Don’t feel sorry for me

A couple of weekends ago I was working 1st shift on an airplane in the factory and I got to talking to one of the shop guys about the upcoming holiday, kids and such. When I mentioned that my choices this year were based on how best to help Alvin and mentioned that he had a form of autism he got very quiet and said, “I’m so sorry. That has to be so hard on you and your family.”

While his reaction is normal and I understand that part, I think my response caught him off guard.

I immediately said “I’m not. Alvin is very unique and autism or not he is still a 4 year old boy and at times just has more quirks than other kids his age. Even if we didn’t have the diagnosis I would (and do) treat him like a normal 4 year old.

I guess after a year of dealing with this I’m starting to learn to not let autism/asperger’s syndrome define my son. The diagnosis was a huge help to understanding him, but it doesn’t define him or his future. W and I have a running joke that our goal like any other parent is to raise him to the point that he can be self sufficient and leave our house!

Lately I’ve made it a point to reshape my view on autism.

Autism is not an excuse but a reason behind why Alvin acts the way he does. 

I’m not willing to just accept things as they are and shelter him from the world. I’m not willing to take the easy road. Lately we have been pushing him very slowly but surely. Every week there is a new challenge; be it at the gym, music therapy or just normal social interactions. We have begun to push his limits and its working. Verbal skills have increased and he is becoming quite the little professor. He has great manners and says hi and bye to everyone we meet. It sounds awkward as anything, but that doesn’t matter. The point is he is talking and interacting in his own way. He has now done 2 camps at The Little Gym and while the separation was hard at the first one it got better with the second, the rest of both of the 3 hour camps were deemed a success.

I guess what I am getting at here is that most days the fact that he has this mess fails to make any difference in what we do. I don’t feel sorry for us and don’t expect anyone else to. Sure I would love more understanding but who wouldn’t. I guess through all the craziness it can be I’ve adopted W (my husband’s) outlook on it. Autism can be pretty awesome if you just take the time to get to know the person!

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.

Embracing the odd week 2

This week’s odd moment most any parent can relate to. For parents of kids with Asperger’s Syndrome this scene might really hit home and hopefully make you laugh far too much.

Let me preface this by first off saying Alvin has an obsession with toy cars. He loves to line them up by number. This can be ascending or descending order. The numbers can be arranged by even or odd as well. It can be by make or model, color, you name it. They can be racing or head to head crashing all in a line. He’s been doing this since he was about 2.5 and to this day cars with numbers on them are a big thing.

On Wednesday nights before gymnastics I generally take Alvin out to walk around stores, get dinner and otherwise spend one on one time with him. This week because I have rocks for brains I took him to Toys R Us looking for a specific Melissa and Doug toy band set. Well the general rule in a place that carries Hot Wheels cars is if he behaves himself he can get one. Well he had been pretty good. No major melt downs and didn’t run off so we went over to the large Hot Wheels cars display and he was allowed to pick one out. He grabs this one and I just cringe!

The next thing he does it say loudly “69!” I try and give him another number car but it doesn’t work. His mind is made up on that car. All I can do is shake my head and continue on. We pay for the car with no major incident and once back in my car he is very happy to have the number 69. We head over to Jack in the Box for dinner since he loves their rice bowls and so do I. Once entering he starts yelling 69 over and over. He doesn’t want to be in there so all he can do is yell a number. I get our food we sit down and all I can do is laugh. Then I text my husband and some friends and the laughter continues.

Now granted I know that what happened here is common. A kid has a very strong interest in something and doesn’t want to let it go. The main difference is most 4 year olds have better verbal skills that Alvin.

On the plus side though for once I was able to laugh at the situation instead of being embarrassed and think only Alvin would be proclaiming his love for the number 69 in the middle of a store!!

Embracing the odd, Week 1

After I posted the last blog about embracing the odd I had the idea to start doing this on a weekly basis. Since Alvin has one with Asperger's syndrome, and Elliot by all accounts is normal but has about a year speech delay I figured a once a week I'm going to openly talk about something odd that has happened with one or both kids and in Alvin's case an explanation, if any, as to why it is happening.

