Special Needs Care for Adult Children: Care Options

Finding the right type of caregiver for your adult child

Just as parents of children with special needs rely on caregivers and support systems when their children are young, they may also need to rely on caregivers to help meet the needs of their adult children. In fact, caring for adult children with special needs can become more difficult as they grow larger and heavier, and more complicated as they reach adolescence.

Various options exist depending on the child's level of need and the family situation. Some adults with special needs may be able to live independently, others may require increased support.

Care Options Available

  • Family members. Many adult children live at home with family members as their primary care providers. According to one web source, 76% of individuals with developmental disabilities live at home. In a quarter of these situations, the average age of the adult child was 38; caregivers were age 60 or older.
  • Home health aides or personal care attendants. Depending on the child's level of need, these providers come into the home to help family members in a variety of ways. In addition to providing respite to family members and being a companion to the adult child, home aides assist with duties requiring more physical strength or perform specific assignments such as bathing and dressing.
  • Community-based homes and supported living arrangements. Adults living in group homes enjoy some independence, but receive support as necessary depending on their needs. Caregivers living or working at these homes provide a range of services, from supervision to help with medication to advice on getting to work and dressing appropriately.
  • Independent living arrangements. Depending on their situation, some adults may be able to live independently with some form of additional support. For example, they may need someone to help them for a few hours a day with activities of daily living, transportation, meals, etc.
  • Day programs. Once they are no longer attending school, adults can benefit from day programs appropriate for their level of ability. Providing structure to the day through a variety of educational services, these programs help adults work on life skills while offering social opportunities.
  • Long-term care facilities. Some adult children with special needs require extensive support around the clock.  In cases such as this, parents may feel their child's needs are best served in a long-term, live-in, care facility.
  • Assistive technology. There's a wealth of assistive technology, from software to sports gear, which may help your adult child be more independent. Your child's physician can help steer you in the right direction. 

Needs Change Over Time

One of the main challenges parents of adult children with special needs face is that of their own age and health. It's not uncommon for parents to care for their adult children well into their 70's, even into their 80's. The caregiving picture may change dramatically with a parent's illness. 

As parents age, they may be the ones in need of senior care, while their adult child with special needs continues to require the support of caregivers.  Planning ahead and evaluating caregiving options prior to a crisis can alleviate some of the stress that is inevitable when the balance of care shifts within a family.

Deborah Elbaum, M.D. lives in Massachusetts and has three children.

