Amazing

He actually watched - and I mean watched - his first thunderstorm with excitement yesterday.  We still had a few screeches as the thunder wailed in the air but how amazing it was to see him enjoying something he has literally despised for years with a double rainbow to end this 'first'.  I can thank my sister for getting him his red headphones which prepared us for quite an amazing 4th of July also - which again was a first with him being able to function in a very crowded environment.  Those headphones tag along with him as often as bo-bo; his first stuffed bunny he received when he was 2 months old.

We are learning how to work with Matt's sensory needs though it has been quite a rough road.  I am seeing his behavioral disruptions more as a reaction to a sensory dysfunction than a defiant disobedient little boy.   The key to it is to catch it before the behavior comes out.  This has been a tricky quest for me as its usually not until I see the behavior that I realize what caused it.  I guess we are on the right track as I now know when excessive noise is going to be present we pull out those red headphones.  Thanks sis!

My Autistic Child is......

A dorable

U nderestimated

S ensitive

T eachable

I rrational 

S tims alot 

T houghtful (yes he does display feelings) 

I ntelligent 

C omputer Addicted 

 

I don't want a cure as he is ...so special in his own unique ways. I just want to teach him how to deal with his differences.

Just another day

Time to pour me a tall glass of martini - only wish I had one.  Yes, today is just like any other day -- full of rages and disappointments.  A two - 1/2 hour temper tantrum cause he could not find his game boy and swore mommy took it as a punishment.  Only to find it at the bottom of his bed stuck in his covers.  Some days I just wish I could turn me off.

Get ready for a chat around 7:00 - 7:30 if you are around.  I will have it up and running so come and join if you are ready and able.  Marti

Chat tonight 7-8pm EST

I am going to try to start something new here and add a weekly chat on Thursday nights from 7-8 pm EST.  Time to come together and chill.  Mark your calendars.  Our first chat will be tonight January 21, 2010.  Come and join the fun.

Scared....

Frightening word I know - but a glorious word to me.  Matt doesn't explain his emotions very well so when he comes up with a descriptive word like this I am like a mom seeing her child taking the first step.  He has had his cast on now for one and half weeks and trying to get him to bathe has become a battle in itself.  Even mentioning the word bath was throwing him into hysterics.  It got to a point over the last 11 nights that it wasn't worth the aggravation to convince him he needs to get in the tub.  I know - disgusting - yuk no baths.  But wait - he has had one bath so far so it really isn't all that bad.  (Of course he has had daily wipe downs - but to get him to get into the tub - I won't even go there).  It wasn't until last night he revealed why he has been so reluctant (his word now) to get into a bath.  "I am reluctant to get a bath because they told me not to get it wet."  (Even though he had his arm double wrapped in a trash bag and taped so no water could get into it with his last bath).  He goes on to tell me - "I am SCARED that if I get it wet it will be ruined and I will have to have another one put on".  So all his negativity when I mentioned the word bath was directed to this hidden emotion that he did not verbalize earlier.  

Of course he tells me this as we are doing our bedtime routine.  We always try to discuss our day prior to bed when he is much more relaxed and open minded.  So when I asked Matt why he gets so mad when I tell him it is time for a bath he follows thru with the above.  I allowed Matt the opportunity to give me some ideas on how to get a bath and be sure his arm doesn't get wet.  He said - "After we put on the trash bag what if we wrap towels around it."  What an AWESOME and CLEVER idea I told him.  "You are so smart Matt - why didn't mommy think of that?"  He said - "Because you are not the one with the cast".  So fingers crossed he will get a good bath tonight.

Spazzed Out..

