Kevin's Weighted Vest

I know it's been awhile since I've done any blogging.  For the most part it's been due to changes Kevin has gone through with his medications and thanks to his Aunt Carol he has something new to help him cope with those rough moments that really don't require extra medication.  She bought him a Weighted Vest.  I can't thank her enough, because this thing has been a wonder.

Home made weighted vest at school

       

Kevin using the weighted vest at school

Kevin's new weighted vest at home

For years I would hear about weighted blankets, but I never saw one myself or understood how they worked.  Well, after finding that they had a weighted vest at school and Thank to the parent that made it who ever you are. It seemed to be helping Kevin to cope until we could figure out what was going on with him I decided to do a little investigating.  How do they work? Good question and I'm not sure I can fully explain it to you, but I'll try.

We all have sensory receptors and while researching this I came across the term Deep Touch Receptors.  The weighted blanket or vest gives a person that deep pressure that's needed to help a person to relax. Such as a hug, but a hug is too brief to do the trick.  It needs time to work. One web site suggested wearing the vest for 20 minutes and taking it off for another 20 minutes. Most of those that I know that use these items they keep them on for however long they feel they need it.  For Kevin it's the same way.  After he's settled and he stays that way for a while I ask him if he's ready to take it off.  His is easy to put on and take off, but he needs a little help with the buttons.  It's been a great tool to have at home and at school.  Yesterday for example was one of those days he just seemed to struggle on and off all day and I should have put it on him sooner than I did.  It might have made a difference in how the whole day was for him. Did I want to kick myself for not doing it sooner. Yes, but I'm only human. Today is a much better day and hopefully he can get through the day without it but it's there if he needs it.

Insurance, Insurance

What a shock it was for me to get a letter back in October telling me that Kevin aged out of the Insurance Program that he was in here in North Carolina.  BUT! It was an even bigger shock when I went over to the pharmacy to ask them how much his medication would be without insurance.  Well over $900 a month.  So with that thought I applied for Medicaid for him.  After waiting and getting requests for the same documents 3 times I was finally able to get someone on the phone.  Sad to say that I understood more things than they did, maybe I've just been doing this longer.  Anyway, at the end of the conversation they found that he wouldn't qualify for Medicaid either. Let me explain one thing here. If he got $1 of SSI (Supplemental Security Income) then he would have qualified automatically for Medicaid. He doesn't qualify for SSI anymore due to our income.  Some of my friends and family were rather surprised by that because Kevin is disable by the state.  The truth is you can be disable, but still have an income.  That's the loop hole for Kevin.  He and I make just a little too much to qualify for Medicaid.  My income counts because he lives with me and I am his guardian. In the end I had no choice, but to see how the Affordable Health Care site worked.  I found that I qualified for a tax credit, but that kind of scared me because it said I most likely wouldn't get a refund on my income tax return if I used the whole tax credit. I like my refund. It's kind of like Christmas in April for me, so first I checked to see how much the payments would be if I didn't use the tax credit. Over $600 a month and if you have never paid for private insurance I'm sure the amount would be a shock to you.  I did once and could afford to keep it, so $600 for insurance is better than over $900 for medication, but still way too high. Oh and watch out for the deductible. Make sure you can afford to pay both the insurance payments and any medical bills until that deductible is met.  In the end I used half of the tax credit and prayed. With that it cut the payments down to something I could work with and not have a huge deductible.  On top of that I added myself to the insurance, which is something I haven't had in years.  I'll give it a year to see how it works out for us.  As for Garrett he is still covered until he turns 19 unless something changes with that.  Lets all hope and pray that 2014 is a great year for all of us.  Better yet it Will Be a Better Year!  Think positive folks.

  

