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PeterPan - My Wonderful Son

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State: South Carolina
Country: USA
Member since: Jan 18, 2008
Last logged in: Dec 01, 2008

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Father, ABA, Occupational Therapy, Speech Therapy, Self-Stimulatory Behaviors, Self-injury

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PeterPan's Page URL

http://www.foggyrock.com/MyPage/PeterPan

PeterPan's Bio

Hello FoggyRockers! I am the father of a son on the autism Spectrum. I chose the screen name Peter Pan because that was my son's first favorite ride when we took him to Disneyworld the first time. He has developed other favorites now, but seeing his reaction the first time on this ride was priceless.
My son was born in 2003. My wife and I raise him in South Carolina. He attends an Early Childhood Development at a county school (another story there). he also receives 15 hours of therapy a week through a local organization for children with autism. He is making wonderful progress and we are so proud of every accomplishment he makes.

*NOTE: Just for the record let me state any compositions I write are true, but the names have been changed.

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PeterPan's Compositions

Another New Therapist (More on My Son part 18)

by PeterPan on 12.01.08 - public

Another New Therapist (More on My Son part 18)
Well I know I have an early post that speaks of my son getting a new therapist a few months ago, but t...

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Kindergarten Field Trip (More on My Son part 17)

by PeterPan on 11.29.08 - public

Kindergarten Field Trip (More on My Son part 17)
A short time ago, I was a chaperon on JJ's first field trip ever. His class was split into several ...

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Kindergarten Field Trip (More on My Son part 17)
A short time ago, I was a chaperon on JJ's first field trip ever.  His class was split into several groups, each with parental chaperons.  Well, my group consisted of my son and another child we will call Bill.  Bill is a child my son talks about often and calls him a friend when telling me about school and he likes Bill.  I am not going into detail about another person's child but Bill is physically different than other children in his class.  You would not notice upon seeing him at first from a distance, but after a few minutes it is noticed.  Not sure if Bill has anything else different about him but have observed he is quieter than most other children, especially more than JJ. 
Now what bothered me is that the teacher put no one else in my group.  Even when a parent did not show up and she was forced to plsit that parent's group among the other groups.  I did mention to her that I had the smallest group and could take a few more children, she told me she was not sure if that was a good idea, since sometimes my son's actions could be unpredictable, especially since this was his first field trip.  We discussed it and since him and Joe got along very well, and knowing my son is not fond of large groups I did not press the issue.  (The small group thing turned out to be a wash anyway, since the smaller groups never actually broke up when we got to the farm as originally planned.)

Sorry I am out of order on the day...  I arrived at school with JJ and walked him to his classroom and told the teacher I woul dbe back for the field trip but was going to the grocery store nearby to pick up stuff for our lunch and she asked me to pick up some cookies for the entire class as well.  Well JJ thre a fit when I told him I was leaving, but would be back in time to go with him to the farm.  After calming him down a little I snuck out only to learn that when I returned it took the teacher about 5 minutes or more to calm him back down when he realized I was actually gone.  So we already knew he had a rough morning.  When I got back from the story they were doing their calendar and weather time like they do every morning.  (I think I mentioned before his class works on a tally, start out with 3 and the max you can get is 10 for listening, behaving, and participating.  You can also lose tallies for misbehaving and not listening to the teacher.)  The whole time 20+ minutes JJ spent his time sucking right thumb and rocking back and forth.  His teacher did call on him twice and try to get him to focus and participate, but no luck... what a disheartning feeling to watch all the other children excitedly participate (showing off in front of the parents watching form the back of the classrom) and your son not.  Really hard to say how bummed out it made me feel.  Okay now back on track.

All the parents who came along drove their own vehicles form the school to the farm and their own child rode with them, all the other children would ride the bus  (legal issues is what I was told.. [small side tangent: what happened to the old days?  I remember when I was young the school did not always provide a bus for field trips and the class was dependent on enough parents coming to split the class into car pools....  sad]).  So when we got their everyone gathered at the bus to form into our groups.  JJ did have one incident when he ran from the teacher and she put him in time out.  This happened when she offered to watch JJ and Bill so I could help another father get the coolers with all the lunches and drinks for the class.  When I came back I saw him sitting right beside her on a bench crying.  She said he ran from her so he was placed in time out for 5 minutes or until he told me what he did and apologized to her.  I did not consider this unreasonable, since I know for a fact if JJ verbalizes a situation, telling what he did wrong or what he wants to do, he tends to understand the situation better.  Well just before the 5 minute time he told me he ran from his teacher that is why he was in time out and then he apologized to her.  He was still so upset he refused to eat any lunch though.

(Okay the best part of the story)
Well the field trip was almost over and after going (as a class) through the corn maze, it was time to return to school.  I had planned
to just take him home with me rather than make him go back to school for the remaining 2 hours.  On the way to the parking lot, I told JJ to tell Bill bye, since he was going home with me and not back to school.  I had told JJ earlier he could come home with me after leaving the farm.  Well, Bill asked JJ if he would come back to the school with him and sit beside him on the bus.  At first JJ said no, actually he said "No, I wanna go home with daddy" the first 2 times Bill asked.  Then Bill asked him again and added "please".  JJ said yes.  I was a little surprised and knelt down to his level and asked him "Do you want to go home with Daddy or back to school on the school bus with Bill" (We always try to  get him to look at us face to face when we ask him a choice question to help him focus and not get distracted. He said he wanted to ride back to school with Bill.  I told him OK, then I had to discuss with the teacher and at first she said she was not sure there was enough room on the bus (several classes from his school came to the farm that day).  After some discussion about how big a breakthrough this was for him socially, she assurred me they could make room for him to ride next to Bill.

Still just not sure how I feel about her only putting CJ and Bill in their own small group, concnerd it could attach a "social stigma" type perception from the other class members, kind of like isolating them from those children who are different.  But was VERY PROUD of MY SON CHOOSING ON HIS OWN TO GO WITH HIS FRIEND.  I like to think he did it because he knew it would make his friend Bill happy.

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Hitting at school and sharing toys

by PeterPan on 11.04.08 - public

Hitting at school and sharing toys
JJ has always seemed to have a problem sharing toys, especially at his house. I believe he tends to think he is t...

