Parenthood

I absolutely love Parenthood and have it set to record the series just in case I don't get my mommy time at 10pm for one reason or another on a Tuesday night.  The recognition this show is getting both on the local and national level has amazed me for one main reason:  AUTISM AWARENESS!  The producer does an excellent job having Max portray an individual with Asperger's (I've read somewhere that in real life he also has a son on the spectrum) that I sometimes think our family life is being taped and shown to the world.  Every episode I have watched I have been able to say - hey that's my lil' boy there and know that I am not alone in this.
The episode last night was just phenomenal (Tuesday February 15, 2011). How many meltdowns we have had because the things were changed!  Just had one this morning before he walked out for school - My ds turned 13 today and wanted to wear these really huge birthday glasses someone gave me last month for my 50th birthday and when told he couldn't he was throwing items, screaming and taking his tantrum (lightly said) and refusing to go to school (this is all happening within 8 minutes of the bus coming).  Apparently when I showed them to him last month I made the comment maybe he could wear them on his birthday and he remembered it and was set to wear them as he walked out the door for school.  I was able to defuse the situation when I told him when he comes home from school this afternoon he can wear them for the rest of the day and even to bed.  He thought it was cool that I would let him take them to bed with him and whewwwwww - out the door for school he went!

My ds has his own blog at Outside View Looking In .  I hope you stop by to view it soon.

Outside View Looking In

My ASD son started his own blog as a goal project for school.  There are only two entries but the goal is to have 100 people view or become followers of it since there are 1 in every 100 boys diagnosed with Asperger's.  Can you help him meet this goal.  Take a hop over to his blog right here: Outside View Looking In and become a follower.  You can ask him questions or just comment  Let him know you were there to visit.  Thanks!

I made top 47 Asperger's Support Blogs on the Web!

Making it in the top 47 Asperger's Support Blogs just made my day.  There are a lot of blogs out there and to see my blog in the list -if it was the top 1000 or top 10- makes me tickled pink.  I actually forgot I had a blog over at http://autism-blog.com.  I was #31.  How cool is that.  Now my goal is to get more people to actually follow this blog.  My son just started his own blog as a project for school and his goal is to get 10 people to follow his.  So hop on over to his blog by clicking My View of Asperger's and follow him.  Thanks for the reading and will have another update on parenting asperger's soon.

Lasagna for Thanksgiving, 2010

 

"Yummy" as Matt tells me and ask "Did you cook it exactly as the recipe calls for. I sure did!  He brings home a recipe book from the library and he knew I was making Lasagna for Thanksgiving for the last two weeks and wanted me to make HIS version.  (psss - it's almsot his - with his understanding of substitution).  We are having family over but keeping it small as not too overwhelm him.  Some family Wii fun before dinner, after dinner and then the homemade apple pie to top off the day for dessert.  Happy Thanksgiving All and remember to keep it simple and not to stress yourself out.

Sleep on it!

My twin son (the NT one) wants a kitten and found out that one of his cousins has one that she is trying to find a new home for.  Even though I am not too keen on the idea of another pet, we were talking about it during our dinner and the two boys were chiming in with their excitement over this possibility.  We already have a parakeet, leopard gecko and a ferret so another animal in this apartment just does not sit too well with me.  I finished up our conversations with "I will have to sleep on it".  I really don't recall the exact comment I used with this phrase but I will assume it went like this:  I really do not know if we should get this kitten boys, I will have to sleep on it.  Conversation ended and the next afternoon I was asked about the kitten by the NT son as both boys walked into the door from school.  I told him I really don't know what happen with the kitten as I have not talked to his cousin.  Minutes later my ASD son is starting with a typical meltdown - at this point I have no idea why he is behaving this way.  This meltdown lasted a good hour from him kicking walls, screaming and every other behavior that usually accompanies a rage.  Finally he de-esculates through the help of this exhausted mom and we talk about what happened.  Again, this is one of the times I had no idea what started it and it was my duty to try to help him gather his thoughts and replay his reactions so this behavior would not happen again.  

Finally he was able to tell me "If you didn't sleep on it maybe you would know more about the kitten".  WOW - it made sense.  Because the night prior I said I would sleep on it - he thought I slept on the kitten and killed it which is why I had no idea what happened to the kitten. 

I probably do not have to remind you but Asperger's children are very literal in their communications.  My dear ASD son learned a new idiom last night that "Sleep On It" means to not make an immediate decision about a plan or idea, but to wait until the next day in order to have more time to think about it.  Mom learned that I so need to be more careful when using idioms.

Happy Mommy!

It happened.  I am just as excited as any mom would be like when their kids take their first step or say their first word.  My ASD boy M actually took a shower last night and wanted (get this - he WANTED) to wash his own hair.  Now he still wanted me in the bathroom with him to step him thru the procedures - but this is a night I have been waiting for a long time.  I think what initiated it was the other night when I was washing his hair I explained that he doesn't want mom to be washing his hair when he is 18 so he needs to start learning now (He is 12.5 now).  He still needed the wash cloth to cover his eyes when rinsing but I was so proud of him.  My fingers are staying crossed that this continues.  His reward for taking his own shower was staying up 1/2 hour later (which he turned down because he said - but I always go to bed at 9 - I can't  stay up 1/2 hour later)  He knew mom was proud of his new independents and he got a lot of verbal praise. 

Hotdogs!

