Tomorrow my "baby" turns 13.
Our home now consists of folks all over the age for kids meals in restaurants and discounts at the movies. :(
It also means I have 2 boys that are teens at the same time, lets bow our heads shall we ??
Happy Birthday Nick !
Saturday, July 19, 2008
Saturday, July 12, 2008
"The appeal of the Appellant is Sustained"
THUD !
When I first opened the letter and saw the "Order" by the Administrative law judge I couldn't help but think to myself ..
This is a good thing right ?!?!?
I had to go over it in my head.
Sustained .. good
Overruled .. bad
Flashing back to my days of watching Perry Mason in the 60's this must mean since I was the appellant ....
"I won" ! (Perry would be proud)
My gut tells me I will be appealing again in the near future but for now we celebrate that we can start off another school year with the right supports in place.
Someone pass me a Miller Lite and the Doritos !!
When I first opened the letter and saw the "Order" by the Administrative law judge I couldn't help but think to myself ..
This is a good thing right ?!?!?
I had to go over it in my head.
Sustained .. good
Overruled .. bad
Flashing back to my days of watching Perry Mason in the 60's this must mean since I was the appellant ....
"I won" ! (Perry would be proud)
My gut tells me I will be appealing again in the near future but for now we celebrate that we can start off another school year with the right supports in place.
Someone pass me a Miller Lite and the Doritos !!
Thursday, July 3, 2008
.7
.7
Not exactly a number that knocks your socks off huh ?
It's a little number .5 short of a whole inch.
BUT .. if you only 4' 5" tall at the age of ALMOST 13 and you suddenly jump to 4' 5.7" its HUGE !
It was his first follow up since starting the twice daily injections of Increlex and I was praying that he would see some success for all he has tolerated so well.
When the nurse first measured him today I wasn't sure if .7 was a good thing.
I must admit I wasn't overly impressed .. MAN I was hoping for at least one whole inch. I knew a whole inch would really rock his world :)
Once again he fools me. He was over the moon at seeing he had grown .7
The Doctor too was very pleased as well.
She calculated that if the growth continues at this rate he could hit that 3-4 inchs of growth at the one year mark that has been touted as possible.
So today was a good day for the little man.
It sure will make the daily injections easier to live with now, and that my friends is a good thing !
Not exactly a number that knocks your socks off huh ?
It's a little number .5 short of a whole inch.
BUT .. if you only 4' 5" tall at the age of ALMOST 13 and you suddenly jump to 4' 5.7" its HUGE !
It was his first follow up since starting the twice daily injections of Increlex and I was praying that he would see some success for all he has tolerated so well.
When the nurse first measured him today I wasn't sure if .7 was a good thing.
I must admit I wasn't overly impressed .. MAN I was hoping for at least one whole inch. I knew a whole inch would really rock his world :)
Once again he fools me. He was over the moon at seeing he had grown .7
The Doctor too was very pleased as well.
She calculated that if the growth continues at this rate he could hit that 3-4 inchs of growth at the one year mark that has been touted as possible.
So today was a good day for the little man.
It sure will make the daily injections easier to live with now, and that my friends is a good thing !
Wednesday, June 25, 2008
Finding the right mix ....
This is Nicks first summer "home".
Since he was diagnosed with Autism at the age of 3 he has been "schooled" in one way or the other year round.
We have done Autism pre-school programs ... in house therapy ... speech therapy ... summer day camps etc.
Once he started public school he would generally have one week off and then right back into a summer program of some sort.
This year we have scaled back to just 15 hrs a week of Mr. John coming to work with him on community type activities to help build social skills, other than that the boy is home.
He LOVES it .. he truly enjoys not having the rules of a summer program.
He will be 13 in less than a month and he figured out a few years ago that most day camp programs stop at the age of 13. Even though I technically could have gotten one more summer of camp for him , since the end of last summer he had convinced himself he was done. I just couldn't do it to him.
When a child with Autism can say .. "Well how come I always have to go and no one else does ? I just want to stay home like everyone else !" it makes you rethink the situation and realize that you have to acknowledge that is a "normal, typical" thing to ask and say. It's a good thing right ?
