Stressed Out --Need Advice About Best Therapy

You really should find a support group of families who are dealing with the same issues and look for advice and informaiton by what they have faced. Look into Yahoo Groups and just type in GDD or the full wording, supports groups do not need to be local but online people can be there for you 24/7.

My son is a preemie (he is now 6 and doing great) but my preemie group helped me daily with little and giant things (EI: I knew nothing about! so many things) what to ask, whom to ask where to look they can help you.

Good Luck

Here is one search
http://groups.yahoo.com/search?query=PDD-NOS&sort=rel...

Hi there,

My son has the diagnosis of PDD-NOS also and we did ABA therapy (we used Beacon Services). We started when he was two as well. I think we gradually worked our way up to about 21 hours a week. It seems like a lot, but it was broken up (some morning, some afternoon, etc.) so it didn't seem so bad. It really worked well for my son who started talking within a month or two of ABA. He is now 8 years old and doing very well. He is in an inclusion class and has friends. Looking back on it now, it was a big sacrifice for a fairly short period of time, but it has really paid off in the long run.

Good luck!

A. W.

Hello L., I read your concern as being whether your child would be overloaded with therapy and not enough time left over for her to 'play alone'. I would like to gently remind you that one of the discriminating characteristics of the diagnosis you offered is social interactions. Relating with others, beyond objects, is generally the biggest challenge for children with these diagnosis, and so structured play occupation may be the best thing for Lucy. I am a huge supporter of having children learn through exploring their environment, as indeed this is an important part of growth and development. It is difficult, I know, both as a therapist and as a mom with a child (now all grown) with sensory needs. Go with your gut. I am not a huge proponent of ABA, but then I haven't met your child. I lean more towards therapies such as SI and CST that deal with the body's subtle body systems ...but that is me. I have seen wonderful results from children working in a well run ABA class as well. You simply need to decide and then be 100% committed to it. Good for you for interviewing the different program. Feel free to contact me personally should you feel the need. Be Peace, N.

Hi L. -

I have been in your exact situation. My son was diagnosed with PDD-NOS at 17 months - he is currently 28 months. He was so happy, social and had excellent gross motor skills, but was nonverbal (and still is). I realized that with a diagnosis we could get the help from EI which was best for him. Let me just say, he has made tremendous progress.
Currently, he has 25 hours of therapy. This may not seem like alot when you think of an adult work week of 40 hours, but let me tell you - his days are full of therapy - when you add in meals and a nap. I was also hesitant about filling his time with therapy - he is just a little boy and I want him to enjoy his life - but he really does enjoy his therapy. We even have him in a integrated toddler group thru EI - so he gets to "play" with other kids.
His therapy includes speech, OT, Hippotherapy (horseback riding), ABA, and therapeutic listening. As the others have said, you will most likely need to find out what combination works for your child. ABA therapy has been great for my son. His attention level has grown and his fine motor skills have gotten much better. The ABA is done at his little desk, but they give breaks and then try to generalize the skills out on the floor. We have had great success with this. Some of his other therapy sessions happen on the floor, such as his speech therapy and all session are really just him playing.
Everything we do is covered (paid for )by EI - you just need to get referrals. We use Beacon Consultants for ABA, Ironstone Therapy for Hippotherapy and OTA in Wakefield for OT.
As Lucy's mother, you have already taken the first steps to helping her! Good luck and if you want to chat further about services and agencies that I use, please let me know. I'd be happy to talk with you!
Kim

I work for EI and used to work for an autism specialty service provider. I honestly feel like, if your daughter is social at all, floortime is the best option. ABA is sometimes effective for sure, but can be difficult for children to generalize and honestly, it reminds me of dog training - do a task, get a treat. As I said, it works for some kids. But if the floortime works, go with it. I would try mostly floortime first, and if you need extra help with specific skills, do ABA for those. As someone else said, it's rarely all or nothing - most kids need a combination of things. I would also, if your insurance covers it, consider additional private therapies for motor needs and speech - EI does some of this but more is usually better. I like Project CHILLD in Beverly or OTA (Wakefield or Watertown) for this, but not sure where you live. Feel free to private message me if you want to chat more! You are doing a great job, mama!

Hi L.,

This must be very difficult for you. I am a Social Worker and I used to work as a therapist at a school that is specifically for kids on the spectrum. Early intervention is the absolute key for your daughter to reach her potential. It is a lot of hours, but I assure you that you will be doing what is absolutely best for her. You are right that free play is important, but she will not benefit from it the way a typical kid would. She will benefit more from a structured "play" through early intervention.

I wish you luck with this journey. Remember that you are your daughter's best advocate!

My 22 mo.o son was diagnosed on the spectrum in May. He is very low on the spectrum (almost no verbal/communication skills, gross and fine motor no delay at all). My son has been enrolled in Birth To Three for the past 3 weeks. Just in the past three weeks (even missing some in-home sessions) he has improved SO much!! He has learned to sign "more" and "eat", has mastered the ring stacker,and almost the shape sorter.. all of which he had no clue how to do 3 weeks ago. He has also spit out a new word daily for the past week!!

