What support is out there for parents?

Page 1 of 1 [ 15 posts ] 

bal1985
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 28 Nov 2011
Age: 32
Gender: Male
Posts: 27

12 Dec 2011, 10:18 pm

Hey everyone!

I haven't introduced myself yet so I just wanted to say hello to everyone! My name is Brett and I have a 2 year old son with PDD-NOS. I've posted a few times here and there but nothing much. You guys have been great with helping me out.

On to my question...hmmm actually question(s).

- My son was diagnosed with PDD-NOS a few months ago, we went to two different doctors for two opinions. One doctor was at Children's Hospital CDU (http://www.chp.edu/CHP/cdu) and then a few weeks later at The Autism Center of Pittsburgh (http://www.autismcenterofpittsburgh.com/). Both said PDD-NOS and one said they he just on the edge of the spectrum and told me not to tell people that he has autism, just PDD-NOS. Is their a huge difference? Do you guys think 2 evaluations are enough? For some reason I feel like they didn't do enough in the little time they had this my son, I left with so many questions rather than with answers. I don't know what to do with this part of it?


- My son has been getting therapy from TELIPA or The Early Learning Institute (telipa.org) for quite a while now, I guess it's free from the state? Every week a Speech-Language Pathologist would come and also a Occupational Therapist, just for an hour. They still come today and they actually recommended my son to go to Children's Hospital for an evaluation. At first we thought that maybe he just had speech problem, but overtime I got my concerned and wanted to do more. Anyways, my son's case worker who oversees everything came with up to his evaluation. After he was diagnosed the therapist or whatever you want to call it, from Children's, gave us a list of places to call for therapy. Our case work picked a place out from the list that she personally recommended. We trust her, so we went with them. They are called SouthWestern Human Services (shs-pgh.org). I'm trying to make this short...Everyday my son's TSS(is the correct abbreviation?) worker comes out to the house everyday, Monday through Friday for 3 hours everyday. Right now she is just getting started with him, just letting him play, I guess building up a relationship with him? I had to get rid of the last TSS because it felt like nothing was getting done and I was getting angry. He seemed like he didn't care or just wasn't interested. I contacted our BCBA and told him that I would like to switch. He tried telling me that most TSS are just out of school and really don't have much experience. I couldn't believe that? I don't want my son to my TSS workers first child. I want a TSS with experience and so forth, someone that I know will be able to help my child as much as possible. Even his speech therapist said it's hard to find a good TSS, that they are extremely underpaid, some just don't care or just take cases that are closest to their house, etc. She said if I find a good one that to never let that TSS go. I guess what I'm asking with this question is what MORE CAN I DO? Am I doing the best that I can? Is there anywhere else I can take him, maybe a better place that can help him even more? I want the best option for my son so he has the best opportunity of having a fulfilling normal life. I just don't feel that these TSS workers are his best option or the answer. I need some ideas of what I can do, who should I contact, etc. What are you doing for your children? Right now all of his therapy is free, I'd be willing to pay for a school, pay for a better therapist to work with him, I'll do whatever it takes. Are there in schools out there for him, where I could be with him during the day?

- I don't know if anyone can help me with this or not, kind of a different question. I'm unable to work because of my son, he needs someone with him pretty much at all times. Plus he gets his daily therapy at the house, someone needs to be with him. Are their any benefits out their that can help us out? Money is pretty tight, Mom is doing all the working, but one income is just not enough. We though about daycare but everyone agrees, including the therapists that daycare would be a bad idea right now. So if anyone is in the same boat as me and has go help please let me know what.

