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Dawn
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| Posted: July 27 2007 at 12:22pm | IP Logged
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I have a rather long involved post in me to share with you all, but all I have time for now is this quick question:
How many people (specialists) are treating your special needs child? How many different kinds of therapy is he or she receiving and how often?
I am particularly interested in knowing the therapy received by children who are on the autistic spectrum.
Thank you for any input. 
ETA - This isn't for an article or a blog post or anything like that - it is due to an insurance situation that has arisen in our own situation. Long story - will elaborate later. 
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Dawn, mum to 3 boys 
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marysjoys
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| Posted: July 27 2007 at 12:46pm | IP Logged
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Dawn, I know you were looking for answers from parents of autistic children, however, I recently participated in a study (phone survey) with Univ. of Rochester, which is exploring the hypothesis that children with Down syndrome sometimes exhibit autistic tendencies. I think Christina does. She is rigid about order and schedules, can play alone for hours, avoids crowds and noise, and sometimes bangs her head when she is upset.
Christina (age 5) has received PT since 2 months of age (see post ). Next came a Special Ed teacher, who does a mixture of the others therapists, an Occupational Therapist, and last, and most difficult to get approved was the Speech Therapist. They usually treat less than one hour, which is a good thing since a five year old's attention span is short.
I did send her to preschool for one year at three, but was not impressed with her improvement, and felt uneasy about sending a non-verbal child into strangers every day. Christina liked the school, but doesn't seem to miss it, and she is doing well at home with her therapists.
The reason I sent her to preschool, which was only 2 1/2 hours a day, was to get all the therapies done in the minimum time, instead of tying us down all day, waiting for appointments, or missing one if we got home late from a homeschooling activity. Plus, the teachers insisted that she would run away from them less in a school, as she has had issues with resistance.
This summer, she has largely overcome the resistance, and welcomes her therapists, sitting right down to get the job done.
Next fall, she will attend PT, OT and Speech in bac-to-back sessions in the local public school. These therapists are treating her at home this summer to help her transition next fall.
We are still working on potty training, which, if I change my mind, I can use as an excuse NOT to send her to school even those two days. You might be aware of the INTENSE pressure put upon special needs parents to send children to school. It's based upon the HUGE amont of income garnered from Federal Funds. I will B]notsend her to the Special Ed or regular Kindergarten, however.The teacher is a single man who has no interest in children that I can see.
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Mom to three lovely girls, Gabby, 13, Bella, 9, and Christina, 5 who has Down Syndrome.
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KC in TX
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| Posted: July 27 2007 at 10:17pm | IP Logged
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Dawn,
My son who is high functioning, receives 30 minutes of speech, 60 minutes of OT, and 30 minutes of physical therapy 2 times a week. We hope to start with ABA therapy as soon as the paperwork goes through for the extra insurance money.
Here in this school district (I'm afraid I don't know as much as I should), we don't receive any services. All of his services are paid for by the insurance company because the school district does not provide services to homeschoolers.
We also receive an extra $2500 in services beyond that through a program that used to be Persons with Disabilities (military healthcare program)--this will pay for ABA therapy.
The OT is almost becoming not helpful but we will continue on because the therapist is very good with coming up with solutions regarding his sensory issues. The speech therapist has been awesome teaching LB how to communicate and the OT and SLT work together to put on a social program once a month. The PT is for the weak/delayed gross motor skills. ABA therapy will hopefully help us with behavioral issues that I've finally concluded I need professional help with (nothing major--it's just that somethings need to change and what I'm doing is not working).
Sorry, didn't mean to write a book. PM me with any more questions.
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wife to Ben (10/94),
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Michaela ('01)
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And, my 2 angels, Rose ('08) and Mark ('09)
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Angel
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| Posted: July 28 2007 at 8:27am | IP Logged
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Hi Dawn,
G. has never been diagnosed on the autistic spectrum, but certain autistic behaviors come bundled up with TS. (He didn't have a diagnosis of TS until about a year and a half ago, though, so any therapies done before then were kind of on "as-needed" basis.)
