I learned something new yesterday...we parents do not have to come up with the $70,000 per year for ABA Therapy that our autistic children so desperately need! It turns out that all we have to do is contact our schools. Call early Intervention! They will immediately enroll our child and get them started with their 40 hours of intensive one on one ABA therapy!
Hmmm. Perhaps I called the wrong early intervention. Does anyone out there know the right phone number? Or maybe I need to find out the planet where the mom who made that comment lives!
Yesterday, I eagerly awaited the morning show, "The View" to see what kind of coverage they would have regarding Autism. I had heard that they were devoting an entire hour to the topic. I knew it was focusing on the Autism Speaks video, "Autism Every Day". I have heard a lot of criticism for that documentary being too bleak. I, myself, saw the video as serving the purpose of drawing attention to the plight of families experiencing the disorder. Yes, it was a bit over the top. Yes, it was dark. But it did make a point...that autism can be overwhelming. Notice the words "can be". I didn't say "is". Autism can be very overwhelming for a family. Some families pull through it. Some do not. Let's face it, if the movie said "Autism is rough. But we are managing fine" what kind of funding would it draw? And let's face it...this world is about funding.
I figured that they would show the snippets of darkness from the "Autism Every Day" video and offset it with interviews with families. Yep. That is what it was. Lots of statistics. For those of us in the trenches this provided nothing new. We saw children who were verbal and a couple who were not. It demonstrated the spectrum. We also saw a young lady who was 17 and talked to the parents who expressed their concern about what would happen to their daughter when she lost her school services. One little guy was "on his way to recovery" and we witnessed a good banter between he and his mom. It was beautiful!
But what did the worried parent sitting at home with their 2 year old who was showing signs of autism take away from this episode? Early Intervention is key. ABA is the way to do it. Call your school. They will be chomping at the bit to give you your free 40 hours of intensive one on one therapy. This therapy is what will save your child. The viewer also met families that have have done wonderful and are coping well. (Interestingly, these "representative" autism families all had books that they authored to present to the audience.)
But this new parent to Autismville really got no answers about what causes autism. Apparantly it is genetic and the Y chromosome holds some of the blame. One participant mentioned testosterone and that discussion was immediately squashed. You see, the simple version of that story is that testosterone suppresses the body's detoxification processes. If discussion went to detoxification it might go to environment. If it went to environment it might go to mercury. If it went to mercury it might go to vaccines. If it went to vaccines it might go to pharmaceuticals. If it went to pharmaceuticals...the companies that paid for the commercials would get really upset! It is always about the funding!
Thankfully this new autism parent came away from this show with hope. I agree that that is great. But they also came away with the false belief that the school system is going to give their child all of the services he needs. Also, when the parent researches and comes across biomedicals, he is going to think that since there was no discussion of the biomedical therapies on a "current" show about autism then there must not be any credibility to it.
The outside observer who isn't living autism watched this and became worried about the children in their life. Then their concerns were lessened when they realized that this is a genetic disorder and there has never been any autism in their own family. So they must be safe. And gosh, the plight of these families to help their children isn't so bad...after all, the schools provide everything they need! What are these families always complaining about...they don't need additional funding!
In some respects, I feel that this attempt to shine the spotlight on autism did more harm than good.
Tuesday, January 30, 2007
Wednesday, January 24, 2007
A moment in time...
T is becoming his own little man. This is so much fun watching him grow and show us his personality! I decided to make myself take a few moments every month and summarize what both boys are doing. It will be fun to look back and see how our tastes change as our little men grow up.
I posed the following questions to JP:
What is your favorite...
COLOR: "Red and Blue like Thomas and Lightning McQueen"
BOOK : "Thunder and Lightning" (Disney Cars paperback we picked up yesterday at Kmart)
MOVIE: "Cars" (I want to add that we are currently obsessing over the Bear in the Big Blue House Potty video. We watched it atleast 10,000 times a year ago during our potty training phase. We hadn't watched it in months. He requested it last week and wants to watch it over and over again. He is now scripting it over and over again!)
FOOD: "Cake" ...but he won't actually eat cake so I asked for another favorite food...
"Ice Cream" ...up until recently Ice Cream was too cold. So I asked again...
"Grilled cheese" This I believe.
DRINK: "Fruit Punch" Interesting. He always asks for Lemonade.
TOY: "Lightning McQueen" No surprise there.
LETTER: "A"
NUMBER: "2"
SONG: "Wiggles song about cars" I asked if it was the "Big Red Car song". He said no, the Kachow song (Kachow is McQueen's favorite saying). I haven't quite figured out what song we are talking about.
