Parenting: Friends Talking Community

Is there an autism support group in your area?

Who referred you to the special needs pre-school and various therapies? Is there a social worker involved? Do you meet other parents there?

I am a social worker at one of California's regional centers and have many autistic kids on my caseload. If fact, I love them.

What state do you live in?

We live in Indiana.

I do not belong to a support group of any kind. I do not know any other parents with Autistic children. We had a social worker but insurance wouldn't cover the visits anymore.

We were referred to the special needs pre-school through our local head start program that she was involved in when we learned she was not developing normally, it is not really a special needs school it is a pre-school class ran through the public school system. She has an IEP and that is all it is.

I love her and want only the best for her and the rest of my children just not sure how to provide the best care for her and the others. I am scared and alone, other than my husband, I have no one to talk with or have help. If you can suggest anything I am all ears and eyes.

Oh my goodness. You and I are in very similar situations. I also am a mother of 4 children. My 3rd child is a girl who has autism. She was diagnosed right at age 2. I was already pregnant with baby #4 at the time. It was so terribly traumatic. She didn't speak at the time she was diagnosed, but she speaks beautifully now!! Therapy works. We are also on "the diet" - have you heard about the GFCF diet? It's definitely worth a try, even though it's very hard to get used to. But it has helped clear my child's mind so she can learn. The most important therapy we have gotten for our child is ABA - Applied Behavior Analysis. I hightly recommend that you research it. Your insurance probably won't pay for it. Nor will your state - but check anyway. We pay for it out of pocket (and drive really old cars!) but it has rescued her. She has also been prayed for by so many people so if you are in a faith community, I highly recommend that too. Feel free to write me back & God bless you on this journey.

I feel for you! My son was diagnosed with Autism in December. He has been in the special needs preschool through our School District, receiving speech and occupational therapy. I also take him to a speech and hearing clinic at the University in my town. He is doing so well and making so much progress. Our son has been prayed for as well, and that's when we really started to see progress. Since the diagnosis, I have been able to be more patient (knowing he has a real problem and wasn't just acting out or being ornery). Life can be crazy at times (I have 5 children), but it is good too. A child with special needs can be a challenge, but they can bring you so much joy as well. It is so exciting and rewarding to see them grow and improve. Your other children have the opportunity to learn acceptance and compassion for those with disabilities.

I was very overwhelmed with the diagnosis too. I was (and still sometimes am) confused and exhausted also. It almost feels liked being suddenly dumped, alone, in the middle of a desert wasteland and told, "Good luck"! I think what really is difficult is that with Autism, no two kids are alike...they are all unique in their strengths and problems. There's no "one size fits all" treatment. As a parent, you have to be the advocate and sort through all the information and figure out what does and doesn't apply to your situation and your child's needs. It is a daunting task, but YOU CAN DO IT!!!!!

The best thing you can do to start out with is to read everything you can get your hands on. I started researching online, and I have bought several books. The first book I read, which I thought was extremely helpful to me to understand what my son is going through, is "What every child with autism wishes you knew" by Ellen Notbohm. If you can't find it locally at a library or bookstore, you can get it online.

Be careful with books and websites...there is good and not so good info out there. Some websites to start out with that could be helpful to you are autismspeaks.org, Autism.com, Autismndi.com (this gives info about the Gluten/Casein free diet). I haven't even started any kind of special diet with my son yet. I'm trying to take things one step at a time.

Also, check out the National Autism Society of America...a friend of mine who also has a child with Autism belongs to the local chapter in our town which has monthly meetings that I'm going to start going to. If you go to the website (sorry, I don't know the exact address but you can try googling it) you might find there is a chapter in your town. You could also check with your daughter's Pediatrician or your local hospital to see if there are any support resources in your area. Check out these websites, and also look into the ABA approach. There are different variations on this treatment approach, as well as other completely different treatment approaches. I just bought a book called "Pivotal Response Treatments for Autism" by Robert and Lynn Koegel, which involves ABA treatment, that looked very interesting and promising (I just got it recently and haven't gotten past the first chapter yet but it was highly recommended). Follow your instincts...you will be able to know what's best for your daughter. Good luck on your journey...like the friend I mentioned above said to me: "You'll learn all sorts of things you never knew you wanted to know"!!!! Things will get better. Take it one day at a time. Your daughter will make progress (sometimes slowly, sometimes quickly) and it will be such a wonderfully rewarding and fulfilling feeling and experience to witness!!!!!!!

Thank you for your response, I have felt so very alone this last year or so, I mean I always new there were other parents out there like myself, but I never really spoke with any or new how they deal with this.