I start this week with an incident that happened at the gym on Wednesday night. Alvin was in his normal gymnastics class and has recently learned everyone's name. With learning everyone's name he now wants to say hi to everyone. Well there is one problem with this. He wanted to do it all class long and during every station. While it was cute at first it quickly became an obsession. At the end of the class his teacher commented that he was quite social. I of course was watching the entire class and part of me just couldn't help laugh a little at what I saw and say only my kid. The teacher is working with him to be more independent and with him obsessively saying hello to everyone that makes it a little hard for the other kids to not pay too much attention to him and make him do the work himself!

Granted in this case we know exactly why Alvin is saying hi to everyone. Since he just learned about two months ago how to express himself, now is learning how to talk at the right time. This is where being around normal kids helps a lot. Socially at times he is around a 2.5 year old. Which when you watch his social interactions makes perfect sense. In the gym he gets the social interaction with kids his age and older. The only way for him to learn the way to be socially like a typical 4 to 5 year old is for him to be around them. So why some days it might be painful to watch its necessary. He still has fun of course and seems to be catching on pretty well.

So this week while I struggled to watch the awkwardness I also have to remember something. It will get better. This will not last for too terribly long and he will move forward. Two months ago he was barely talking and expressing himself and certainly not saying hello to anyone.

So this week I embraced the social awkwardness of his actions and just try not to laugh too much. Because like we say at home, at least he is talking!

Embracing the odd

Any parent of a child with Autism/Asperger’s syndrome knows what I mean by odd. Our kids do things that boggle the mind at times. Refusing to sleep in their bed, wearing clothes backwards as much as possible, only eating certain types of foods, this list could go on and on. The point here is that we naturally seem to be able to embrace the odd things our kids do maybe a little better than other kids their age who have no underlying issues.


Let me tell you something though. I can embrace the odd things at home all day, but I have a really hard time with it when we are out in public. You know when the sudden yelling occurs. The hand flapping, jumping or otherwise out of place behaviors in the grocery store and people start to stare. Some nights in the gym I am just shocked at the odd things he does or says.

Then I read this blog posted by Angel who owns The Little Gym we first started going to before the move and it suddenly hit me. Here are a couple of  excerpts from it:

“Wonderful, hard-working parents will frequently come in to the gym and feel they need to describe some behavior their child exhibits and almost apologize for them. And what I would like ALL parents to understand is that many, many parents feel this. Even ones with “typical” children. You are not alone. And we can all laugh together at the odd behavior that our beautiful, creative children sometimes exhibit. I would like to describe now some of the wonderfully unique behaviors I’ve seen over the years. These examples come from all kinds of children. One of my favorites was a 4 or 5 year old (typical) little girl who insisted on walking, or rather traveling, everywhere in a bear –crawl for months. Still makes me laugh. (because I wasn’t her mom!) Another 4-year-old boy brought a mermaid with him to every class and insisted she sit on the ledge and watch. Some kids talk non-stop. Some insist on having a blue ball. Some make you call them a different name each week. Some will only respond if you treat them like an animal. One 5-year-old boy come to class dressed as Spiderman. His Dad shook his head and apologized. Said he couldn’t convince him not to wear the costume.”

“One 2-year-old in my class last week was as happy as I’ve ever seen a kid, smiling and laughing, until I pulled out the parachute. And then he started screaming like he was in a horror film and did not stop until I put the parachute away. At which point he began smiling and laughing like a switch had been flipped.”

 

The last part though hit home!

“I say embrace the odd. It really is the norm. Laugh and see the beauty in the uniqueness of these behaviors. Don’t feel embarrassed by them. Be proud. Shake your head and think, “only MY child would...” -Angel Hundley Gym Owner”

In all seriousness how many times have you looked at your child and think only my child would do that! I can’t tell you the number of times I have thought that or said it out loud to other parents. Seriously most of the time he does the group warm up run with his head cocked sideways. Why I’m not too sure but it looks really odd!

I sent Angel a message last week and told her how much I liked the post. Part of the email said:

“I’ve been so concerned with what other instructors, parents and kids at the gym perceive of him I lost track of what is important at the gym, to try your best and have fun. Granted we know that Alvin’s skills will most likely not be up to par with other kids his age and the social awkwardness will linger but this week I was reminded it doesn’t matter at all. Every week when he walks in he is smiling and giggling with excitement. He says hi and bye to all his teachers and now even his classmates. He runs in grabs his shakers and tries his best, and along the way makes everyone laugh at some of his skill “modifications”!