_______
My additions:
We recently started chewing our fingernails again.
Very stimmy: Wiggly Play time video, Bear Potty video, Cars, Cars, and more Cars story lines!
Bed time books:
A snapshot in time for Baby T:
FOOD: Fruit cups, bananas, cinnamon toast, pasta, hot dogs, chicken fingers, cheese. Absolutely not baby food! Not really interested in spoon. Will dip it in the bowl...more to make a mess than out of a desire to eat.
DRINK: Milk (only if it is in a bottle) or anything in brother's cup. He only wants juice if it is his brothers. We found out that he will drink it as long as he thinks it is JPs. So now I have JP take the drink to T. He is a smart little guy...he'll figure out we are tricking him soon!
MOVIES: Anything Baby Einstein.
TOYS: Anything JP has in his hand. Cars, Trains. Shape sorter. Pushing our toy shopping cart.
BOOKS:
WORDS/ACTIONS:
(against my better judgement I will include these...I'll try not to over analyze)
Daddy, Bye Bye (with the wave) , BaBa (bottle), All done, ball, noisy/sloppy kisses, blow noisy kisses, I did it! (we think)
Reportedly heard but unverified: car, duck, puppy, says mama but rarely to me, sigh!
I posed the following questions to JP:
What is your favorite...
COLOR: "Red and Blue like Thomas and Lightning McQueen"
BOOK : "Thunder and Lightning" (Disney Cars paperback we picked up yesterday at Kmart)
MOVIE: "Cars" (I want to add that we are currently obsessing over the Bear in the Big Blue House Potty video. We watched it atleast 10,000 times a year ago during our potty training phase. We hadn't watched it in months. He requested it last week and wants to watch it over and over again. He is now scripting it over and over again!)
FOOD: "Cake" ...but he won't actually eat cake so I asked for another favorite food...
"Ice Cream" ...up until recently Ice Cream was too cold. So I asked again...
"Grilled cheese" This I believe.
DRINK: "Fruit Punch" Interesting. He always asks for Lemonade.
TOY: "Lightning McQueen" No surprise there.
LETTER: "A"
NUMBER: "2"
SONG: "Wiggles song about cars" I asked if it was the "Big Red Car song". He said no, the Kachow song (Kachow is McQueen's favorite saying). I haven't quite figured out what song we are talking about.
_______
My additions:
We recently started chewing our fingernails again.
Very stimmy: Wiggly Play time video, Bear Potty video, Cars, Cars, and more Cars story lines!
Bed time books:
A snapshot in time for Baby T:
FOOD: Fruit cups, bananas, cinnamon toast, pasta, hot dogs, chicken fingers, cheese. Absolutely not baby food! Not really interested in spoon. Will dip it in the bowl...more to make a mess than out of a desire to eat.
DRINK: Milk (only if it is in a bottle) or anything in brother's cup. He only wants juice if it is his brothers. We found out that he will drink it as long as he thinks it is JPs. So now I have JP take the drink to T. He is a smart little guy...he'll figure out we are tricking him soon!
MOVIES: Anything Baby Einstein.
TOYS: Anything JP has in his hand. Cars, Trains. Shape sorter. Pushing our toy shopping cart.
BOOKS:
WORDS/ACTIONS:
(against my better judgement I will include these...I'll try not to over analyze)
Daddy, Bye Bye (with the wave) , BaBa (bottle), All done, ball, noisy/sloppy kisses, blow noisy kisses, I did it! (we think)
Reportedly heard but unverified: car, duck, puppy, says mama but rarely to me, sigh!
Monday, January 22, 2007
Our fork in the road...I know which path to take now
Now for the high points of my morning. I visited our neighborhood school.
1) The principal at this school came from the special education world.
2) I also found out that the school psychologist we worked with at the time of verification is operating from that grade school. This is a huge plus because I will have a familiar face and a great resource to turn to if JP is having issues.
3) I was also pleased with the classroom we visited. It really was very comparable to the preschool he is currently doing fairly well in.
I have to admit that I am nervous about kindergarten. I hear NT families talking about how advance the curriculum is and how much their kids struggle to keep up. In the good old days all we had to do was recite our ABCs to graduate to 1st grade. Now they read in kindergarten!
I was relieved to see that the sight words they have already learned are many of the words JP already has. I keep telling myself that his precociousness with letters and reading will make it easier for him to keep up. Since he won't have to learn the academics he can focus on learning the procedures and the social skills. It would just be too overwhelming to have to catch up on all of it at once!