- Last question for now... Can you guys recommend any reading material, magazines, books, websites, hotlines, group meetings, etc. I want to learn more about my son's PDD/Autism, I want to know everything about it, what I don't understand, how he sees the world right now, how I can help improve his daily life and so on. Whatever you think will help me understand this better please let me know. Right now I'm having a very hard time with this. I'm going through the "why my child" stage now, I'm very angry at everyone, very defensive, ready to pop off at any moment, my anxiety and depression are at an all time high. What is everyone doing to cope with this, any support groups out there I can go to? I really want to meet other parents, my age or not, that have children with the same disabilities. I'm having a real hard time finding friends for my son. I take him to this play center near me pretty often, it's in a church, it's pretty big, he loves it. Anyways, most kids these days are mean and nasty, their parents don't care. I want him to interact with other kids, I feel that playing and being with out kids his age will help improve his PDD drastically. When we go to the play center, he is just now starting to go up to other kids and saying "HI!" and waving his hand. This is a GIANT step for him as he is extremely shy, the who no eye contact thing. Most kids don't want to play him because they don't understand, then I have to sit there an tell the parent how he has autism and it starting to really piss me off. Some parents look at you like with that dirty look. I want him to be around kids like him, but like I said there is no White Pages for kids with autism, I have no clue on how to improve his social skills among other kids like him?


That's it for now, thank you for letting me vent. I'm pretty upset as you can tell by my writing, it's all over the place, just like my mind right now, racing everywhere. I look forward to finding some new friends on here and I hope that I can help some of you guys out also.

Take care and happy holidays!
-Brett



bal1985
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 28 Nov 2011
Age: 32
Gender: Male
Posts: 27

12 Dec 2011, 11:10 pm

bumping this up!



nostromo
Veteran
Veteran

User avatar

Joined: 12 Mar 2010
Age: 49
Gender: Male
Posts: 3,321
Location: At Festively Plump

13 Dec 2011, 5:17 am

Hi Brett, 2yrs old is quite young so I guess thats partly why he has been given the PDD-NOS label, the experts may not want to be too definitive yet.
But its also a REALLY good thing to be diagnosed so young and get started on early intervention.

We have ABA based therapy (oh BTW I hate that word!!) for our son, that is apparently so far the most proven (lots peer reviewed studies) treatment for Autism. We do about 15 hours a week of that.

I suggest for you to get an idea of what is available have a look here, and go down the list on the left
http://www.autismspeaks.org/what-autism/treatment
(its should be noted that that particular Organisation is reviled by some Autistic people for their aim of curing Autism and other factors, but that has nothing to do with the treatment info they provide there which seems quite concise and impartial)

One other thing that you might look at is the MCHAT toddler test you can find online, it may give you some more clues, at least I found it interesting, its a screening tool for Autism in toddlers
http://www2.gsu.edu/~psydlr/DianaLRobin ... bsite.html

Hope thats some helpful starters for you :)



bal1985
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 28 Nov 2011
Age: 32
Gender: Male
Posts: 27

13 Dec 2011, 9:07 am

Thank you



zette
Veteran
Veteran

User avatar

Joined: 27 Jul 2011
Gender: Female
Posts: 1,241
Location: California

13 Dec 2011, 12:10 pm

This forum is a good place to talk to other parents who have "been there" with high-functioning autism and aspergers. There are a few regular posters who have both an aspie and a more severely affected child with classic autism, who would have insight into therapy and experiences during the toddler years. Most aspie's aren't identified until preschool at the earliest, though that may be changing as there is more awareness out there.

One thing that would be really helpful for you to find a parent support group or autism fundraising group local to your area. Talking to as many parents as you can will help you find out which therapy providers are good. Google your city or state and austism support, and ask your current therapy providers if they know of any groups.

There's a sticky at the top with recommended books. For the preschool years, I can recommend:
Asperger Syndrome and Young Children (note the title says"and", not "in" as there is another book with a similar name)
Raising Your Spirited Child Workbook



blondeambition
Veteran
Veteran

User avatar

Joined: 8 Oct 2010
Gender: Female
Posts: 718
Location: Austin, Texas

13 Dec 2011, 12:43 pm

http://www.freevideosforautistickids.co ... uides.html

I've started gathering a few resource guides together from Autism Speaks, the Autism Society, a state agency (Texas), and a charatable group. (See above).

http://www.freevideosforautistickids.co ... Links.html

I also have a bunch of links above to sites with information about autism.

