1 year

 

At this time last year I was sitting in the neuropsychologist office with my husband and my sons father getting the results from his testing. So today it has officially been a year that we have had a diagnosis. Did the diagnosis really change anything yes and no. For the most part everything is the same we just have a word for it. I have learned a lot in the past year.

Roger still is the same child as before, that will never change. We may have only had a diagnosis for a year but we have lived with autism for eleven years. What has changed is we know what sort of supports he needs in school. Before he was a frustrated C student, today he is on honor roll. Never let Autism make you forget your child's potential. Autism does not mean "Can't" 

The worst thing we could have done would have been to start treating him differently. He is expected to do chores, homework, and be respectful to others. This is not an excuse to have everyone else do everything for him. He can do it so he will. There is something every child can do even if it is a simple task like helping wipe a table, find what they CAN do rather than CAN'T. A little bit of independence goes a long way to making a person feel worthwhile and needed.

Autism is not going to magically go away on his 18th birthday. Roger will become a adult with autism and just like every child needs to know what is expected of him as an adult. No adult will get away with throwing a tantrum in a store more than likely they will be put in jail. SO what are you to do? You do your best to teach proper behavior and control. It will not happen overnight and it will never be perfect but take them out. The best therapy in the world is not in a office its in the world.

We have had friends come and go. Hey if you don't want to be around because the word autism scares you ok I didn't want you around anyways. There are family members that just don't get it. They think we can beat it out of him. Nope sorry not going to work, besides I don't want to go to jail.

I have meet a lot of people in the past year. Some to me take everything to seriously. When everything offends you your not fun to be around. Not every comment is made to hurt you or your loved ones. Take it with a grain of salt and when the big offenses come along people will listen. There are others who can laugh at themselves I mean really you have too.

I have also learned to make my decisions based on Rogers needs. ABA was pushed at first but when we really looked at it, we needed something else. Don't get me wrong ABA is great and works well for some but as with everything it does not work for all. While I have never gone the biomedical route I don't think it is appropriate for us but I am not going to browbeat someone who has chosen that path.

The most important thing we have learned is to listen to Roger he will show us what he needs.

In the Middle: Finding Where We Belong

In the past year we have gone from not fitting in to really not fitting in. Let me try to explain this a bit, hopefully I make sense. You see both my ASD kids are High Functioning. Yes I'm adding Lucy into this now. I don't need a diagnoses to know it is her older brother all over again. The high functioning asspect puts us in the middle. They don't fit in with NT kids and they don't fit in with lower functioning kids. So what are we to do.
A example of this would be Roger wanting to play baseball. The regular little league is not for him, all the tryouts and the pressure to win would just be to much for him. Besides with his motor skills problems (i.e. the kid has no balance) he probably would not make the team. On the other end is the special needs baseball. We don't fit in there either. What do you do when you are not high enough functioning for NT activities but at the same time too high for the special needs groups.
We have gone to events were yes everyone no matter the need is welcome, and no one has ever said you don't belong here but we just don't belong. The other parents talk about doctors and treatments etc we just don't have the medical needs. When your kids classmates are volunteering at the events it makes it worse on him. I want him to have the socialization but I also know he has to face these kids in the halls at school.
We are just at a loss right now. Where do we go? Where do we belong? Do we even belong in this group who have so many more struggles than us on a daily basis? We are stuck in the middle and we just need to find where we belong.
I know there are more families just like us we just have to find them.

Red Solo Cup

Last weekend I took Roger and a friend to Target.  When we were done there we went to Safeway.  Safeway on a weekend is nuts, to many people and many of them rude.  They always look at me like I'm nuts when I have all four kids with me.
Getting back to the story the two older boys basically were playing with anything they could find and just being teenagers.  As we were finishing up and going to the checkout line.  They spotted a stack of red solo cups.  This triggered both Roger and his friend to break into song with Toby Keith's Red Solo Cup song.  So not only did I have four kids with me in the store but two were singing.  Do I care? No not really they had fun and no one got hurt, well some peoples eardrums may have hurt from the off key singing but they will get over it right?

When I went to post Toby's video I saw (I had heard about it) there was a Glee version. I am not a fan of that show have never watched will never watch it. Really could they please leave this song alone. Just because it's popular does not mean we want to see it on Glee. Besides isn't Glee supposed to be a hs show why they singing about beer? Sorry for the rant.

R.I.P. Pooh Blanket

Facebook post from November 5, 2011: 

"finally got Roger to agree to give me his pooh blanket to wash. It's a crib comforter that he has had since he was born. It's a fight to get it from him and by the looks of it I don't think it will survive another wash." It did survive that wash.


Today's Post: 

"The blanket he has had since he was a baby is no longer. It finally fell apart it has been 12 years. Which lead to a 2 hour meltdown which involved rearranging the house because he could not tape the blanket back together. Of course since it has been 12 years I cannot find another one, so far it looks like a blanket his great grandma made him will work as a replacement."

Pooh Blanket

Yes you read that right pooh blanket is gone. Roger came out of his room last night all upset and all he kept repeating was it's broken. Rearranging my house because he cannot get what he needs to say out. Finally he ended up going in my room to the trunk that has their baby stuff. Yes I am that mom I have there first outfits, costumes, etc. I have restricted myself to one trunk, anyways my hording of baby crap is not the the story here that's a whole other post. When he gt the stuff off the trunk and opened it I saw what the problem was he was putting pooh blanket in there.

While you can see through this blanket yeah its that bad he still wants to keep it. Now he is putting in the trunk rather than in his bed. Now before we got to this he took a roll of scotch tape and tried to tape the blanket back together. Of course that wasn't going to work which is what set off the meltdown. 