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Comments (41)
Hello. My adult son is 23 and is disabled. He lives with his father who was legally removed as guardian 18 months ago due to many reasons including financial exploitation and undue psychological influence. The judge ordered a temporary third party guardian because of the bad relationship between myself and his father, so I am not the guardian either. My son continues to reside with his father in spite of the orders and the guardian refuses to remove my son "against his will". As with most people on the autism spectrum, change this big is very hard on him and he refuses to cooperate especially since his father controls his every action and reaction. The guardian believes his not removing my son via law enforcement constitutes "first do no harm" ethics. I know my ex will never support my son in the court ordered move and he has filed appeals all the way to the supreme court without success. Are there any scholarly articles I can show the court supporting protective placement when warranted having ultimately a positive outcome?
Posted: August 28, 2015 at 6:16 PM
I am 69 my developmentally delayed/high functioning daughter lives a residentual group home with 6 other ladies 40 plus years old. There is a long story here of course, but I am in contact with my daughter every day and she spends one or two weekends a month with me. My problem is "when I'm gone who will be her advocate... watch over what is going on in her life and the care that she is given." Group homes are less than satisfactory especially if no one is watching. What can be done? I'm not talking about finances but someone to be close to her???? Caregivers are underpaid and group homes are now cutting back on healthy food and unless someone is there to communicate needs..... nothing will happen. Anyone have a clue.. it is heart breaking to think of someone you love being left with no one... Thanks
Posted: August 17, 2015 at 6:08 PM
karen g
I too have a MR son he's 32 and yes it is hard trying to find a day program for him while I work. Something that I found out is that you can call 211 and explain to them what you are looking for they gave me a list of programs in my area that I could check out also try the Department of Social Services in your area they can help also. Believe me I understand what each and everyone of you is going through I am going through it as well. Will keep praying for all of us that one day we can find a place that's a perfect fit for our child as well as for us. NC
Posted: August 06, 2015 at 12:41 PM
Hello all. I never thought I would do this because I don't reach out much to anyone. Most people don't understand our situations especially if you're tough. They don't know what to do when you finally break down and ask for help. I don't have any family support my son is 17 with CP epilepsy and some autism. He's nonverbal he walks runs loves to play love music enjoys people has a drooling issue that hasn't been controlled by medication. He was taken one medication that made him very sick. So he drools. It's uncomfortable for people most on accepting other stare. He mostly has night seizures they've been well controlled lately every now and then will get a stray seizure. I'm pretty sure everybody goes through something of the sort with epilepsy or even random cry the night or them just being scared. Which makes it even harder to send him somewhere you know they probably could benefit because you're scared. There's no one that we can't really talk to about this and they were and they really actually genuinely understand that it's difficult and you need them to be cared for. I have been thinking about it very much this year due to the fact he's very active and can be defiant and somewhat sneaky when he wants something that I told him no about. It becomes an issue when you can't hear them doing something that's very dangerous like turning on the stove the microwave, the coffee pot, plugging in things. Yeah everything is unplugged at night not to take it off the stove but there's always something that he gets into and makes a huge mess every day is unexplainable be smart. But it's becoming very hard even take them out grocery shopping to the movie to the park to the gas station I need a sitter for this or it doesn't get done. He has two younger siblings 15& 13 The really good kids and they help out a lot with him but as in previous messages you don't want to leave that burden on them to care for him only because they've done in their whole lives to along with me and you know the difficulties behind it. I've cried before I wrote mine during this writing and I'll probably cry myself to sleep but I love him so I have to do was best for him. I tried explaining to a couple of family members that I was thinking of placing him in full-time care they make me feel so low almost like I was abandoning him. There's no one else to talk to besides you go through it as well. Thanks for listening and thanks for sharing.
Posted: August 01, 2015 at 10:57 PM
Dar from Indiana
Hi, this is my first time here....How sad that we as parents/care givers are so isolated. I have a 26 y.o. son with Autism, Fragile-X syndrome. How much we all have in common! My one piece of advice for those with children still in school: Get an Advocate to go with you to IEP's. They know the laws and what is possible and what should be done. Teachers/administrators/therapists respect Advocates more because they do know the laws. Also, if something is agreed on at an IEP, ask: Who will be responsible for implementing it, when can I expect the services to begin, and how will I be notified of progress and how often can I expect a communication. Make sure someone is taking notes including you. If you have dates and notes, you are taken more seriously. Remember, an IEP is a Federal document - legal.

We are considering bringing our son home as he has lived in a center, a group home and waiver home and none are set up for him to be successful. Even the day programs lack staff with appropriate training. I have seen instances in Michigan where parents are buying homes and joining other families. I would like to look into this.

Does anyone else find it ....frustrating that the requirement for a worker with our special needs children/adults is a high school degree.? As a TA in the schools, I was required to have an Assoc. degree, 60 college credits or take a state exam. Why do our children deserve less?

