The wurster, the better

I just wanted to add a couple of web sites concerning autism that you might be interested in. One is of a local group in Chester County, PA. They are the Autism Alliance of Chester County.

The other is About.com:Autism. I got to this site because a friend’s wife, Lisa Jo Rudy, runs this. I wanted to reprint her article about the dreaded “what if” questions we parents and caregivers ask ourselves. It is called:
Getting Past Blame and Worry to Help Your Autistic Child
By Lisa Jo Rudy, About.com Guide
Updated: July 20, 2009

How Blame and Worry Can Undermine Your Life:
From the moment my son was diagnosed with PDD-NOS(Pervasive Developmental Disorder Not Otherwise Specified), I started with the “what ifs”. For me, the questions were all about treatments. What if I was missing the ONE treatment that would make the difference? What if I were doing things wrong? I’m not alone. Parents feel tremendous pressure to “fix” their childrens problems — and often, the pressure can be overwhelming. But the truth is, worry and blame are almost never productive. So how can you avoid it? Here are some ideas!

What If My Child’s Autism Comes from My Side of the Family?:
Since autism is a highly heritable disorder, it’s likely that SOMEone’s family has a history of autism. That same side of the family may be responsible for your child’s hair color, artistic talents or math skills. There’s nothing anyone can do to change their genetics, so there’s really no blame to place. And the up side of having autism in the family is — other family members may have extra empathy for you and your child!

What If Something I Did Caused My Child’s Autism?:
The media is filled with stories suggesting that parental actions may be responsible for children’s autism. Was it the tuna mom ate? The ultrasounds the doctor ordered? The childhood vaccines? To date, no one has come up with a definitive answer. And since eating tuna, getting ultrasounds and providing your child with preventive health care are all responsible actions, you have done absolutely nothing wrong!

What If I’m Using the Wrong Therapies?:
There are many, many therapies and treatments available for kids with autism. There are medical, dietary, behavioral, developmental, physical and even aural therapies. Which one is the right one for your child? There’s no way to be absolutely certain. The simplest way to answer the question is by watching your child. Is he progressing? Does she seem to be building skills? If the answer is yes — you’re probably choosing well.

What If I Missed the One Therapy That Could Have Cured My Child?:
It is theoretically possible that SOMEthing out there could make all the difference for any given child. But think about it this way. If you tried every available therapy on your child, your child would probably collapse from sheer exhaustion. And so would you. As you explore options, you’ll find approaches that work for your family. And until there’s an “ultimate” answer, you can’t do better than that!

What If My Child’s Educational Setting Is All Wrong?:
Some schools offer inclusion. Others are into specialized classes. Some do a terrific job, and others are rotten. To some degree, you have control over your child’s educational setting. If there’s a real problem, you can advocate. You can even take legal action. But if your child is progressing and happy, he’s probably just fine.

What If I’m Short-Changing My Spouse Or Other Children?:
For some people, having a child with autism is all-encompassing. It can draw you away from friends and family, and become a world unto itself. If you think this may be an issue, communicate your concerns. If you can make positive changes, go for it! But if everyone else seems content with family life, you may not need to change at all.

What If We Run Out of Money?:
The million and one autism treatments, schools and therapists available can easily drain a family’s finances dry. That’s why it’s make sense to find the programs that work — and then stop. While it’s critically important to treat your child’s autism, it’s equally important to stay financially solvent, pay off your mortgage, and have something left for retirement!

What If My Child Never…(Fill In the Blank):
Marriage…job…personal independence…they’re all part of a parent’s dream for their child. But whether your child is autistic or absolutely typical, there are no guarantees. Your child will undoubtedly grow and change in many ways over the years, and you’ll provide all the love and support you can. If trouble arises, you’ll face it. But until then — why spend too much time worrying?

What If I Can’t Handle the Stress of Being a Special Needs Parent?:
So much of the stress you’re likely to feel comes from the inside out, and not the other way around. Perhaps you’re trying to keep up with other parents, respond to extended family, or just meet your own too-high expectations.