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Hitting at school and sharing toys
JJ has always seemed to have a problem sharing toys, especially at his house.  I believe he tends to think he is the only person allowed to play with any toy in his house.  He will play with the same toy with another child pretty well, but if he leaves and plays by himself for a few minutes with another toy, he gets mad if the other child then picks out a different toy to play with independently.  Also at school about 2 weeks he started hitting other students at school (when the teacher clarified it is more like pushing and tapping constantly then actual hitting), but over a few days the pushing started getting harder.  We developed a social story for him, two pictures of the inside of a movie theatre (one with the word "YES" above it and the word "NO" above the other) then we had a picture of two boys fighting and a picture of two boys playing nicely together.  We would place the picture of the boys over the theatre pictures indicating fighting was NO movie and not fighting was YES movie.  A few days of this and the hitting at school stopped.  Even he would repeat the story board by himself when we asked about hitting (fighting).  Now that he will sit through movies, I guess as long as a movie is our he wants to see we should be in good shape.  We are actually planning to start transitioning away from just "movie" to other "rewards" or favorite pasttimes he enjoys.  We are trying to incorporate a modified version of the "Smart Discipline" system.  (We attended a seminar on this a few weeks ago and believe we can successfully adopt a modified version of this technique.)  We know the initial transition to his might be a little rough, but believe it will work successfully in the long run.  After we try this for a while I will post about it and let you know the results in interested.

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The Movies

by PeterPan on 10.27.08 - public

The Movies
Well this past Friday night, my wife was not home, so I put on a new DVD my son has been wanting and cranked up the volume really loud, I ...

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The Movies
Well this past Friday night, my wife was not home, so I put on a new DVD my son has been wanting and cranked up the volume really loud, I mean REALLY LOUD.  He covered his ears and said "Too loud, turn it down!"  I paused it and told him it was broken, but I had an idea.  I went and got out the headphones I wear to NASCAR races.  The kind that completely cover your ears.  I told him if he put those on, it would not be so loud.  He put them on and we re-started the movie, on loud volume.  He was satisfied and happy as can be, just smiling!  After the DVD we talked about if he took his headphones to the movies, they would not be so loud.  He repeated what I said, which usually is an indicator to us, he really gets what we are saying.  So, on Saturday we made plans to go see High School Musical 3, he loves the series, and knows every word to every song.  And he has been going to the HSM 3 website since it was available and already knew some of the songs for the 3rd movie.  Whenever we would say "we are going to go to the movies and see High School Musical 3", he would say "I got to take my headphones, so it not so loud." 
So on Sunday afternoon we headed out to the movies, and he was proudly carrying his headphones.  When we got into the theatre he wanted to sit in the very last row, up high.  So we did and he sat there between us, laughing at the previews and enjoyed the whole movie, a little restless in his seat some, but not bad.  He even asked to go back to see it again.  So, of course, we will.

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Just have to... brag

by PeterPan on 10.15.08 - public

Just a short entry expressing how proud I am of my son. My son's classroom behavior plan works on a tally system. IN short they start off with 4 tal...

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Daddy's Helper - Halloween Decorations

by PeterPan on 10.07.08 - public

This past weekend, we decided to decorate the house for Halloween. So, up I go into the attic and pull down the two boxes of Halloween decorations. ...

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This past weekend, we decided to decorate the house for Halloween.  So, up I go into the attic and pull down the two boxes of Halloween decorations.  JJ comes and asks "What are you doing dad?"  I tell him I am going to decorate for Halloween outside.  He decides he wants to help, so I tell him he has to put his shoes on first and then he can come help.  The shoes were on in no time at all.  While outside I tell him that daddy needs a stool.  Go ask mommy for a stool.  I know I repeated this phrase about 3 times.  He runs inside and a few minutes later I see him struggling to bring something out the door, it is one of the little chairs that goes with his little Wiggles table he sits at in his room and uses the chair to help climb to get things he is not really supposed to be getting to.  I bust out laughing from being so happy he thought about this solution by himself.  Turns out he never asked mommy at all.  I tell him Thanks tons of times and use his chair to hang the ghost in the tree.  When I am done he takes his chair and struggles to get it through the door back in the house.  Sometimes when I see him presented with a challenge, I give him a few minutes to see how he will solve it or if he will come get someone to help.  He carries the chair to the door and then looks up at the door handle.  He looks over at me and I act like I am busy and do not notice him looking.  He manages to open the door and starts carrying the chair in, but realizes the door is trying to close on him.  He backs up a step and is holding the chair with both hands, and preventing the door from closing with his back.  He then looks back at me and asks, "Hold the door pease" (sometimes he has trouble with the "l" in the word "please".  I run over and hold the door and he says thanks.  When he comes back out I tell him Thanks for the chair and on his own without the "What do you say" prompt, he says "welcome".  Those 10 minutes made me so happy all day long it was a Grand Day!

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Compromise

by PeterPan on 10.03.08 - public

Compromise

Taking a short break from my series on More About My Son. As I work with him and watch, listen, and participate in his therapy sessions...

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Compromise

Taking a short break from my series on More About My Son.  As I work with him and watch, listen, and participate in his therapy sessions I often hear or even say the following phrases a lot:
"Let's do this first first, and then that"
"Finish this, and then..."
"After we do this, then..."
"How about ______, then ______"
"Today we do this and maybe tomorrow we can _____"
ohhh so many variations of the above.

But, we all know the concept is the same...  In order for us to get him do perform a pre-determined task we make the compromise.  Sometimes, I wonder if his patience is even so much greater than mine.  What he wants, whether it be a toy, or time to play with a specific toy, or visit a specific place, is most alway second in every deal.  People call it bribing, positive reinforcement, compromise, or who knows everyone's terms for it.  I know why I do it, because it works, hopefully at least most of the time...  But sometimes it makes me wonder in awe, at how he must feel always having to do what someone else wants before he gets what he wants.  And while he has his meltdowns here and there... when I step back and think of the number of times THE deal is made, the number of meltdowns is actually quite small.

While I might continue this train of thought more in the future, his home therapy is over the day and it is my favorite time...  daddy time!

Keep smiling everyone.