Blessing to us all.
Posted: July 24, 2015 at 10:03 PM
How do you get a 27 year old mentally disabled young man who has a good job but has been told verbally and in writing that he needs to clean himself and be more hygienic or he will lose his job. Do you have any suggestions?
Posted: July 22, 2015 at 9:18 AM
jessica pena
I know it's politically incorrect to say this but I'm tired of caring for my autistic son, who I think has Fragile X. We can't go on a vacation because he's four years old, still wear diapers, has very specific food preferences, and is prone to terrible meltdowns. He also doesn't talk yet, but is starting to. However, he tends to regress so I'm not jumping for joy yet about on improvement. He has been to Regional and is a special ed class in an excellent school system. His teachers are afraid of his temper tantrums, so I hope they don't kick him out. Our local private school for autistic children costs $34,000 per year.
I feel trapped and emotionally drained. The thought of spending the rest of my life taking care of my son is depressing. I grew up in a large family and had to protect my siblings from my abusive mother. Now I have to spend the rest of my life taking care of my son.
Anyway, thank you for listening.
Posted: July 15, 2015 at 10:39 PM
Mrs. Thomas
I have a 20 year old daughter who has emotional and mental health issues. She has been acting out since the age of 9 and I have been through the ringer because of her. I am married and we have 4 other children as well all of us have been going through this so long and just can't do this anymore. I have done all I can from talking to having my husband chase her down when she ups and leaves I also have had her in many residential placements but that was before she turned 18. I need to find a place for her where she can be supervised because she is not mature enough or aware to be on her own this is why I continue to just deal with it but I have had it. She receives SSI and it can go with her wherever she goes to I need some advice on places she can go at her age please anyone help!!!
Posted: June 28, 2015 at 10:50 AM
This comment is for LULU who has the 33 yr old daughter who is at a 3 year old level. You are stating no one will take adults in with her issue because has no way to verbally connect with others. It is only a suggestion but perhaps the Lord wants to use your family to start that place. I am sure thee are alot of people who need this help as well and with unemployment such that it is you most likely will not have any issues in hiring. With telling your story there may be someone with a whole lot of money that would aid this endeavor especially if someone close to them had a similar cause. I hope your daughter is happy where ever she is living. I pray it all works out for you all, Bjai.
Posted: June 23, 2015 at 11:38 AM
I have a 23 yr. old son with cp & cognitive disability. He is wheelchair dependent so 24/7 care is needed. My husband & I take care of him at home.
We are in our late 50's with some health issues. It gets harder & harder to care for him. We don't know what we are going to do. He goes to the ARC day program. We live in MA. Our 4 other children have their own lives although one daughter helps out when she can. As you all know quality one on one care is so very expensive.
My husband & I thought if we could be creative and find a few other parents with similar needs as ours that we could by a home and the funding would come from ss & other government helps like section 8. Then we could hire who we want and be involved with the people that would care for them. It is much more affordable when you have a few people working together.
Well that's my thoughts for the day.
Take care everyone.
Posted: June 11, 2015 at 7:19 PM
Hello to all the parents here. I have a son that is 27 that became mentally challenged after the removal of a brain tumor. My heart goes out to everyone and I am in the same situation. Everyday I thank God for another day to be here to take care of my son. There is no help out here for parents that are trying to keep their children home and safe. My son did not qualify for a waiver because his IQ was 70 and he needed to score a 68. Now we are trying for the now waiver here in Georgia. God is good, my stepdad keeps him while I work at this time and takes very good care of him. We need help as parents.
Posted: June 07, 2015 at 7:40 PM
I just placed my 27 year old with MR and autism into a residential home just last week. I hadn't planned on doing it this soon, but an opportunity arose that I couldn't pass up. It's a beautiful home in an upscale neighborhood right by a golf course. He is living with 2 other men his age with autism. My son has the master bedroom which is huge. The bathroom and kitchen had been gutted and everything is brand new. There is also a gameroom. So why am I crying all the time? I feel so lost and while I know he's in good place I can't stop crying. My son, right now is homesick. I worry all the time. I don't know what to do or how to feel. Can someone say something to me to help me feel better?
Posted: June 06, 2015 at 10:19 AM
I have a 12 yr old Down Syndrome little girl. she has very littler verbal skills but she understands quite well. She is pre preK level in school. She loves music and dances. I really need a friend for her. I hate that she is always alone. Even thou she makes do with her imaginary friends. I really want her to be able to go out with other kids. When I do take her out I pair her up with other little girls and 6-8 yrs old . She doesn't look like a Downs baby at all. Shes small for her age so most people don't even know until she goes to talk .sometime I just watch her and wonder what is she really thinking is she ok inside. Does she have what she wants?. It's hard when you have a child who really cant verbalize her desires . I know Im not talking about much just wanted to share about my blessing "Seniah"
Posted: June 02, 2015 at 11:19 PM
We have a special needs daughter. She is 33 yrs old. She has Fragile X syndrome. She functions at a two to three yr old. We have been trying to get help for her behavior. She has been to the ER 3 times this year for Manic behavior. No psychiatric facility will accept her, because she is non-verbal. It is starting to cause us mental stress. Because there doesn't seem to be any help for her.
We just moved to Washington State. And the same thing is happening here. We are worried about her future. It is a lonely life, not too many people want to include us in their lives.
We moved from California, that state has The Regional Center. And IHSS. Very helpful for services. But no help for psychiatric problems.