Understanding Kevin

Sometimes it's very hard to explain Kevin's abilities to people.  On the outside they see a 19 year old young man that doesn't talk very much, unless you're trying to take a nap.  It's even harder to explain to people that he is at times very aware of what you are saying or doing. Often it's not the words, but the way you represent yourself.  Recently I had a problem on the school bus with the assistant wanting to block him from standing up in the aisle before the bus stopped.  I completely understand  why she was doing it, but it was the way she was doing it that was causing the problem.  To him she was bullying him and he flat out told her to get out of his way.  The last thing I want is for my son to be rude to people, but I can understand why he reacted the way he did.  When the assistant told me that I need to have a talk with my son about staying in his sit I explained to her that I do that almost every time he gets off the bus, because I'm watching him as the bus approaches.   I suggested they take another approach by asking him to wait.  I also asked his teacher to help with explaining to them how Kevin reacts to the way people approach him and to see if she can help find a better solution for them.  I thought it was a wise choice asking for her help, because she gets to spend more time with them at school than I do here at the bus stop.  How she approached them was to explain that Kevin has an intelligent score of 110.  What she was trying to do was make them realize that Kevin had no mental retardation and most likely takes in a lot around him.  She wanted them to treat him with respect and they have been since she talked to them.  Now they seem to be in awe of my son.  Why wouldn't they after hearing he has an intelligent score of 110.  The average score for most of us is between 90-109 or something like that.  You can google it if you want to. LOL Well, the problem with telling them this is first that test was done back in the 5th grade and it was a non-verbal test.  Kevin is now in the 12th grade and was tested not to long ago on another type of test to show where he stands age wise and grade wise.  This was the Woodcock-Johnson III and the one that was done back in 5th grade was the Lieter Scale.   The WJ III test showed that he falls in the grade range of 1st grade and the age level is between 6 to 7 yrs old, which I believe shows the true Kevin.  So, now the people on the bus love Kevin and we have a new problem.  On Halloween they thought it would be nice to pass out candy and Kevin walked off the bus with an empty wrapper for Peanut M&M candy.  I was floored to say the least.  Dairy impedes Kevin from focusing.  I had a feeling that someone on the bus gave it to him, because his teacher fully understands his diet and supports it all the way.  So, I stopped Kevin in the middle of the yard knowing that they were watching us as they pulled away.  I held up the wrapper and asked Kevin if he ate it.  I held it up so they could see what I was doing.  Over my shoulder I could hear the bus stopping and a window coming down.  The assistant called out to me "Can he not have Chocolate?"  I called back NO, No Dairy of any kind.  They said they were sorry and I'm sure we'll have a conversation about it come Monday.  I called his teacher to tell her about what happened and once again she will talk to them while they are loading the kids at school.  I have 2 ID tags on Kevin.  One is from the school and the other is one I made last year with my phone number and my brother's phone number, along with an explanation that he's Autistic and his can't have Wheat, Rye, Barley or Dairy.  What amazed me was they gave someone PEANUTS.  OK, I'm not going to get rude here.  They meant well and were enjoying the Halloween Holiday.  It sadden me that I had to stop my son in the yard like that and ask him if he ate the candy.  It's not his fault that if you hand him something to eat he"ll eat it.  Ok, some stuff he'll gag while he's eating it, but he'll still take it.  My point is my son has feelings no matter how he's scored on any test.  The last thing I want to do is make him feel like I'm scolding him for something that in truth he did naturally.

On a much lighter note.  Speaking of my sons feeling he and his friend from last year have been able to see and spend time together at a couple of Special Olympic Events already this year.  The first time they saw each other his teacher said they gave each other a great big hug.  Big smile when I think of that.  At the last event they ate their lunch together.  She was sitting by herself and Kevin's teacher asked Kevin if he wanted to join her.  Kevin scooped up his lunch and ran right over to where she was sitting.  They are so cute together and it thrills me that my son has formed a friendship with someone outside of the family. Aren't they cute?

What a Character

Kevin just had us cracking up.  Every so often his brother will decide to make himself a snack in the kitchen and today when he looked up there was Kevin watching everything he was doing.  So just to mess with Kevin he took his snack into the office to try to pretend he was hiding it from Kevin. No, Kevin wasn't having any of that.  He followed him to the office.  What Garrett was making was some Peanut Butter Icing from a small amount of Vanilla Icing I had left over from last night. In the end Garrett gave some to Kevin, but I have to tell you it was fun to watch.  The best part is realizing that Kevin is more and more aware of what's going on around him.

The other thing Kevin does is if you try to take a nap in the recliner he'll call to you. It doesn't matter who you are.  If your eyes start to close he'll say Grammy, Jeff or Mommy.  No sleeping on his time.  It's just nice that he's like this now.  There was a time when he didn't pay attention to anything going on around him.  He'd sit there in his own little world. Not anymore!  He just came down here in the office to see what I'm doing right now.  LOL That could be because it's getting close to dinner time.

I had a moment today to realize how far we have come since starting the Gluten Free Diet and then next the Casein Free Diet.  I'm thankful everyday that I decide to go this route with him.  It was overwhelming the first few months, but once I realized I couldn't change his world in one day I started to relax a lot more.  I'm so glad that there's some much more information and products out there for new parents looking into these diets to help their own children.  I can't imagine how hard this would have been to do when he was first diagnosed Autistic.  He'll be 19 this year, so that was what about 16 years ago. Where does time go and why does it fly by so fast?

1st Week of School Done

What an awesome week we've had!  The boys are back in school and this week has gone by fast.  Kevin is at a new high school this year due to the program being closed at his old school.  I took Kevin with me the Friday before school started to drop off his medication that he needs during the afternoon.  While we were there we got to meet his new teacher.  I think I lucked out.  I don't have to explain Gluten Free or Casein Free for the first time in years.  His new teacher is on a similar diet herself, so no crash course for her.  Another big plus, the two assistants from his classroom last year have been transferred to his classroom.  I talked to Mr. T on the  phone the first day of school while he was outside waiting with the car riders. He wanted to see if I was picking Kevin up like I did last year or was he riding the bus.  While talking to Mr. T he said Kevin saw him when he got off the bus that morning and gave him a big hug.  I already knew that Mr. T is one of Kevin's favorites, but that just proved it even more.  Ms. Jones the other assistant wrote in Kevin's communication notebook that he's been answering questions from the work board and he's been getting most of the answers right. Yeah Kevin!  He loves school and when he finishes I just hope his CAP (Client Assistance Program) has kicked in.  There are other things I want to do when the boys both finish high school, but that's a ways off right now and something to think about as time goes on.  Right now I'll worry about this school year and helping both boys have the best year possible.