Saturday January 16 - I believe it was his 4th outing with Kevin - a volunteer from Big Brothers Big Sisters - and Matt was really looking forward to it.  Last week they ventured to an indoor go cart establishment which the drive alone was about 30 minutes away.  I let Matt take his gameboy along with him as this is a normal routine for him on so called long trips.  Fast forward to this week.  Kevin enters our home and immediately Matt ask for his gameboy to take along with him.  They were going to the local mall to look for a model they will eventually put together and Matt is taking a gift card he got for Christmas to see if he could buy something with it.  He WANTED to take his gameboy with him.  I explained that he needs to leave it home this time as the trip was less than  a 10 minutes drive.  Within seconds of me telling him that he could not take it with him all HELL broke loose.  This is one of the times I wish I had a video running to capture the full incident just to replay and understand if I handled it the correct way.  He became Hulk Hogan (remind you he is only 11 years old and about 65 pounds) and his body strength became that of HH.  Becoming very physical and vocal - screaming if he can not take his gameboy then he is not going out with Kevin and will leave without him.  Matt has taken off out of the home before so I locked and guarded the door so he could not leave. (which doesn't matter as he can easily unlock the door - which he did attempt to do but my hand covered it up so he couldn't get to it).   As he is trying to leave the front door - I made my point again in a monotone voice that he is not taking his gameboy with him and he will not leave this apartment until he calms down.  I continued to block the door and not saying a word as he is spazzing out.   I glanced over at Kevin and gestured with my hands to give me a few minutes.  I would take a guess and say just at the door alone the emotional outburst lasted a minimum of 3 minutes.  It probably doesn't sound long to those of you without an ASD child but believe me, in my mind it seemed liked it was forever. Matt realizing he was not able to leave the apartment he ran off down the hallway.  I was able to get ahead of him and lock the bedroom doors as I knew from past experience when he is raging like this anything and everything can start being thrown.  When he wasn't able to get into the bedrooms he slammed the walls and door with his cast and kicked the door a few times I guess to try to kick it in.  I opened the closet door and told him he may go in there to calm down if he wishes explaining again once he calms down he can go out with Kevin.  Of course all this time he is screaming he wants to take his gameboy with him.  Into the closet he goes and starts covering himself up with the blankets in there.  I sit on the floor with him - knowing now that this is the deescalation time period.  A sigh of relief comes over me when almost 2 minutes go by and Matt is very quiet.  I am able to take a few breaths of air to gather myself.  I start rubbing his leg as that is all that can be seen and of course he gives his leg a quick kick which is my cue he isn't ready to be touched yet.  I start speaking to him and calmly telling him that I know he wants to go out with Kevin and he doesn't really want Kevin seeing him act this way.  I let another minute or two go by just sitting with him and not saying anything to him or touching him.  I then peel back one of the blankets covering his head and say peek a boo.  I got a slight smile from him.  I knew he was starting to come about.  Very calmly he says but I want to take my gameboy with me on the ride.  I reiterated again that he can not take it with him as the car ride is very short.  He then says I want to play it when we get home.  I explained that will be okay with me as long as you can pull yourself together.  With that statement I started rubbing his back which he has always loved and has been a calming method we have used more times than I can count in the past.  He accepted and turned his body around and laid his head on my legs so I can continue to scratch his back.  I am guessing the time in the closet was about 8 minutes - all along Kevin is in the living room talking with Matt's brother David.  I ask Matt if we can go out on the sofa so I can continue to scratch his back as my legs were falling asleep in the position.  I was sitting on the sofa continuing to scratch his back for a few more minutes when out of the blue he says: Well are we going yet Kevin.? I gave Kevin the nod which meant I knew he has calmed down and back to himself.  Kevin and Matt get up, Matt gets his coat on and away they go like the incident never happened.  

It was about a 15 minute delay because of Matt's outburst from the time Kevin came and by the time they both walked out.  This rage was over quicker than most of them.   Did I handle it the right way - could I have made it less than 15 minutes - I guess I will really never know.  I do know the following helped:

1.  Remained calm at the door when Matt was trying to leave.

2.  Kept the point clear - he was not taking the gameboy with him  (I guess the whole incident could of been resolved immediately if I just said sure take the gameboy with you but Matt is trying to learn in therapy that things can not always go his way).

3.  I was able to stay two steps in front of his logical thinking and avoid any other confrontations (locking bedroom doors so he was unable to further his raging by throwing objects).

4.  Allowed him to calm down his way by him throwing all the blankets on top of his body in the closet (even if it meant I had to refold and clean up the closet after he left - roughly 5x5 room)

5.  Knowing his cue when he kicked out with his leg when I went to rub it.

6.  Scratching his back to further help with the calming method.

7.  Returned to the room where it all started and gave him a few more minutes to pull himself together and not bringing up what started it all.

Was it tiring on my end - you bet it was but it is just another day in the parenting of an Asperger's child.

Almost a year has passed and I completely forgot about this  blog.  My New Year's resolution is to try to keep it updated.

Where are we now after a year - getting there - and what do we still need to accomplish - A LOT!  That pretty much sums it up in a few words.  Occupational therapy has ceased due to not being able to get Matt to transition quick enough to start the therapy.  It would take almost 1/2 hour to get Matt to comply then we would only have about 15 minutes to complete therapy.  It was very stressful for me and untherapeutic for him.  Individual therapy has been doing good with Michelle (another new therapist as the previous one went out on maternity leave) as she also has a son on the spectrum so we get personal and professional advice from her.  Our goal is to start to implement social stories with Matt to assist him with his social skill deficits.  Matt has progressed in identifying emotions via pictures and utilizing words to express his current moods although he still needs to continue forward to avoid rages.  I have been listening to Total Transformations which are audio recordings that gives advice on how to change your child's behaviors.  It is mainly useful to help me understand why behaviors are happening.  I have been able to apply the methods to Matt's twin brother more than him but it is a starting point for me.  Be sure to follow this blog to keep updated and share how you have been able to help your child thru his struggles.  I will do my best to update and let you know what has helped and what has hindered our progress.  Thanks for reading.