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First couple of weeks at school (More on My Son part 11)

by PeterPan on 09.30.08 - public

First couple of weeks at school (More on My Son part 11)
Well, he had a great first week at school, even finishing off his sandwich (which he has eat...

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First couple of weeks at school (More on My Son part 11)
Well, he had a great first week at school, even finishing off his sandwich (which he has eaten completely everyday since his 4th day of school now).  The way part of the classroom behavior program works at this school, is that each child can receive a maximum of 10 points for successfully completely the daily activities.  The first day JJ got 7 then 10's.  Starting last week he dropped by back to 6's a couple of days and we got some lengthy notes from his teacher about his behavior.  He was telling her "no", pushing other children on the playground, taking things from other students, and being disruptive during quiet time.  We has some talks with him each night and he promised he would not do it the next day, but to no avail.  We think he is testing his limits with his new teacher, trying to determine how much he can get away with to get his way and do what he wants.  By the end of the week he was back up to 10 points, and getting either the sticker or stamp reward in his daily journal. 
On his last day of therapy with our favorite therapist, we invited her and her husband over for dinner and all of us, even JJ (for as long as he could anyway), sat down for a nice dinner.  She suggested we suggest a new daily log template to his teacher.  The current on has a place for his sticker or stamp if doing good and a place for 1-2 sentences for the teacher to relay any details from the day.  A second column is for the parents signature with any comments for the teacher. 
We called our first IEP meeting of the year not to discuss his goals per say but address his classroom behavior.  He seems to respond and interact very well in smaller groups, the larger the group gets, the more behavior problems.  Almost daily notes from teacher saying he was touching (tapping) other students arms or legs, not paying attention to her, pushing other students, attention seaking behaviors, etc...  After we called for the meeting, we found something out that just really infuriated us.  Our son was arriving at school about 20 -30 minutes late everyday.  The bus routes were still being worked out.  I have a problem with this almost 4 weeks and still not worked out.  Granted I would not want the job of coordinating bus routes for the entire county, but that is just unacceptable.  And what really bothered the fool out of me, was we had no idea!  No one from the school communicated this information to us!  Not the teacher, bus driver, principal, no one!  If I bring him in late one morning, I am required to go to the office with an explanation.  The old saying... "What's good for the goose..."  He was missing part of his therapy time, as a result and no one told me.  The only way we even found out was when my mother in law called when it was 8:00 about 30 later than when the bus picks him up from her house.  Well, starting that day he was removed from the bus system, my wife re-arranged her work schedule and now drops him off each day.  Maybe I am over-reacting, but this to me is a major communication failure on the part of the school, primarily the teacher.  I hold the teacher responsible, because she is my main point of communication when it comes to relaying information about my son at school. 
[I tend to believe the person I talk on a regular basis is the one responsible for communicating things to me.  If a waiter brings me my food and it is aweful, I complain to him, because the cook is not available to me.  If he chooses to bring the cook out so I can discuss it with the cook directly that is fine, but it starts with the waiter.]
We found out at the IEP that while the school has successfully mainstreamed several students, his particular teacher has never worked with an autistic child.  I have no major problem with this, I understand that there is only one way to get experience at something and that is by doing it.  But I need to see some initiative, when you have problems with him, do you consult the autistic itenerent, his previous teacher (the best I have I ever met with working with disadvantaged children and one that made huge strides with JJ), research, the occupational therapist... ie: show me something; instead of just writing notes saying he misbahaved and expect us to correct it in a single evening.
Our home therapy coordinator attended the meeting as well, and to keep a long story short, everyone walked out of the room with better ideas of how to work together better.  I walked out feeling loads better, but also more cautious and ready to be more watchful than before.

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JJ's Mainstreaming into Regular K-5 (More on My Son part 10)

by PeterPan on 08.26.08 - public

JJ's Mainstreaming into Regular K-5 (More on My Son part 10)
It has been a while since my last composition, been readying for the big move to regula...

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JJ's Mainstreaming into Regular K-5  (More on My Son part 10)
It has been a while since my last composition, been readying for the big move to regular K-5 this school year; but before we get to that...
We found out last week that JJ is losing his best therapist.  The other therapists who work with JJ are good and well qualified, but what set this therapist apart was her energy level.  It is phenomenal.  She rocks.  She comes to therapy with such energy, JJ easily relates to her.  I mean when she gets there they will run outside and play while working therapy into it, such as sharing using a ball and working on his eye-hand coordination by catching, taking turns on his playset going down the slide, etc...   She is moving to another therapy provider that unfortunately is not participating in the PDD Waiver program paying for JJ's home therapy.  I cannot blame her for her decision, it is definitely a great career move for her, she will be moving to a lead therapist position and they will pay for for her continuing education to become a early childhood education specialist.  She eventually wants to make coordinator and start her own therapy organization.  So unfortunate for us, but great move for her.  Wish her the absolute best.
Now on to JJ in K-5...
My wife took him to the meet the teacher on Monday and he was a handful in the new classroom setting, but when she promised him they could go visit his old teacher if he behaved he calmed down a bit.  Well, his first full day was Tuesday, the teacher said he had a few minor difficulties, but nothing major.  The only draw back was that Tuesday nor Wednesday did he eat his lunch.  Thursday he ate 1/4 of it.  Friday, he ate the whole thing!  We were so incredibly proud of him and so was he, he kept telling us "I ate the whole sandwich and got a sticker, and I'm gonna eat another one on Monday!".  It rocked.

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JJ's Home Therapy and K-5 mainstreaming (More on my son Part 9)

by PeterPan on 08.09.08 - public

JJ's Home Therapy and K-5 mainstreaming (More on my son Part 9)
Well as stated in the last composition, JJ had been accepted for the PDD Wavier pro...

