Friday, October 28, 2011

One month of music therapy down and great results

It hit me today that we have now completed a full month of music therapy behind us.

If you remember from this post Alvin had to say goodbye to his Teacher Jesse from the gym. This summer he had bonded with him and when he left I was upset but was very concerned how Alvin would take it. This was not something we took lightly so when the opportunity presented itself to work with him in music therapy we jumped at the chance.

When we started this a month ago I had no clue what to expect as I talked about here. Four weeks later and I am in love with the way the therapy works and the progress we have seen.

The first week as I documented was amazing. Within 24 hours Alvin said his first sentence ever! Our first 4 weeks were spent trying new things and seeing what kind of responses we got each time.

The last week we started talking about goals for between now and the end of the year and have agreed on 5 goals that we hope to make progress on by the end of the year:
1. Cognative- work on choosing between 2 tiems or activities
2. Self expression through music. Work on displaying emotions or self expression through music.
3. Attention Span- Show progress in attending to an activity for at least 10 minutes without interruption in eye contact or following the directions given by his teacher.
4. Parent involvement- require very little re-direction from myself during a session. The overall goal with this is for him to gain more independence and be more sure of himself.
5. Following direction- this is a general goal to address transition issues and listening skills. The goal here is when asked to do something to show little resistance to doing what is asked and transition from one activity to another effectively.

The week that we started working on these goals. One of the things Jesse told me was that at some point we would be bringing out the real Alvin. This means that he wanted to see what a meltdown was what triggered them

Well this week it happened. Jesse brought in a CD player and for Alvin that meant numbers and electronics, two things that he is obsessed with. Well it didn't take long for a meltdown to occur. The great thing was that even with the meltdown Jesse didn't waiver. We have had therapists that when he looses it they back down and really don't want to push. The great thing was he worked through the meltdown re-directed the behavior to something positive and continued with the session. We got through the whole 45 minutes with 3 or 4 meltdowns but yet he left happy and positive about what he just did! On the way home he sang songs and was happy about what he just did.

Its been 4 weeks of music therapy with Jesse and Alvin is talking using 3 to 4 words in a sentence. He is showing posession of his toys by saying they are his when we or Elliot mess with them. He is telling us about what is going on around him like saying its raining or that at Petsmart he see's a lot of fish.

The main thing is he actually talks to us! Alvin is 4.5 and he is finally talking consistently!!

The past month I have started to learn more about what makes Alvin tick. I'm starting to see his wicked sense of humor even and timing even more.

For us music therapy has started to unlock our son. I am now starting to better be able to understand him and what makes him tick and how to work through things and work with him better.

So a month of music therapy down and I am hooked. To have something help my son be able to communicate and express himself is simply amazing!

Thursday, October 20, 2011

One year ago- a different perspective

One year ago I was beyond frustrated with my job. I had endured harassment by the guys in my group for 3 years and it was only getting worse. With Elliot’s birth and returning to work things heated up. A new boss was brought in but I just couldn’t take it anymore. Even with the management change things continued to get worse with my group.

Then we got the autism diagnosis. To say I was stressed was a understatement. I spent a ton of time researching what autism and Asperger’s syndrome were. I was constantly worried about how we were going to deal with it and what treatments would be best.

During all of this I did my best to stay sane in public. We continued to go to hockey games and I started parent child classes with Elliot at The Little Gym. I started them with her because her brother was taking so much of my time I wanted her to still have her alone time.

The stress was so much that I stopped playing hockey. My only outlet I could no longer justify anymore.

Then at work one day I got the comment that threw me for the biggest loop. I had just gotten a call from the OT (occupational therapist) that they had an available time for evaluation that day. It was in 2 hours and if I could get him there that would be great. This was known as a very good OT so I quickly started making the arrangements to leave work early. My boss wasn’t there so I emailed him and then told one of the senior guys in my group. What he said floored me. I told him that I had to leave and get my son to an appointment. He then looked right at me (in front of another guy in our group) and said “Yeah go take care of your retard son” and proceeded to laugh as I walked off.

He said what?! I did like I normally do and put it out of my mind as I ran home to get Alvin and take him to the OT evaluation. That of course left me with more to digest so I couldn’t really think about the comment.

The next morning I went into work and refused to look at the guy or speak to him. I sat quietly all day. I had enough to worry about that didn’t involve him.