We also visited a "multi-cat" room. What I saw was a much smaller group of children doing the exact same curriculum but it was adapted to their needs. On the good side, both classrooms were reading the exact same book. However the discussion was dramatically different. And that is fine. That is how it needs to be. But I feel that with JP the curriculum isn't the issue but rather his ability to attend to the curriculum. No, this room is not where he needs to be.
Ultimately, I feel that if we don't try the regular ed Kindergarten I will always question if he could have done it. I truthfully believe that he can. If we give it a go and it doesn't work than we can always back up and find more resources for him. But we won't know if we don't try!
I think the school and I are already in agreement about this placement. I just need to get my ducks in a row before our meeting so that we can get all the needed supports in writing. It is my job to advocate. I guess I am just going to have to start making my list of needs and hope they don't become "demands"!
1) The principal at this school came from the special education world.
2) I also found out that the school psychologist we worked with at the time of verification is operating from that grade school. This is a huge plus because I will have a familiar face and a great resource to turn to if JP is having issues.
3) I was also pleased with the classroom we visited. It really was very comparable to the preschool he is currently doing fairly well in.
I have to admit that I am nervous about kindergarten. I hear NT families talking about how advance the curriculum is and how much their kids struggle to keep up. In the good old days all we had to do was recite our ABCs to graduate to 1st grade. Now they read in kindergarten!
I was relieved to see that the sight words they have already learned are many of the words JP already has. I keep telling myself that his precociousness with letters and reading will make it easier for him to keep up. Since he won't have to learn the academics he can focus on learning the procedures and the social skills. It would just be too overwhelming to have to catch up on all of it at once!
We also visited a "multi-cat" room. What I saw was a much smaller group of children doing the exact same curriculum but it was adapted to their needs. On the good side, both classrooms were reading the exact same book. However the discussion was dramatically different. And that is fine. That is how it needs to be. But I feel that with JP the curriculum isn't the issue but rather his ability to attend to the curriculum. No, this room is not where he needs to be.
Ultimately, I feel that if we don't try the regular ed Kindergarten I will always question if he could have done it. I truthfully believe that he can. If we give it a go and it doesn't work than we can always back up and find more resources for him. But we won't know if we don't try!
I think the school and I are already in agreement about this placement. I just need to get my ducks in a row before our meeting so that we can get all the needed supports in writing. It is my job to advocate. I guess I am just going to have to start making my list of needs and hope they don't become "demands"!
A day in the life of JP
Today was JP's first full Monday on the new schedule. He had preschool from 9 to 11:30. We then met up with Dad for lunch (Dad took the day off to be with T while I toured schools). Then Dad and T went home while JP and I went to Occupational Therapy. Then we went to speech. Then we returned home for a couple hours before JP had swimming lessons. He finally got home in time to put on his PJs. Needless to say he was asleep as soon as his head hit the pillow!
Today was a success for JP and he seemed to handle the activity okay. He actually functions better with things to do. It is when we hang out at home that he gets bored and really stimmy. But I am concerned that the scheduling is going to be too much for T.
We have never "double booked" our afternoons before. Usually he only has to tag along for one session per afternoon. This will probably just mean that instead of getting to hang around and watch JP's sessions, T and I will need to walk around campus or do something else to stay active. Unfortunately, the little man is not the type to just take a nap when he gets tired. If there is something going on he will stay awake to watch it. Perhaps he is a bit of a busy body?
As a side note, I must comment that the college student (undergrad in SLP program) JP was assigned this semester has worked with him previously at another preschool group he is involved in. I am not sure JP remembers her but she did awesome today with him. For the first semester we have been involved in this program I don't feel like we are starting over with the therapist!
For the most part we keep participating in this program at the University because it is social experience for JP with another adult. It's not so much about him making gains in language. (Granted that is a good byproduct.) Typically I have asked them to focus on the same goals that I work on at home. This has been a good way to help him generalize the concepts and I am able to make sure he is "performing" for other people. Plus they have mirrored glass so I can watch the session without being a disruption to him!
Many of these students have not worked with children before and none (until this semester) have had an understanding of autism. In fact, last semester was brutal. The "therapist" (I use that word loosely) does not belong in this program. But the one before her was a natural. We take our chances. I guess I tell myself that you get what you pay for. This is one hour a week of therapy and it is costing us $150 a semester (12 sessions) I can't find private speech therapy that is going to compete with that!