Sensory Profile Questionnaire

I completed the Sensory Profile (125 items) in January 2009 for Matt. When I received the summary I was like WOW. I was able to interpret some of the information but the rest seemed like I was reading a foreign language. I started researching night after night to help me understand in laymen terms what this was really telling me. I knew Matt displayed certain behaviors when we went to the grocery store, or if we were taking that walk and would suddenly cover his ears and screech almost like he was in pain when the train would go by and blow his whistle. I knew Matt continued to have trouble tying his laces and a host of other difficulties that you and I just take for granted – but what I didn’t know up until recently that this was all problems with how he processes the information he is receiving.

What I found out thru this sensory profile questionnaire is that M had trouble effectively processing information that comes into his brain through his senses (sight, hearing, touch, etc.), and that it interfered with the ability for him to understand and interpret what is in the environment around him, He had major difficulty in processing information as it came into his brain and it affected the ability to form appropriate motor responses. This is what the term sensory issues mean. Along with the help of an occupational therapist, our first goal is to determine which processing issue is occurring with each of the senses then working toward therapy to address it.

Processing information correctly involves registration, modulation and integration and is broken down in as follows:

Registration – The information actually reaches the brain through the sensory channel (problems in registration might include blindness, hearing loss, etc.)

Modulation – The brain is able to filter through the various incoming messages for what is meaningful and what is not, and chooses the information to focus on

Integration – The brain is able to organize the incoming information, analyze it accurately, choose a reaction, and follow through on the action.

The summary of this questionnaire actually will break down what areas the individual is having problems with and further break it down into four quandrants. Typical range is what the average joe usually scores. When the range becomes probable difference, more than others, or less than others, that is when those issues need to be addressed.

One Step Forward

Some days seem like what I have learned about behavior modifications has been disintegrated and doesn’t exist – while other days that are so awesome I wonder why every day can’t be like it. I titled this blog one step forward and knowing that somewhere down the road I will be posting one that is titled two steps back but acknowledging there will be another step forward.

I was told this week there is a good possibility if Matt was diagnosed appropriately at an earlier age he probably would have been labeled autistic – a much lower functioning individual. Well, that is both good and bad news. The good news is his Asperger’s diagnosis only came two years ago so I must have been doing something right to have his diagnosis of Asperger’s now after struggling for 7 years without knowing anything. Meaning that the treatment I was giving him at home without any knowledge of autism literally helped Matt otherwise he would still be non-verbal, everyday 3 to 4 times a day raging, etc. I look back on all the doctor appointments I had for his behavior problems and it was literally written in black and white (testing, evaluations, assessments, doctor reports etc) all the typical symptoms of a autistic child but for some reason it just wasn’t diagnosed as such. (He was being treated psychologically for his behavior since age 4 and not for autistic behaviors (He is now age 11). The two are really different because I truly believe an autistic child does NOT have a behavior disorder but acts out in a behavioral way because of sensory issues). The two are treated so much differently. I pat myself on the back for the effort I have put forth to get Matt to the point he is now. I am no way saying that Matt does not have behavior difficulties, but I think the way they were being targeting should have been redirected in a different way. The bad part of that statement is Matt could have been receiving much needed treatment in an autistic way and we could be beyond the challenges I currently am enduring. But that is neither here or there now and hence the reason why I say one step forward. His disorder is now more recognized both at the school and in therapy and treatment is being adjusted accordingly.

Matt has been discharged from physical therapy as the therapist strongly feels that most of his struggles are more related to sensory issues. I am still learning everything about sensory issues and to help us all we have increased his occupational therapy to twice a week. When Matt would cover his ears and scream during a fireworks show, thunderstorm, really struggle during a trip to the carnival that is supposed to be fun, a trip to the grocery store more times than I can count ended up walking out because of him raging, eating at a restaurant and having difficulties, purposely throwing himself down on the ground, walking into the walls, having a meltdown because the cereal he would eat everyday wasn’t replaced when we ran out, wants to wear 7 shirts and hoodies to school, walks on his toes, could not grasp how to tie shoes or color within the lines – and the list could go on and on – all this is due to sensory issues which is very common in children on the autistic spectrum. With the increase in OT and goals to work toward, I really feel all this is one step forward that will be bringing Matt more in touch with his needs and allow for his outburst to seek these needs to be diminished significantly.

Asperger's - First post

I found a name that was available and immediately wanted to get a first post out here and will do my best to do weekly updates if not daily. My goal is to have this blog reachable by parents of asperger's children. There are so many websites out there that give a clinical diagnosis of Asperger's but very few that give an inside look at raising a child with ASD. The ones I do find have to do with the younger children 5 years and under. With a diagnosis being made just 2 years ago, I have already crossed those paths and accomplished each challenge on our own. I continue to scope out what to expect and how to handle so many of my son's autistic behaviors. I figured by starting this blog, just maybe there are other's out there where we all can benefit from our challenges. My son just turned 11 this month. Journey with our family and feel free to comment at any time!