

I have worked with many children with autism but in the state of NH. I worked with an amazing woman who recently switched employment and began working for Child Development Services out of Arundel, ME. Have the mother call,###-###-#### and ask for their autism specialist, her name is Tina. If anyone can help with resources and overall plans, Tina can. She's amazing! I'm assuming you live in York County. If not they may redirect you to another office. The only other thing you can do as family, is to give your sister in law some time to herself once in a while by taking some of the kids or offering to watch her autistic son so she can devote some time to the other children. Having a trusted person to help out with the child with austism is a wonderful gift to any parent.

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J.W.

answers from Boston on

up until the age of 3 i believe you can get services through a regional center - but once they turn 3 you need to go through the school system. you and your sister should check out some of the autism websites like cure autism now (www.autismspeaks.org), www.talkaboutcuringautism.org - there are so many more!!

i know some mamas have already suggested the gf/cf diet (gluten free/casein free). i was just on amazon and came across this book - The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet by Pamela Compart.

also - i work for a company that was started by a mom whose children had all kinds of allergies and illnesses, etc - and she was so frustrated trying to cook for her children that she started making her own food. let me know if i can send you any info - there was a great article in woman's world about it! or check out www.jenwarr.mywildtree.com . it really helps as labels in a grocery store can be so deceiving and full of hidden things - wildtree makes it easy!!

take care!
J.
www.jenwarr.mywildtree.com

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G.S.

answers from Boston on

If there is an OFFICIAL DIAGNOSIS of Autism then he is completly able to attend day programs from 3 months on and get a PCA in the the home. This is per the Fed Goverment. Hopefully, she ( your sister) has a advocate for him that will be able to help her with other programs available. These advocates are really good at getting programming for children and all services needed for the other family members if needed.
You can provide 1:1 time with just that child and yours ofcourse in the home which is more safer for the child unless he is able to leave his setting and feel safe.
You also can call the Austic Society and get listings of programs and other opportunites for her.
After getting all of it you can speak to her about the options and support her at.
Good luck

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M.M.

answers from Portland on

Hi,
Does your sister in law have a case manager? I have 2 autistic children and have found that having a case manager is very benifical. What they do is find services and people to pay for them, not just thereputic, but recreational. We go through use Pine Tree Society, which speicalizes in autism, and I have found, after using many other agencies, that this one is the most professional and offers the most assistance. I really reccomend it. Your nephew should be in preschool and the CDS should be paying for it at 3 1/2 years old. Also with elementary school fast approaching she will want a case manager to assist in making sure your nephew recieves the correct SpEd services.
Hope this helps.
M.

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J.C.

answers from Boston on

hi J.!!I also have heard about that diet that allisa suggested(the gluten/dairy),I have heard it really helps,but it is alot of preparing and learning,so she would really need to be onboard 100%.My friend has an autistic son and she follows this diet w/him and i have even noticed a diff!!!He doesnt have tantrums as much and seems more focused...I would deff have her check it out!!Good luck,it must be frustrating to not get help from the state when your in need for it,i will be thinking of you!!

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J.C.

answers from Boston on

depending on what state you live in, there are places she can go to for help. If you live in NH contact Easter Seals or Early intervention resources. My son was diagnosed before he was 3 with autism. We got him into early intervention and once he turned 3 he was mainstrained intot he school system. He gets O/T and Speech. he is now 12. Having an autistic child is a difficult and straining responsibility but if you have the love and patience necessary it can be rewarding when they make those milestones.
feel free to contact me directly I can send you some online resources to help. J. C
____@____.com

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M.C.

answers from Boston on

If your nephew is over 3, and is in Massachusetts, he should be getting a program and all services from the local public school system. Please email me off group to discuss this further...I have worked in special needs advocacy.
____@____.com

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K.B.

answers from Hartford on

My husband is a consultant for schools in CT and is a certified Applied Behavioral Analyst specializing in early intervention services for children with Autism. I am sure he would be able to assist or connect her with some resources

Take Care

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H.H.

answers from Bangor on

RESOURCES FOR "CURING" AUTISM
Current mood: excited
Category: Goals, Plans, Hopes

FINDING A LINK BETWEEN GLUTEN (wheat) AND CASEIN (dairy) AND AUTISM-

http://www.glutensolutions.com/autism.htm

SUCCESS STORIES WITH THE GFCF DIET

http://www.gfcfdiet.com/Successstories.htm

ALL INFORMATION NEEDED TO START THE GFCF DIET

http://www.talkaboutcuringautism.org/index.htm

IT CANNOT HURT TO GIVE IT A TRY

We are on DAY TWO and already Kaelyn has shown AMAZING progress and her ongoing story is being used by an expert on gluten as an example to other mom with Autistic children!!

YOU CAN MAKE A DIFFERANCE IN YOUR AUTISTIC CHILD"S LIFE!!!

I hope this will help. Also, can she apply for MaineCare for him?

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