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JJ's Home Therapy and K-5 mainstreaming (More on my son Part 9)
Well as stated in the last composition, JJ had been accepted for the PDD Wavier program to receive in home therapy.  Things started off slow and a little difficult as JJ got used to this new schedule and understand that he would be during some work at home and not always playing or just watching the Wiggles, or other cartoons and movies he liked.  After a while he came around and once he accepted it.  The therapists that have been working with JJ have all been great.  Once a month the therapy coordinator for ATC (Autism Therapy Center) evaluates his progress once a month.  During these evaluations we tried taking JJ back to the ATC office, but never made a lot of progress.  He did not want to behave, and focus on the tasks at hand.  The coordinator suggested conducting these evaluations in the location of the therapy, our home.  We readily agreed to give this a try and the difference was like night and day.  He paid attention, focused, followed instructions, few to no outburst etc...  Eventually, before the end of this program, we are going to transition him back to the ATC office for the monthly evaluations.

Well after 2/3 of the way through JJ's second year in ECD, the idea came up in one of his IEP meetings that we try to prepare JJ for K-5.  We decided that about 9 weeks before the end of the school year, JJ would stay at school an extra hour and participate with the current K-5 class during their lunch/recess period and their math session.  His ECD teacher volunteered to use most of her lunch/break time between the morning ECD class (the one JJ was in) and her afternoon class to attend the K-5 time with JJ, for a few weeks.  Then for the last 4 weeks, she would not attend and the K-5 teacher would have him like any other student in K-5.  The first couple of weeks, this was rough for JJ.  One of the biggest problems was his diet.  At the this time his diet consisted of the following:
Entrees:
- chicken nuggets
- fish sticks
- bread
- graduates spaghetti meals

Sides/Snacks:
- french fries
- tater tots
- pudding
- yogurt
- cookies
- crackers
- fruit snacks
- and his favorite, ( we call it the ultimate bribe) m&m's

Another major problem JJ had was focusing on eating when in a room with lots of people without something to expressly focus his attention on.  If he has a TV of portable DVD player playing something he likes, he has no problem eating.  But he tends to get a little agitated and stims when a lot of people are around all talking in different conversation.  This is especially true in loud places like restaurants or cafeterias.  So a few weeks ago we started incorporating food therapy in his home therapy sessions.  It has worked wonders, we can now add, grapes, corn, peas, and peanut butter & jelly sandwiches to his menu.  Giving him something else he likes to focus on is his key here.  The TV.

We also have included peer time in his summer therapy sessions.  He has a cousin only 6 weeks younger he sees fairly often and the other cousin who is 1 year younger.  Also, a couple of times a week his friend, a peer from his 2 years in ECD, comes to the house and provides a model for him to follow during his therapy, with a focus on social skills while the peer is there.  We are so grateful to Jimmy's parents for continuing to allow their son to interact with JJ over the summertime.  Unfortunately, Jimmy will be attending a different school next year and will not be in K-5 with JJ.  I find this to be sad and hope it is not too big an obstacle for JJ to overcome.  The good news is he has another peer he gets along with pretty good, who will be moving up with him.  So hopefully it will ease it some.

I am very nervous about JJ being mainstreamed into K-5.  I just want the best for him and know it will be possibly his biggest challenge yet.  His ECD teacher promised to check in on him from time to time, and we have already met and talked to his upcoming K-5 teacher.  But I am sure as many of you can imagine, I still worry about his adjustment into the more organized and disciplined class of K-5.  We have a parent information night coming up and plan to attend and discuss everything again with his teacher.  We are currently planning on calling an IEP meeting after the second week of school to discuss how the mainstreaming is going, and review his goals, which were set at the end of last school year.  Since he has received so much therapy over the summer and made some great progress I am pretty sure a lot of goals will have to be re-adjusted.  And this pretty much brings us up to where we are now.  Thanks, and I hope you enjoyed the reading.

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JJ's 2nd full year at ECD and Starting his Home Therapy (More on my son Part 8)

by PeterPan on 08.07.08 - public

JJ's 2nd full year at ECD and Starting his Home Therapy (More on my son Part 8)

Last Summer, we signed our son for a program sponsored by the count...

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JJ's 2nd full year at ECD and Starting his Home Therapy (More on my son Part 8)

Last Summer, we signed our son for a program sponsored by the county's Department of Disabilities and Special Needs (DDSN).  It was for a PDD Wavier.  Once the child was evaluated by 1 of 2 participating therapy service organizations, it would be determined how many hours of therapy the child is qualified to receive.  Due to the high demand only 300 participants would be chosen by lottery by any who completed the application before the deadline.  The therapy would take place in the child's home (or house of the daily care giver), he would be receiving ABA therapy from a qualified therapist and 1 or more student therapists.  The therapy services would all be paid for by the County DDSN for a total of 3 years!!  Shortly after school started we get a call from our DDSN representative informing us that JJ's name was the second one that was randomly selected in the lottery.  We were more than thrilled to say the least.  I cannot think of words to describe it.  We were very anxious to get started.

We had to meet with the therapy coordinator and the selected lead therapist and assistant therapist one evening for about 4 hours to discuss the program in depth and provide some information on JJ and the therapy he has received, how he has developed in school and with the other therapy he was currently receiving, and of course my favorite....  You guessed it all the wonderful multiple choice questionnaires and evaluation forms.  The therapists would travel to our home on specified days and perform a variety of therapy techniques ABA, motor, fine motor, speech, etc...  Most supplies would have to be provided and paid for by us.  After a very long evening of meeting with everyone involved we went hom with a mountain of paperwork, reading material, etc...  The next step was to bring JJ in for the evaluation(s).

One afternoon, we picked him up from school and took him to the Autism Therapy Center (ATC) that was located between his school and our house (in a round about sort of way at least).  The evaluations would be conducted by the Autism Coordinator, Abbey, and assisted and observed by the lead therapist and student therapist.  The evaluation was slated to take about 3 hours.  (Another instance of what I think is too demanding of a child like JJ, at least initially.)  A little less than 1 1/2 hours into the evaluation the melt-down happened, after a very long time of trying to calm him, we decided we could split the evaluation and try again at a later date.  Knowing that JJ usually responds better in the morning, and they had already seen him in the afternoon, the first part of next week, I took off work and JJ skipped school.  My wife wanted to be there, but had just changed jobs and did not want to ask for more time off that close together.  The second half went much better and so much progress was made, they re-did some of the parts they tried last time right before his meltdown.