Finally the next morning I confronted him. It was only he and I in the office at the time so I was sure what I was going to tell him wouldn’t be overheard. I  walked up to his desk and told him the comment two days before was not funny and that I had already reported it to our manager and HR. His response was that he didn’t care.

This is when I was set on leaving the company. Nothing was ever done and he got away with it. Shortly after this incident I flew up to WA for a job interview and found out I got the job on the spot. At that point my plan to move us from North AL to Northwest WA started.

1 year ago and I still remember all of the diagnosis process so vividly. The hospitalization to check for seizures, weekly OT appointments that were so hard to endure due to him fighting it all.

One year ago and we have now come so far. He’s in preschool and from what I hear from the teacher doing well. He’s in music therapy that he loves. He does gymnastics and is slowly but surely starting to catch up to the other kids.

One year later and I still have a hard time dealing with it all some days. Before Alvin was diagnosed I had no clue what Asperger’s syndrome was. I knew about Autism Speaks but didn’t really understand how they could help.

One year later and now I advocate. I wear my Autism Speaks Hat/ beanie at work all the time. I speak openly to co-workers about him. I don’t hide it because I want more people to understand what this is and how it affects people. I don’t hide things at the gym. I speak up openly and honestly about what is going on to parents at the gym. The more they understand the better they can help kids in the class understand why he acts differently.

One year later I’m a different person. But you know that’s no necessarily a bad thing!

Wednesday, October 19, 2011

With great progress comes great regression

With great progress comes great regression.

This was my main thought tonight while watching gymnastics. After a year of this you would think I would be used to the ups and downs, but the truth of it is I'm just not. Tonight Alvin regressed in behavior. He was very giggle and required a lot of re-direction. His teacher didn't even attempt one skill with him tonight for some reason that he never explained after class.

See right now with his music therapy I am lured into a world where for 45 minutes a week he isn't so awkward. For 45 minutes a week he works with a teacher that gets him and that he adores. Tuesdays are great. Tuesday's he leaves music therapy singing songs in the car and in a pretty good mood.

Wednesday's however can be cold hard reality. Wednesdays are when he is around other kids his age and the socially awkwardness tends to come out. To be honest some Wednesdays just suck.

So once again this week I put on the brave face, did what I could to help and accepted that for this week he regressed and all we can do is keep working on it.

Monday, October 17, 2011

1 year later

We started this whole journey about this time last year. My sister recommended we get Alvin seen by a speech therapist at Elliot's first birthday party. From the time we first heard the word Austim from the speech pathologist we were sent on quite the spiral. Of course the speech therapist couldn't officially say what she thought was going on with him so we were referred to an occupational therapist and psychologist as well as back to his pediatrician for a full evaluation. The next month was spent with me running all over the place taking him to each appointment and hearing the news. Asperger's syndrome combined with an atonic seizure disorder. Fun stuff. After looking at all our options for the seizure issue our pediatrician recommended no medication because he will probably grow out of them and recommended for speech and occupational therapy.

A year later and he has come so far and W and I have learned to deal with it all better.
Compared to a year ago:
1. He makes better eye contact. He is learning slowly that making eye contact and talking to someone isn't a bad thing. His eye contact with his gymnastics teachers and music teacher is so much better than it used to be and the constant positive reinforcement every time we see them seems to be paying off.

2. He is learning to speak so much better! Now most days we can get 4 to 5 word sentences or phrases with little to no prompting. He is much better at telling us what he wants and needs and can better tell us when something is wrong or if he likes or doesn't like something.

3. We finally have night time accidents to a minimum! Its no longer an every night thing and he no longer needs to wear pull ups at night or for nap time.

4. Motor skills improvement. Alvin is no where near as clumsy as he used to be. Don't get me wrong he still trips over his own feet and has the standard 4 year old accidents but its no where near as bad as a year ago. He can now walk up stairs alternating feet and is beginning to more actively participate in gym games without as much frustration or wandering off because he's board and just can't get it.

After a year we still struggle with these things too.
1. Social- playing appropriately with other kids his age and his sister. Some of its the normal stuff about taking turns with toys and other preschool stuff. Other things are more like answering other kids when they ask his name.