I live in a very small community with very few resources and I have looked for groups and have found none. I do have a small faith community and all do pray for all of us.

I have seen a small change in her social skills and tolerance of outings, that has been wonderful to see. I have seen no change in her communication skills though. Is this ABA the same as regular behavorial therapy? The childrens hospital in Indy has that but I have not heard of ABA. I will look into it though, others have mentioned it. I have not heard of "the diet". What exactly is it meant to do for the child?

I am now concerned with her education, here where will live they do not have special needs classes beyond preschool, at this point when she is to enter into Kindergarten they will place her in a normal classroom setting with a teacher and 20 other students. I do not feel comfortable with this, she has issues other than no speech, she likes to take off her clothes, she lays in the floor and rocks to self sooth and hast tactile issues, I do not know that this will go over well, the school she is to attend has never had a child like. I have children who are "normal"{as they can be} and I do not think it fair to them and others to have a child like her to disrupt the teaching and learning process and it is not fair for her to not have the direct interaction that she needs. Sorry just venting.

From one mother of 4 to another they are all a joy and a little stressing but enjoy them they are only little for a little while and well worth the time and concern, thank you for the information and God bless you and your family.

Thank you for the resources. I have been online but there is so much to shuffle through it is almost as overwhelming as dealing with the diagnoses of Autism itself. I will definitely give a good look through these as well.

I am stilling feeling very alone, I have tried to find a group or therapist in my area for her or me for that matter, I called several and was told "sorry if she doesn't talk I can't work with her, or she is to young". I have not tried the hospital though, I will check there.

I have enjoyed watching the small changes she has made socially and dealing with the outings we have to make. I would love to hear my little girl speak, she makes sounds but not words and none of the sounds seem to stand for anything, I keep talking and repeating sounds for her hoping it will help.
I figure she will either keep me young or make me old faster than I thought, either way I enjoy her and the others as much as any parent can and only hope for the best she can be.

When you mention a "therapist" in your second paragraph It sounds like you are talking about a psychologist/psychiatrist...?!! A therapist could be helpful for you to help you cope with the stress of life, but your daughter doesn't need a therapist to talk to, she needs a speech language pathologist/therapist to help her learn to talk. I would think that the speech therapist working with her at her special needs preschool would be able to refer you to a speech pathologist/therapist in your area who can give her extra help in addition to what she's getting at school. If not, the speech therapist at school should at least be able to tell you what to do at home to supplement what is being done at school.

If there is no Autism support group in your area, maybe you should try starting one yourself. With so many children being diagnosed these days, you can't possibly be the only family in your area dealing with Autism. Go to the "National Autism Society of America" website to look into starting a group in your area. Are there no other children with Autism in your daughter's special needs preschool?

When it comes time to start your daughter in Kindergarten, you should talk to someone at the Administrative office of your school district...Where I live, children with special needs have one-on-one aids (or an aid who helps several children in one class). My state is one of the bottom 3 in the Nation for education spending but they still provide aids for the children who need it. Surely your area must have SOMETHING. They can't expect children with severe disabilities to attend a "normal" classroom without some help. Maybe you can fight to get an aid for her.

This is an extreme suggestion, but you might even want to consider looking into moving to an area that actually has some resources which will be more of a benefit and support to your daughter and your family.

Ok, I am the type of social worker that provides case management and the govt pays me, not the parents.

There are so many autistic kids all over that you should be able to hook up with some of their parents and share companionship, ideas and resources.

I have met so many lovely, wonderful parents (and kids) in my practice.

I'm sorry it took me so long to reply. If you really are in an isolated area, I would recommed moving of at all possible to where more resources are located.

Have you tried the Autism Society chapter in your area? Go online, contact them and then network.

Austim Society Indiana Chapter
4740 Kings Way Dr. Ste7
Indianapolis, IN 46205
(317) 695-0252
(317) 919-2772
email: info.inautism.org
www.inautism.org

Also the Autism Society of Indiana has a Facebook page. Facebook is fun and signing up is easy. You can keep your information priviate but you will be able to meet online parents form all over Indiana. Check it out!

I know I am a little late on this discussion but I joined the Autism Speaks Social Network and have received a lot of support especially when going to my 3yr old son's first IEP. They also have a great 100 Day Kit that you can receive for free after diagnosis.

