Attn: Sharon, regarding Garrett and school

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ladyheart
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Attn: Sharon, regarding Garrett and school

Post by ladyheart » June 25th, 2009, 1:35 am

Hi, me again.

You are concerned about him starting junior high and I don't blame you. I was SO worried when my Asperger son entered middle school. I went and had a long talk with the principal and he assured me that the kids who are "different" are now really watched out for by most of the other kids. They aren't made fun of like they used to be when we were kids. I still had my doubts. My son did have a few troubles, but very minor and easily remedied by talking to the teacher. The principal could link Garrett up with someone who could walk with him in the halls and be a 'protector of his chest'. The other kids actually enjoy these "jobs". I worked as an aide in a middle school and one boy who was big and strong, but a little "troubled" was assigned to help another kid in the school. That big and strong kid changed overnight. He loved working with the other kid and felt useful and important and I think his heart was touched with a love for the kid.

Junior high kids are very rowdy. One time when I went to the school, I got slammed against a door by two kids just horsing around and didn't see me. It really hurt. I think someone to hang around Garrett and fend off these types of incidents might be good. Just an idea.


My son actually had a great time in middle school and had very successful experiences. I went to each of his teachers before the year started and explained that he is High Functioning and his Aspergers is hardly noticeable. But that he needs specific directions when given an assignment or playing games in gym and he is very sensitive, and will ask questions over and over and it might get irritating but that means he needs it re-worded. The teachers were wonderfully receptive to me and were then prepared to meet my son.

Garrett sounds like a fun kid and I think he will do well.
Lori
Idiopathic Cardiomyopathy & CHF 1996
Mitral Valve Replacement 1997
first ICD 2005, Guidant
second ICD 2010, St. Jude
Sudden Cardiac Arrests: 1 in 2005, 10 in 2009

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Re: Attn: Sharon, regarding Garrett and school

Post by Momof2HeartKids » June 25th, 2009, 7:54 am

Thanks for this post.. Jake has PDD/Aspergers and is also very high functioning and it isnt noticible when just spending a short time with him unless something happens and his reactions are different. He is very sensitive and a simple upset instead of lasting a short time like it should can effect the rest of the day. He will also ask question over and over and his teacher at times has said things like "he knows the answer he just dosent want to do it" it urks me.. she dosent get that he may 'know' the answer but needs reassurance, help with it, etc. which is why he is asking repeadatly. But anways I liked your post because even though Jake isnt facing junior high quite yet I have wondered what it will be like because he keeps getting older and the way he is about things isnt if you know what I mean.
Wishing You a Zap Free Day,
Cyndie


(Brugada Syndrome, Long QT Syndrome, Sick Sinus Syndrome, ICD & 2 children one with Brugada, ICD and one with Brugada, Long QT and removed ICD due to staph)

ICDkid
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Re: Attn: Sharon, regarding Garrett and school

Post by ICDkid » June 26th, 2009, 12:40 am

Hi Lori and Cyndie!!
Thanks for the helpful advice. I will certainly put it to good use.

Just a question on your little/Big guys reaction to loud noises. Do they cover their ears when they hear a loud popping sound, or, for that matter any loud sounds? Garrett did and still does. Although, since this incident, he seems a bit more brave. He still hates latex balloons, he is petrified of them. They pop! Do they focus on one thing or subject? Garrett loves non-fiction disasters. He loves the Titanic, the Hendenberg Disaster, Butte, Montana Explosion in the late 1800's...he can quote just about any fact on them. Although, since the incident, he is a bit rusty on things. His main focus right now is Transformers. His uncle took him yesterday to see the movie on opening day. Quite a treat for the both of them. My brother promised him that he would take him as soon as he was out of the hospital. This is when he woke up from his coma and wasn't very verbal. He just looked at my brother and his eyes were lit up like a Christmas tree. He smiled with his eyes at him. It was a very deep moment. This is when they weren't sure if he would make it. Now, he got to do it. We are so blessed and thankful.

