PDD and overwhelmed
We took my 27 month old to a nuro last week and left with a dx of Pdd-nos. He has a pretty bad speech delay. We have been using early intervention for about 6 months for a developmental specialist who helps with speech and an OT. We will now be seeing a developmental specialist, SLP and an ABA clinician. We would like to start seeing a private SLP and an ABA as well.
I am so overwhelmed with all these specialist and the cost of seeing a private center. I also feel like our days will be spent with hours and hours of therapy. I know this is what he needs, but I feel bad our days can not be spent playing at the park ect. How many hours a week are your little ones in therapy? Is it "fun" for them?
I just can back from a visit from a center, of course they dont take our insurance...yet. I could not believe the out of pocket cost, or the reimbursment costs if they apply. Of course I want what is best forn my son, but I will rack up thousands in no time. Any advice on insurance help?, they mentioned something about an ABBA (sp?) law? Any advice on finding private therapists?
I guess just any advice for a "newbie" to all of this would be helpful.
Thanks 
Jessica
Re: PDD and overwhelmed
Welcome!
My son was diagnosed with PDD-NOS and speech dyspraxia w/in the past 6 months and started out in EI as well.
EI (or Part C) goes from birth to three - you should be in contact with your coordinator soon to start transition. In my son's case he was deemed eligible for early childhood/Part B Services (ECSE). It took a total of four months (evaluations, meetings, etc) but he was accepted into a special needs preK through the public school system. He goes to an AM preK 5 days a week, in which he receives speech (and soon) OT therapies, all based on his IEP.
As for insurance, well, the general consensus is that it sucks. Though if you are in MA, you should google autism & insurance coverage - I thought a bill passed in the summer. We haven't pursued private therapies yet; we are still mulling this in addition to what he already receives.
And it's ok to be overwhelmed. We are all here to support each other.
The PDD-NOS diagnosis is so difficult because it is VERY misunderstood. In fact my Dev Pedi is very caution to give it because it often causes school to discontinue services because they don't understand it. My son would be PDD-NOS diag. but instead our Dev Pedi wrote out a long review identifying him as being on the autism spectrum but that we need to wait a few more years to properly classify him potentially with Asp. He says there are changes in the near future renaming/reclassifying the PDD-NOS diagnosis to help these kids get full service coverage.
Aside from that, have you looked into all the schools for students with delays in your area that could be covered by the county or state? My son goes to a special preschool funded by the county, ran by the school district that is absolutely AMAZING with him. I don't pay a single penny, they even bus him there. It was really hard for me to accept sending him off every day at only 3 yrs old (they have a program for 2 yr olds at a different school but I chose to wait because of that school's location). But once he started going, he loved it and they are so great with him. He have come leaps and bounds. I hear a lot of people here say they pay for private because it is the best, and it very well may be in their area, but I highly suggest looking very in depth into what is provided in the county at no cost to you. I know I have choices of other schools, but am lucky to have the best one close to me.
I am not sure how the laws read in MA, but if the PDD-NOS is under the ASD umbrella in your state, you may have a better chance at getting services covered by insurance. I know, it is ridiculous. Have you checked to make sure your insurance covers it? I know sometimes state laws have loop holes for self-funded plans to opt out of providing coverage. Check to make sure. We had to buy a private policy for my ds because we had one of those self-funded plans. It only cost us $165, but it beat the $2500 we were pating oop per month.
First things first, get a treatment plan in place-see the developmental ped about that. Go to https://www.bacb.com/index.php?page=100155 and find a bcba/bcaba in your area. If you want to go private, they can help you get that started.
We hired ds several private therapists, which most all come to his current mainstream pre-school. He is high-functioning, and does have language, so this was the best placement for him. We have one center in the area, but we decided not to go that route, because we wanted him to have down time and exposure and practice around typical kids. You just have to go with what you feel is best, and if you need to change, just do it.
We found private therapists through my bcaba consultant, word of mouth, going to www.abaconnections.com, and local groups in the area. Your insurance may have a list of covered bcba/bcaba/aba instructors on hand. Check that out with them. The two insurance companies we have had to deal with, both have "autism teams/specialists/caseworkers, that can guide you through the insurance process.
My ds is in about 20 hours of therapy a week. He still gets down time at school just to have recess and play with his friends. Weekends I do do some work with him myself, but Sunday's are therapy free, fun time for my ds. Really, he doesn't know any different. He doesn't realize yet that other kids like him don't go to therapy. There are days I feel guilty that he just can't enjoy just being a little kid, free of all of this. But, you know, this is just the reality of having a special needs kid. The earlier they get therapy, the better the progonosis later. That is what you have to focus on.
Feel free to pm me if you need any more advice. Good luck. This is a tough road to travel, but it is worth it.