Finally, there is a whole lot of information on my free Autistic Kids YouTube Channel ( youtube.com/user/vids4autkids1 ) in the "favorites." (Be sure to click on "load more" at the bottom of the "favorites" page to get more videos.

You might also want to check out my free YouTube Speech and Vocabulary Channel and free Reading Channel (see below).

I personally find a lot of support through my local chapter of the Autism Society. They have a great Yahoo! group, and it is a good source of local information and contacts.

I don't agree with everyone in the group on treatments, but that is okay.


_________________
www.freevideosforautistickids.com is my website with hundreds of links and thousands of educational videos for kids, parents and educators. Son with high-functioning classic autism, aged 7, and son with OCD/Aspergers, aged 4. I love my boys!


Bombaloo
Veteran
Veteran

User avatar

Joined: 31 Mar 2010
Age: 46
Gender: Female
Posts: 1,517
Location: Big Sky Country

13 Dec 2011, 2:47 pm

A lot of people here focus on educating themselves as much as possible about autism/Aspergers in general and specific therapies and such so that reliance on outside professionals diminishes over time. A lot of the things that OTs and other therapists do are things that a parent can learn to do themselves at home. On the other hand, I would suspect, though I don't have any experience in this area, that speech and language difficulties are probably best left to professionals at least to some degree. I guess I say this because it sounds like some of your concern lies with not feeling like you totally trust the therapists who are working with your son. I think the evaluations you have done are good for now. As your child gets older different issues will come up. At this time there is no way to predict what those will be. reading up and learning all you can is a good place to start. Did someone already mention the sitckie at the top of this borad with suggested reading material?

The anxiety you are feeling is normal. I remember when the people at my son's preschool first sat me down and told me they thought there was something different about my son. The word autism had been running through my brain for some time, not sure how long. When the preschool teacher and school director informed me of their observations, I admitted for the first time what I had been thinking. It was like a dam broke when I said out loud to another human being that I thought my son had autism. I cried tears of relief, sadness and fear. It was good to let my worry out and it was good to have a label that meant there was something to "treat". But there was so much that I did not know then. There is still a lot I don't know almost 2 years later but now, what I do know is that there are answers and my son is going to be fine. Life will be different for him than I thought it was going to be but it will be fine. Hang in there!



DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Age: 58
Gender: Female
Posts: 10,865
Location: Northern California

13 Dec 2011, 3:28 pm

Nice to meet you!

My son was diagnosed until he was 7, so I can't help much with the services questions, but have heard people say you might be able to get social security support - I would look into that (we never have, we've just assumed we wouldn't qualify).

I will also emphasize with the way the child's needs affect your work and work/home balance. Even though my son wasn't diagnosed as an infant or toddler, he clearly needed something daycare could not give, and since I felt at the time I couldn't just quit work (licensed profession, owned a business, all those sorts of complications), I cut back drastically and hired a part time nanny (a very special, talented - and expensive - one) for the rest. Basically, everything I made and then some went to pay the nanny, but it was nice to feel like we had another partner with all of it. We didn't need to keep that savings account we had before he was born, right? Anyway, we didn't have a "why" at the time; it was all touch and feel, and I guess we did OK, fortunately. I must say, getting the label when my son was 7 answered so much and made it all so much easier for us.

My understanding is that PDD-NOS is an autistic spectrum label, just one they use when they aren't sure all the boxes are being checked for a full "autism" label, and also the one they favor when they child is diagnosed young. You will see similarities and differences between your child and those with more affirmative labels, but you would also see that if you compared two child with the same ASD label. What matters is that the label get you the services and assistance your unique child needs. If it turns out you need a different label to get the financial assistance you are looking for, then go looking for that different label. Whatever gets your family what it needs is what you go with.

Best of luck to you.