About a week later we got a phone call letting us know that he qualified for 30 hours of therapy a week.  Unfortunately we could not squeeze 30 hours a week into his schedule between school, and transportation logistics to get him home so quick after school for therapy.  We ended up being able to plan for 15 hours of therapy at home in addition to what he received in the ECD program at school.  The only days he did not get the home therapy fro ACT was Wednesday and Sunday.  He even had 3 hours every Saturday morning.  We could have lengthened the amount of time each day he had therapy or added Wednesday, but I wanted and even insisted he have time to be him.  I may take some heat for this, but did not want my son in therapy so much he could not play on his own, explore the world in his own way, experience it in the only way he could.  As different as he is I wanted him to be him.  I see my job as a parent to help him, and foster way for him to communicate with others, not to change him into something or someone with rote memorization, or only acting the way others do.  Still keep his sense of wonderment of the world, regardless of how we perceive things, maybe he sees things more simplistic than complicated, maybe he sees more beauty in beautiful things that we do and could never understand.

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JJ's New School His First Year (More on My Son part 7)

by PeterPan on 08.05.08 - public

JJ's New School His First Year (More on My Son part 7)
Now that all the transfer stuff was in place, all we had to do was wait. And we did not have...

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JJ's New School His First Year  (More on My Son part 7)
Now that all the transfer stuff was in place, all we had to do was wait.  And we did not have to wait long.  In about a week or so, we received confirmation of the accepted transfer through the mail.  We were thrilled.  We scheduled an IEP meeting with the new school about a week before the start.  Not knowing what to expect, we brought the advocate with us again to this new school.  Talk about a difference.  I have a feeling we would have had the dame level of professionalism and pleasing results had the advocate not been there.

Now it would not be fair for me to not devote at least one paragraph to JJ's new teacher.  She was truly a Godsend.  Within just a few weeks she had him talking more than ever and after a couple of months you never would have known he was not a vocal child.  And now 2 years later, he still talks as if he could never say everything he wants (ie: he rarely stops, once he starts, and I LOVE IT, even though it almost drives me insane sometimes).  Anyway, his teacher has by far made the most progress with him.  The first year in her class, he did not want to leave her side though, for almost anything.  He got so used to his routine in school (sign in, circle time, arts & crafts, etc...)  Weekends were a little hard for him to understand he got 2 days a week off from doing that stuff.  Skipping ahead a little at the end of the school year his teacher, Lucy, asked if she could use JJ as a model, or subject of a program she had to submit a report to discussing the methods used in her class and her techniques for working with autistic children.  We readily agreed.  Well the following year JJ was in her class again and people from a national special needs education program were supposed to come observe her class for a day as a result.  She was told to expect 3 observers, 8 showed up.  Their visit was the result of the report she submitted, in which JJ was one of the model children children she used.  Turns out, JJ was like the Most Improved student in her report and the majority of the report was about him.  The other people who worked with JJ at this school included the teacher's assistant, physical therapist, and speech therapist.

All the following IEP meetings went off without a hitch, and are still going that way today.  After 2 years in this school, in the same ECD class we have had an IEP probably 7 times or so.  I have asked on occasion JJ's home therapy coordinator (more on this in another composition coming up) or lead home therapist to attend.  I love communication and wanted to make sure the home therapists and the school knew what each other were working on, so they could coordinate their activities with CJ to maximize his progress.  I also liked to invite them just as a subtle reminder to the school I am keeping a close eye on his IEP and will push to get the best for JJ that I can.  Each time everything has gone well.

After his first year there, he did not meet the criteria for ESY.  We looked for a day provider with a more regimented schedule of learning activities than my mother in law (MIL).  My MIL, bless her heart, has done great watching JJ, but watches a pretty wide range of other children during the day, mostly infants, and has limited resources.  She was not able to schedule activities, like circle time, crafts, story time, etc...  We found a lady that watches children similar in abilities to JJ, with scheduled daily activities like we were interested in for JJ.  Of course, after not having to pay my MIL for her services, our new weekly expense was a shock to our budget, and not to mention the location of this new provider put a big kink in transportation for us.  So my mom, who is the librarian at a local private school offered to keep him 3 days a week, and my mother in law would watch him the other 2.  I told my mom, this is fine, but only if she was willing to work with us on setting up a schedule of activities and sticking to it, and not always be the spoiling grandparent.  (No offense to my mom, but we all know how grandparents love to spoil their grandchildren and feel it is not just there right to do so but duty.  *GRIN* )  She agreed and we took what we had learned from his school activities and therapy sessions and devised a schedule that included, arts & crafts for motor skills, play time, story time, his personal time to rest and unwind, peer time (thanks to his cousin 6 weeks younger than him), etc...  He also had peer time at my MIL's because he has another cousin 1 year younger.  I think this is one of the best things we have done for him and very grateful for the family support system that made it possible and more importantly made it work.

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Early Childhood Development... finally (More on My Son Part 5)

by PeterPan on 07.31.08 - public

Early Childhood Development... finally (More on My Son Part 5)
Never having been to an IEP meeting before I was not sure what to expect... I was s...

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Early Childhood Development... finally  (More on My Son Part 5)
Never having been to an IEP meeting before I was not sure what to expect... I was surprised.  Never having been to an IEP meeting before, but after seeing some of the personalities and poor professionalism so far between the 2 schools... I was no disappointed.  After everyone who was required to be there showed up, 2 left after 5 minutes.  We walked out not very happy about the amount of therapy time he would be getting in the classroom.  But to give kudos where they belong, his teacher and his assistant were wonderful people to talk to and seemed great at what they do.  Two things I learned from this first (joke of a) meeting (did I actually type that, just thought I was thinking it out loud)  was that (1) I could request another at anytime and they had 10 days to comply and (2) I could have anyone present that I requested provided I sent written notice to the school.  Well, I began pouring through the mountain of resource and information materials provided to us by the CARE center.  And found what I was hoping for, an advocate.

I contact this individual and walked them through everything I have typed in the previous compositions.  I made arrangements to get the copies of all of JJ's evaluations, and was assured her or someone in her organization would be attending the next IEP with me, to go ahead and set one, and all I had to tell the school is that someone from her child advocate organization would be attending.