Ok, so I made hot dogs for dinner tonight.  From M's first bite he told me that they weren't the same as I always make.  He asked if I steamed them for the same time as I always do.  Of course I did I tell him - I even marinated them in LOVE (trying to disengage him from a rage).  He is telling me he doesn't like them and won't finish it - and gets into an angry dispute that I did not make them the same as I did last week.  I just bought the hot dogs today and told him if he don't like it then don't eat it.  I finished cleaning up the dinner dishes and was sorting wash in another room.  He comes charging in flashing the hot dog package in my face saying --- mom you bought hot dogs made from turkey and beef -- NOT JUST BEEF.. no wonder I don't like them.  Oh boy -- he is gonna make a good husband someday.  Grrrr.  Anyone want turkey and beef hot dogs??

Chat tonight 9/2/2010 - 7-8pm EST

Looking forward to see all in the chat tonight.  If you haven't signed in, take a moment to or chat as a guest.  Fingers cross that tonight is a good night for me to sit and chat without disruptions. 

First Week of School

Good start to the 2010-2011 school year.  First week is now out of the way.  My 12.5 ASD son seems to like all his classes and I hope to see him really challenged this year and excel like I never saw before.  I just can't believe he has entered the 7th grade -- WOW!  The summer was great - we continue to have a MT and just got reassigned a new Behavioral Therapist - just in time for the start of school.  M is finally doing better with his MT - transition is not as bad - this is after almost 3 months (12 visits - once a week).  Transition time has been almost a full hour before he would come to his senses.  The last 2 sessions he actually did not run and hide when she came to the door and both of them were able to get right to work within 15 minutes.  I believe it is a long process for the MT to really get to know a client when they first begin - especially when they only work with him once a week for about 1.5 hours.  Keeping my fingers crossed that the sessions continue well - hoping for success with the new Behavioral Therapist and wishing my lil' boy (well not really lil anymore - gosh he is gonna be a teenager in just a few months) has a very challenging and successful year in the 7th grade.  Oh, we signed papers yesterday to find alternative methods if their science class decides to dissect frogs or any other 'animal'.  Frogs are M's major obsession - and not when they are dead.  I do have to say it will be an interesting year!

Mom's Need to Know Back to School Giveaway -

Ok, a facebook friend who has an awesome blog and gives away really neat products has something that I feel is really worth a try at winning.  It is an Acer Aspire 4820T laptop computer and Mindy has been giving away products for Moms for a long time.  She has been on the local news more times than I can count and I only dream to be as great as a mom as her.  Read about this fabulous giveaway right here by clicking on this link: 

Moms Need To Know - Back to School Giveaway  Please check it out and even try to win for yourself or one of your kids.

I was just saying in my last blog how a computer would be so beneficial for M.  Well this is my chance to try to win one for him.  I have never won anything before so I know my chances are probably nil but I figured I would give it a chance anyway. 

I can only at this point dream big on how M owning his own computer would be so beneficial to him.  Even having him do his own reports, learning about his favorite obsession - frogs and weather - and even downloading his pictures from his camera onto his own computer sounds so absolutely wonderful that it is too exciting to not think about.  How it would allow him to become much more proficient in his everyday task - oh my, the list could go on and on how this would benefit him.  Keeping my fingers crossed.  The drawing is on August 23 and Mindi will announce the winner on her website and her facebook page.

Take a look at Mindi's facebook page here.  Mindi's Facebook page

Tough Summer

We started WrapAround Services and have had about 6 weeks with the MT.  Do I see a difference? - nope - He does not look forward to the MT coming over each week for about 1.5 hours. Transition time is almost 20 - 30 minutes and it is so stressful.  The MT doesn't even seem to know how to control this.  Great MT huh!  Does that mean I need to cease wraparound - I have no clue.  His summer has been really difficult.  I have been trying to make it more structured for him but I guess I just don't have the skills like school does.  He did attend ESY for two days out of the week during the summer for about 6 hrs each day - which I have to say he absolutely loved.  I think next year during our IEP meeting I am going to have to push for 5 days instead.  As long as he is on his electronics (Computer, Wii, PlayStation and Gameboy) he is the most content child in the world -- until the website he is playing on decides to do an unscheduled maintenance and decides to shut it down - then he goes into a verbal outburst and gets quite angry.  I have had him spend more time on the outside let it be for swimming, walking around the block or getting together with his one friend to break up his day but it is sometimes very hard to convince him. He would rather sit at the computer all day if I would let him.  His eating habits are still poor - but he tells me that is just the way it is.  Today he said -" but mom, if i wasn't growing then you should be concerned - but look I am almost as tall as you". He is so right there - He will be looking down at me soon. instead of looking up at me.

Sometimes I feel like I am at the end of my rope.  It's not that I want to so call change him because he is the most caring, affectionate, intelligent boy whom I love so much but its more trying to understand him and his way of thinking.  Trying to catch the verbal outburst or physical aggression before it happens is so hard.  It is not until afterwards that I think back on the situation and realized what triggered it and for the most part it makes sense - its that trigger I want to recognize before he explodes.  Suggestions are always welcomed.  

Only 2 more weeks before school starts.  I do look forward to it.  He will continue to be in the emotional support class.  He will be pulled for Math into the regular classroom with an assistant.  School has talked about getting him some type of electronic device for him to communicate with but this still has not happened.  I think I might have to take the next step and get him something for home.  This way he can do his reports, journal, etc.  He loves using his camera and that would be so special to him to be able to learn to download his own pictures onto his own computer.  And just maybe he can verbalize his daily feelings to help me understand what is going on in his head.  He is a very intelligent boy and I really want to see him more challenged - just hoping it doesn't frustrate him more.  Only time will tell. 

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.