Now, Cyndie, does Jake have PDD-NOS or just PDD/Asperger's? They thought Garrett had the PDD-NOS/Asperger's at first. But it turned out to be just Asperger's. We call it Cheeseburgers. I know...It just makes everything a bit more fun when you can play with the words. I tend to play around with words...My husband cannot stand it :D

Lori, right now we are set-up for the Special Day Classes due to the brain damage. We would have been mainstreamed if this did not happen. I will be fighting for him to mainstream. Once we get established as to where he is at with them, I will demand a parent meeting every month to check his progress. I want them to know that he isn't handicapped, he is all there, he just needs some prodding and directions. He can handle 2 step directions. Anything over 3 he has trouble focusing on and remembering. This is because of the brain damage and it caused short term memory loss. Some of the therapies is that we sometimes sing Happy Birthday. We will be in the car and we are just singing Happy Birthday. It is a memory game. People look at us, but I don't care, we are having fun.

Well ladies, it is late. I enjoy talking with you.
God's Blessings,
Sharon
Mom to Garrett
Orange County, CA
Sharon
Garrett's mom
Orange County, CA

"God only gives us what we can handle, I just wish he didn't trust me so much!"
~Mother Theresa

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ladyheart
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Re: Attn: Sharon, regarding Garrett and school

Post by ladyheart » June 26th, 2009, 4:35 am

That is so cute, calling it Cheeseburgers. I'm going to have to spring that one on my son, he'll enjoy it He is almost 15.

And thanks, Cyndie, for enjoying my post. I can totally understand what you're talking about. How old is Jake again? I have found that teachers don't have a clue about the communication needs of Asperger kids, even if they learned a little bit about it in their psychology classes. It definitely is very frustrating.

The last two or three years, I haven't noticed his distaste for loud noises as much as when he was younger. He could not stand to have his hair cut with clippers because of the loud buzzing noise; he's okay with it now. He once wanted me to take down a clock I had on the wall because it clicked too loud. He would often cry at sudden loud noises and cover his ears. His big focus when he was young was Power Rangers...all day long, over and over, the same video. He acted out all their fight moves. When neighbor kids came over, he got them into Power Ranger fighting. He would also act it out at school on the playground, often alone. I know other kids thought he was strange, but he didn't care, he was doing what he loved.

Now his focus is video games. When he's not playing them, he's writing new ones---(his dream is to be a video game designer). He writes pages and pages of stories and draws pictures of all his characters. And here's another thing that we let him do, even though its quite strange to outsiders--he acts out characters in his room. We can hear him talking for hours in his room as if he's got a bunch of people in there. He used to do it wherever he felt like doing it, but my husband explained to him that he cannot do it in public. When I listen in on him, which isn't very often, the conversations are quite brilliant. I am concerned, though, that if he ever marries, his need to do this will carry on and he is going to have to find a very understanding wife.

I think the fact that Garrett could do three step directions before his brain damage is really good! If I tell Michael more than one thing to do at a time, he gets confused if I don't word it just right.


Sorry I'm going on so long, I just want to tell you one more thing, that I think is funny, but it also concerns me. He doesn't understand why he should say hi to people in the halls at school if they say hi to him. (His older sister goes to the same school and people have told her, "Your brother doesn't like me, he won't say hi.") When we talked to him about it, he says he doesn't want to say hi because then they might want to talk and he doesn't want to talk, he just wants to think about cool things. When he was in public school, he was in some resource classes which included social skills. I think he was more outgoing then. I think we need to do something about that again but the school they go to now doesn't offer resource social skills.
Lori
Idiopathic Cardiomyopathy & CHF 1996
Mitral Valve Replacement 1997
first ICD 2005, Guidant
second ICD 2010, St. Jude
Sudden Cardiac Arrests: 1 in 2005, 10 in 2009

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Momof2HeartKids
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Re: Attn: Sharon, regarding Garrett and school

Post by Momof2HeartKids » June 26th, 2009, 8:03 am

Lori and Sharon, Its so nice to talk to you both about this.
Sharon,I had tears reading the moment your brother had with Garrett and I am so glad they we able to go and see transformers together. You are so blessed.