Posted: May 23, 2015 at 1:22 PM
I have a Down syndrome, autistic 52 year old brother. He now has Alzheimer's, Parkinson's and has started having behavior problems. If you qualify for any kind of help get it earlier rather than waiting. Now that he has been labeled as behavior problem we can't get accepted in any group homes or old folks homes. This is a new behavior and he isn't very strong but has become combative, hitting, kicking and hollering. But we are being told had he been in one of these programs it would be different. Since he isn't in any program and has been a family cared for special needs. Now he can only go into a full blown behavior home. Where this is not only special needs but normal people with behavior problems!!! I don't know what to do. The reviews on these types of places are scared. He has been in mainstream school, worked through the ARC but to be put in a home or hospital with all types of behavior problems isn't a fair option for him!!!
Any help is appreciated. We are in Louisiana.
Posted: May 10, 2015 at 10:43 PM
I just don't know how to help anymore.I have been by my daughters side helping her in the getting help prossess for what started off as the school wanting me to start her on ADHD meds to not wanting to go to school and refusing to do anything at or even attending school.I have exchanged words with my child and through frustration of it all we have both been physically fighting. She and I both over the course of 18 years that she is now beginning near 11 years old have seeked mental health facilities but none has worked. She has went from hyper to perinoid schitso.. And a lot more in between.She wants and needs help but it seems I am the problem as told by her Weems Mental Health therapist. Determination of her overdosing on her prescription meds when I'm not around. (I'll either be sleeping or at a grocery store when she does)I evidently do not hide them well enough from my grown child.Any suggestions from anyone?
Posted: April 29, 2015 at 1:28 PM
Rachel F from Maryland
I am 31yrs old. I have a 9 year old special needs child. He is MR and epileptic among other things. We also have a 6 year old "normal" daughter. I dread leaving her with the responsibility down the road. I thought i would reach out for any suggestions for long term goals. We don't really have spare money to put away in a trust or anything. Has anyone on here ever looked into putting their adult special needs child in a full time home? Or set up anything like that for after you pass.
Posted: April 28, 2015 at 9:05 PM
My wife and I live on Long Island. Western Suffolk. We would love to meet other parents in our situation. Maybe a Summer BBQ or a movie night? I am 53 and she is 45. We have a 26 year old son with CP and MR. He will probably be with us for life. He is forever a 4 year old. My wife works full time as a Special Educator and I work as an Electrician when I can. I must conform to our son's schedule so full time work is out for me. My wife (Jenny) has her Master's degree which we are still paying for..so I drew the short straw. This forum seems like a wonderful thing but I notice that many of the posts are a few years old so I don't know if anyone will even see this but I am putting it out there.
Posted: April 08, 2015 at 7:49 AM
My 22 year old son has Aspsberger's, ADHD. He is high functioning physically but mentally he is at the age of an 12 year old. He has made great strides to become the nice young man he is now and has also been through a lot of periods of people judging him. Sometimes even people employed by agencies that are supposed to help can be judgmental. He lives in a different state than I do but is only and hour and a half from where I live. He has been able to come to my home via shuttle (someone is there to get him on the shuttle and I am there to meet it as soon as he gets off). Now because new management has taken over the agency that is helping him, he is now longer able to board that shuttle. Nothing has ever happened to him other than it giving him a feeling of being proud that he has some sort of independence. I do visit where he lives frequently. I wish new management would just take the time to visit him instead of making decisions without knowing what has been going on with him. The documentation of what has been ocurring with him is available for them to read but for whatever reason, no one wants to read it. I guess I just need to vent out of frustration.
Posted: April 03, 2015 at 10:18 PM
Judith S.
I care for a 55 year old brother. Thank God for the adult day care in my community
But even the staff saw the change in him. Stubbrin, not happy, not responding to commands such as brush your teeth (same at home)
Reading all your stories makes me think l don't have it so bad. Because the little town that I live in has help for me. (VA) That I may reach out to.
My heart goes out to those that can NOT find help. (Try Social Service)
I have no children of my own no husband no life of my own. (69) But this is God's plan
for me. I pray a lot.
For people with no help go state or city or town. Help is out there.
Posted: March 09, 2015 at 5:00 PM
Judith S.
I care for a 55 year old brother. Thank God for the adult day care in my community
But even the staff saw the change in him. Stubbrin, not happy, not responding to commands such as brush your teeth (same at home)
Reading all your stories makes me think l don't have it so bad. Because the little town that I live in has help for me. (VA) That I may reach out to.
My heart goes out to those that can NOT find help. (Try Social Service)
I have no children of my own no husband no life of my own. (69) But this is God's plan
for me. I pray a lot.
For people with no help go state or city or town. Help is out there.
Posted: March 09, 2015 at 12:01 PM
Wish there was a way all us parents with special needs children can get together in some kind of club. We would have to form it since the government seems to have less and less money. I have a 28 year old son who is downs syndrome and somewhat autistic. He has a double whammy. He does function at a 6 to 10 year old level. He can watch tv and understand the movie. He cannot play games since his ability is very low. He has been on abilify, prozac, lithium and gabapentin. It has helped him a great deal. I am now able to take him into stores with me. He is very independent. BUT these medicines make him gain alot of weight. Like many of you I also feel very isolated by other adults. They want me to do things with them until they find out I have a special needs adult than I never hear from them again. I don't blame them in a way since they probably figure I would ask them to watch him once in awhile. I would never do that unless they volunteer than I still would not do it. I know God chose us for a special reason. We are tested every day of our lives. I also fear for his future when me or his Dad are not here anymore. We are both in our 60's now and none of our other kids show any interest in him at all. Like you I am afraid for his future!
