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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Traumatic move

Posted by on Jan. 7, 2014 at 7:08 PM
  • 10 Replies

Need advise and honest opinions:

Due to a hubby's job transfer our family had to move from Gilbert, Arizona to Montgomery County Pennsylvania this past summer.  It was a Hugh move and has been very difficult.  We left our whole life.  Our home we had built from the ground up when the kids were very little, our community, family and friends.  

We have 3 children and it is my middle child who is on the spectrum.  Non-verbal learning disability. Speech and language learning disability, some developmental delay and social communication anxiety.  He has been a difficult child to figure out and did not get a diagnosis until he was 9 years old.  He is now 20 years old which brings me to my question.  

So with the advise and recommendation of the iep team in Arizona we had David graduate . We made plans to do this when we found out we were going to move.  We did this for all different reasons and I cannot go into all that stuff right now.  The point is neither him nor I was ready for transition to the adult world.  I wasn't thinking that if I took him out of school all my services and resources would stop.  And here we are in a state so different from Arizona.  After spending days, weeks and countless hours on the phone with all the state agency offices and researching websites for resources the outcome is very negative.  The state of Pennsylvania has a waiver that you have to qualify for which our son has qualified for but get this:   A waiting list of 4000 to 6000 people.  I was told today we could be looking at one year, maybe two years before an opening and that is not a guarantee.  So basically no services until an opening comes up.

My question is our family is considering going back to Arizona in the summer.  This means that my husband would stay here and commute, maybe once a month to see us.  We haven't slept in months with worry and concern for our son.  He has basically had a lot of tv time and use of the commuter.  Regression is obvious as he now will barely say one word when out in public.  This is not a state we see our son being ale to live in; bus system and driving would be really hard to learn or navigate.  Resources limited.  The move was also very traumatic for me so I haven't had the energy or motivation to start this process all over.  It's as if we just got a diagnosis.  In other words I've been struggling with depression as the reality of our situation became more obvious.  

We are looking for some advise.  Has anyone been in this type of situation; moved to another state and then had to seperate family in order to provide for quality of life for their child?  We were so connected to everything in Arizona.  Our son was involved in the adult vocational rehab of the southwest autism research center.  We had all of our services as we had been in the system since age 3.

Phelps and advise is what I need.  I have had no one here.

Sorry for this being so long.

Thank you,

Robynne

by on Jan. 7, 2014 at 7:08 PM
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Replies (1-10):
wildchild.com
by Janine on Jan. 7, 2014 at 7:19 PM
Hi & welcome! I'm so sorry you & your family are having a difficult time. It sounds like you may need help with your depression & then you'll be able to help your son. I'm sorry I don't have any other advice (((hugs)))
Jenibob
by Bronze Member on Jan. 7, 2014 at 7:37 PM

Sorry you folks are going thru this. My friend moved their family to Va but moved back the next year. I say do what you have to do to get your son on the right track, if it's moving back to Az for all of you to receive your support then do it. Maybe your hubby job will bring him back to Az sooner rather than later. Tough decision but the family needs to be healthy.  Hang in there.

BDSMI
by on Jan. 7, 2014 at 7:40 PM

i suggest you apply for social security==this will provide insurance and a source of income for him.  Since he is an adult your income does not apply==I would then start looking for an autism support group in your area that would be able to give you information on what services are available.  also check with your children's hosptial and find out when a child ages out of their resources where they go next--hugs my son is 14 and we moved to Ohio to be able to provide services that our former state could not==

lady_katie
by Silver Member on Jan. 7, 2014 at 8:02 PM

Hello and welcome! I wouldn't be surprised if you're also experiencing "seasonal affective disorder" on top of everything else. That's an added bonus of living in this region (I'm in NY btw), which is basically depression caused by being cooped up in the house in the winter. In my opinion, separating your family would mean trading in one major problem for another, and that's not really a solution. I think that you should give it more time, and try to connect with other parents in your local autism community to see what they are doing in similar situations. If/when you are sure that you've exhausted all of your options, and that the state is not going to work for your family, I think you and your husband should figure out how your going to move back, or relocate to an entirely different place, together. 

My husband and I have been here (Syracuse) for 3 years, and we've been trying to move for a year and a half. Unfortunately, the costs of moving keep outweighing the benefits, so we're still here and probably will be for a few more years. I went through a major depression when I first realized what we got ourselves into, but at this point I've accepted it and am working towards making the best of it. It's not exactly the same, but I kind of know how you feel. It's a major adjustment and it takes time. The one thing that helped me the most was getting to know some of the people in my community. Even if they're just acquaintances, it helps a lot. Best of luck. 

Charizma77
by Carissa on Jan. 7, 2014 at 8:37 PM

Welcome to the groups! I'm sorry you are going through so many adjustments with the move. I'm sure this is such a hard time for your son. I too live in PA, butler county.. But my son is only 9 and so far we have gotten every service we needed with no wait. I don't know much about how it works for adults on the spectrum. I wouldn't blame you at all go wanting to move back to Arizona although I'm sure it's not an easy decision. Big hugs!

Krissyc75
by Kristin on Jan. 7, 2014 at 8:41 PM

Hello,Im in Ahwatukee AZ and I totally understand why you want to come back. I have to say as a family we are grateful for all the support we get from the state. DDD, ALTCS and we have private insurance, I think all states need to get with the program because if we didnt get this support we wouldnt be able to pay out of pocket for all the therapies and such. My son just started preschool and thats also covered by the state. I think you are thinking right and if it makes sense to come back for your child to get the support, do whats best for the family.Also my son was diagnosed by Dr Kessler at Southwest Autism and research Center.

TheJerseyGirl
by Michele on Jan. 8, 2014 at 7:09 AM

 I'm in NJ and don;t think there are very good services here but haven't really checked into it. What a shame that there is so long of a waiting list...that's just not right or fair!

Can he apply for SSI?

Pookiemama354
by on Jan. 8, 2014 at 7:54 AM

Our son gets ssi but we cannot find any programs except group homes or sheltered type of programs.  It is very sad.  

JTMOM422
by Brenda on Jan. 8, 2014 at 9:39 AM

I answered this on the welcome page.

I am also going to agree with another mom who said that you need to get help with your depression. I suffer depression and anxiety and couldn't really think straight or do things. I have a therapist I talk to and take meds and things have gotten a lot better. Please don't be offended about me saying you should look for help.

Gloria1025
by Bronze Member on Jan. 8, 2014 at 11:22 AM

I am so sorry you are having a tough time.   I live in PA but my son is only 4 so I haven't done a lot of research on support for adults but I have heard that it isn't great (and consistent with what you are saying).  You are probably already aware of this site but just in case....

http://www.pattan.net/category/Educational%20Initiatives/Secondary%20Transition

I know this is about high school students but you may be able to get information on how they access whatever is available for after graduation.  There also may be some key information that you have to make the system aware of that could get your son moved to the top of the list for support because I have heard (not sure if it is true) that there is some need based prioritization that goes on - unfortunately, you have to find out what types of "needs" get prioritized.  I know this sin't much help - sorry - but it was all I could think of right now.  Hugs!

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