At age 4.5, he had about a year of speech through the school system, 60 minutes a week. At the end of the year, he was dismissed from therapy because he would be in kindergarten the next year, and the elementary school wouldn't enroll him in their speech programs because they said his remaining articulation difficulties wouldn't be treated until he was 7 or 8. We disagreed with this decision, but our insurance didn't cover speech therapy so we were really at the whims of the school district.
Around this same time, he also had physical therapy once a week for 45-60 minutes to deal with gross motor delays, and occupational therapy 1x a week for 60 minutes to deal with sensory issues. Our insurance *did* cover both of these, so these were done at a children's hospital. We could have had OT done through the school system, but I didn't like the OT's emphasis on cutting with scissors as opposed to helping the sensory issues. (Then our speech therapist decided she would try to combine his speech with sensory therapy, and THAT was a disaster.)
After G's TS diagnosis, we took him for a battery of educational testing (which was very expensive, but I think probably worth it in the long run as we found a very experienced tester) which has resulted in another round of therapy recommendations. He just finished several months of vision therapy, which has been VERY helpful to his reading and for his attention span, but it was also expensive and not covered by insurance (although we are still investigating this.) He was also recommended for OT (fine motor problems) and PT (still having gross motor problems) and auditory testing to possibly uncover CAPD (Central Auditory Processing Disorder) and because at the time he was still having problems with his articulation (although that seems to have resolved on its own, and I think that the problems he was having at the time of testing were the result of tics.) I tried to follow up on the OT and PT last summer when we were finishing up PT with the twins, but couldn't get anybody to call me back -- very frustrating. With the distances we have to travel, I find that I have to stagger his therapies -- we just can't be in the car that much -- and his low tolerance of frustration makes multiple therapy sessions over the course of a week difficult. For better or for worse, we kind of spread them out.
I guess I should also mention that for several months last year G. also saw a psychiatrist once every couple weeks for behavioral issues related to TS. Looks like we *may* be headed back there next month as well. Those visits were covered by our insurance.
So there's our therapy saga.
--Angela
Three Plus Two
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rivendellmom
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| Posted: July 28 2007 at 10:09am | IP Logged
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My almost (next week) 2 year old has SPD. He gets 2 hours of OT each week and 1 hour of speech per week. We get this through the early intervention system that our state pays for.
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Jen
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Taffy
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| Posted: July 28 2007 at 12:20pm | IP Logged
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Well, we started things out trying to get all sorts of therapy for our oldest with PDD-NOS (LogoBoy). Sadly, we've become very jaded by what the professionals offer as a result.
After receiving a diagnosis at age 3, we were put on a waiting list for early intervention. After writing a letter to the early intervention people who asked if they could forward it to our MP (Member of Parliament), we were able to get our son into their early intervention class from April to June (we waited 6 months to get in). We had to move at this time. We tried to get speech at this location and were bluntly told by the speech therapist that she couldn't help because LogoBoy wouldn't talk to her.
When we moved to our current location, we were told that they had an early intervention program in place. This was untrue and they were clearly overwhelmed by our son's difficulties. He entered their early intervention program which was run in a local daycare. He made some gains there but they were short-lived - the director kept shuffling him to different staff members as helpers and expected him to be able to handle the noisy environment. At the end of the year, our son would be crying as we pulled up to the door and it would take me about 10-15 minutes to convince him to go in. Speech and OT were supposed to be provided there but in reality it didn't happen.
We started "homeschooling" the next year. We couldn't find anyone to help with speech. We did see an OT who specialized in sensory integration therapy and was very helpful. Unfortunately, we had to drive 500km (about 300 miles) one way to see her. This we did anyway, every two weeks, for about 10 months.