Consider the possibility that enough is enough. You’ve done your homework. You’ve found good treatments and solid educational settings. You’ve spent as much money as you can afford, and you’ve gotten the right diagnoses. Your child with autism is on the right track.

But what if there’s more to be done, better programs to find, possibilities left unexplored?

The truth is, you’ll never exhaust all the possibilities. So look inside yourself. When you think about more therapies — or perhaps consider changing schools or even homeschooling — do you feel energized or overwhelmed? Excited or depressed?

If the idea of one more straw on your load feels overwhelming, it probably is. And your child is unlikely to benefit from a parent who is overwhelmed, exhausted, and emotionally drained.

So … what if you put your feet up? What if you had a glass of wine, a bubble bath or an evening out? What if… you got to be just you for a few hours? What if you had… fun?!

This is a list of adults with autism social skills groups, service providers, camps, etc. As I find new ones or find limitations of the one’s I’ve listed, I will update this.

• SUMMER L.I.F.E.
  1777 N. Valley Road
  PO Box 730
  Paoli, PA 19301
  610-296-6725 x15
  Fax: 610-640-0132
  http://www.summermatters.org/
  SUMMER L.I.F.E. is an experiential learning program that offers youth, with and without disabilities, opportunities to experience “real world “learning within the context of innovative, highly motivating summer programming. Past programs have included a sailing trip in CT, a trip to the Outer Banks, social skills camps, film school, drama camp, science camps, and great outdoors camps. Programs are available for youth and young adults, ages 6 – 21, in the southeastern PA region.
  Contact: Holly Zipperer hozipperer@vfes.net
• There is a reference to “social skills training,” which one wonders if it is provided 1:1 in the community or in a social skills group with peers. http://www.upmc.com/Services/autism/adult/Pages/adult-inpatient.aspx

  Western Pennsylvania Autism Resource Center
  Specialized Inpatient services for adults with Autism

  A specialized inpatient unit at Western Psychiatric Institute and Clinic of UPMC is available for adults experiencing acute behavioral and emotional problems, and who have autism spectrum disorder, intellectual disabilities, and other developmental disorders.

  The inpatient unit provides acute stabilization and specialized evaluation, treatment, and referral.

  Diagnostic Assessment and Treatment
  Assessment and treatment depends on the individual patient and may include:

  * medication review and therapy
  * medical assessment and referrals
  * individual, group, and family therapies
  * functional behavior assessment
  * behavioral interventions
  * behavior training with family, caregivers, and agencies
  * social skills training
  * adaptive and self-care skills training
  * disposition planning

  and more at the web site.

• http://www.collage-otp.org/ COLLAGE

  http://www.collage-otp.org/new_page_7.htm Groups, ages 3.5 through adulthood.

  Currently groups meet in:
  Newtown Square, Delaware County, PA (meets Wednesdays and Thursdays)
  Spring House, Montgomery County, PA (meets Tuesdays and sometimes Wednesdays)
  West Chester, Chester County, PA (meets Tuesdays and Wednesdays)

• http://www.med.upenn.edu/add/sldp_group.html – Asperger’s
  Adults with Asperger Syndrome & other social learning disorder
• http://www.newhorizonsclub.org/ Social Club for adults with Asperger’s
• http://www.gocenter.net/ Growth Opportunity Center- Groups- not sure if their groups includes adults
• Camp Joy http://www.campjoy.com/
  3325 Swamp Creek Road
  Schwenksville, PA 19473
  Phone: (610) 754-6878
  - day programs are for individuals up to 21 – residential programs are for those over 21 -
  - adults and children – accept Federal waiver funding (Medicaid and county funding like OMR) but don’t accept BAS Adult Waiver funding at this time -
• Camp Atlantic http://www.campatlantic.org/
  P.O. Box 7273
  McLean, Virginia 22106-7273
  Email: campatlantic@cox.net
  Phone: 703-863-9485
  Fax: 703-533-2354
• Ability Center http://www.umly.org/UMLY/ability.asp
  Upper Main Line YMCA
  1416 Berwyn-Paoli Road
  Berwyn, PA 19312
  (610) 647-9622
• When I spoke to Jennifer Whalen, Ability Center Director, UMLY, she described a lot of good programs they have. She also referred me to Teamwork Wins which supports their programs. The age group they seem to target is children under 18, but they directed me to Indian Creek Foundation which does provide services to adults.
• Indian Creek Foundation
  420 Cowpath Road
  Souderton, PA 18964-2036
  (267) 203-1500
  - under the BAS Adult Waiver, only services Bucks and Montgomery counties