When I tried to setup the second IEP I was encouraged to try addressing any concerns I had directly with the school psychologist, instead of a full blown IEP.  When Bob 2 got on the phone I asked him directly if I was allowed to call an IEP at my discretion, as soon as he said "yes", I just said that is what I want.  The next day I sent a letter to the school letting them know a representative from this specific child advocacy group would be attending also.

The day arrived for the second IEP meeting, everyone had their game face on.  It was even a whole different atmosphere when I walked into room.  Everyone was so much more courteous and professional with the child advocate there.  And then to my bigger surprise, right before the meeting started in walked the old friend I found out worked in the county school's office for the ECD program.  We made no personal talk or greeting beyond the formalities for the duration of the meeting it was all business.  Immediately after the meeting concluded, before anyone could leave my old friend came up to me and told me hello again and asked me what I have been up to since High School!!  I did not see it, but am pretty sure I heard a few mouths hit the floor form some people in the room.  My friend made it a point, almost overboard, it seemed for them to get the message we knew each other from way back.  Truth be told I had not seen this person in over 15 years.  I left the meeting much happier about the increased amount of therapy time my son would be getting for the remaining 4-5 weeks of school.  I decided then a there having an advocate experienced with IEP meetings was definitely a person to have on your team.  I thanked the advocate profusely and she said she would keep in touch.

Turns out my friend saw my name on the list of people participating in the ECD program, and was wondering if I was the same person he knew from High School.  I found all this out outside after the meeting.  We chatted about a bunch of things.  I remembered my self promise and asked how I would go about getting my son transfered to the school we really wanted him at.  He gave me a curious look and walked me through the steps I would need to take.  He strongly encouraged me to do it about 2 months before the start of the next school year, and to do it all in person, not through mail.  He told me once the transfer is final, I could pursue the transportation issue.

Anyway, to wrap this one up...  the remainder of school year went pretty good, and we saw some progress.  Since, JJ got started so close to the end of the regular school, it was relatively easy to get him approved for the Extended School Year (ESY) program, which is 6 weeks of school, 4 days a week during the summer.  It was at a completely different school with a different teacher.  As it seems with most children with autism, schedule routine changes are usually rough at first, but after a few days JJ adapts pretty well.  The program is designed to really only be a stop gap to prevent any backsliding in skills learned during the school year.  JJ progressed!

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Early Childhood Development Program ... almost (More on My Son Part 4)

by PeterPan on 07.28.08 - public

Early Childhood Development Program ... almost (More on My Son Part 4)
Since we already had a good therapy routine and schedule for JJ, our next goa...

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Early Childhood Development Program ... almost  (More on My Son Part 4)
Since we already had a good therapy routine and schedule for JJ, our next goal was to get him enrolled in Early Childhood Development (ECD) in the local school system.  Because our son was younger than 3 years old he qualified for an early intervention program called Baby Steps.  By the time we were setting this up it was early March and his birthday is near the end of April.  According to their guidelines they had to have him evaluated before he turns 3.  Of course all the evaluations and questionnaires only meant our son was eligible for the program, alas, the school had to evaluate to him using some of the same subjective tests and evaluation techniques using in the previous evaluations.  Well the psychiatrist (will call him Bob 1 for the sake of convenience) at the school in our home area, where we were getting the testing done, and myself did not get along since the first day.  He seemed likable enough when I first met him, but well you'll see....  During the first attempt for the evaluation, there were several people in the room and by the time they finished talking to us and explaining the program, JJ was ready to leave and having one of his moments.  We did get him settled back down and the Bob 1 tried to start the testing.  Shortly into JJ started stimming and having another meltdown.  We asked if it would be possible to reschedule and complete the evaluation on a different day.  After some attitude from the Bob 1 he reluctantly agreed and said he would call us the next week to schedule a second day.

After not hearing anything from him the following week, I called him on the following Friday and he gave me a time for the following Thursday (a full 2 weeks after the first day of evaluation).  I knew the following week was a spring break, but assumed since he set the date, at least he and maybe some of the other teachers or administrative staff would be at the school doing some level of work.  When we got to the school for that continued evaluation, it was locked up tight and absolutely no one around.  I called from the school on his cellphone and he was out of town on vacation.  Needless to say I was completely incensed.  I told him I expected a call from him and his supervisor the following Monday before 9:00.  The following Monday I did get a call from him, but not his supervisor.  I honestly did not expect a call from his supervisor, but I do know if I did not hear from him I would find out who his supervisor was in very short order.  The only day that turned out to be available for everyone who needed to be there during the evaluation (1 Special Ed teacher, 1 regular teacher, of course Bob 1, the principal, or vice principal), was the day before his third birthday.  That second day evaluation went fairly well, a few minor melts by JJ, but nothing major.  Following this evaluation I had a long talk with the psychologist regarding how the test seemed so subjective and results left up to individual interpretation, how can I as a parent be assured the right conclusions would be arrived at ensuring the correct IEP being assembled for my son.  He gave me a half-shot answer to the effect of that is when parents need to learn to rely on the professional training and experience of those doing the evaluation.  My wife reminded me that JJ's attention span was already short and we need to leave.  I guess she see me mentally circling the wagons and preparing a verbal barrage of what I already thought of him in particular.

While awaiting the final results of the evaluation I was able to find out that someone I knew was (lets just say... someone) involved with the Early Childhood Development program for the county schools.   Well, Bob 1  did get back with me after a few days and since the ECD program at our home school was filled he would be attending our second closest home school.  Bob 1 setup a meeting between us and the pyshcologist at the second school whom he assured was a great professional.  When I found out what school he would be in I was not happy at all, it was definitely inconveniently located away from our house and places of work.  I mentioend to Bob 1 the school I would like him to go, beacuse my Mother In Law has been watching him since six and is currently his day providor is within walking distance of it.  He explained to me that school is in a different district and would have diffculty getting that transfer, actually his exact words were: "Not going to happen and even if it does, there is no way he will get on the bus transportation system".  I did not address, but you better believe I decided that the following school year my son would be at that school and would be on the bus system.  This was promise I made to myself.

