New here & feeling overwhelmed
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| Sun, 07-17-2005 - 8:42pm |
Hi Everyone,
I am so glad I have found this board. I have a daughter who is 3, almost 3 1/2 who was diagnosed with PDD-NOS at 31 mos. She had been receiving therapy though E.I. up until she was 3 at which point services stopped. Since then Meghan has been in an integrated preschool program through the public school system and receives speech therapy 3 x a week including during the summer. I guess my concern is how do you know about all the help/services out there available? Where do you go for answers? I am beginning to feel like school is ok but perhaps she needs more.
I have so many questions I just don't know where to turn for help. For instance, I was told two different things about letting her "spin". One said do not let her to stop her & the other said it was ok & stimulating for her. If there is a song on all she wants to do is spin. What do I do? Are there any organizations out there that provide parents support? I feel like I am drowing & don't know how or if I can help this child. I also am struggling with feelings of guilt & even anger ever since she was diagnosed. Potty training is an ongoing stress & I feel like it will never happen. Sorry to ramble but I am hoping some of you can shed some light & advice. Thanks.
Maria

Hi Maria,
I am Cathy. I have a just-turned-4 DS, Jack, who is PDD-NOS. I am sorry you are going through a hard time. I have been there. I know it hurts. It hurts a lot. Everything you are feeling is normal, and you are certainly allowed to feel it all.
I think my best advice would be to get a good outside evaluation, and from that you can better determine if her school placement and therapy is benefiting her. Jack sees a dev. ped. every 6 months. You can try and get the school district to pay for it.
We don't let Jack stim if we can help it, on the advice of the dev. ped. She advised that we step in and "break the cycle" so that he doesn't get stuck on any one thing.
Have you tried finding ways for Meghan to spin that are more appropriate? Like that thing you find in the playground that goes around and around? Or a "Sit and Sping"? We have a therapy swing in our playroom and Jack seeks it out and spins himself (he's not normally a spinner under his own power) but he LOVES it. We make him ask "Spin me!" etc.
Where do I go for support? I am fortunate in that I already happened to know a couple of local women who had older autistic kids. I have met more, too. There's no one like someone who has been in your shoes. You'll find it here, too.
Have you met any of the moms in Meghan's pre-school? Did they circulate a list? Jack's didn't, so I had the teacher OK it with the parents and I got the info and made the list and circulated it. And then I had all the info! So now of course we talk about the teachers and therapists, etc. and I learn a lot. We formed a "Special Ed PTA" also. (The school HATES that we're all friends and can compare what our kids get -- ha ha.)
Perhaps check online and see if there are any local support groups? (I don't know where you live, but I'd be happy to ask around).
There's one mom I am taking to coffee on Tues. b/c her DD was just diagnosed. I feel strongly that I must give back some of the support I have been given.
Hang in there. You sound like a great mom!
Cathy
P.S. I was where you are with potty training, too. (He *just* did it.) It will happen for Meghan -- I know, you don't believe me. I didn't believe anyone who told me it'd happen either! What worked for us was "trip training" -- we just started taking him to the potty every 1/2 hour or so and having him SIT there (easier said than done). Eventually, he just started going. Now he holds it til we tell him to go sit on the potty.
Hello maria.
I have 4 kids, 2 with Asperger's and one provisionally with ADHD/PDD-NOS though I think he is more straight ADHD.
My oldest was similar to what you describe. She is currently 11. She had all those supports in preschool and has done very well. She has been mainstreamed since a little into kindie and is going into a specialized Aspie program in middle school next year. She finally totally potty trained about 4 1/2 to 5. She started around 3 cause I insisted she had to cause that is when kids did, lol. She wasn't diagnosed yet. But really didn't get it on her own and stop having regular accidents until then.
On spinning, I am of the other side on that. I don't think it hurts anything to let them stim. I only intervene if it is interfering with what they are doing or if my son is way out there in his own little world. Sometimes it is good to let him be in his own mind and fantasy land stimming, but sometimes I need to bring him back to earth. Stimming helps them regulate themselves. It is often something they are craving sensory wise. It also will often happen in times of stress, etc to help them deal with it. Particularly as they get older.
When young they can use stims when they dont know how to play, to help when they are overstimulated, etc. Some things you can do to help with them is help teach more appropriate play or replacing it with a more appropriate sensory activities to meet the same need. For instance, she likes to spin when there is music. Perhaps joining hands and doing circles together dancing.
I will tell you 2 things. First, as my kids have gotten older their stims have gotten less noticable and less often (particularly Cait) and that most adults with AS will tell you that they need to stim sometimes. It helps organize thier brains.
Renee
Hi, Maria -- I am a newbie, too, and can totally relate to your feelings of being overwhelmed. My son, Calvin, is 26 months and was just diagnosed last week as PDD by a developmental pediatrician. She has recommended that he receive 20 hours a week of therapy -- all of which will come through EI. We will go back to see her every six months for the forseeable future to gauge how much therapy to seek out. I've heard it gets a little more complicated once you hit preschool. I'm still trying to wrap my mind around the whole 20 hours a week thing and get our ducks in a row for next year. I am going to start looking for a support group in this area. I need to start meeting parents of ASD kids and find out resources in the area. Our EI coordinator keeps telling me it all comes through the county, but I feel like there has to be some private services out there, too.