I have a son who was originally diagnosed with ADHD and Bipolar, and eventually given the diagnosis of Schizoaffective disorder. He is clearly on the autism spectrum as well; this has only recently been recognized for what it is. While he had early speech (he was speaking in compound sentences by 20 months), much of his speech was almost a language of his own that only his father and I could fully understand. We had to do a lot of interpreting for him until he was about 3 or so. Some of his speech had autistic characteristics as well (e.g. he referred to himself as "you" instead of "I" until he was about 4 years old), and he needed speech therapy once he began kindergarten. He was always extremely sensitive and easily overstimulated.

Other autism spectrum features included hand flapping, running in circles for long periods of time, hyperfocus (people were already commenting on his unusually long attention span by 3 months), learning disabilities (he has dyslexia, among other things), central auditory processing difficulties, extreme difficulties with any change in routine, etc., etc. It is very possible that he actually has Multiple Complex Developmental Disorder (a combination of features of autism and symptoms of pychosis). This is a diagnosis that will probably be included in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders, which is due to be released in 2013.

He is an extremely bright young man (likely genius IQ), which contributed a good deal to his not being diagnosed with anything until he was in middle school. He is now 27 years old, and we are still trying to get him the services he needs. Unfortunately Washington state makes accessing these services quite difficult, particularly for anyone who was not diagnosed in childhood.

He has a 4 year old son who has autism and is receiving services. He has been getting speech and occupational therapy, and the case worker has been working with him and his mother in order to help her to interact more effectively with him. His behavior can get very difficult at times, particularly when he is very tired or frustrated. While he speaks now, he is at times clearly only aping what he's heard. Kids with autism learn very early on how to imitate, which results in them often looking like they are communicating more than they are. I know this from a former student of mine who says that her incredible ability to imitate and "act the part" played a huge part in her not being diagnosed with high functioning autism until recently. She is a year older than my son.

I suggest you contact the Department of Developmental Disabilities, as they should be able to assist you in receiving the services you need for your daughter. In the meantime, please get some support for yourself. None of us signed up for kids with special needs. And depending on the child, having autism may mean major adjustments in what she can be expected to achieve as she gets older. This reality is extremely difficult to take in for most parents, and requires a grief process in order to make peace with it. I continue to periodically grieve the possibilities my son will never be able to have because of his special needs. It is heartbreaking to watch a child as extraordinarily bright and talented (he is a self-taught musician who writes music and plays piano and guitar) as he is struggle so much just to manage a fast food industry job and take care of his own basic needs, while trying to keep his paranoid delusions at bay. Now we are watching his son struggle with even greater impairments.

I am frankly horrified that you were simply "given the diagnosis and sent on your way" when this is such a life-altering situation for the entire family. Please do check into the Department of Developmental Disabilities to see what services they can offer you.

I am about to run out of characters for posting this, so will send the rest in another post.

(This is a continuation from my previous post)

I believe it may be possible for you to get her placed on Social Security Disability, which would provide you with a bit more income and thus make some of the services you need more accessible. In addition, check with your Department of Social and Health Services (DSHS) regarding and Autism waiver through Medicaid, as this could give you extra support as well.

I hope this helps. You have a long and at times very difficult road ahead of you, and will need to advocate for your child a great deal. I am a firm believer that it is no accident who ends up with a special needs child, as I believe that the Universe places these children with special parents who have the ability to parent them well by going the extra mile and working hard to understand and respond to their child's needs.

Hang in there. As much of a challenge as this is, I have found these children (and later adults) to be extraordinary people who are able to teach the rest of us a lot about our world when we can look at it through their lenses.

Thank you for your response and insight into another part of this that most of the time I try not to think about, adulthood. She is only 4 and I don't know how we are going to make it to adulthood, I try just to focus 1 day at a time.

I was not aware of the Department of Developmental Disabilities. I will be checking into that. Thank you.

We have her on the waiting list for the Autism waiver but the wait is like 10 years, and she receives SSI. It is not so much the cost of her disabilities that is our problem, it is the availability of help and services in our area, she is in a special needs preschool class but they only offer speech therapy once a week and nothing else. I am not able to find a therapist close to our home and other than that I am not sure what else I should be doing with or for her. I have read so many things online from special diets to oxygen treatments that I am not sure what actually works and doesn't and I feel so lost. I have contacted different doctors around my area and they either tell me she is too young or they can't help me because she doesn't speak.

I know that there is no forsure cure or plan that works for all children, but a good guideline would be nice, she really enjoys water, but I cannot find a water speech therapist anywhere, hu hu. I think she would enjoy and make progress if there was though

I know that I am doing all I can with what I know but I don't know near enough about her condition to be helping her, I know the road will and is long, but I want to feel like we are atleast traveling down that road to a goal of some sort.

I wish and hope only the best for you and your family and thanks again for another resource.