They don't start off with work work work. A LOT of it is structured play and floor time. My son was approved for 15 hours a week (M-F 10-1). At least an hour of the session is outdoor play time, where they incorporate learning sign, and other communication skills while playing. To him, he doesn't know he's working! We do spend about 45 minutes broken up doing table time, but have also worked up from 10 minutes. Each task is broken up, and rewarded with snacks, special toys.. even just a tickle or a "YAY!!".

I highly suggest using the services. Yes, it is A LOT of hours on everyone. At first we were SO overwhelmed, feeling like we had no time to get anything done, trying to have everything clean before they come...so on. But it has become our new schedule and actually fits in quite well. My son is more structured, and is overall a happier toddler!

I live in CT, and went through Beacon Services. I know they are based out of MA though. They are really great! They care so much, and never treat you as just another client, or one more Autistic kid.

It's so hard hearing this diagnosis. I myself am still fresh with it, and am not quite sure it has hit my fully yet. ABA is probably the best thing you can do for your daughter. It won't hurt to try. Just give it a few weeks and I'm sure you'll see massive improvement. Send me a private message if you would like to talk more. I don't know anyone else with an Autistic child, it would be nice to have that support! Good luck!

Hi,
I am a Special Ed. Teacher and worked in this field for about 17 years. I have a few things for you.
1. Join your local Special Ed Advisory Council, it is like the PTA for parents that have children with special needs. They will be a great resource for you.

2. Trust yourself and your own judgement. No one knows your child better than you do. Your job is to take the advice given and make the decisions for your child.

3. In my opinion, a mixture of things is best. You will see how she learns best, what works, what doesn't, and can change her services based on the info you get from each source.

4. If you are feeling a bit unsure and overwhelmed, get an Educational Advocate, they can help you navigate through everything and should have a good knowledge of what is out there. If you can't afford one, always bring a trusted person with you to meetings, evaluations, assessments and initial appointments. They will be able to help you process eveything and offer another point of view.

5. I am not sure where you are but I run a movement center for kids with special needs in Norwood. If you would like, I would be happy to take a look at your daughter and offer any insight or ideas I can. You can check us out at www.letsmotorskills.com.

This is going to be a process so don't get overwhelmed or second guess yourself! Don't change your judement for someone else's. You are her MOM!! Best of luck!!!

M. Mahoney

Hi L.!
I worked for an agency that provided floortime to children under the age of 3 for 8 years before I became a stay at home Mom for my little girl, so I can certainly speak about floortime! Our agency also did ABA, however it was a modified form. Floortime is play-based and has the basic idea that children learn best when highly engaged, so with a good provider, your daughter would be playing and not realizing that she is actually "working." You mentioned that her social skills are good which is fantastic... often times a child with a PDD-NOS diagnosis needs to be taught how to be social, so your daughter is one step ahead of the game! As for ABA, some agencies are "strict ABA," some are more "combination." Agencies that do ABA generally run "trials," which involves issuing a directive like "clap hands" and then giving a reinforcer. The directives are given usually 10 in a row, and data is recorded as far as if the child responds or not. You mentioned ABA is what is recommended... the studies that have been done with ABA are mostly with older children, and it is true that it can be successful... it really depends on what the child needs. I did come from a floortime agency, and saw a lot of success with it. You may want to google Stanley Greenspan, as this is where floortime originates. I know it is a hard choice but remember that you know your daughter better than anyone and you will make the best choice for her. I hope this has been helpful! Please feel free to contact me if you want to! Good luck to you and your daughter!

Hi L.,

I know what you mean about being stressed with a young child. My child was special needs as well. It gets confusing with all the conflicting advice. Listen to it then follow your instincts. No matter how many "experts" tell you something if you feel it is wrong don't do it. You know your child best.

I have had some "experts" tell me things and I went against my instincts and lived to regret it. Don't get me wrong it wasn't all bad but just know that no one is perfect and we all give good and not so good advice in our lives and professions. Best wishes.

L.

I mysedo not hav chld with a disability b8ut a friends or twoof mine does so I keepup with whatthey are going through as a support for them.
so here is my little list of asdvice
#1 find a support group either online or local or even both
#2 don't think you have to stay with a therapy you feel is not working
#if your child doesn't care for a therapist give it a few visits then you can change
#4 playgroups are awesome for all kids
#5 try everything with an open mind and if it works stick withit if it doesn't don't
#6 if your child is ill cancel therapy or if she tires durinbg it it can be cur short
#7 enjoy yur child for her uniqueness

The journey before you seems long and filled with difficult decisions. What will amaze you is how quick children learn at this age and how fast you will be able to see what works for you. That is, the journey is not what it may seem. It is true that the earlier you get help the better the long term prognosis, but don't feel rushed to make a decision. I went with a floortime method because it worked for my son, but every child is different and the therapists are so experienced. This may be new for you, but they have seen hundreds/thousands of children. Their experience will help guide you along with your intuition. I would recommend a mixture and you can see what works. I also had the same feeling that I was somehow depriving my child of being a child, but it really was "fun" for him. I also believe that his progress would not have been as good had we not pushed him at early age. I thin the skills that your daughter will learn through therapy will only help to explore the world better on her own later. Good luck.