I know what you mean about the stimming thing. I don't know what to do, either. And sometimes I just can't stop it. Calvin spins wheels on cars -- particularly small toy cars. There is this toy car mountain at playgroup that is a total nightmare for me and I've actually even asked them to put it away if no other child is playing with it! :-) I just can't compete with it! Usually once it's out of sight, he plays with other toys and kids. ANYWAY, I know -- with bigger toy cars I usually can get him into a "roll the car to mommy" game. The only thing I can think of with actually spinning like your daughter does is for you to "dance" with her? I know that's not the appropriate behavior at all times, but it's a thought.
Anyway, I just wanted to let you know you are not alone in your overwhelmedness. I'm right there in the same boat with you, as are many other parents out there. I say we all go for a glass of wine. :-)
Kellie
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Maria,
Welcome to the board and big hugs to you. I well remember feeling just like you do now, and it was really horrible. It gets better with time, knowledge and the support of good friends, family and "virtual people" like us!
I don't know which state you are in, but depending on where you are, there may be outside services you can get help or support from. Some good places to check out:
Tha ASA (American Society for Autism) may have a local chapter.
The preschool -other parents, SpEd teachers and therapists have been a great source of information for me.
The local children's hospital.
Local community centers. Our local JCC has support groups for special needs and even some classes for special needs kids.
The Easter Seals.
Regional Center (in CA).
local TEAACH centers, if any.
A Local university. One of ours has an autism center where they do cut-rate evaluations and can offer you places on studies, etc.
Some books you may want to borrow from your local library (which may be another resource for you. There all all sorts of interesting leaflets in mine):
"The out of sync child" by Carol Stock Kranowitz -this explains a lot about sensory issues. Meghan's spinning soun sike a form of sensory seeking behaviour.
"The special needs child" (or maybe its "the child with special needs") , by Stanley Greenspan, MD.
Lastly; and mostimportantly, please listen to yourself first and foremost when deciding issues such as "to spin or not to spin"? You are her mother. You know her best and you also have a responsibility to yourself and the other members in the family. Do what *you* think is right at the time, which will probably be a mixture depending on the circumstances: -Sometimes you will let her spin, sometimes you will distract her. Knowing your child has special needs does not remove any of your decision-making powers as her mother. Persobally I think going all one way or the other is wrong, and life is a bit more grey than black-and-white.
My single biggest piece of advice: Follow your gut. My biggest mistakes have occurred whern I didn't follow mine.
Good luck, please stick around and let us get to know you better.
-Paula
visit my blog at www.onesickmother.com
Maria,
I used to work in EI and childhood disability research. My PHD is in child development. I have a 5.5 yr old son who is PDD-NOS but moving up the spectrum as we work hard on his skills. I run an in-home therapy program with my son that I have put together over the past 2 yrs. Most of what I learned about doing in-home therapy was learned from reading books that were written for parents of kids with PDD's and from watching DS's therapists work with him. I knew little about ASD's before I had my son.
I would recommend you read The Child With Special Needs by Greenspan and Wieder, which will introduce you to a play-based approach, called "floortime." It is great for young kids on the spectrum. You can get more info about floortime and support from online groups who use it at www.floortime.org.
I would also suggest you look into an approach called RDI (Relationship Development Intervention) by Steve Gutstein. This is a more detailed approach with developmental levels that you move your child along step by step. I have found floortime easier to impliment because it lets the child take the lead, but I also like RDI for it's structure. I tend to combine the two approaches, but you should start by learning just one, as it would be too overwhelming to try to combine 2 approaches from the start. RDI circles do provide good support and they are a great information resource. Check out their website at www.connectionscenter.com. The newsletter from the Connections Center is free and well worth subscribing to. Gutstein's book, Solving the Relationship Puzzle is worth reading to get a good understanding of what ASD's are. If you are seriously thinking of doing the program, after you check out the website and his book, you should buy the DVD, which is more up-to-date and packed with info on how to begin. The DVD will save you having to attend his more expensive workshops.
As for stimming, I tend to agree with the other Moms here. Some stimming may be o.k. for stress reduction and reorganization, but to let your child stim all the time, is probably not beneficial to her. In Greenspan's book, he tells you how to woo your child out of these stimming episodes and turn some stimming into more goal directed and interactive activities. One thing I could recommend that you try is to pick your DD up and try spinning her if she is spinning on her own. Have her face you when you pick her up. Try to turn this game into a game where you give a signal that the spinning is going to begin (maybe count to 3, and say "Spin"). You could also try singing a song to the spinning game. Try to get her to make eye contact and make the connection that you are signalling the beginning of the spin game. As you progress from this level, use more pausing to give her an opportunity to try her own signal on you. By doing this, you may be able to turn a solitary stimming activity into a truly social activity that she enjoys.
I found that the best ways to get my son to interact at this age involved chanting or singing and repetitive turn-taking games that he could easily anticipate. These games are much like what you would do with an NT 6-12 month old, but our kids are just getting the hang of such interaction, so they need to spend a lot of time practicing simple back-and-forth interaction games. This has nothing to do with intelligence, since I can tell you that my 5.5 yr old son reads with good comprehension at a 4th grade level, does 1st grade math, and is learning to read musical notation. My son is also quite creative, dramatic, and loving. Many of the other kids on this board are similarly gifted, affectionate, fun-loving, etc..
The early years were pretty hard for most of us on this board because at that point we did not know much about what we were dealing with and we felt very alone with our newly diagnosed kid. "Autism" seemed like a harsh word that only described the silent rocking child we occasionally saw at school in the "special class." Therapies and education have improved a lot since we were kids, and we are seeing many myths dispelled about these kids. I've droned on long enough here. Good luck and welcome to our board.
Suzi