I just want to say I know the feeling. We're still waiting for a diagnosis and have no services in place yet, but my pedi suspects we'll be looking at something like Aspergers.
A speech pathologist recommended that I use www.asha.org to find private speech therapists, so I've been starting there and at a local university's speech/language department.
I'm with you on the costs. It's pretty much terrifying. I'm trying not to worry too much until we get my DD evaluated by our school district and see what services, if any, she'll receive from them. Then we'll figure out where we need to and/or want to and/or can afford to supplement.
I'm no help on insurance. Colorado passed a law that requires plans who operate in the state to cover therapies related to autism -- good for them! Unfortunately, DH's company is self-insured and so they are not required to follow state law on that. Which sucks beyond belief.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
Thank you all so much for your responses. I guess I am just stressed because I feel the services we have with early intervention will not cut it, ( I have been less then pleased with them), but we need them to help him qualify for the IEP plan in the intergrated preschool in the fall.
I think they key for my son Jack is adding additional ABA sessions mixed with a SLP, now if I can just figure out how to pay for all this...
Does anyone recommend any books to read or helpful websites?
This is all very new to me, I feel like I have no where to start.
Thanks again, it is comforting knowing others understand. My friends with "typical" kids are being less than understanding.
Actually, in MA, EI will cover all the additional therapies and services attached with an ASD dx (including PDD-NOS). DD#2 was diagnosed with pdd-nos shortly before she turned two... she'd been receiving speech, ot, some pt and developmental specialist services through EI, and once she received her dx, we added ABA to her therapy schedule, eventually getting her up to about 20 or so hours. We also took her to private speech and OT therapists, which our insurance covered even before ARICA (the autism insurance reform bill) was passed last year.
So your first step should be to start calling every ABA service provider you can find (and there are a LOT!)... see who's got therapists available and start interviewing them... My EI service coordinator provided me with a packet, including a list of ABA providers that I could contact. I remember how overwhelming this stage was for me, but in hindsight, we live in a great state to have a toddler diagnosed with autism. School age is a different story- I'll have to get back to you on that.
If you have any questions or would like the list of ABA providers I worked from, please feel free to PM me. Off the top of head, I think Beacon , HMEA , and NECC are convenient to central MA (based on your city).
ETA: also wanted to say that I felt the same way you did- that I was robbing DD of her childhood by subjecting her to hours and hours of therapy... I just knew she'd hate it. Turns out I couldn't have been more wrong. She loved therapy and her therapists, and more importantly, the skills she learned in therapy allowed her to enjoy her childhood in a way she hadn't been able to before, KWIM? As for playgrounds and parks, as Sylvie began "outgrowing" some ABA programs (she was approaching 3 at this point), her therapists actually did some of her therapy sessions in parks, playgrounds, even the mall... nothing like working on generalizing skills with the expertise of a therapist at your side!
I don't have much advice on the insurance front. When ds was this age, we were in CA and got pretty much everything covered through medical (for disability). I'm not sure what the laws are in your state or if that is even an option.
As for the therapies, well, they did get a bit overwhelming. my DH is SAHD because of the time it took just to keep track of everything. At that age, I think DS had pre-school (parent participation) 3 times a week for 2 hrs per day, ST twice a week (45 minutes per) and OT once a week (45 minutes per). Still plenty of time to get to the park and the like.
When ds was 3, he was in school 5 days a week (5 hrs/day), ST twice a week (45 minutes per), OT once per week (45 minutes per), in-home ABA 2 hrs per day for 2 days per week. As he hit K, the in-home ABA was dropped (not by our choice) and we added integrated play group twice a week (1 hr per) and horseback riding. Plus DH would take him to the pool 2-3 times per week. They went to the park every day.
DS still goes to the park/pool/jumphouse/something every day, and he's now in first grade.
Which is a long winded way of saying, you fall into a rhythm and there seems to always be times when you can squeeze in social interactions even with a lot of therapy sessions.
Good Luck!
As for books, I liked "How to raise a sensory smart child" for help with sensory related things. DH had a modified Floortime-type of training which he thought was very useful. I've also heard great things about Social Thinking by Michele Garcia Weiner-I know they are using this at ds's current school with all grades (not just special ed kids, but in pre-school, K and first for all kids) and people seem to really love it.
It's not related to any therapy treatment, but I found "There's a Boy in There" to be very cathartic to read.
Hi,
I see you're in Massachusetts. (I am, too.)
As soon as you have a DX on paper, you are entitled to enroll in what are called "Specialty Services." It's basically EI on 'roids. There are different agencies that service different parts of the state. Here's the list. Call one (or more) of the ones for our area and get set up.
https://www.eitrainingcenter.org/community/?p=service
You can generally get as many hours of ABA and Floortime-type help as you can possibly fit into your day, and you pay NOTHING beyond the existing EI copay that you have already paid.
Good luck!!