_________________
Mom to an amazing AS college son (plus a non-AS high school daughter). Most likely part of the "Broader Autism Phenotype" (some traits).


blondeambition
Veteran
Veteran

User avatar

Joined: 8 Oct 2010
Gender: Female
Posts: 718
Location: Austin, Texas

13 Dec 2011, 3:40 pm

Bombaloo wrote:
A lot of people here focus on educating themselves as much as possible about autism/Aspergers in general and specific therapies and such so that reliance on outside professionals diminishes over time. A lot of the things that OTs and other therapists do are things that a parent can learn to do themselves at home. On the other hand, I would suspect, though I don't have any experience in this area, that speech and language difficulties are probably best left to professionals at least to some degree. I guess I say this because it sounds like some of your concern lies with not feeling like you totally trust the therapists who are working with your son. I think the evaluations you have done are good for now. As your child gets older different issues will come up. At this time there is no way to predict what those will be. reading up and learning all you can is a good place to start. Did someone already mention the sitckie at the top of this borad with suggested reading material?

The anxiety you are feeling is normal. I remember when the people at my son's preschool first sat me down and told me they thought there was something different about my son. The word autism had been running through my brain for some time, not sure how long. When the preschool teacher and school director informed me of their observations, I admitted for the first time what I had been thinking. It was like a dam broke when I said out loud to another human being that I thought my son had autism. I cried tears of relief, sadness and fear. It was good to let my worry out and it was good to have a label that meant there was something to "treat". But there was so much that I did not know then. There is still a lot I don't know almost 2 years later but now, what I do know is that there are answers and my son is going to be fine. Life will be different for him than I thought it was going to be but it will be fine. Hang in there!


About speech and language, I would say to take advantage of whatever resources are at your disposal, but you will probably also need to work a lot with the child yourself if the child has serious speech issues.

Twice weekly 30 minute sessions with a speech therapist, which is what a lot of parents with non-verbal kids get through the public school system here in Austin, Texas, are not enough to make significant progress. A lot of parents also get an hour or two weekly of speech therapy through insurance, for a combined total of 2-3 hours weekly of professional help, which is not nearly enough for a child with a serious speech delay.

--Good luck, and please check out my free website, www.freevideosforautistickids.com, for resources.


_________________
www.freevideosforautistickids.com is my website with hundreds of links and thousands of educational videos for kids, parents and educators. Son with high-functioning classic autism, aged 7, and son with OCD/Aspergers, aged 4. I love my boys!


Last edited by blondeambition on 13 Dec 2011, 8:34 pm, edited 1 time in total.

postcards57
Deinonychus
Deinonychus

User avatar

Joined: 7 Aug 2011
Gender: Female
Posts: 343
Location: Canada

13 Dec 2011, 8:16 pm

I want to reassure you that lots of parents go through the same anxiety as you are experiencing. I found my anxiety diminished as I learned more about my daughter's abilities and needs.

I would really encourage you to visit, or at least call, autism and other support services in your area.
With a child with a disability, I think it is possible to get help from WIC. They can help with food and suggestions for services.
You're in Pittsburgh, right? (I figured this out from the Southwestern Human Services site).
Here are some links I found for you:
http://www.autismcenterofpittsburgh.com/
They have a page with info for newly dx families:
http://www.autismcenterofpittsburgh.com/newdx.html
http://www.chp.edu/CHP/autism (Autism Center at the children's hospital)
http://www.upmc.com/Services/autism/Pages/default.aspx
http://www.autismlink.com/locations/view/39 (a list of services in PA)

You'll find there's lots of info on autism on this site and around the web. Good luck!
J.



bal1985
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 28 Nov 2011
Age: 32
Gender: Male
Posts: 27

02 Mar 2012, 11:56 pm

My son is currently receiving wraparound services from Southwestern Human Services. We are on our 3rd TSS worker.