Since we live in a very rural area, the only way to get any services locally is through the school system. This we tried again as LB entered kindergarten. The staff were untrained, the school had trouble getting a competent teaching assistant, and there was very little progress made. People tried to help but their help wasn't very useful and LB's behaviour problems started getting worse. Fed up with the poor speech therapy he was getting at the school (the speech therapist, who said she had over 5 years of experience with autism, had never even heard of ABA when I asked her about it) we thought we were fortunate to find a private speech therapist in the city, about 200km (120 miles) away. We went once a week to see him - it was helpful for about 4 months, then the speech therapist obviously lost his ability to get LB to interact with him. Another dead end.
Finally, we gave up on the school system and brought him home at Easter 2005. For the first year, I had help from the special ed department in finding ways to help LB. Last year, this stopped - probably due to school board restructuring. So we have been entirely on our own.
Currently, all of our "therapy" has been homemade. We have been using the Listening Program to help LB with his sound sensitivity issues. I've been using a CM philosophy of teaching to help him with sharing ideas and narrating - very frustrating but hopefully worth the effort. We've started using the Association Method to help him with his "word finding" or aphasia issues. It's proving very helpful, even though it is tedious. And we are currently starting out with RDI (Relationsip Development Intervention). We aren't using a consultant at this point, although we hope to in the future. RDI is essentially done by the parents and family, with a consultant to act as a guide.
LB is also taking therapeutic riding.
Sorry to be so long-winded. LogoBoy's issues with PDD-NOS are very heartbreaking for me as we have struggled so hard to find ways to help him and have been very unsuccessful. I constantly struggle with the notion of moving to a different province as Saskatchewan has one of the poorest services for autism treatment in Canada. But, financial issues keep us here and we simply have to keep doing the best we can for him.
Thanks for letting me vent.
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Anneof 5
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We are just beginning our first ever therapy with 2 of our dc. Both ds8 and dd6 are receiving sensory integration therapy with an OT at a private clinic. They both have different kinds of sensory difficulties, but ds has 1 hour of therapy a week (for up to 6 mo) and a 1 hour handwriting class a week. He only has 3 weeks left of the hw class (not covered by insurance) and then we will decide if he needs another day of therapy or not. DD goes twice a week for 1 hour at a time of therapy which will probably last 12 months. Our insurance covers this at 80% with no limit on how long they need to go. So far we haven't gotten a bill yet but I am curious how much this will end up costing. I am also interested and probably expect that they will end up finding other concerns that need to be addressed also. DD and ds are both adopted and I just spoke with another family at our church who were very helpful with advice and concerns with what their kids have gone through (they are both teens now and were also adopted). This is all new to me and I feel like all I have been doing all summer is reading about Sensory Integration Disorder and searching for ideas on how to teach these kids this fall!!!! I feel like I am going to be burned out before school even starts. I am glad to do it but it seems to be taking a toll on me physically and mentally.
Anne
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Dawn
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| Posted: July 30 2007 at 6:59am | IP Logged
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Thank you, everyone, for sharing your stories with me. They have been immensely helpful to me, and I am feeling much better today than I did on Friday.
I know I'm not going to get the time I need right now to tell my whole story, but I'm going to start and hope to be as concise as possible.
The main thing is, today I need to call the pediatrician's office to ask for a referral for either (or both) a child pyschologist and a developmental pediatrician. Someone who will "oversee" the "global development" of our Earlybird (5 1/2 with PDD-NOS), meeting with us (and evaluating him) once or twice a year to be sure all his needs are being met.
This came about because our speech therapist got a call from the head of the speech department at our HMO last week questioning EB's treatment program. Basically before she would authorize further insurance coverage, she wanted to see a few things happen ...
Let me backtrack ...
EB was diagnosed with PDD-NOS in November of 2005. (After a horrible evaluation with a particularly unkind developmental pediatrician as well as a speech therapist (the one who placed the call to ours) and a social worker. The latter two women were pretty nice, but the DP was so cold and basically just flat out said we *had* to put EB in school for 25 hours a week and that would be the only thing to do for him. I wouldn't even speak to her, but I did talk with the social worker and tell her we would not be following that course of action. She was very open to homeschooling and said she knew people who hs'd special needs kids. She still wanted us to contact the school and have them evaluate EB and then offer us an IEP of "services we could pick and choose from cafeteria-style."