There are positives for me too. I so far haven't missed having to drag him out of bed in his really grumpy morning state to head to a still chilly camp in the mountains in the early morning.
He is very pleased to be able to stay up later and sleep in longer in the mornings , that too is a typical teen.
BUT ..... I have discovered in a short time that even with his proclaimed need for independence and being "like everyone else" he still has Autism. Autism and a puberty, need I say more ?
Nick still needs rules and routine.
Without them he starts to take forget that no means no .. that just because you don't HAVE to get up early doesn't really mean you can stay up til WHENEVER you want and do WHATEVER you want too.
His attitude changed within the last week. Mouthy and harder to reign in when I need him too.
If I heard "HOLD ON" one more time when I called the child I was gonna scream.
Week 2 of "freedom" became a tad to0 much for the child.
So the hammer came down yesterday.
Shut off timers had to be set on the Xbox. The computer had to be password protected again so he couldn't sneak on when the mood struck him.
Bedtimes had to be set and enforced once again and I will be "waking" him up today so that he doesn't sleep half the day away making it really tough to get him to bed at night.
This made for one unpleasent child yesterday.
Nick quote:
"Why do you have to ruin my life ? "
Because my child at the present time .. that is my job.
Geeze maybe he really is just a "typical teen" !
Since he was diagnosed with Autism at the age of 3 he has been "schooled" in one way or the other year round.
We have done Autism pre-school programs ... in house therapy ... speech therapy ... summer day camps etc.
Once he started public school he would generally have one week off and then right back into a summer program of some sort.
This year we have scaled back to just 15 hrs a week of Mr. John coming to work with him on community type activities to help build social skills, other than that the boy is home.
He LOVES it .. he truly enjoys not having the rules of a summer program.
He will be 13 in less than a month and he figured out a few years ago that most day camp programs stop at the age of 13. Even though I technically could have gotten one more summer of camp for him , since the end of last summer he had convinced himself he was done. I just couldn't do it to him.
When a child with Autism can say .. "Well how come I always have to go and no one else does ? I just want to stay home like everyone else !" it makes you rethink the situation and realize that you have to acknowledge that is a "normal, typical" thing to ask and say. It's a good thing right ?
There are positives for me too. I so far haven't missed having to drag him out of bed in his really grumpy morning state to head to a still chilly camp in the mountains in the early morning.
He is very pleased to be able to stay up later and sleep in longer in the mornings , that too is a typical teen.
BUT ..... I have discovered in a short time that even with his proclaimed need for independence and being "like everyone else" he still has Autism. Autism and a puberty, need I say more ?
Nick still needs rules and routine.
Without them he starts to take forget that no means no .. that just because you don't HAVE to get up early doesn't really mean you can stay up til WHENEVER you want and do WHATEVER you want too.
His attitude changed within the last week. Mouthy and harder to reign in when I need him too.
If I heard "HOLD ON" one more time when I called the child I was gonna scream.
Week 2 of "freedom" became a tad to0 much for the child.
So the hammer came down yesterday.
Shut off timers had to be set on the Xbox. The computer had to be password protected again so he couldn't sneak on when the mood struck him.
Bedtimes had to be set and enforced once again and I will be "waking" him up today so that he doesn't sleep half the day away making it really tough to get him to bed at night.
This made for one unpleasent child yesterday.
Nick quote:
"Why do you have to ruin my life ? "
Because my child at the present time .. that is my job.
Geeze maybe he really is just a "typical teen" !
Thursday, June 19, 2008
Squeaky Wheel ?? Does it really get the grease ?
We are preparing for our second battle with the state to provide services to our son which will take place next week.
This is proving to be much more the bureaucratic nightmare than at times I have the stamina for, I have come VERY close 2 times in the last week to throwing in the towel.
I spent a few days this week navigating the system for just one answer ... Who is the boss of the Doctor who is making these descisions?
Should be simple right ??
Life has taught me that EVERYONE has to answer to SOMEONE .
This has proven to be one of my harder missions yet.