I finished up a little around the house job I had to do since December. I hung a curtain rod and curtains my daughter Tabitha bought us for Christmas. And she was there (home from school) to witness it. What a coincidence!

I also started preparing for a video taping job for the Transition Town Media initial meeting tonight. And I redesigned a web site I’m building for a singer-songwriter friend Michelle. It took a little thought but I figured it out (as I sometimes do).

My other daughter Alicia has been struggling these past several weeks since her one-on-one buddy stopped. Her behaviors have deteriorated especially the grabbing (for no apparent reason). I’m really hoping that the new buddy and day program that will begin tomorrow will help in all of this. I’m sure it will improve things but will take some time.

I recently heard someone who has a child with autism say “What others achieve by chance, we struggle with every day”. She was referring to the simple every day things that our children are presented with every day and learn from. Unfortunately, our autistic children are more literal in their thinking and reasoning and don’t always get it. It is definitely a struggle for us parents (and those in the community) to help our children and help others understand them.

I finally had a chance to go to the township to ask about putting a patio in our backyard and how it would be affected or limited by the manhole cover (storm sewer) access. They said there needed to be 10 feet all around it for access. Oh well, there goes our patio ideas.

I also told them about a rotting tree on the other side of the property fence in the back (in Target’s side). They said they would contact Target and that they were usually good about these requests. Surprisingly, an hour later, someone from Target came over and looked at the tree and said someone would come over next week or so to take care of it. They said they might need access to our property if that was okay and I said sure. Let’s see what happens.

We attended a press conference yesterday at Penn State Hershey Medical Center concerning the PA state budget and autism services that will be cut. Many services across the state will be cut. No cut is acceptable, as far as I am concerned. I am the parent of a disabled child. We cannot afford to loose services. No one wants to raise taxes except we families who have so much at stake. We cannot imagine our child’s life with these needed services.

If only the state senators and representatives could spend a day in our lives and homes. They would quickly appreciate our needs.

Certainly the economy is a concern for us as well as all Pennsylvanians. However, we can’t go back and loose services and programs that has taken 5 or 6 years to build. Pennsylvania is now a leader in these programs and other states are looking to pattern their programs after ours.

PCN TV covered the news conference. Here are a couple of links to press releases: KDKA and PR Newswire.

I try to do the right thing all the time. Not always successful, but I try. I try to control my spending. Why can’t my wife? She wanted to buy a book today and I told her to use her own money (which she has none). I told her she really didn’t need to buy a $20 book. She wanted me to buy it for her. When I didn’t, she just used the credit card. I can’t convince her to save and only buy things we actually need. She just doesn’t get it?

It’s also like when I give my advice, she totally ignores it or criticizes me because it doesn’t coincide with her agenda. We always are in disagreement especially when it comes to our disabled daughter. But, I just crawl back into my shell and let her proceed the way she wants. Sometimes, being ignored hurts.

I had asked her the other day if we should get our daughter tested for IGA (gluten intolerence), but she said no. End of story.

I mentioned the 20/20 story I saw on Friday about Carly who is autistic and is able to now communicate via computer. She thought that was interesting. I totally emphasized with her father as he was interviewed. This was a replay of something that aired in February 2008.

Here is the Canada TV link.
Here is the 20/20 link.

Please read her words as she answers some questions asked of her. It really gives you great insight into a young woman who is locked inside an autistic body. I always think how does Alicia really feel.