So I guess your post just hit me. I need to embrace the odd with him every week. He can stay in gymnastics as long as its fun for him. We won’t worry about how odd he looks or where his skills are in comparison to the other kids. Alvin can be himself and as long as he is still having fun then there is no real reason to pull him. Who knows he may even teach the other instructors, kids or parents something along the way!”

So with the holiday’s quickly approaching I am going to do my best to embrace the odd. I’ll laugh at all the crazy things he and his “I refuse to talk” little sister come up with at home and in the gym. I’ll do my best to ignore the stares in stores when he melts down due to sensory overload and just laugh when he suddenly says something completely off the wall and probably completely inappropriate but funny never the less!

So why it’s not always to keep your cool during times like this I think I’m going to try a little harder. Alvin is his own person. Asperger’s and all his unique/odd characteristics are just a part of who he is and I am just going to try and embrace it a little more.

Down time

I love how certain posts that I do here come from conversations I’ve had with coaches, therapists, family or friends. This is another one of those posts.

A  few weeks ago I was talking to Alvin’s music therapist about how many therapy activities he does a week. At the time it was preschool in the morning (that uses ABA as the basis of the work they do with the kids), gymnastics once a week, music therapy once a week and Top Soccer (soccer for kids with physical/developmental disabilities) once a week. Then on top of this we try and work on at home some of the skills he is doing at school, music and gymnastics for about 10 minutes a week.

The next question he asked made me think. Does Alvin have down time? My immediate answer is yes but later on the way home I got to thinking about it all. He had mentioned that he and his wife had worked with kids that just never seemed to get a break and how tough it was on them.

So does Alvin get a break from it all. Yes he does in a few ways. Lately due more to Elliot’s love of art projects I’ve tried to once a week to let both kids sit at the table and paint pictures. I started giving them finger paint and paint brushes just to play and experiment with. The only rule is that everything stay on the table and that they don’t get up until they are completely done painting.

There are also evenings after Elliot goes to bed and weekend mornings. Alvin loves the Big Bang Theory and honestly by 7 or 7:30 I’m exhausted and ready to stop structured activities for the day anyway. Plus weekend mornings I let them watch a full morning of their favorite cartoons and snack on breakfast before we get up and out of the house for the day.

The thing is W and I try and use every day as a learning experience for both kids. As most of our friends here can attest to Alvin is treated like a normally developing 4 year old. We expect him to follow all the same rules as his sister and at times be a role model for her.

I think it’s important for Alvin (and Elliot too) to have the time to play together or do things with no schedule. As much as I love their activities the unstructured time is just as valuable to learn social skills and how to play together.

So do any of you have thoughts about how much is too much and the amount of down time your kids get?

Never underestimate me!

This is what I felt like when dealing with Alvin this week. I felt like when I knew what to expect from him he completely proved me wrong.

Monday night Alvin had a makeup class after missing last Wednesday. Since it was Halloween we knew there wouldn't be many kids there and I thought this would be great for him. Small class size normally means he does well.

Well as it turned out no one else showed up so Alvin ended up working with his teacher by himself. After about 10 minutes he started to panic a little and left Alex during the warmup. He told me he wanted to go home. I just reassured him that he was ok and to go back. With a little help / reassurance and a few mild tantrums during the class he made it through the full hour by himself. This is no easy task considering at times he was completely freaked out.

Later that night I finally figured something out. When Alvin is one on one with a teacher he is suddenly unsettled. He relies on other typical kids to watch and see how to act during class. When you take away the other kids he is lost. Don't get me wrong he loves his teachers and pays attention, but tends to learn from other kids as well.

Tuesday music therapy the true Alvin came out again but once again we worked through it and when we left he even yelled out the window "See you next week Teacher Jesse!"

By Wednesday I had started to doubt him a little. It occurred to me sometime between Monday and Tuesday that probably with in the next year or so Alvin's time in gymnastics would come to an end. Kids with Asperger's syndrome and autism in general tend to have poor motor skills. Team or individual sports tend to not be their strong point. So while I had always hoped Alvin would be involved in a sport like I had been the realization that he might not be just hit me.