Posted: January 06, 2015 at 11:12 AM
janet greene
Hi m people that you didn't know this was also family members so I know how you feel my children are 28 29 and 30 stay positive and you will be find good bless. name janet and I have three adult children with mental disability lord knows I now what your going through the medication people calling them names birthing this was not only the roughLess
Posted: December 29, 2014 at 8:36 AM
Yes, the loneliness is painful. My 22yr old has autism and diabetes. It's Friday night and I know that my mom and sister are out having fun of course they never invite me bciz I have my daughter who functions around age 7 but most importantly has challenging behaviors and can b embarrassing in public. If they only knew how much it hurts and that I cry maybe they would try to include us once in awhile. I'm gonna have me a gin and tonic w double olives and console myself like I always do. Thanks for sharing everyone. We are not alone....?!
Posted: November 07, 2014 at 10:48 PM
Reading the other comments, I see I am not alone in this difficult challenge in caring for a special needs adult.
My daughter has Down Syndrome. She is 22, non-verbal, lower functioning. The year before she graduated I did all the legwork in visiting every adult day care in the area hoping that when she graduated in 2014 she could transition easily. It is now October 2014 and I am still waiting. And the word is that I could be waiting months, or it could be tomorrow ( which I doubt).
She is so bored she began to eat her books. I had to take them all away from her. She needs to be with her peers and have some stimulation.
This should not be. We should have services immediately upon graduation and all should be helped that need it.
I hope we can create a better world soon.
Posted: October 21, 2014 at 2:02 PM
I am nearly defeated by years of fighting the system, from making sure my boys was safe in the care of the School District to not knowing why both my boys come home with unexplained bruises. I have reached out for help from State officials to Local News Stations to Harrisburg to Oprah and no one cared to get involved. I'm aging now and still have a hard road to travel and what I notice is that the government doesn't want people to know what's really going on to low income families with special needs kids. They flood the media with the negative side of poverty and welfare and sweep lifestyles like mines under the rug. I never abused or used the system, I was the lone parent popping up to the schools, requesting better treatment and education, every year asking for a IEP meeting to find the right schools but after consecutive years of "meetings " I noticed a pattern, School starts in September I request for an IEP, it's always scheduled in late January. I'm trying to get a transfer to private school and they trying to con me by saying "Well, it's only 5 more months of school and it's hard to find a placement this late in the school year, so let's pick this back up next school year..." When my youngest received a new diagnosis by a renown Dr. I just knew things would change because he was Autistic now, but no.. he never received Autistic support. I am so hurt so tired and left with the feeling of failure in the worst way, I couldn't save them from abuse, I couldn't afford an attorney to get them justice, they was in the care of the school and I couldn't proved who what or where. I have to travel around the city to keep proving their disability as if its going to mysteriously disappear. But I was given them for a reason... My autistic son and I went on a trip out of town with my mother's church and by the time we got there it was obvious that the church members was all that "saved" as I vented to my mother away from the group three members walked up, and out of nowhere I said "My child is Proof that God is alive, because all praises goes up Thanking Him that their child, grandchild is well, thanking Him that they don't have it hard like me". Well on our way back home my son was content and I bet Everybody went home and got on their knees to ask for forgiveness.
Posted: October 18, 2014 at 3:24 AM
I'm glad I found this site. It's very interesting hearing about others who are going through a lot of the same things that I deal with. I'm just trying to plan ahead for my boys future when school is done. He is a sweet soon to be 13 year old who needs constant attention. I worry about him 24/7.
Posted: October 15, 2014 at 6:51 PM
Care.com is good but ranges from 15 to 25 dollars an hour.
Posted: October 14, 2014 at 8:05 PM
I have an adult daughter, age 37, who has learning disabilities and schizophrenic tendencies controlled by medication. She has always had a part time job and lived at home, but she has not taken her meds consistently and as a result, is very moody and close to losing her job. I am 60 years old and retired and the only reprieve I get is when she's at work. I just can't have her live here 24/7 if she loses her job. She lies around, makes messes, watches television, and eats non stop when she's home. She has no idea what changes would happen if she had no income and no health insurance and no job. I want her in an independent living situation but don't know where to turn. My nerves are a wreck... Just venting now.
Posted: July 31, 2014 at 6:19 PM
Well, I wish I could solve everyones problems, but you see, I am a fully functioning 41 year old female with epilepsy, depression and PTSD. I also live in a group home with 11 other people-their mental abilities range from about age 8 to age 40 and everywhere in between. We have people here that deliberately urinate all over the toilet and expect others to clean it up, we have people that ask 'hi, how are you?' about 30 times a day, we have people that have no idea how to clean up after themselves, so the people who are more fully functioning get to do it, I know what I'm saying does not sound like much, but imagine, if you will, putting up with it 16-18 hours a day, 7 days a week. I have days here that I am surprised that I'm not in jail, and I'm not a violent person. I am glad I found you all, thank you for letting me vent.
Posted: July 24, 2014 at 2:03 PM
Joan B.