On one hand I regret that we have such a "patch work quilt" of therapies for JP. Of course I would love to have trained ABA therapists working with him 40 hours a week. But we do what we can. I believe it is good for him to learn to work with new people and we definitely keep his life busy! Yes, trained therapists would be great. Maybe after I win the lottery. Or maybe the government or insurance companies will start helping us with these necessary therapies. Yeah, I need to be a realist...I keep my eye on the lottery.
Today was a success for JP and he seemed to handle the activity okay. He actually functions better with things to do. It is when we hang out at home that he gets bored and really stimmy. But I am concerned that the scheduling is going to be too much for T.
We have never "double booked" our afternoons before. Usually he only has to tag along for one session per afternoon. This will probably just mean that instead of getting to hang around and watch JP's sessions, T and I will need to walk around campus or do something else to stay active. Unfortunately, the little man is not the type to just take a nap when he gets tired. If there is something going on he will stay awake to watch it. Perhaps he is a bit of a busy body?
As a side note, I must comment that the college student (undergrad in SLP program) JP was assigned this semester has worked with him previously at another preschool group he is involved in. I am not sure JP remembers her but she did awesome today with him. For the first semester we have been involved in this program I don't feel like we are starting over with the therapist!
For the most part we keep participating in this program at the University because it is social experience for JP with another adult. It's not so much about him making gains in language. (Granted that is a good byproduct.) Typically I have asked them to focus on the same goals that I work on at home. This has been a good way to help him generalize the concepts and I am able to make sure he is "performing" for other people. Plus they have mirrored glass so I can watch the session without being a disruption to him!
Many of these students have not worked with children before and none (until this semester) have had an understanding of autism. In fact, last semester was brutal. The "therapist" (I use that word loosely) does not belong in this program. But the one before her was a natural. We take our chances. I guess I tell myself that you get what you pay for. This is one hour a week of therapy and it is costing us $150 a semester (12 sessions) I can't find private speech therapy that is going to compete with that!
On one hand I regret that we have such a "patch work quilt" of therapies for JP. Of course I would love to have trained ABA therapists working with him 40 hours a week. But we do what we can. I believe it is good for him to learn to work with new people and we definitely keep his life busy! Yes, trained therapists would be great. Maybe after I win the lottery. Or maybe the government or insurance companies will start helping us with these necessary therapies. Yeah, I need to be a realist...I keep my eye on the lottery.
Friday, January 19, 2007
Taking stock
I really have to say that we had a great week! Fortunately the Christmas hiatus is over and JP was able to start back in most of his services. (Many of our services are through local universities so we had to wait for our student population to return.)
One new item on our social calendar is a class at our local YMCA. We did a few classes a couple years ago when he was just diagnosed. The local school district includes it in their "services" where they shadow the child through a particular Y class. Theoretically it is "one on one" as they help the child navigate the activities and social obstacles. However, once we entered the school based preschool it just wasn't an option. The school wouldn't provide the supports and most of the Y classes were at the same times as his preschool.
Well, I recently ran into the Y's Early childhood coordinator and we were talking and she swore that she could handle JP if he came to a class. So I decided to give it a try. I was very nervous. In this class they play in the Gym for 45 minutes and then change clothes and swim for 45 minutes. JP does not do showers and a shower is mandatory. I talked to him about it and set the goal that he just get his toes in the shower. T and I hung out to help him with the transition and although very nervous--he did it!!!
Ultimately, he had a blast. He spent a lot of the gym time playing chase with a littler guy. Of course it wasn't language based so he didn't feel threatened. Nevertheless, it was encouraging because this is the first time I have seen him take turns with the chasing. Until now, he always ran after the others. Unfortunately, he didn't do so well keeping with the group during the songs and art time but they dealt with him okay and kept him somewhat involved. I am excited to see how it goes. It is a fairly small class so it shouldn't be too overwhelming for him. I really hope it will be a good social experience!
JP also returned to his speech preschool group that meets one afternoon a week. They added a couple of peer models this semester and that looks promising. I don't really know how to summarize this weeks session other than he did really well. He participated and even ad libed a few lines while they did a play session with baby dolls. It was cute because he decided that the phone was ringing while they were giving the baby a bath. He threw his therapist for a loop on that one. She was expecting to talk about shampoo and towels . (Of course, he speaks from experience! It never ceases to amaze me how the phone always rings when you have kids in the bath!)
Even midst JPs highlights I have to say that one of my favorite events this week was one on one time with my little T! We attended our first Mommy and me class together. There is a class for 1-3 year olds that we are going to while JP is at preschool. Unfortunately most of T's time is spent watching JP play on cool swings at OT or play with his therapists at speech. I spend much of this time trying to entertain T and ultimately hold him back from the play area. The poor little guy just doesn't get to participate in the cool activities!