Then Wedneday night came.  Before class I had talked to Alex about how Alvin would probably only be there another year before leaving. The worry is that at some point the skill gap will be too much and he will start to notice and want to leave. Alex ackknowledged that by the age of 7 or so kids who just want to have fun normally leave and do other things.

Class started and the 3 other little girls between the ages of 4 and 5 were there right on time and they all went in together. These girls in some ways have adopted Alvin. They know he is different but they try their best to befriend him and encourage him just like anyone else.

During the warmup something clicked with him. He was asked to do a monkey jump (start of a cartwheel) over a rope on the floor. Normally he wouldn't even attempt it but that night he did and he did it correctly! The look on Alex's face was great. He was shocked as well that he actually did it.

The rest of the class the pattern continued. He worked harder than normal for the full hour. He listened better than he ever had before and started to try and conquer new skills. After class his teacher was so happy for him. He even told me that one of the girls noticed the differnece and made the comment that Alvin was actually listening.

This is the night where Alvin once again taught me a lesson.

 I can not judge the future for him right now or any day in any shape or form.

Alvin may never be at the same level as kids his age, but does it matter? I mean this and all sports should be about having fun and I guess I lost sight of that. Alvin adores Alex and the other teachers in the gym. He adores the atmosphere and ability to be himself. He loves trying new skills and giving his teachers hi 5's and espeically saying hi and bye before and after class.

One day all the skills he is doing just may click in his head and then again they may not. The thing that Alvin taught me this week is to not worry about it. He will continue to have fun in the gym and suprise us all when we least expect it.

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.

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.

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.

A rough week at the gym

So this week Alvin had a makeup class for missing his gymnastics class the week before and the next night he had his regular gymnastics class. After missing a week I wasn't too sure what was going to happen with dance class and gymnastics on back to back nights but I figured we would just go with it.

Dance class went fine. He participated in all the moves but declined to wear the tap shoes. No major issue though. He still had fun and that's all that matters in the end.

The next night didn't go as well though. It was his normal class for the new season and he knows the instructor so I figured he would pick up right where he left off with Jesse from the summer. Well I was wrong. He did good for about the first 30 minutes then just completely spaced. He was wondering more and more and loosing focus in stations. I finally went back in to re-direct him back to his station and help him do a skill. One of the little girls (who has never had a class with him until now) told me that he was a bad kid and wouldn't stay with the group. I had noticed that 3 of the girls kept their distance from him during the first part of the class but didn't make much of it until then. At the end of the class one of the instructors came in during their closing circle and had a quick talk with all of them about how we are all different and they only needed to worry about themselves.

The comment had me in shock and almost to tears. It finally hit me that this is the way the other kids see him. They see him as aloof and a bad kid.

The parents were giving me odd looks too. Most of them (except for one) has no idea what is going on with him. I'm trying to figure out if I need to say something next week or not to inform the parents of why he acts the way he does. I'll probably just play it by ear and see how things go.

After I helped him back with the group I walked out to the lobby and the other instructor immediately recognized something was wrong. I told her about what I had noticed and proceeded to just avoid the other parents and get our stuff ready for a quick exit. When class was over I just wanted to get him dressed and run away. I helped him get his shoes and socks on and got him out. I was on the verge of tears and all I could tell his teacher is that we would work on his skills this week and figure out what to do next week.

The horrible feeling I had was made worse the next day when discussing this with a co-worker who thought it was good for him to get bullied. He said that helicopter parents just make it worse. Seriously! You have 2 normal kids. How in the world do you know if what I am doing is making it worse or better?

After 2 days of cooling off I was able to let Alex know that I needed to talk to him during Elliot's class. I asked him what he would suggest doing at the next class. He agreed with the plan of me sitting on the wall during the entire class and re-directing him back to the group every time he leaves. The thing is he has been in the gym long enough to know what is expected of him. Now after having months to learn the system he is going to have the same standards of behavior that the other kids have. He will be expected to stay with the group at all times. Granted at this point he will not be doing skills at the same level, but socially we want him to follow the same rules.