The day came where we were to meet this guy (Bob 2, if you will), and we got to the school and after waiting 10 minutes past the appointment time I asked the school secretary if he was even there...  guess what?  Turns out he covers 2 schools and was running late.  I asked how she knew if he was running late and she said he called about 20 minutes and told her.  I asked if she was going to tell us and she said she had no idea who we were, I looked at the other secretary sitting about 10 feet away (she is the one we checked in with), and asked if the two had met.  This was not met with any humor.  I asked her if she could contact the other school and have him paged because I wanted to speak to him immediately.  She said she did not have to call the other school and could page him directly.  I told her that would be fine.  After another 20 minutes and second page he calls back apparently upset that he was paged twice in such a short period of time.

Before I get my conversation with him, let me add some additional information, I believe played a part at this moment.  I have some blood sugar issues and when I get very stressed my blood sugar tends to drop and when that happens I tend to be quick to anger, and quick to judge and act.  I do my best to keep this under control and keep my cool, but this time I might have lost my temper a bit.

When they put me on the phone with him, my first question was if he had a watch.  Without waiting for an answer I asked him if there were communication problems among the staff at school.  He responded by asking me who I was was.  This did not help my mood at all.  I explained that I was the father he had an appointment with almost 45 minutes ago.  My response was silence on the phone, I hear some ruffling around and then a ... "oh yes, Mr.________,  I believe I called the office some time ago and told them I was running late."  I told him that was the purpose behind my second question concerning any concerning any communication problems among the staff at the school, because we told nothing until we asked.  I explained to him that my wife and I both had to get back work and would return to the school later that afternoon around 5:00 to meet with him.  He told me that is usually the end of the workday for him.  I told him that my wife and I had worked late the day before at our respective jobs the day before to be able to attend the meeting today.  Again a long quiet pause... followed by a reluctant "..ok, please ask my secretary to put that on my calendar", I just asked him to hold on and handed the phone to one of the secretaries; my wife and I left.  I got a very concerned "Are you ok?" from my wife once outside.  We returned at 5:00 and after a tense discussion I was told his office would be in touch with me for scheduling his Individual Education Plan (IEP) meeting.  A few days later they called and setup one up.  FINALLY some real progress.

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Movies or Songs that Help You Get Your Fight On

by PeterPan on 07.28.08 - public

I try not to look at it as a fight on, but rather inspiration. One song that really helps my wife and I is a song from an old Disney Movie. The movi...

Family & Friends (More on My Son Part 3)

by PeterPan on 07.26.08 - public

Family and Friends (Part 3)
I would like to start by saying a "Big THANKS" to everyone who has left me feedback and comments on the compositions I...

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Family and Friends    (Part 3)
I would like to start by saying a "Big THANKS" to everyone who has left me feedback and comments on the compositions I write, writing about all this is very therapeutic for me in some way.  Sorry if some of them seem so long.

I was going to move on to writing about lining my Early Childhood Development Classes (ECD) for JJ, but decided to pause here with that line of topics and talk about something a little closer on the emotional spectrum: our family and friends reactions.

Marcie and I had many long discussions while waiting for the evaluation about whether we should tell anyone and if so.. who.  We both have relatives that tend to overreact to things and some that would blab it all over the earth, even if we asked them not to right now.  We decided on our parents only, and tell them we do not want everyone else in the family, including our own sisters to know until we knew more ourselves.  (For the record this worked pretty well with the exception of my mom telling my sister and her mom telling about 5 people on her side of the family...  but hey life goes on, right?)

My parents took it well and were in agreement with us that we should wait until the evaluations before jumping into deeper water and maybe even the wrong pool.  Marcie's mom pretty much packed her bags went straight to denial and even now, 3+ years later, is still there.  Her dad still says very little about it.

After the diagnosis we decided to tell JJ's godparents next, John and Jenifer, who are very close friends of ours.  I have known John for 22 years since High School and Jenifer for 18.  They have two children Steven and Michelle.  Steven is about 9 and Michelle is about 7.  They were not sure what to say at first other then asking some questions about more details on what exactly autism is and what is done about it, how will it effect him, etc... the usually questions we initially asked at the evaluations.  It is interesting, but of all people they seem to be more intimidated by it then anyone else we have told.  The seem, at times, to walk on pens and needles when JJ is around and just act a little different towards him, then other children that might be around.  The times they have seen him melt down, the look on their faces I still cannot figure out if it is: sadness, sympathy, fear, concern, or "what should I do" or even "what would I do if this were my child", maybe it is a little of all these or something completely different.  I wish I knew.  When we all get together their children especially their son just do not seem so uncertain about how to interact with JJ.  I mean Steven is your all American athlete for a boy his age and if there is a sport you can believe he is in it.  [On a side note, Steven is right-handed naturally but can switch hit in a heartbeat and hit the ball left-handed every bit as good as right-handed.]  JJ is just not as concerned with sports, at least not right now, and the two do not really play together with the exception of when a basketball is around and JJ tries to dribble like Steven and even tries to shoot or pass the ball to Steven.  JJ has trouble receiving passes and usually misses, but tries hard.  Michelle is happy to watch tv with JJ most of the time, unless he stands right in front of the TV and blocks her view.  They also like to just run around and chase each other.  But even their children look at JJ sometimes just like their parents do... and sometimes it bothers me to know end.  I am sure they have told them that JJ is different and these looks might be a result of that, but wonder how different things would be if they never told Steven and Michelle and let them all just play.

We also told another couple we see a lot and get together with (Todd, Margo, and David - talked about them in a previous composition about our son going to the beach), and they were curious as well, but do not seem to look at JJ as John and Jenifer.  Interestingly enough, they now have a 3 year old son you was just diagnosed in the past month as having PDD NOS.

Another couple we know through church and the Knights of Columbus has a son and daughter and their son was just re-diagnosed as having autism.  Eight years ago their son was diagnosed as ADHD, and had been taking related medication since.  After we spoke to them about JJ, they took steps to get their son off of medication and have him evaluated for autism and since the new diagnosis have gotten into therapy programs and completely off the ADHD meds and have seen a dramatic improvement.  Which I think is FANTASTIC!!!!

Now everyone in our family knows and most every one we see and talk to on a regular basis, and I like it that way because as time goes by in between seeing them I ALWAYS have something to brag about that JJ is doing now or getting much better at.  And believe me I am the Proudest Father in the world when it comes to my son and his, almost daily it seems, accomplishments and progress.

