Setting up for success

A couple of weeks ago I attended the Seattle Autism/Asperger’s conference and it was amazing. First off I got to hear Temple Grandin speak which was absolutely amazing. I also got to meet her in person and get a copy of her book, “Thinking in Pictures” signed.

Another person that I got to hear speak was Jennifer McIlwee Meyers. She was so engaging as a speaker and I took away one big thing that I am about to start implementing with Alvin. That is setting him up for success. She used a few example of how her parents used baby steps to prepare her for things and by the time she needed to use them all together it was a manageable task. Once she succeeded at one thing that gave her confidence to go and begin to tackle other things one by one.


Alvin’s overall new goal is working on gaining independence. Now that we have finally begun to really unlock his verbal abilities its time to focus on needing less re-direction and working more independently. This applies to what he does in gymnastics, music therapy, the preschool classroom and especially at home. We are working on this in baby steps very hard in the gym and music therapy. Making independent choices, verbalizing what he wants and doing a skill/task when asked to or saying no thank you if he doesn’t want to. This has gone pretty well and each week we push a little more.

We have also been using this schedule to help him when we go out to do multiple errands and we have had pretty good success with him. He loves knowing what is coming up next and loves reading and moving the stickers off when we are done with something.

Alvin's schedule. This is an example of what we do on his music therapy days.

I say all of this because next week Alvin is going to do a camp at The Little Gym. Does this make me nervous? YES! But is it time that we give him a chance to work on independence, yes.

What I am going to do is attempt is help him by making up a basic schedule that shows the order of activities that will be done during camp. This isn’t going to be detailed but just a high level. I’ve talked to a program director at the gym and she has agreed to help me out with this.

The whole goal here is for the camp experience to be very positive for him and the staff working with him. I want to do what I can so his first camp experience is a success. Its 3 hours around normal kids. Some of the kids he will know and some he won’t. He will know the instructors thankfully and that should make things easier.


I'll do another update after the camp is finished but right now all we can do is try and hope for the best.

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!

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!

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.

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 1^st 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!

A new therapy

We have done all kinds of  therapy with Alvin over the past year. We have done the traditional route of occupational and speech therapy. We are doing ABA at school and social skills work at the gym and now we are doing something completely different.

We have been told by a few therapist that have worked with him that he would be a perfect candidate for music therapy. He used to love directing the pep band at hockey games.

We knew he loved music but weren't too sure how to go about getting music therapy started. The program in Huntsville had a long wait list to get in.

So what do I know about music therapy? Well lets see.....




Ok, so I don't know much at all about music therapy yet. I know that I have heard it can help kids like Alvin with speech, fine motor skills and cognitive development. What is he exactly going to do, not entirely sure yet. I know that he will be working with 2 instruments to start being the drums and the ukulele.

The best part of this for him is he will have a teacher that he knows. He will be back with "Teacher Jesse"! Alvin has been asking for him the past few weeks and they will be re-united for once a week session in his home as part of Harmony Music Studio. I'm not sure who is happier about this us or him! We have talked via email and phone and have a game plan. After a couple of weeks of getting used to the routine the thought is to make some goals. Something that in a 4 or 6 week time we can see what he has accomplished and what things need more work.


So once again I am going into the unknown with something else to help Alvin. I will of course be documenting things here and shorter burst on the facebook page and twitter. We may not know a ton about what we are about to embark on but I do know one thing. I know that Alvin will never be made to feel like he is doing something wrong. It is all about having fun and helping him get better at the skills he needs work on.

ASD therapy, are we doing enough?

Are we doing enough for him? This is a question that really bugs me some days. Right now he is developmental preschool with 12 kids a lead teacher and 2 para-educators that stay with the class. He’s getting social integration, fine motor skills practice and speech therapy 5 days a week for 2.5 hours a day. Then there is Top Soccer. A soccer program for kids with developmental/physical disabilities. He has that once a week though the end of October. Then there is The Little gym. Here they focus on preschool skills like listening, imaginative play, and staying focused. They also work on gross motor skills using gymnastics equipment and games. The gym is the only place he gets to really practice social skills he’s learned with other neurotypical kids.

With all of this I wonder if it’s enough or is it too much. This thought always seems to creep back into my mind every so often. Now we are thinking about adding a music therapy class to the mix with the teacher I referred to in the previous post.

With everything that we do is it too much or not enough. I wonder if he has enough down time with it all. Time where he isn’t in a therapy setting. I do my best at home to let him just be a little boy and do his (at times) odd things. I try to get both kids to a playground at least once a week in addition to all of the other things. Plus most Saturday mornings are spent not doing too much but snacking on breakfast and watching cartoons while playing trains, blocks or whatever. I also worry about Elliot. I make sure I get one on one time with her every week but is it enough?

So here is my question for other parents of ASD and other special needs kids out there. How do you know when you are doing not enough or too much?