You can see where he tried to tape it

On the progress side:
1) He deiced it was time to retire the blanket. (while he wont let me throw it out he put it in the trunk) 
2) I have other baby blankets that are his from when he was born and he was willing to try another one. Right now a blanket Nana (great-grandma) made him is what he has chosen.
3) Usually during a meltdown I might as well be talking to a wall, I'd get a better response. While this one started like that like he did calm himself down enough to tell me it's broke, tape wont work and I feel sad. (go figure somehow I figured out how that all went together.

R.I.P. Pooh Blanket

 

Thanksgiving

Thanksgiving is upon us again. We will be spending it with my sister in law and friends. We have a total of three turkeys (yeah we tend to have way too much food). One will be baked and two will be fried. Roger cannot wait to see a turkey fried.

Growing up I hated it. None of my friends could come over, everything was closed and really I was bored. I still kinda think it’s a useless holiday but then again what’s so wrong with an excuse to have a ton of food. Not that we need one in this family.

 I am thankful for my Roger and Lucy, who have taught me more than I could ever imagine who I love with all my heart. I wouldn't have it any other way.

I am thankful for their siblings, who have grown up quicker than most children, who know the world does not revolve around them. I love you all and am PROUD of each and every one of you! Porkchop can sit through an IEP meeting or therapy appointment like no other. Wonder if that’s a skill he can add to his resume later in life.

I am thankful for my husband, who after 10 years of being a single mom, came into my life as part of the family (I knew him before I had kids), accepted the challenge, simply because he loves me. Thank you for all of your help I know that there are times that you want to run.  But you don’t.   Not to mention that you are hot and can fix pretty much anything no matter how badly I’ve screwed it up. 

No matter how hard life may seem at times, I know that I have an amazing life and a lot to be thankful for!

Therapy: The GOOD Story

The Starfish Story

(adapted from The Star Thrower, by Lauren Eisley)

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects and throwing them into the ocean.

He came closer still and called out "Good Morning, May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean".

"I must ask, then, why are you throwing starfish into the ocean"? asked the somewhat startled wiseman.

To this the young man replied "The sun is up and the tide is going out. If I don't throw them in, they'll die".

Upon hearing this, this wise man commented "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said...

"It made a difference for that one".
 **********************************************************************************

The right therapist makes all the difference in the world. I have written about therapy before usually how I don't follow common practice and do every sort of therapy possible and how hard it is to get appointments. This is another side of that story. This is what happens when you find the right place and the right person that fits just right for what you need.

When I was looking for therapist I kept calling the ones closest to me and the ones that had been recommended. We were on the wait list at childrens for OT that was 6 months long. One day I just got tired of being told 1) we don't take your insurance 2) no space available 3) we have no experience with autism. I think I just used Google and Goggled every OT within 2 hours of us and emailed every one of them. I must have emailed close to 20 and of that 20, ONE responded. The one that responded Achieve Beyond. 

I talked to the office manager L who took some information from me. L originally told me it could take up to two weeks to get insurance approval but they did take my insurance, knew how to handle autism, and best of all NO wait list. I didn't expect to hear from L for a couple of weeks but he called back that afternoon. he had already gotten approval and had some options for times to come in for the evaluation within the next two weeks. Once the evaluation was done he emailed me a copy of it and again already had approval for treatment and options for appointment times. The office staff here especially L has made things painless on the insurance aspect of it.

Now for our OT C. When it comes to C you can not ask for a better OT. She knows what she is doing and the progress that she has facilitated is nothing short of amazing. She gives off the impression that while yes this is her job its more than a job to her. In the past any sort of doctor appointment would stress Roger out and he just didn't want to go. Now he wants to go. He knows once a week we are going to see C and she is going to let him play with the swing (really I should get one of them). C uses what he is interested in to work on things. Yes he does have to do things he does not want to but there is the payoff in the end and that works for him. She makes therapy not therapy it's fun for him. She is worth every penny.

We liked C so much that when we lost our speech therapist at children's and were put back on their 6 month wait list I called L again and asked if they had any available appointments. Again the process was quick and easy and they even got us a speech appointments with S following Rogers appointments with C. Considering we have an hour commute each way this is very helpful for us. We just started with S a couple weeks ago but so far so good. :)

If you are looking for a clinic and you are in Metro DC Area, California, Connecticut, New York, or Illinois check Achieve Beyond out. website, Facebook. If all of the clinics are like the one we go to you will not be sorry.

The First Year

It's already November. We are at the tail end of our first year with a dx and the first year of therapies. I think the year prior going to Dr. to Dr. was worse. Now we have our little group of Doctor and therapist and Roger is comfortable with them.
Back in January things were a little overwhelming. Roger was about to turn 12 and now the doctors are saying well we should have done this years ago like when he was 3 but it's not to late. They rattle off the list of suggested (that's the key word here)therapies and like most I initially thought we had to do them all. Just cost alone I would need to work 6 jobs and then the time he would have no time to be him. Every new doctor we went to added to the dx list. Trust me I would be here for days trying to list them all and their idea of what therapies will work. Eventually I realized I don't have to follow them all so we prioritized what were the most important speech and OT so that's what we went with. Almost a year in and he is doing great.
Sure when we lost our first speech therapist and he started OT we had a little regression but it ended up being a good thing. Now instead of going clinic to clinic all his therapy is in one clinic and the therapists know each other and work together.
Roger hasn't changed he is the same child he has always been. What has changed is the anxiety is lower. He now has help in place at school and instead of the frustrated c student we have a calmer A student. He transitioned into middle school smoothly. As his speech improved and he became more confident he is self advocating more. Now he will tell the doctors what is bothering him, I don't have to guess as much. We still have bad days. There are still days where all he will talk about is legos but hey he's talking. We have chosen to focus on all the positives and the good days and not the bad. Even with Autism he can still do great things.