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The Evaluation.....(s) (More on My Son Part 2)

by PeterPan on 07.26.08 - public

The Evaluation.....(s) (Part 2)
"How long?" A question I asked time and again. Each time I called a place in the neighboring cities and states tha...

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The Evaluation.....(s)  (Part 2)
"How long?"  A question I asked time and again.  Each time I called a place in the neighboring cities and states that conducted autism evaluations.  I was incredulous.  6 months... 6 long months... 6 long frustrating months... 6 long frustrating, worrisome months...  The earliest I could find a place to conduct the evaluation, it also happened to be the first place recommended by his physician.  Through our state's Department of Disabilities and Special Needs, we were also placed on a referral list to another organization (CARE Center) that performed autism evaluations and related education services.  After 5 months of the increased therapy we got a phone call from the CARE saying they had a cancellation and could fit JJ in if we could make the next morning at 9:00.  Needless to say we answered "Yes!" immediately.  We went that same afternoon to pick up some paperwork so we would not have to sit in the office and fill it out in the morning.

I am sure that anyone who had been through this evaluation process knows the paperwork I am referring to...  The 6 or more multiple choice questionnaires.  I have a most difficult time with these.  There are not enough choices, or the choices are too specific, or the questions are too vague, there is no "frequent" or "sometimes" option.  Every time I get one of these to complete for JJ, I have several mental hurdles to jump.  I just feel they do not allow for explanations as to why I might have chosen the options that I think are the "best" or "closest" answers.  I will probably get into this is greater detail in a later composition.

It was decided that I would be present in the room with one evaluator during the evaluation to assist if needed and mom would observe from behind the two way mirror with the other evaluator.  I thought the evaluation went very well and walked out of the room certain he had failed to meet the autism criteria, his delay was normal and he would go through a phase very soon where he would catch up and even passed the development milestones for young boys his age.  We were told they would compile all the notes and review the questionnaires and return the results to us in 7-10 days.  As they were saying this, I picked up on something they did not say, but just something I felt.  Although I walked out the evaluation room certain of this being just a mis-judgment on the part of his therapists, and physician, I left CARE with what felt like a chink of doubt in that armor of confidence.  On the 9th day following his evaluation we got the call from the CARE center asking us to come in to discuss and pick up the final results.  We made arrangements for JJ to be with my mom that day and went for what we were sure would be a very short meeting.  (At least most of me felt that way, over the last week that small chink still nagged at me and no matter how far back in my mind I tried to put that ominous feeling it kept creeping forward.)

Speechless.... for 5 very quiet seconds.

By far the best way to describe my reaction to what I read on the first page of the result packet handed to us by the therapist.  Talk about overwhelmed.  I work in a very fast paced environment usually multi-tasking is the norm for me at work, putting out more than one fire at a time was something I was accustomed to, but on that day things changed.  I could not multi-task.  I had to ask the therapist for time to just let me sit and fully read the results (every page, every line, every word) at least once cover to cover before any discussion.  I could tell my wife, Marcie was not happy with this request and was chomping at the bit to ask questions and be told all the information and most importantly "the answers - how can we fix this"; but me I needed the time.  Time to get my head completely wrapped around this... this ...THING!  After I had completed reading everything and making a few pages of notes and questions, the therapists came back in the room and sat down and we had a very long discussion in regards to the steps we need to take next.

The final result was that JJ was evaluated (sometimes I do not like the term "diagnosed with autism"), as Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS), mile to moderate autism.  So here we go, listening to the therapists explain to us about all the therapy options and resources (scarce as they are) available to us, as well as support groups for us, should we need them.  I have never been a support group type person, but do believe they work for people and are a very positive thing to have.  I personally prefer talking to close friends or family members when I need to vent or get very frustrated.  And I am lucky enough to be able to say without a shred of doubt I have some of the best friends a person could ask for, when it comes to listening and offering support.  (Slightly off topic:  For the record after 2+ years of just just absorbing information I have found that writing these compositions, releasing my thoughts, opinions and experiences, and sharing them on Foggy Rock (in itself a great resource) helps me feel better and helps me see things from different points of view.  Sooo Thanks Foggy Rock!)

Also, since we were still on the schedule for an evaluation at the Medical University, we decided to keep the appointment.  Once they found out we had been evaluated at the CARE center they urged us to cancel the appointment, so they could evaluate another.  It turns out they found out, since the CARE center and the Children's Development department often refer people to each other and also some of the resources, therapists, etc... are often in the Children's Development.  Anyway, we kept the appointment, our feelings were that it was a good idea to get a second opinion on something of this magnitude.

I was much less impressed with the doctor in charge of our evaluation at this place.  Hats off to the therapists (the ones that actually conducted the evaluation) and even to this doctor's assistant.  They were great and very professional people.  The doctor was late coming to talk to us following the evaluation, because she had planned on us cancelling since we had been evaluated by the CARE center, and told us as much.  When she did this, thank goodness my wife and other people were around, because I was all set to lose my cool.  I took a deep breath and calmly asked her if someone had delivered life changing news to her about something that could not be confirmed through blood tests, lab work, some definitive piece of proof, but rather something subjective based on observations and ambiguous multiple choice questionnaires, would she not want at least a second opinion to backup the first.  Her demeanor changed little, but do not believe she wanted to risk looking like a complete selfish, and uncaring professional in front of the rest of the people in the room.  SHE spent less than 15 minutes one on one with my son asking him to do a small variety of motor skills (stack the blocks in order or certain colors, etc...).  After which she looked up and said the results of their evaluation showed the same results as that form the CARE center.  After some discussion and review similar to the CARE center (only this time I did not feel like I needed to read the entire report before discussion...maybe I was already familiar with how it would sound or read, or maybe my dislike for this doctor was just that great) she could offer us no more resources or information that we had not already gotten from CARE or located ourselves since the first evaluation.  Next stop Early Childhood Education.

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That Day (More on My Son Part 1)

by PeterPan on 07.25.08 - public

That Day (More on My Son Part 1)

I have already put up a few compositions, but not one specifically about our son, the posted compositions are mor...