I know that this won't solve all the problems. He still has issues with the skills. Ok he has major issues with the skills. He has a really hard time putting things together in sequence. Like putting his hands down and jumping up with his legs to try and do a donkey kick or monkey jump.

There is a huge part of me that wants to pull him out of the gym. I have the worst time seeing him fall farther and farther behind in skills from the other kids. II hate seeing him struggle so much and just barely get it. He tries so hard and I have to wonder when its going to hit him. When is he going to realize how different he is with his social skills? When is he going to realize that his skills are well below the other kids in gymnastics?

For right now we are just going to stay the course. I'm going to work with him the best I can the next few weeks at home with the basic skills he does in the gym and I'll stay in class at the gym and see if it helps. Overall I'll continue to work on the dozens of things we do everyday in hopes that things get better through preschool (and working on his handwriting as homework), soccer, gym and soon music therapy.

I'll try and remember to update next week as to how things go and if the new strategy at the gym is working.

Success of a different kind

A long time ago my husband W and I met working at the US Space and Rocket Center. When we were dating we had the same job, Space Camp/Aviation Challenge Counselors. We had kids all week every week during the summer. We saw all types of kids. The ones that thier parents had all the money and were just there to play, the kids who confided in us because their home life was bad and they were there because thier parents didn't want them at home. We saw kids in every kind of situation you could imagine. We did our best to have fun with them but when you are working team doubles (6am until 11pm) 5 days a week it drains you.

But then for 2 weeks in the summer you are in love with your job again. There are the two weeks that the visually impared and hearing impared students come through camp. These kids don't get a free ride. They have to work so hard in school to even qualify and then they get the chance to come. Teaching these kids at times was a challenge. Helping a visually impared kid see a monitor required some resourceful thinking and sometimes braille. As W can attest to taking them diving in the underwater astronaut trainer is even more fun! The hearing impared kids they were fun too. They were so much fun in thier own way too.

One thing working with those kids taught me was how rewarding it can be to work with special needs kids. Granted many of these kids didn't have developmental issues but they still had tons of challenges to overcome just to get there. Once they were there they worked hard and played even harder. In some small way I started to understand and appreciate what they did and how hard they worked.

Lately I have been thinking a lot about those kids. One night W and I were talking and I compared watching Alvin succeed at something to those kids. When any child overcomes a challenge you are proud of the accomplishment. When you see a nero-typical child get things so easy it can really kill you inside. When I watch Alvin at the gym its heart breaking some nights. I see how hard he is trying. I see him making an effort. Then I see him fail at times. I see the look in his eyes when the colors and sounds get too much and he just spaces out. There are so many of these moments and I do my best to hold it together around the other parents.

Then there are the nights where it clicks. The nights where his attention span is better and he stays with the group. The nights where he tries something new with less hesitation. The times when he does a skill that the other kids may have gotten months ago inside I cheer. I see his teachers light up because they know he has worked so hard.

I appreciate Alvin and what he does like I appreciated the visually and hearing impaired kids. I know that in so many ways he is going to have to work twice as hard as most kids. I know its going to be rough road but I know it will be worth it!

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?

Bye Bye to our very special Teacher/Coach!

During this process of getting help for Alvin we have had some great therapist. In Huntsville it was his OT Mrs Denise that he saw once a week. At the gym is Mr. Matt. Both of these teachers we left and it was so hard to say goodbye. Today at the Autism Speaks walk in Seattle we saw one of Alvin's favorite teachers, Teacher Jesse. We learned that he had left the gym for reasons not important to talk about here.

Teacher Jesse was a big deal for Alvin. When we first moved here Jesse was his first teacher in Sports Skills class. He was the one that encouraged us to move him to another pure gymnastics class due to the sports skills class being too crazy to really benefit him.

Walking on the beam with Teacher Jesse and gaining confidence and trust

Listening to instructions for the group activity

When he moved classes even though Alvin wasn't in his class at the gym Jesse still asked me about him after Elliot's class. Then this summer Alvin was back in his class and all of a sudden took off. Jesse was his buddy and he would do anything for or with him. If imitation is the purest form of flattery then Alvin loved him. He would imitate the movements that Jesse did in the lobby while explaining to parents what another class did. He would follow him all over the gym and was always so happy to go see him.