Well, I had advice from several local homeschoolers that it was best to stay under the school's radar as much as possible. If we had him evaluated they might make a case that the best place for him *was* in school. If we signed an IEP they could argue that they could not OK him to be homeschooled down the line. etc. etc.
So we were prepared to go the private route.
He began speech with an HMO therapist in December 2005 - he continued with her until May 2006. Once a week, 45 minute sessions. SHe had a small office and wanted to do "table work" with him. He almost always rebelled at the tight confines of the office and being put upon. We were paying a $20 copay for each visit.
In the meantime, in February 2006, EB started OT at a nearby facility. His OT was *awesome* and the general environment of this place was so great. He had room to play and run around and activities to do. His speech did much better there too, even though he wasn't getting formally treated for speech by his OT.
Well, this speech therapist suggested I find out if our OT facility offered speech. And I did, and they did - one-on-one speech and small language skills groups. So she told me she would write a referral for us to continue EB's speech there, because he could be "co-teamed" by a therapist who could see him one-on-one and in a group setting. We agreed this would be great for him and I was relieved to get all our treatment at one place (which is only a 10 minute drive from here).
When he was evaluated last summer to begin speech with the new therapist, they said they wanted him in at least 6 months one-on-one therapy before he'd be ready for the group setting.
SO ok. He started speech and continued OT. OT once a week for 45 minutes, ST twice a week for 30 minutes each session.
I should say that we LOVED his therapists and this facility. Kind, loving and really, really good. EB has flourished.
In November, his OT suggested taking a break from OT (as he had met her goals for the time being) and to concentrate on his speech. So we did. She said maybe we could check in mid-year (meaning just about now) to see if he should come back to OT.
(By the way, OT was covered for 60 consecutive days - during which time he went twice a week. After that we had to pay full and we only did once a week.)
So we've been doing ST for 2 30-minute sessions a week all winter spring and now summer long. The language group never got started (or started without him because he was not ready) and I had it in my mind to insist that he get into one this fall ... when the phone call came in last week from the HMO asking why he wasn't doing the things that had been suggested or supposed (the group, other services). Her main concern was that a 5.5 yo PDD child - who is not in school - was only having twice a week speech and not receiving any other services.
The therapist calling to question our ST was thankfuly, very nice and said she wanted to work with us to make this work. Out ST let me say for the record has been a God-send. She spent so much time with this woman talking with her, familiarizing her with our case, that we home-educate and do not want school services, that EB is doing great. But, she agreed that he needs to have more than just her and me as his "team leaders."
I am going to try to wrap this up because I know it is crazy-long at this point. 
It is suggested we begin OT again - which my dh and I agree would be good - so I have an appt. to do an "intake" on the phone this afternoon to get that ball rolling. (His old OT is no longer there so we'll see someone new, but everyone there is so great it will be fine.)
His ST has informed me she is starting a small group of spectrum kids "social-language skills" play group this September. EB is first on the list and will do this once week.
So he'll be doing OT once a week, ST 2x (once one-one one, once in social group) and of course, learning at home (still working on what curriculum to use).
The OT won't be covered, we'll have to pay out of pocket. (We just paid off our van and I see now where that $ is going.  )
The ST *should* be covered if it is done in the way they want - a private/group blend.
EB has not had any PT but I think I will ask about it - see if it is something that would help.
(Could someone explain the difference between OT and PT?)
Now the thing is they want me to set up an appointment with someone (child psychologist/neurologist/developmental ped. etc.) who will evaluate EB and see him once or twice a year to monitor the overall global program.
So that's where we're at.
At this point
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Dawn, mum to 3 boys
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Dawn
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| Posted: July 30 2007 at 7:01am | IP Logged
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Oops, EB posted my message before I was ready! But I see how long it had gotten and I will have to leave it at that. Thank you if you are able to read through it all (or most of it  ). I will try to post again later today and finish up my thoughts.
