Monday, September 24, 2012

Prader-willi syndrome awareness

The last 5 or so days have been a nightmare for my husband and I. Seriously. It's been a complete blur. I'm not even sure where to start. I have felt so weary...but today, as every other time of feeling powerless, God showed he was right there beside us.

A month ago A~man had to have a psychological evaluation done as it has been a couple of years and because he receives services through the state, and his yearly plan of care was coming up we were getting things in order. For reasons I still do not understand we did not get the results until last week. I was dumbstruck when I saw them. During the testing he was so cooperative for the 2-3 hours of testing, polite, and as appropriate as it is possible for him. We had thought that we were meeting the psychologist for the behavior part (this was more of an IQ/developmental test) at a later date. So to give the psychologist a heads up on some of the behaviors we experienced in the last couple of years he wrote them down as we do not like talking about them with A~man there. He is always listening and it cannot be good to hear a review of his past misbehavior. Especially since with PWS...some of them just cannot be helped! Also we filled out some types of questionnaire like tests based on his needs and behaviors.

As I said, for whatever reason we got the results last week when my husband went to fill out some paperwork at our service provider. They sat him down and told him. They told him that the psychologist recommended A~an be put in an institution. I am not in the least bit kidding. I have a few readers of my blog that know A~man and my family in person. Hopefully they will chime in and agree how utterly ridiculous this would be. This is something they did with children/adults with disabilities up until 30 years ago. Right before I was married I worked in an institution for a short time with the youngest they had and they ranged from 5-35. They were well cared for where I worked but to put my son and lock him away?

What was the Dr's reasoning? He said that he was a danger to my family. He has NEVER hurt his sister besides normal kid bickering and that is mutual and very mild. I have hurt myself a few times when I have had to restrain him. (disclaimer I am very trained! please never restrain your child without training.) In the past he has also slapped at me. That is spread out over the last few years and it's been over 6 months since that has happened. As a team my hubby and I have learned better ways to deescalate his behavior before it ever hits seismic proportions. We both work from home and we both share in the homeschooling and when one is weary the other steps in. It works for us. Evidently this Dr. hearing what we experienced came to the conclusion that we were merely treading water. Hogwash.

I won't say one of the particular behaviors that disturbed the Dr and our service provider. (unless you are a pws parent and want to know) The thing is the behavior can be common with PWS. PWSAUSA (Prader-Willi Syndrome Association USA) lists the problem on their resource page. The page I have linked is the basic facts wouldn't you think a psychologist and a service provider would KNOW this basic information?? Instead I feel like my husband was interrogated as if we had done something wrong. Fortunately we had been to his pediatrician at least twice for this issue and to another specialist to help with the underlying physical problem that caused the behavior. My husband ended up walking out in the middle of his meeting that day.

How did this affect us? We felt sick..and we were worried that the provider would call DSS thinking that we had caused his problem. I cannot remember the last time I heard my hubby sob like he did that night. Yes he sobbed! I do not remember the last time I have cried so much. We felt so helpless. What did we do? We gathered all of the information we could find about his issue at the PWSUSA website...and I found things in online medical journals. We became proactive and called his GAL (guardian ad litem) from when he was a foster child as she knows us well.(she became our advocate once again through this) We called his pediatricians and explained and got letters from them to give to the psychologist and service provider today. We got letters from a local merchant that knows our family well and from our pastor. Heck, we even called and talked to his old social worker from DSS! Just telling what they have observed from the A~man and what they observed from us as a family.

I didn't go today as I had to watch the kids but hubby went and he went fully armed. That includes a massive amount of prayer warriors and God was obviously right there beside him. What was there reaction? The service provider admitted he did not know hardly anything about PWS. I'm guessing all he knew about was the weight issues which isn't the main issue with the A~man. The psychologist also did a whole lot of back pedaling even though he said he KNEW PWS. We will not be using his report (we will find a different psychologist) but in the meeting he said that he didn't mean that A~man should leave our home. It was written down. Hubby left the 2+ hour meeting in peace...and brought that peace home to me.

I REALLY want to somehow make sure this doesn't happen to another PWS parent. Thankfully I knew that the particular behavior my son was having was pretty common because I was able to talk to a few wonderful fellow PWS parents on Facebook. I shudder to think what could have happened if my husband and I were not fully educated on the other issues that go along with Prader-Willi Syndrome. We would not have been able to advocate for him!

 Have I mentioned I LOVE my A~man???!!!


  1. Oh, and I forgot. During the first meeting the service provider said "well we are going to have to give you more training". HUH???

  2. I am so sorry you and your husband had to go through something like this, how horrifying. How very brave you both are. Your husband was so heroic, taking his pain and turning it into the power of advocacy. I admire you both. And A~man....well, in two words...he ROCKS(!) and is very fortunate to have such a loving family!

  3. Thank you. :) We are very blessed to have such a sweet,entertaining,and awesome son!

  4. Oh, wow, Joy. That made me so mad just reading about it! I could have told them from way over here that the 'expert' was a bozo and obviously knows NOTHING about A-man or your family. I was smiling so big reading that your hubby went in fully armed in all manner. You tell them!

  5. This is very scary. So sorry it happened to you guys. the professionals like to think that they know our children better than we do! We had a similar experience a few years ago. Now we don't ever mention any behavior issues to any doctor.