Time to change stations and he is first in line and ready to go!

From a parents stand point Jesse took time and that's what made the difference. He took the time to get to know him and understand what is going on with him and how best to help him adapt to the gym environment. He had more patience with him than most anyone. He took the time to make sure Alvin made eye contact and got down on his level when needed.

To this special teacher we say thank you. Thank you for the memories and the enthusiasm. Thank you for the fist bumps, high fives and understanding. Overall, thank you for helping our son. We will not forget you!

Please join our fight!

I normally don't post things like this but today I'm making an exception. This next weekend we are participating in the Walk for Autism Speaks at the Seattle Center. Here is our story and why we walk. If you would like to donate to our team there is a link to the life with butters team page at the bottom.

Did you know that every 15 minutes another child is diagnosed with autism? This has occurred in my family.

When Alvin was diagnosed we were floored. How could he be autistic when he talked, was social in his own way and generally a happy kid. That didn't fit autism sterotype that we knew of so we didn't understand. Soon after the start of the diagnosis we found out exactly what it was. Alvin has Asperger's Syndrome a form of autsim. His lack of coordination- related to Asperger's Syndrome. His exceptional skill with numbers- another trait of Asperger's Syndrome. And the list continued to grow. Now we better understand our son and others like him. We fight daily to help him reach his full potential in all aspects of his life.

I am walking in the fight against autism at Walk Now for Autism Speaks, joining tens of thousands of other people united by a single cause and dedicated to raising money to find a cure and build awareness for autism. The money raised at Walk Now for Autism supports Autism Speaks mission to finding the causes, effective treatments and a cure for autism through funding essential biomedical research. One in every 110 children and 1 in 70 boys are diagnosed with autism. Autism Speaks directs 75¢ out of every dollar raised to autism research, awareness and outreach.

Please consider  helping kids like Alvin by joining or donating to our team! LifewithButters walks for Autism Speaks!

Wordless Wednesday- What Butters thinks Volume 2

Inspired by the word if (and a fellow ASD blogger)

Today a blog post came across my feed reader that stopped me in my tracks. The post is called "If" by Autism is a trip. While reading it I just had to take a step back. How many times had I thought the same thing.

So inspired by her post here is one of my own.

If Alvin didn't have Asperger's our life would be different.

Potty training at night wouldn't be such a nightmare.

We could all walk in public without worrying if someone was going to bolt due to anything spooking him.

We could have a normal bedtime process full of stories and cuddles rather than screaming matched and obsessive behavior.

I could play cars with him without his OCD getting the best of him.

Elliot could have more interactive play with her big brother using the kitchen set and stuffed animals.

My husband and I could go to a movie without who that Alvin knows well can come watch he and Elliot and can they come during naptime so there are less meltdowns.

I wouldn't dread going to grocery stores, malls or other public places out of fear of meltdown.

I wouldn't feel like I had to fight so hard for teachers, coaches and others to understand what is going on with him and why.


If Alvin didn't have Asperger's.

We wouldn't have moved across the country. Yes we moved for my job but the resources in the PNW are far better than down south. I also would have never met in person some amazing people that my husband is great friends with up here.

I wouldn't laugh nearly as much. Not a day goes by where he isn't dancing, singing or saying  inappropriate things that make us all laugh.

Elliot would not have such great exposure to others with disabilities. Since we stay involved with the community she always sees kids better and worse than her big brother and we feel like she is better for the exposure having not even turned 2.

I probably wouldn't have him in gymnastics. He would be playing ice hockey or soccer.

I would have never known it wasn't normal for a 2 year told to be able to count to 100!

I simply wouldn't have met some amazing teachers at The Little Gym. While they teach him gymnastics I think he teaches them the joy of watching a kid like him finally get it!

I would have never gained more compassion for him and kids like him. I have seen so many on the spectrum and I seriously am amazed by each child and each parent.

I would have never started this blog. Its given me an outlet to talk about what goes on, what we succeed at and the times that we struggle. While I do have a personal blog this one has so much more meaning.

What's wrong with him?