Over the years I have been able to locate people in places I wish I hadn't found them, but because of my need to get to the bottom of something I have started, I succeeded.
For this mission though .. I started with my state senators office.
Even they didn't know who the boss was but they agreed to try to find out for me.
I placed some more phone calls directly to the capital office. That was interesting to say they least because they too didn't know who the boss was.
Eventually I stirred enough pots that I started getting phone calls back from people I hadn't even called in the first place.
The return phone calls often resulted in .. "Oh thats not our division" but thankfully I had one man that offered to check it out and get back to me with the info I was looking for.
Get this folks .. HE DID !
So now I had the boss lady's number and all I had to do was make the call.
I sat on the number for a few hours trying to decide if I could go through the story ONE more TIME.
After a few cans of Coke to rev me up for the call I dialed the number.
She picks up first ring ... THUD !
I had to regain my composure quickly.
I then went through my concerns and requested that another Doctor review his case.
Ultimately I would have liked to have asked that the former Doc be removed all together. I wanted to also ask how I can file a complaint so that she will never be able to access my sons records again .. but I had to keep reminding myself that that may make me look like the "crazy indenial parent" that I know the first Doc has painted me to be.
The boss lady agreed to try to get another Doc to review the records before next weeks hearing.
I am not sure if I will be told the results of that review or if the status of the hearing will change because of it.
Will Doc number 1 be removed from the case ? No clue.
Will Doc number 2 agree with Doc number 1 ? I guess thats a possibility, the state is looking to cut across the board , but it was a chance I had to take.
What if Doc number 2 doesn't agree with Doc number 1 .. then will it all be dropped ?
I have been tested this week.
Keeping myself together , remaining calm yet firm on the phone through the jungle of redirected calls, is not one of my best qualities.
I'm am waiting the outcome of this week .... SIGH .
PATIENCE, Breathe in 123, Breathe out 123.
This is proving to be much more the bureaucratic nightmare than at times I have the stamina for, I have come VERY close 2 times in the last week to throwing in the towel.
I spent a few days this week navigating the system for just one answer ... Who is the boss of the Doctor who is making these descisions?
Should be simple right ??
Life has taught me that EVERYONE has to answer to SOMEONE .
This has proven to be one of my harder missions yet.
Over the years I have been able to locate people in places I wish I hadn't found them, but because of my need to get to the bottom of something I have started, I succeeded.
For this mission though .. I started with my state senators office.
Even they didn't know who the boss was but they agreed to try to find out for me.
I placed some more phone calls directly to the capital office. That was interesting to say they least because they too didn't know who the boss was.
Eventually I stirred enough pots that I started getting phone calls back from people I hadn't even called in the first place.
The return phone calls often resulted in .. "Oh thats not our division" but thankfully I had one man that offered to check it out and get back to me with the info I was looking for.
Get this folks .. HE DID !
So now I had the boss lady's number and all I had to do was make the call.
I sat on the number for a few hours trying to decide if I could go through the story ONE more TIME.
After a few cans of Coke to rev me up for the call I dialed the number.
She picks up first ring ... THUD !
I had to regain my composure quickly.
I then went through my concerns and requested that another Doctor review his case.
Ultimately I would have liked to have asked that the former Doc be removed all together. I wanted to also ask how I can file a complaint so that she will never be able to access my sons records again .. but I had to keep reminding myself that that may make me look like the "crazy indenial parent" that I know the first Doc has painted me to be.
The boss lady agreed to try to get another Doc to review the records before next weeks hearing.
I am not sure if I will be told the results of that review or if the status of the hearing will change because of it.
Will Doc number 1 be removed from the case ? No clue.
Will Doc number 2 agree with Doc number 1 ? I guess thats a possibility, the state is looking to cut across the board , but it was a chance I had to take.
What if Doc number 2 doesn't agree with Doc number 1 .. then will it all be dropped ?
I have been tested this week.
Keeping myself together , remaining calm yet firm on the phone through the jungle of redirected calls, is not one of my best qualities.
I'm am waiting the outcome of this week .... SIGH .
PATIENCE, Breathe in 123, Breathe out 123.
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