Difficult News, Special Chapstick, Homemade Shirts, Parent Teachers and Date Night

I have taken a while to update because I have been going through some internal turmoil after hearing what Matthew's teacher had to say in Parent teacher conferences.  We scheduled Matthew, Josh, and Daniel's parent teacher conferences all on the same day to keep things easy.  However, that morning I was having one of those days so I ended up sending Aaron to visit with everyone's teacher while I stayed home with all the kids.  It is easier that way than trying to bring all five kids to each appointment.  Josh and Daniel's appointments went great.  They are both doing well.  Josh needs to work on his handwriting.  Also both Josh and Daniel have a hard time listening to directions before starting their assignments.  After hearing that I knew we were talking about the same kids because they don't listen to directions from me either.  Other than that both Josh and Daniel are doing fantastic in their classes.  Matthew's appointment was later that evening.  Aaron left to go to the appointment while I fixed dinner for the kids.   When Aaron got home about an hour later he pulled me aside and told me how the appointment went.  I really like Matthew's school teacher this year.  I feel she has a good handle on things and is one of those teachers that really want what's best for Matthew.   She has gone above and beyond in trying to work with him.  For example Matthew was having a hard time sitting in his chair and keeping his feet on the floor.  To help him she went out and bought him a special desk to where he was forced into sitting with his feet on the floor.  I also feel she has a better understanding of autistic kids because she has an autistic 20 year old son herself.  That's why what she said came that much harder to hear.  She and the psychologist have been doing major testing on Matthew the last few months.  Any test that could be done they did it and the results all came out the same--the testing is showing that Matthew not only has autism, but he is now classified as intellectually disabled as well.  That means he is testing in the range of mentally handicapped or mentally retarded.  That means he can no longer be in the Learning Center anymore and will be downgraded into the Functional Skills unit because he is not progressing in the Learning Center anymore.  His teacher told Aaron that Matthew is the "Special Kid" in the Learning Center that the other Learning Center students had to help out.  Matthew teacher had a hard time telling Aaron this because she wanted the testing to turn out better, but it didn't work out.  Matthew is only functioning on about a 1st grade level with his understanding and he is not progressing much.  However, the funny thing with autism is, is he is above grade level in his math and ability to read, but everything else like comprehension, and basic understanding of what is being taught is extremely low.  Both Aaron and I have been dealing and grieving about this unexpected blow for the past week.  When I was in the hospital after having Daniel and having him being unexpectedly being sent to the NICU, the social worker came in to visit with me.  She told me something that has stayed with me.  She told me it was ok to mourn the loss of my "Gerber Baby Experience" which means it is ok to cry since my baby experience was not the "normal" happy, everything was perfect and I got to take my baby home with me when I left the hospital experience.  I think her advice applies to Matthew and his whole life.  Don't get me wrong we have celebrated all his successes, but along the way occasionally we find ourselves mourning the loss of our normal first born son or our "Gerber baby" experience. We are glad to have Matthew in our family because we have learned more from him than he will ever learn from us and, for that, I am thankful.  However, that doesn't make it an easier to hear that he is now labeled as not only autistic, but intellectually disabled as well.  Now trying to look on the bright side he won't be blended into the Functional Skills unit until next year.  His teacher also told us that by having him in the Functional Skills unit it will help him avoid a lot of the teasing and basically mean kids through Jr. High and high school.  It will also help him learn functional living skills which will help him be a little more independent when he gets older.  He will also have a lower student to teacher ratio in class, but the kids he will be in class with are not the typical kids he will be able to learn appropriate social skills from.  Aaron and I are trying to come to terms with this unexpected development, but it is like going through the grieving process all over again.  We are grieving the loss of opportunity of him becoming a lawyer, doctor or whatever dreams parents have for their children.  However, all I want for him is for him to be happy.  Thankfully right now he still has his happy disposition most of the time and is blissfully unaware of the emotional turmoil we are going through.  I know eventually Aaron and I will accept this and move forward, but for now we are still mourning this unexpected news we were so unprepared to hear.

In other happenings with some help from a friend I made these awesome tee shirts for Matthew that say, "I have AUTISM...what's YOUR excuse?":

I thought they would be great ice breakers and also help explain his often odd behavior to strangers.  It would have helped out on Halloween when he walked up to a stranger and got within inches of a lady's face and started blowing in it.  Aaron stopped him as soon as he saw what Matthew was doing, but they lady was just looking at Matthew wondering why he did that.  Aaron asked Matthew why he did that and Matthew said he just wanted to scare her since it was Halloween.  He scared her alright, but not the way he intended to--thus the reason for me making the shirts.  He wore them to school and his teachers loved it.  I thought they turned out cute, too.

We caught Sarah putting on some "Chapstick" that she had found the other day.  However, it wasn't really chapstick but a glue stick.  We were half hoping it would stick her lips together so she couldn't scream as loud, but that didn't happen ;).  I have no idea where she even got it from, but hopefully she won't find anymore special chapstick again!             

We were in the Herriman area Saturday so we decided to stop at the Up house.  It is a replica of the house in the movie Up and everything inside looks like it does in the movie.  It was fun to go and see.

Here's the kids in the living room:

The other day I was grocery shopping with Daniel, Sarah and Noah.  While I was shopping they were relatively good so on our way out I didn't stop Sarah when she wandered into the arcade.  I let Sarah and Daniel look around for a bit when Daniel reached into his pocket and conveniently found some money to buy something with.  He bought a gumball.  Since he got something Sarah wanted something.  Luckily I had a quarter in my purse.  I let her and Daniel take a ride on Pumba and they both loved it.  Of course Daniel was hamming it up for the camera:

Noah is turning into a little stinker.  Needless to say, Sarah is grooming him well.  Anyway, whenever he sees a computer out he heads on over to help type things whether we are there or not.  I caught him typing away with both his hands trying to be like mom and dad.  Good thing the computer was turned off because he can get into trouble that way.  I have sent out a few texts I didn't know about thanks to him.

In adding to our current trials and tribulations we also got a letter from Matthew's current psychiatrist saying that she is phasing out her private practice and that we will be needing to find a new provider soon.  Let me just say trying to find a provider who specializes with children and autism that we respect and like is hard to come by.  Also Josh had another seizure Sunday morning and this seizure was different than any other seizure he has had before.  After he had it he was not able to speak even though he was trying for a little bit afterward.  That was scary.  We do have an appointment with the neurologist, but not for another week and they can't get us in any earlier.  Talk about stress!!

Anyway, not to be so doom and gloom Jill came and stayed with us again Saturday night.  She was kind enough to let Aaron and I go out on a much needed date.  We went and played racquetball up on base.  That is a really fun game and a good stress reliever.  Aaron told me that I have to add he won two of our three games, too.  We then grabbed something to eat and then did a little bit of Christmas shopping.  It was such a nice break and came at a much needed time!  We were able to forget our troubles for a few hours which was fabulous--even if I horribly lost the racquetball game!