This evening before gymnastics Alvin was having one of his moments. He couldn't transition to gym from dinner and was mad at me for not letting him take his lemonade inside. After a few moments of meltdown he was able to calm down (with the lemonade I grabbed from the car). After Alvin was back to being his happy self bouncing off the walls and saying hi to his teacher one of the little girls from his class came right up to me and asked "what's wrong with him?"

The little girl was around 5 years old and the question was innocent. I was shocked by the question and honestly had no idea what to say. All I could say was he was just acting silly at the moment. I wanted to tell her more, but then again I dind't want him to be looked at any differently but wasn't sure how in the world to tell her part of what was going on with him.

So my question to people who have been at this longer than I. How do you explain it? Do you just brush it off or are you honest? How do you handle the question? Any advice would really be appreciated!

Wordless Wednesday- A backflip on the bar

 

Turn up the sound to hear the sound effects he makes during the flip!

A post less about Butters and more about Peanut

Alvin was diagnosed shortly after Peanut's (Elliot's) first birthday. This weekend while attending WA autism day I got to thinking about how Elliot will grow up.

I can certainly say she is not going to grow up feeling like her brother is odd or insensitive to others like him. If anything she will be more aware of people's differences. Probably better than most kids she will understand disabilities and how they affect people.

Saturday this just all kind of hit me. We were walking around the farm and visiting all the booths. Alvin wasn't feeling to hot due to having some nasty cold. Elliot however was her normal happy self. She looks past all the kids and if they were in wheel chairs, strollers or otherwise. She looks past screaming kids, meltdowns and other behaviors people see as odd. She just sees them and either stares them down in a way only she can! She is loveable and playful.

Also due to all of Alvin's issues I do keep her in gymnastics like Alvin. I keep her in though for a different reason. She needs to be around other kids her age that are normal. Who act like normal 1.5 to 2.5 year olds.

I can't say that I'm glad Alvin has autism but right now I think I wouldn't have any other way. While Alvin will struggle at times to do things she picks up with ease she will always him to teacher her about patience and how people think and act differently. Since we stay involved with the autsim community she will have plenty of exposure to so many types of disabilities that there will be so many chances for her to learn and ask questions.

The OCD mess and siblings

Many days Alvin acts normal. He runs around now more than ever playing with cars, trains or action figures. He even likes to play dress up in our clothes and shoes as well.

Then there are days like this past Sunday when it all falls apart. He has a day where his OCD tendencies get the best of him. We went to see his "uncle" (W's best friend from high school) and his wife along with their new baby girl. He was very excited and thrilled when we got there. Soon after getting there and getting his bearings about him he started playing with cars from the older boys room. He was very picky about how they would be lined up to start a race or how the patteren was when he lined them up nose to tail.

Then Elliot had to join in the party. She started picking on him. I doubt she really meant it, but she was just being herself and wanted to play with anything and everything he put his hands on. Soon it just got to be too much and every time she touched a car a complete meltdown happened. These meltdowns went on the entire time we were there. If Elliot or one of the older boys attempted to move a car out of place it was disaster. Finally we said our goodbyes and started the trip home. The ride home he slept and was generally pretty happy and remained that way until time to go to bed.

Some days I love how Elliot is his best friend and therapy. She is very fiesty and doesn't take no very well. She knows how to push her limits but at the same time loves to cuddle and share her snacks with us or the dog.

Then there are days I wish she understood. I wish she could understand how her brother just needs his space. Its not that he doesn't love her or want to play, he just needs to do his own thing for a while.

One day she will understand. One day I will answer her questions about why her big brother that she loves so much and adores doesn't act like other kids.

But will I need to tell her? Will Alvin at some point get better where she won't notice a difference? Will the OCD part of him become less pronounced to the point that she or anyone else would know?

These are all normal questions for me. Every day that he has a bad OCD kind of day these thoughts creep into my head. I try not to dwell on it and I understand that only time will tell and the best thing I can do, that we all can do is accept him for who he is today and work with him the best we can.

Helicopter Parenting a child with ASD

Helicopter parenting. We have all heard it it and know where it is. Its that parent/parents that follow thier kids all over the play ground.

One day while at the play ground with both kids I realize I have become that parent with Elliot and Alvin both in different ways.