Sadly, it took awhile before he accepted that I wasn't pulling him back and that he was allowed to run free! Once he realized that this was his special time he had a blast! We sang silly songs and ate a snack. We climbed over mats and through tunnels. He played (and unfortunately tried to eat) at the rice table. He had a great time! I had a great time!
This week made me realize that I really do have two beautiful boys both inside and out!
JP's diagnosis was devastating but it made me stop and take a look at my life. In some aspects it slowed life down. Life is no longer about acquiring or keeping up with the neighbors. Life is about our family. Life is about happiness and fulfillment. Fulfillment comes from loving and being loved. Yes, our life is crazy full of therapies and appointments but I am not sure I would have it any other way. Without the Autism, I fear that I wouldn't see my life or my precious children for the gift they truly are!
One new item on our social calendar is a class at our local YMCA. We did a few classes a couple years ago when he was just diagnosed. The local school district includes it in their "services" where they shadow the child through a particular Y class. Theoretically it is "one on one" as they help the child navigate the activities and social obstacles. However, once we entered the school based preschool it just wasn't an option. The school wouldn't provide the supports and most of the Y classes were at the same times as his preschool.
Well, I recently ran into the Y's Early childhood coordinator and we were talking and she swore that she could handle JP if he came to a class. So I decided to give it a try. I was very nervous. In this class they play in the Gym for 45 minutes and then change clothes and swim for 45 minutes. JP does not do showers and a shower is mandatory. I talked to him about it and set the goal that he just get his toes in the shower. T and I hung out to help him with the transition and although very nervous--he did it!!!
Ultimately, he had a blast. He spent a lot of the gym time playing chase with a littler guy. Of course it wasn't language based so he didn't feel threatened. Nevertheless, it was encouraging because this is the first time I have seen him take turns with the chasing. Until now, he always ran after the others. Unfortunately, he didn't do so well keeping with the group during the songs and art time but they dealt with him okay and kept him somewhat involved. I am excited to see how it goes. It is a fairly small class so it shouldn't be too overwhelming for him. I really hope it will be a good social experience!
JP also returned to his speech preschool group that meets one afternoon a week. They added a couple of peer models this semester and that looks promising. I don't really know how to summarize this weeks session other than he did really well. He participated and even ad libed a few lines while they did a play session with baby dolls. It was cute because he decided that the phone was ringing while they were giving the baby a bath. He threw his therapist for a loop on that one. She was expecting to talk about shampoo and towels . (Of course, he speaks from experience! It never ceases to amaze me how the phone always rings when you have kids in the bath!)
Even midst JPs highlights I have to say that one of my favorite events this week was one on one time with my little T! We attended our first Mommy and me class together. There is a class for 1-3 year olds that we are going to while JP is at preschool. Unfortunately most of T's time is spent watching JP play on cool swings at OT or play with his therapists at speech. I spend much of this time trying to entertain T and ultimately hold him back from the play area. The poor little guy just doesn't get to participate in the cool activities!
Sadly, it took awhile before he accepted that I wasn't pulling him back and that he was allowed to run free! Once he realized that this was his special time he had a blast! We sang silly songs and ate a snack. We climbed over mats and through tunnels. He played (and unfortunately tried to eat) at the rice table. He had a great time! I had a great time!
This week made me realize that I really do have two beautiful boys both inside and out!
JP's diagnosis was devastating but it made me stop and take a look at my life. In some aspects it slowed life down. Life is no longer about acquiring or keeping up with the neighbors. Life is about our family. Life is about happiness and fulfillment. Fulfillment comes from loving and being loved. Yes, our life is crazy full of therapies and appointments but I am not sure I would have it any other way. Without the Autism, I fear that I wouldn't see my life or my precious children for the gift they truly are!
Thursday, January 18, 2007
Ready or not...
I feel like the world I have struggled to get a grasp on these past few years is about to change. I imagine all parents of soon to be kindergarteners feel this way. But it sure seems scary to me right now. I know that we will get through it and everything will be okay...we've managed this far, right? We will do whatever it takes for JP to get the education he deserves and is entitled.
There was a message on our phone when I got home earlier today. It was from our neighborhood school. They showed JP on their census figures and were wanting to verify if he would be attending the neighborhood school next fall. Obviously on their calling list JP is just one of the neighborhood children. They haven't crossreferenced with the special education world and realized that he is already in the "system".