I have a developmentally disabled daughter 53 yrs. old, but her mental age is that of a 8 or 10 yr. old. She lives with me in a condo. I am 78 yrs. old and have mobility issues because of severe arthritis. She is in a day program for about 4 for 5 hrs a day to which I take her and pick her up. She has behavior issues as well....mostly attention getting bad behavior. I am desperately in need of someone who can come in and stay with her for a day or an overnight or two. If I want to go somewhere, I have to take her or I cannot go. I have 3 other daughters who all have their own families and their own lives and jobs and I don't get much help at all from them. Very disheartening for me. I am very lonely and at my wits end. I live in the San Gabriel Valley about 18 mi. east of Los Angeles. The respite agencies I have inquired about all are very expensive. Any suggestions????
Posted: July 24, 2014 at 1:09 AM
I also have a son who is downs syndrome but is at the level of a 3 year old in speech and a 6 year old with understanding. I stay home with him while his Dad is at work. It is very hard for those that have special needs adults. "Friends" try to understand but really do not want to do anything with him. Finding a sitter is very hard so we can do adult things with our friends. His younger sister sits with him once in awhile but she resents it. I have recently moved to another state and are having a very difficult time finding an adult day care for him. I had one in the other state that was great. He is bored and wants to go to stores all the time since he has nothing else to do. I hope I can find a place for him soon.
Posted: May 23, 2014 at 4:38 PM
gabriela rodriguez
I HAVE A special needs son and I m suffering a lot thinking what's gonna happen with him if I passed away. That's my concern.I love him a lot he is my baby. And I don't want that he suffer. Please need help to find a good special needs housing in los angeles ca or Pasadena, Arcadia ca.
Posted: January 30, 2014 at 12:03 AM
I have a 20 year old daughter who is very high functioning. My problem is she has started dating. He is physically abusive to her and is at this point in jail. She is in charge of her own finances. He has been unemployed the year that she has been seeing him. He has just lived off of her. I listen daily to how much she loves him even though he has put her in the hospital before. I am at a loss since she is over 18. I have no clue what to do. I just become more depressed every day.
Posted: September 15, 2013 at 12:00 PM
I have a 26yr old daughter who is basically non verbal. After many yrs of taking antidepressants & antipsychotic meds. (None of them seemed to help) we may have found out the true cause of her tantrums & difficult behaviors. On April 12th she started a new med. on the 16th she fell down a flight of 18 concrete steps, head first, on her back & then had a seizure. I believe the seizure was a side effect of the new med. At the hospital the drs did a CT scan & found the injury from the fall was a single fractured rib, however they also told me she had an intestinal malrotation. Apparently she would have been born with the rotation & it would cause every symptom we complained to her drs about for yrs! She had surgery to correct it last week but so far mentally she seems so much worse. I don't know what to do..
Posted: June 20, 2013 at 12:17 AM
Lehigh Valley, PA Kathy
I have a 23 year old daughter with autism. Shortly after her 16th birthday my husband died- very suddenly. Prior to his death my daughter was not eligible for SSDI because he made too much money. After his death my daughter received SSI Survivors Benefits. Now she makes too much money to qualify for any programs. I would love to send her to a day program but can not afford $2000.00 a month (more than her survivor's benefits). I was recently contacted regarding a waiver for her. Since she has been denied 4 times based on "income" I contacted her caseworker who informed me yes- she would be denied. I was contacted again and informed the waiver was not based on income but on need and she would most probably qualify since she does not talk, read, write and needs me to do everything for her. She was evaluated on Tuesday and I was told she most definitely qualified. Wednesday morning I received a call saying she did not qualify because her income was too high. I told her caseworker that if something was not done SOON I would be having a nervous breakdown! I love my daughter but we both need a break. She needs to socialize and so do I. Since I am also her legal guardian I have all expenses at my fingertips and can prove her income is far less than her expense each month. This Wednesday we will be proving this. If all goes well she will be receiving the waiver funds around July 1. I will never give up and neither should you! Our children deserve to live their lives to the fullest and to be happy. If one group says no ask another, and another, and another. Eventually someone will say yes.
Posted: June 03, 2013 at 11:37 AM
Photo of Linda P.
Linda P.
Where do you each live, I live in West Lawn,Pa. not sure if were are all in the same area?
Brandy, do you have a supports caseworker ?
My son is 32 total care & severe profound M.R.
He does have a "Waver Grant" that pays for services such as Dayprogram & help in our home.
I would be intestested in hearing more from each of you if you'd like to also
Thank you
Posted: April 11, 2013 at 12:20 AM
hey my name is brandy my brother is autism and adhd he also bio pole he is 24 years old my mother pass away in 2008 since then he has been live with our father my dad is sick now and they are both living with me i do not know what to do i have 3 little boys and he can not take it he say he want to hurt them and he can be very hard to deal with at time there is nothing for him to do where i live i have not found in program or nothing yet someone please help me i just do not know what to do my kids can even be by him because he may hurt them dose any one know what i sould do i love my brother he going thoung a lot right now and i just want to help him but my kids come first
Posted: March 29, 2013 at 2:40 PM
I am a mother of two wonderful young men. My older son is 28 yrs. old. He has special needs and lives at home. Although he
is physically higher functioning (has epilepsy, mild CP) his developmental delay is significant and isolates us both tremendously.
My heart breaks for him every day to see him so lonely -- for his peers. That seems to be the hardest part. He does not fit in anywhere. He has neurological impairment, but no label such as Autism or Down Syndrome etc.