With Elliot its because she is an almost 2 year old little girl that I'm pretty sure thinks she is a 4 year old boy. She is absolutley fearless and will climb on anything and everything around. Last weekend we even caught her climbing a 6 foot ladder trying to get to where she could hang from the monkey bars! I follow her around making sure she doesn't get in too much trouble. At the gym I just let her run. Its a fairly safe environment and she pays attention pretty well during class (for an almost 2 year old) and is generally well behaved.

Group hula hoop activity

Playing with the parachute

Practicing walking on the balance beam by herself!

Swinging around.

Alvin on the other hand is the complete opposite. At the play ground as long as he is in the general area and I can see flashes of him running on the equipment I don't care too much. The gym is another story though. To me the gym is a form of therapy and I tend to make sure he is doing what he should. He is normally pretty good during the warmup and group activity but station work is harder. He is expected to stay with a small group and one teacher and only do the activities at that station. Well for him that is really hard! There are bright colors and other activity going on that its just too hard to resist sometimes. With the gym I do tend to intervene. I have an understanding with the staff that if he gets too distracted that I do walk in and redirect him back to his group. I feel this is important to make sure he at least tries everything.

Group activity on the airtrack.

The gym stations work on specific things that work different motor skills.The other thing that stations do is work on building his confidence to try new things. The specifically challenge him to do more every week and constantly work to remove him from his comfort zone little by little.

The videos below are from show week a few months ago. Even for his routines the instructors are always working to bring him out of his shell more. This past week he even did a flip on the bar for the first time ever!

The helicopter parenting aspect comes from how I act in the gym as compared to other parents. I do get odd looks from the other parents there. If their child isn't paying attention or goofing off otherwise they generally don't care. The dirty looks I get for redirecting him is actually funny. Most people just think he is odd and think I'm over doing it but little do they know.

So what are your thoughts? Do you helicopter parent at times?

Hugs!!

So yes I'm working on another post about helicopter parenting with a child with autism/asperger's but this was too cute to share! Butters has always acknowledged his sister but never been one for much affection to others. When his baby sister came home from the hospital he just laughed at her. Tonight after just over a year and a half he voluntarily came up and held her hand and started hugging her!! I was shocked and amazed and just had to do a celebratory post!!!

Actually holding her hand! She was absolutely thrilled!

Hugs!!!

He just didn't want to let her go!

IEP progress report and Show Week

This past week was Butter's last week of school and show week at the gym. Plus we also had Austism Speaks night with the Seattle Mariner's so to say the least it was a busy week.

I've been nervous for a few weeks about the IEP progress report. I guess I saw so many improvements that I was just hoping that he was doing the same things at school.When I first read the progress report I was suprised he wasn't doing better. Most all of the remarks he got were an emerging skill except for language which was more of a mastery. After I read and re-read the comments I was happy with it. He is making progress which is the key. If he had made no progress in the areas it would have been down right depressing. Once I had time to sit down and think about it his teachers were exactly right. So overall a very promising report and plenty to work on this summer.

Tuesday night we had the Autism Speaks night at Safeco Field with the Mariner's. To say we all had a good time is an understatement! Butters was in love! The staff was so nice and many times came up to give the kids baseball cards out of no where. The especially loved the play area. Staffed at the entrance  and inside there were plenty of extra eyes just incase he decided to bolt. Also they had a strict policy of no alcohol inside the area at all which I loved! Butters was in love with the area though and we came back a few times before the game started so he could get some energy out.

Yum, Garlic fries!

Loving the play area inside Safeco Field

Chilling out in our seats before the game

Fist bump with the Moose! I was so shocked that he even wanted to get close to him!!!

Of course we had to have a hotdog at the game.

Wednesday night was the big Show Week at the Gym. To say the least I was really nervous about this but it turns out it went much better than I had imagined. Below are his routines on the bar and balance beam. I tried to get his tumbling routine on the floor but after people started clapping half way through he got freaked out and bolted away so I had to run after and retrieve him to finish the routine.

Beam routine!!

Bar routine!

So the next topic I'm planning on tackling is helicopter parenting. Does having a diagnosis make you more aware and protective of what they do and when or have you adapted to it just not phasing you anymore?