I actually have a "visit" scheduled with the school next Monday. The early childhood coordinator is taking me for a visit with a regular Kindergarten classroom and a "multi-cat" (special ed room) at a different school. I requested these tours in preparation for our upcoming meetings to discuss his placement for next year.
Is it silly that I don't have the courage to return the call? I guess I fear telling them..."Yes, I do want my son to attend your school. And oh, by the way, he has autism". I guess I fear them saying they aren't set up to accomodate him. I know that they do have a resource room but from what I understand most of the special ed kids get bused off to a different school. This neighborhood school won't have a lot of experience dealing with our issues. Still, I really do want him there. I want him to go to school with the kids that live in our neighborhood. I know that legally they can't deny him. Still, I am not sure I am ready to start this discussion. I fear making this decision based on what I want and not what he needs. I know that it is my job as his advocate to make sure we do what is right. I just prey that we know what that is!
I just don't know which environment will be best. Academically he is already reading and well ahead of the game. Socially--not so much! Also with his sensory issues I imagine a classroom of 30 kids might be too stimulating! Frankly, I want him in a regular ed room with a para by his side. (Atleast for awhile) I firmly believe that with assistance he will understand how school works and flourish. The supports can be faded back as soon as he grasps the concept of learning at school.
I read blogs of other families where inclusion is just a given assumption. Unfortunately this is not so in our school district. In fact, it has a reputation for segregating our kids and 1 on 1 assistance is virtually unheard of. Many of our peers have ended up in the multi-cat (spec ed) rooms. Of course, their children aren't as verbal or as socially aware as JP. He has become pretty verbal but he is still so incredibly far from understanding all the mysterious social rules our society has created. His language is fairly functional yet he can't sit down and carry on a conversation. He can tell you everything he wants you to know about Thomas, Cars, Pooh, or the Wiggles but if you try to ask him questions he will probably walk away.
Oh well. I'll deal with this. We'll get through it. I'll make the call tomorrow. This is such a small step but it feels like the beginning to me. I have been trying to get psyched up for this process and trying to get myself ready in case there is a fight. (sigh) Ready or not, here we go!
There was a message on our phone when I got home earlier today. It was from our neighborhood school. They showed JP on their census figures and were wanting to verify if he would be attending the neighborhood school next fall. Obviously on their calling list JP is just one of the neighborhood children. They haven't crossreferenced with the special education world and realized that he is already in the "system".
I actually have a "visit" scheduled with the school next Monday. The early childhood coordinator is taking me for a visit with a regular Kindergarten classroom and a "multi-cat" (special ed room) at a different school. I requested these tours in preparation for our upcoming meetings to discuss his placement for next year.
Is it silly that I don't have the courage to return the call? I guess I fear telling them..."Yes, I do want my son to attend your school. And oh, by the way, he has autism". I guess I fear them saying they aren't set up to accomodate him. I know that they do have a resource room but from what I understand most of the special ed kids get bused off to a different school. This neighborhood school won't have a lot of experience dealing with our issues. Still, I really do want him there. I want him to go to school with the kids that live in our neighborhood. I know that legally they can't deny him. Still, I am not sure I am ready to start this discussion. I fear making this decision based on what I want and not what he needs. I know that it is my job as his advocate to make sure we do what is right. I just prey that we know what that is!
I just don't know which environment will be best. Academically he is already reading and well ahead of the game. Socially--not so much! Also with his sensory issues I imagine a classroom of 30 kids might be too stimulating! Frankly, I want him in a regular ed room with a para by his side. (Atleast for awhile) I firmly believe that with assistance he will understand how school works and flourish. The supports can be faded back as soon as he grasps the concept of learning at school.
I read blogs of other families where inclusion is just a given assumption. Unfortunately this is not so in our school district. In fact, it has a reputation for segregating our kids and 1 on 1 assistance is virtually unheard of. Many of our peers have ended up in the multi-cat (spec ed) rooms. Of course, their children aren't as verbal or as socially aware as JP. He has become pretty verbal but he is still so incredibly far from understanding all the mysterious social rules our society has created. His language is fairly functional yet he can't sit down and carry on a conversation. He can tell you everything he wants you to know about Thomas, Cars, Pooh, or the Wiggles but if you try to ask him questions he will probably walk away.
Oh well. I'll deal with this. We'll get through it. I'll make the call tomorrow. This is such a small step but it feels like the beginning to me. I have been trying to get psyched up for this process and trying to get myself ready in case there is a fight. (sigh) Ready or not, here we go!
Friday, January 12, 2007
Mommy! No! Don't put glue on my mouth!