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KC in TX
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Dawn, wow, what road we all must travel sometimes, huh?
Anyway, OT works on fine motor skills (mostly work that will help him in his work which ends up being school (writing) and play) and sensory issues. PT works with strengthening for my son. His core muscles and overall muscle tone is very weak. He has trouble sitting with good posture because his muscles are so weak. He has a big C curve in his back when he sits. He can only sit with a ramrod back for a few seconds before it gets too difficult muscle wise. Also, the PT really works with his gross motor skills (dribbling a ball, walking a balance beam, etc.)
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KC,
wife to Ben (10/94),
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Michaela ('01)
Emma ('03)
Jordan ('05)
And, my 2 angels, Rose ('08) and Mark ('09)
The Cabbage Patch
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Angel
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| Posted: July 30 2007 at 9:25am | IP Logged
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Ugh, Dawn; I think your post hit on many of the issues I am afraid of if I let the school system know that G. is a "special needs" student. (For the record, everything I have heard about our current school district's special ed programs is bad.) *Can* your school district insist that you put EB in school, though? I mean, is it even legal?
I have to go get a bunch of distracted hyperactive kids out of the hallway and get them going on chores right now, but I will try and pop in later with some more thoughts. I did want to add that we pursued PT with a referral through our regular pediatrician, though. Like KC said, PT deals with the gross motor stuff. For instance, G -- like many kids with TS -- has great difficulty with motor planning and coordinating both sides of his body. We couldn't figure out how to teach him to pedal a bike on our own. He has also has a general lack of muscle tone, so his PT involved strength exercises, particularly for his arms. He also received therapy for tight hamstring muscles that didn't allow him to extend his legs properly. One of his feet still turns in toward the other and it has been suggested to me that this is a problem with his hips. After the baby is born I hope to get his PT started again, but at his age all this therapy is getting to be a sensitive business, as I don't want him to feel as if he is continually in need of being "fixed up."
The OT he's done has been for handwriting (grip) and sensory issues, such as dealing with noise/texture/temperature, etc.
--Angela
Three Plus Two
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Willa
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Ah, Dawn, it is not an easy road.
Aidan (who is CP but by his behavior would be classified as PDD/autistic if he didn't have the other diagnosis) receives OT, PT through regional agencies and speech through the local school. Once weekly for OT and speech, once a month for PT.
We don't have a behavioral psychologist -- yet -- though I've considered it several times. He does get a yearly psychological evaluation through the regional agency.
I've never had experience with school system forcing into school. The only major pressure we got was when he was three and transitioning from Early Intervention. They really pushed to get him into public preschool. Our local school system doesn't really have resources for a complicated kid, though; he ended up receiving Homebound Headstart services until age five and since then he's been homeschooled.
Every once in a while I discuss with his therapists whether to enroll him as an independent study pupil so that he could get some reading and learning resources and help through the school. Right now, since he is not enrolled, there is little motivation for the school to provide services beyond speech. So far I like the freedom and feel he is on track academically for his developmental level, so I've never seriously pursued enrolling him as a homebound student. But you know, the school does have an obligation to provide the Least Restrictive Environment through the IEP and if a mother is willing and competent to provide home study environment I think it would be difficult for the school system to argue that the school system would be a less restrictive environment than the child's own home.
LRE and homeschooling
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Willa
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hopalenik
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Hi,
I saw this post. Although my son does not have autism we have had to use developmental services for Josh on and off since birth. Insurance covers Joshua's speech only because -he is partially deaf in both ears and he had medical intervention in the form of an NG tube at birth. We had speech covered for the first 2 years of life because of the NG issue. His brief encounters with OT were covered because he had all kinds of Pic lines and IV's in and out for the first 5 years....the OT wrote up that this might have caused nerve damage and therefore the slight delay in pencil grip. So in short, if you can find any way to get therapy issues covered medically, the insurance should pay for it but they probably don't if it seems to be developmentally related.
Holly
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4Real Forums : Special Blessings
Topic: How much/what kind of therapy?