2. Public meltdowns- Oh yes we still have tons of these. Depending on the day he could have a complete and utter meltdown in Safeway or Target or any other store. We still get the constant looks about why he is acting that way. I'm getting used to the looks and tend to just ignore them all. He is getting better but still has a lot of work to do.

3. Tantrums at home- with better communication comes more tantrums. He thinks now that just because he asks for something that he will get it. When he doesn't he can erupt and the meltdown can last hours. Its something that we jus work on little by little and try to teach him that just because he doesn't get what he asked for its still ok.The best way to think about it is like him being about 2.5 or so.

All in all the past year he has improved in leaps and bounds. At this point with the combination of developmental preschool, gymnastics and music therapy I think we are on the right track to helping him.

Thursday, October 6, 2011

Music therapy and tremendous progress!!

"If you know one child with ASD, you know one child with ASD."

"Parents of kids with special needs never take milestone for granted."

After my last 2 days these quotes have been echoing in my mind. Remember when I said something about how therapist before had recommended music therapy for Alvin. Now I wish I had listened a little more and worked harder to get him into it.

Let me start out by saying most 1st appointments like this leave me feeling drained and down. For those who have yet to experience this the therapist normally start out by evaluating your child and then telling you the dreaded yet expected news. How much of a delay your child has in the area that they specialize in. I’ve left a few of these ready to go crawl under the covers for a few days. But like everything else for him I can’t do that. I struggle to gain the confidence to subject myself and him to this over and over and eventually progress is shown and things get better.

This week was our first music therapy session. We got there and Alvin was surprisingly calm. He saw his teacher and could not stop grinning! We go into the area that we are going to be working in and immediately he see’s steps and a tv he can’t turn on. Oh this is a great sign. I’m mentally preparing myself for the meltdown at this point. He doesn’t melt down though. He sits in my lap and fights doing shakers and a song then the guitar comes out and he is hooked. He suddenly pays attention at least for a few minutes.

Over the next 45 minutes we do many things, ukulele, guitar, silly preschool songs and other instruments. At times he fights it but never completely melts down. He even initiates a song and plays the ukulele while his teacher plays the guitar. In the end it was a very positive session and for once I left not wanting to drink heavily.

Then is where the shocking stuff starts happening. On the way home before I could ask him, Alvin started to say "I play music with Teacher Jesse". Ok so this is good. He’s calm all the way home and saying the same phrase many times. That night he did similar things and was overall pretty good.

The next day is the point where my mind is blown. I pick up Alvin to take him to a store, dinner and then the gym. On the way out of the store he tells me "Mommy its raining outside." As I walk him to the car I’m floored but just don’t let myself think about it too much. We go and have dinner at Wendy's as planned and then head to the gym so he can get his wiggles out before his class starts. Amazingly as soon as we got there he was walking up to the door saying "There's teacher Alex!" He did his normal bouncing around and spinning and when Alex walked out of his other class Alvin ran up to him and with no hesitation said, "Hi teacher Alex!" and then ran off. But the more important thing is he said it with no prompting or cues! 

Class starts and he is a mess. Running all over the place. I go in to make him sit on the red mat and Alex looks at him and asks him what his name is and with no hesitation he said Alvin and this is mommy. Seriously?! He actually just said his name when asked!!

The rest of the class goes well with him needed only small cues to stay with his group and on a certain number of activities. When it was time to leave he ran up to his teacher and with no reminders said "bye teacher Alex" and then sought out the other teacher and told her the same thing.

We get in the car and on the way home the shock is setting in. He is actually talking and answering some questions appropriately for the first time ever! When we pull in I go to open his door and he asks for help directly from me to get out of the car! 

At this point I'm bouncing off the walls. Seriously this is a kid 6 months ago who could barely put 3 words together and had to be prompted to do everything. Even up until last week there were constant reminders and one way conversations in the car. I have always talked to him, even if he doesn't answer. I know one day he will so like I said before I treat him like a normal 4 year old. 

Right now something finally clicked. We went to our first music therapy class on Tuesday and something there clicked with him for the first time ever. Something clicked in his head that helped his language explode.

4.5 years old on his sister's birthday and he finally starts talking to us more! I can't wait for next week's therapy session now. Not that its going to do this again but the fact that he likes it and has been talking about how he plays music with teacher Jesse and gets so excited when we talk about it!