Who is the genius that designed glue sticks to look like chap stick?
Thursday, January 11, 2007
Heaven help me!
A few months ago, JP's preschool class talked about pets. I searched through all of our photographs to make a social story about our cat, Devlin. It was actually kind of heart wrenching because I came across several pictures of JP playing with the cat up until shortly before he turned 2. At the time of diagnosis (age 3) we realized that JP showed little awareness that the cat even existed.
Unfortunately, we had to put Devlin to sleep a few weeks after JP showed his preschool class the pictures. Truthfully, Dev had been sick for a number of years and it was his time. Still it was hard to do. JP has been fortunate in that he has not lost a loved one yet. Perhaps I was a coward but I figured we would address the topic if Dev's departure ever registered with him.
Devlin passed away in September. Last week JP and I were playing in the living room and out of the blue he said, "Where is Devlin?". I was shocked and yet thrilled that he had noticed Devlin's disappearance and then even articulated the question!
So I sat down with him and told him that Devlin was in Heaven. I asked him if he knew where Heaven was? He didn't answer so I pointed out the window and asked if he saw the clouds. He said he did. So I explained that Devlin now lives in that blue space above the clouds. I told him that Devlin had gotten really sick and that God had decided it was time for him to come live in Heaven with him.
His response was, "When he falls out of the sky...he will come back to the basement?"
Unfortunately, we had to put Devlin to sleep a few weeks after JP showed his preschool class the pictures. Truthfully, Dev had been sick for a number of years and it was his time. Still it was hard to do. JP has been fortunate in that he has not lost a loved one yet. Perhaps I was a coward but I figured we would address the topic if Dev's departure ever registered with him.
Devlin passed away in September. Last week JP and I were playing in the living room and out of the blue he said, "Where is Devlin?". I was shocked and yet thrilled that he had noticed Devlin's disappearance and then even articulated the question!
So I sat down with him and told him that Devlin was in Heaven. I asked him if he knew where Heaven was? He didn't answer so I pointed out the window and asked if he saw the clouds. He said he did. So I explained that Devlin now lives in that blue space above the clouds. I told him that Devlin had gotten really sick and that God had decided it was time for him to come live in Heaven with him.
His response was, "When he falls out of the sky...he will come back to the basement?"
Monday, January 08, 2007
Time is slipping away...
Oh my gosh. Looking at the date of my last post is shocking! I can't believe it has been that long. The truly shocking part is that December 18th (last post) was probably the last minute of sanity we have had! It has been a crazy last month!
Since I don't have time to do it all justice I will try to just hit the high points.
Christmas
We traveled a couple hours away to be with family. It was a really nice holiday. JP was so much fun. This was the first year that he was excited about the presents. Last year he would open them if we cooerced him but he didn't seem to get much joy from what was inside them. This year he was all over them. He was opening my presents, he was opening T's presents. He was even swindling Grandma out of opening her presents.
He is so into reading right now and once he realized that all the presents have name tags on them he was fascinated with reading them. So he read every present before opening it and told the entire room, "To JP, From Mommy and Daddy". It was really neat. He even helped deliver the presents along with an older cousin! It was beautiful because he was interacting with everyone and enjoying the holiday excitement.
T had a great Christmas as well. He enjoyed his new toys and seemed to enjoy all the new faces around us for the long weekend. I can't say that he showed much interest in unwrapping his own gifts...he didn't get much chance with his big brother around. All I can say is that it is good that we have the van. Otherwise we might have had to rent a Uhaul to get all of their loot home!
Oh and it was a successful year with Santa Claus. I think between all the visits at our various therapies and such we met up atleast 5 times. By the end, JP was cautious but tolerant of the old guy. T was still a little skeptical.
Birthday party
We got home from Christmas in time to have JP's 5th birthday party. I debated including peers from school but with 17 kids in the class I would have had to hand pick a few and that just didn't seem right. And since this was his first party with children I thought I should keep it as comfortable as possible. I decided to invite his peers from his speech preschool at the local university. I also invited a couple of friends from some of our other services. We ended up with 7 party goers. But I really must admit that it felt like no more than 27. After the party I had to look at the list of names again. I couldn't believe that there hadn't been more in attendence! There was so much activity there must have been atleast 3 of each child.
But it went amazing! JP did awesome. I wanted this to be a "practice" birthday party for everyone. Most of these children are going to be the ones left out of parties. I know this because we are already being excluded from the parties of JP's peers in his "integrated" preschool. I have heard the other kids on the van talk about so and so's birthday party. I just hope JP doesn't realize that he is being excluded.