Angel watching for Kevin

So far having both boys at two different schools getting out at the same time hasn't been a problem.  Let just hope I didn't jinx myself there.

Very Happy Kevin

PS: Sorry no picture of Garrett. He was already in his cave. LOL

Short Vacation

This summer I had planned on doing several things with the boys, but one thing after another changed my schedule.  We did get away for a long weekend to my sisters house in Ormond Beach, FL.  Nothing like a day relaxing on the beach.

Kevin ready for the sun

Garrett and his cousin Cody heading out to the sandbar

Vacationing with someone that's on a gluten free diet can be hard, but when you throw a casein free diet in the mix it gets even harder.  Thankfully we were heading to my sister house, so I didn't have to worry about much of anything.  For the road trip down and back I took lunch meat and made sandwiches at the rest areas.  Plus we had simple snacks for in the car just in case anyone got hungry. During our stay at my sisters I already knew where the local heath food store was located, so that was the first stop in town when we got there. The only mistake I made was one night running to the health food store to get Kevin a frozen pizza and not getting one that was gluten free.  Slap my head!  When I got back to the house with it I realized I didn't check for gluten free.  I was so caught up in looking for one that was dairy free that I didn't check for gluten free on the box.  Luckily I had just bought it and Holly, my sister, called them to make sure they'd take it back when I went back to the store.  LOL I had no choice but to go back for another pizza, but we weren't sure if they would take the one I'd just bought back.  The manager did check it to make sure it was still cold before ringing up the return.  Thankfully I had one of the hot/cold shopping bags with me when I bought it and in the end things fell into place.  Kevin and I had pizza along with everyone else.

It was nice getting away for a few days even if it was just for a long weekend.  I needed a break from the house and the boys needed to get out of the house.

Guardian of the Person

Today I was sworn in as Kevin’s Legal Guardian.   Yes, I actually put my hand on a bible during the process.  I had two choices for being sworn in and I chose to have it done on the bible.   I cannot describe to you how it felt to have my son declared Incompetent.  I know I’ll hear a lot of “You did the right thing for him” and so on, but that is not what I’m talking about.  I know I did the right thing for him.  Kevin can’t make decisions about medical care, educational choices and in the future choices for after school programs.   Some people feel a sense of loss when they find out that they have an Autism child.  I didn't only because one of the first things his doctor said to us was “He can be taught”.  I thought okay that’s something to build on.  I never thought at that time that I’d have him declared incompetent.  During the hearing I never gave any of it a thought until the very end when the Judge said yes he will be declared incompetent.  That brought tears to my eyes.  Thankfully, the Judge also recognized and remarked on how hard it is for a parent to make this decision.  It was hard to come to terms with.  Kevin’s father and I discussed it months before he passed away.   He knew that the term incompetent really bothered me and I think he understood how I felt about it.

Why did I do it you ask, well let me tell you.  If you have a child that is handicapped like Kevin and when they turn 18 then you will not be able to make any of the decision for him or her.  As it is I've been working with his Doctors and Case Workers for so long now that they have looked to me for answers to their questions without thought.  They know he can’t answer them, but one of these days I would have hit a brick wall without that document.  I was very lucky to have someone as my legal representative and to guide me through the process.  Yes, you can do it on your own, but it will take longer and as I found out you will make mistakes on the paperwork.  I tried to address this myself at first, but in the end after feeling so much stress with the emotions of the process I opted to have someone help me.  There are some things you will be asked to present to prove their incompetency.  For Kevin it was reports from his doctors showing that he is in fact Autistic.  The other was his IEP plan (Individualized Education Program).  I also had a report from a test that showed Kevin’s abilities levels.  The one thing I just happened to have with me was his social security number.  I needed it for the last form I filled out before being sworn in.  That is something I never carry with me and I just decided at the last minute to put it in my wallet.  Kevin himself had a representative appointed by the court and she came by the house to interview me and meet Kevin.  At the end of my meeting she asked me for documents from his doctor’s and his IEP.  I was not prepared for that.  We had just torn our office apart to remodel it (hopefully to make it a little more functional) and I had no idea where that stuff was at the time.  It took me a minute or two to dig them out and make copies for her to take with her, so be prepared when someone comes to the house to represent your child.

All of that is behind us now and we are off on a new adventure.  We are going to visit my sister and her family in Florida.  We can’t wait!  It’s time for a few minutes of R&R, if you ask me.  Where did July go, anyway?  I barely remember the 4^th of July.   I remember going to Michele’s and watching Kevin & Dylan bond once again.  Okay that put a smile on my face just now.  Then Garrett and Dylan did a little golfing in the backyard.  Okay, it may have been a little on the put-put side of golf, but they had fun.  Let’s not forget Cole.  Kevin thought he was something, which didn't surprise me.  Kevin likes babies, but Cole is getting to be more of a toddler now days.  These kids are growing on us fast!  I almost forgot! Yes, I am still Gluten Free myself.  Best thing I ever did for myself.

Garrett and Dylan

Kevin and Dylan

Little Man Cole