I'm starting to think this company is not so good? Is there a way to find out what the best wraparound service in my city is? I'm trying to find the best fit for my son and right now I feel like these TSS workers are all the same.



blondeambition
Veteran
Veteran

User avatar

Joined: 8 Oct 2010
Gender: Female
Posts: 718
Location: Austin, Texas

03 Mar 2012, 7:19 am

http://www.freevideosforautistickids.co ... ulary.html

There have been a whole lot of recent improvements to my website, especially in the speech section. There are hundreds of hours of free speech videos in order to help kids learn receptive speech. Many of the videos also include closed captioning or vocabulary words on screen in order to help with reading and spelling.

I didn't make the majority of these videos. I've just collected them off of YouTube.

There are hundreds of embedded video players on my website. Each is connected to a playlist of video clips on a topic. There are controls at the bottom of each video player, and the rectangular box control lets you skip from video to video and browse what videos are contained in that playlist.

The left side bar is for stuff of interest to parents, teachers, and high functioners looking for links. The rest of the material is for kids to watch themselves (young children with and without ASD, teens with and without ASD, and young adults who want tutoring in social skills, life skills, reading, writing, math, speech, or English as a Second Language).

Good luck. I hope that something on the website is of help.


_________________
www.freevideosforautistickids.com is my website with hundreds of links and thousands of educational videos for kids, parents and educators. Son with high-functioning classic autism, aged 7, and son with OCD/Aspergers, aged 4. I love my boys!


BuyerBeware
Veteran
Veteran

User avatar

Joined: 28 Sep 2011
Gender: Female
Posts: 3,587
Location: PA, USA

03 Mar 2012, 8:27 am

Well, I don't have any advice. I've has Asperger's all my life and think my 4-year-old son probably does too, but I'm feeling my way around in the dark as much as anyone.

Well, one piece of advice: The folks that admit the therapists and such are pretty much bumbling around in the dark??? It might not do a whole lot for your confidence and sense of security, but those are the folks you want. We still know so little that we're ALL bumbling around in the dark. Tony Attwood himself is squinting in the ambient light coming in through the window. The really, really smart ones admit that and are open to watch and listen and learn. The stupid ones think they know everything already and can do a lot of harm by failing to acknowledge what they don't know.

Just my opinion, but-- In this field, I think "experts" are probably more dangerous than intelligent, watchful, cautious learners.

One other thought. I'm mouthy and opinionated and probably a pain in the ass...

...but I'm in the SW PA area (north-northwest outskirts of Pittsburgh to be exactish), or will be once I finish up my business in Florida anyway. Couple, three months. If you want someone to hang out with, play spectrumite parent with, just some close-by support, drop me a line.


_________________
"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"


bal1985
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 28 Nov 2011
Age: 32
Gender: Male
Posts: 27

04 Mar 2012, 12:35 am

Yeah, I just don't know if I should stick with them or look elsewhere. I have no clue on what else is out there and who is good and who isn't?



momsparky
Veteran
Veteran

User avatar

Joined: 26 Jul 2010
Gender: Female
Posts: 3,831

04 Mar 2012, 12:22 pm

Bal, I know you posted this months ago, but for anyone else in the US posting a similar question about respite care: most states offer financial support of some kind to give respite to parents of kids (well, or adults) with disabilities. Autism Speaks has a reference for it here: http://www.autismspeaks.org/community/f ... =45&cid=35

Generally, before you contact one of the service agencies, you have to find out how you qualify through the state. Presumably, a good service agency will be able to help you with that - but most states have the information on how to apply via their Department of Human Services website (sometimes it's called something else; in PA it's the Department of Public Welfare.) Here's a very educational PDF file from the state of PA http://www.dsf.health.state.pa.us/healt ... tecare.pdf and you apply at http://www.dpw.state.pa.us/fordisabilit ... /index.htm

In addition, many states have an opt-in free or low-cost health insurance program for uninsured kids.

Also, here's a national helpline for the US:

Quote:
National Respite Locator Service 919-490-5577
www.respitelocator.org
A service that helps parents, caregivers, and professionals locate respite services
within their local area to match their specific needs.