So I made a scavenger hunt of letters, shapes, and numbers for them when they first arrived. Then we played pin the tail on the donkey. No one wore a blindfold and it was okay! It was difficult to even get a couple to touch the tail and it was okay! It truly was a success because each child was able to go at their own speed. Then we had pizza, cake and ice cream. JP allowed us to sing "Happy Birthday" quietly. He covered his ears but still smiled the whole time. Then a big surprise--he blew out the candle!!!
We finished off the chaos playing with the parachute and bouncing balls around on it. This was truly magical because up until last year JP was terrified of the parachute. We bought one for therapy but found that when alone with it he was fine. It was the sensory experience of all the other participants shaking it. At his party he was right there with the others shrieking and shaking it! He even took his turn at running under it! He has never gone under it!!!
It was truly the most magical day of my life. I was so proud of him! He opened his presents and tolerated the attention. He played the games and had fun doing it! I am not sure if I teared up mostly because of my happiness or because I could truly see his happiness on his face!
Day after his birthday
We are all sick. JP and I are starting to get better but T now has RSV. Fortunately, he does seems to be getting better so there might be a light at the end of the tunnel. I am just thankful he is okay and I look forward to much more happiness--once we are all healthy!
Since I don't have time to do it all justice I will try to just hit the high points.
Christmas
We traveled a couple hours away to be with family. It was a really nice holiday. JP was so much fun. This was the first year that he was excited about the presents. Last year he would open them if we cooerced him but he didn't seem to get much joy from what was inside them. This year he was all over them. He was opening my presents, he was opening T's presents. He was even swindling Grandma out of opening her presents.
He is so into reading right now and once he realized that all the presents have name tags on them he was fascinated with reading them. So he read every present before opening it and told the entire room, "To JP, From Mommy and Daddy". It was really neat. He even helped deliver the presents along with an older cousin! It was beautiful because he was interacting with everyone and enjoying the holiday excitement.
T had a great Christmas as well. He enjoyed his new toys and seemed to enjoy all the new faces around us for the long weekend. I can't say that he showed much interest in unwrapping his own gifts...he didn't get much chance with his big brother around. All I can say is that it is good that we have the van. Otherwise we might have had to rent a Uhaul to get all of their loot home!
Oh and it was a successful year with Santa Claus. I think between all the visits at our various therapies and such we met up atleast 5 times. By the end, JP was cautious but tolerant of the old guy. T was still a little skeptical.
Birthday party
We got home from Christmas in time to have JP's 5th birthday party. I debated including peers from school but with 17 kids in the class I would have had to hand pick a few and that just didn't seem right. And since this was his first party with children I thought I should keep it as comfortable as possible. I decided to invite his peers from his speech preschool at the local university. I also invited a couple of friends from some of our other services. We ended up with 7 party goers. But I really must admit that it felt like no more than 27. After the party I had to look at the list of names again. I couldn't believe that there hadn't been more in attendence! There was so much activity there must have been atleast 3 of each child.
But it went amazing! JP did awesome. I wanted this to be a "practice" birthday party for everyone. Most of these children are going to be the ones left out of parties. I know this because we are already being excluded from the parties of JP's peers in his "integrated" preschool. I have heard the other kids on the van talk about so and so's birthday party. I just hope JP doesn't realize that he is being excluded.
So I made a scavenger hunt of letters, shapes, and numbers for them when they first arrived. Then we played pin the tail on the donkey. No one wore a blindfold and it was okay! It was difficult to even get a couple to touch the tail and it was okay! It truly was a success because each child was able to go at their own speed. Then we had pizza, cake and ice cream. JP allowed us to sing "Happy Birthday" quietly. He covered his ears but still smiled the whole time. Then a big surprise--he blew out the candle!!!
We finished off the chaos playing with the parachute and bouncing balls around on it. This was truly magical because up until last year JP was terrified of the parachute. We bought one for therapy but found that when alone with it he was fine. It was the sensory experience of all the other participants shaking it. At his party he was right there with the others shrieking and shaking it! He even took his turn at running under it! He has never gone under it!!!
It was truly the most magical day of my life. I was so proud of him! He opened his presents and tolerated the attention. He played the games and had fun doing it! I am not sure if I teared up mostly because of my happiness or because I could truly see his happiness on his face!
Day after his birthday
We are all sick. JP and I are starting to get better but T now has RSV. Fortunately, he does seems to be getting better so there might be a light at the end of the tunnel. I am just thankful he is okay and I look forward to much more happiness--once we are all healthy!
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