Even at a young age, about 4-5yrs, my son has been painfully aware of his learning disability. Partly due to speech impairment which often brought on cruel taunts by children who did not understand. He would come to me in tears saying "they all make fun of me, I wish I don't have learning disability". It took a lot for me to not cry too and to give that pep talk we now know would been one of thousands. Did any of us know back then that it actually gets harder for these precious souls? So unfair...
Posted: December 02, 2012 at 9:44 AM
hello patricia i`m reading what you have written and i understand totally what you`re going through. i too have a child who i choose to say is special needs. she`s 22 but functioning mentally of a 7 year old. i try to give her the fullest life that i can but i myself feel so isolated and filled with anxiety. i`m so afraid to put her in a day program because of so many mean people. i moved from one state to another and here i have little to no support so it`s lonely for me, with my husband being in the middle east. i would love to bounce ideas and opinions off of eachother sometimes. i do hope that you start to feel less lonely really soon. you and your son will be in my prayers:)
Posted: June 06, 2012 at 6:41 PM
patricia donohue
i have a 32 year son, who is retarded. he is a home with three other gentlemen. my problem is i need support from other parents that are dealing with the pain and hurt of having a adult child with special needs. the loniless some times become unbearable. thanku, patricia.
Posted: April 02, 2012 at 10:29 AM
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