As far as Jake's dx, when he was 3 they first dx him as Sensory Intergration Dysfuntion and OCD. From the moment he was born he couldnt stand loud sounds, as a toddler he would wash his hands repeadly and then fist them so he didnt have to touch anything, he would have a hard time with clothing I had to get him certain socks and underwear with fabric over the band he couldnt take the elastic, if he was used to wearing long sleeves in the winter when spring came it would take a long time to get him to wear short sleeves, etc. I could go on and on but your both experienced so I think you get the idea. When he got older they said that many kids with Sensory Intergration and OCD actually have aspergers, that is when they retested him and said he is on the spectrum and was high functioning and basically has Aspergers but that they are going to list it as PDD-NOS because a couple things dont fall perfectly under Aspergers,one was he has excellent above average coordination. So who knows the exact term it should have.

Loud Noises he always covered his ears for everything, we had to take him out of a circus because of a clown car backfiring, he sat through the american idol concert with his hands over his ears and would yell out as if to drown out the sound, it was bad but now he is much better since his shock storm and his recent hospitalization for some reason but definatly still has sensitivity. I cant listen to music most times when he is in the car because he has to have it turned off (but of course if its his he can turn it up) he still dosent like things to get loud and chaotic, dosent like loud resturants and wont even go into some stores - like Abercrombie because the music is so loud.

I can relate to the not saying hi in the halls. My husband and I were just talking about that. When we went to pick Jake up on the last day of school kids were saying "bye Jake" and he would just walk by and we said "Jake say by to your friends" and he said "I already did earlier". I always worry that people will think he is rude. I try to explain this to him but he really dosent get it and thinks its fine. When he was in kindergarden he was in an excellent program and they worked with him for one month on just making eye contact when someone said hello, he used to not and that helped a lot. This school they dont do any program with him.

Jakes excels in math and has difficulty with reading and comprehension. His obsessions change. Right now it is teck decks these tiny finger skateboards. It has been video games, and recently it was origami, I had so muh orignami around my house you wouldnt believe it. Sometimes he will draw the same picture over and over again. His big one used to be counting his money. He would count it day after day over and over. I would joke and say Jake did you get any money today and he'd say no, and I would say than Im sure its going to be the same amount as it was when you counted it yesterday. Its always changing but when he gets into something it is intensly. But other than these types of things and some behavioral reactions or things he just dosent understand sometimes, he fits right in with all the other kids its easy to miss it. I think that is the hardest part with the teachers.

The acting out thing your son is doing Lori is interesting, sounds like he has an excellent imagination and maybe he will be a video game designer. Jake never played pretend, he still dosent. Never picked up and action figure and did anything with it, etc. Even with cars he wouldnt really drive his cars around maybe a little, but mostly lined them up and then pushed them hard to see how far each one would go and then re line them up based on which one went the furthest.
Wishing You a Zap Free Day,
Cyndie


(Brugada Syndrome, Long QT Syndrome, Sick Sinus Syndrome, ICD & 2 children one with Brugada, ICD and one with Brugada, Long QT and removed ICD due to staph)

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Re: Attn: Sharon, regarding Garrett and school

Post by ladyheart » June 26th, 2009, 11:08 pm

I enjoyed reading about your son. What he said about already saying goodbye to his friends made me burst right out laughing because that's exactly something Michael would have done.

He does have an imagination--in overdrive. And he has a sense of humor. Both are rare with the spectrum. But they are there with him, to the excess, so I think they are his obsessions, like all Asperger people have an obsession or to. I'm kind of envious of Sharon with Garrett liking skateboarding and other things. Michael doesn't like to do any sports, except the fun things they do in PE at school (dodge ball, etc). Personal hygiene and grooming have been like pulling teeth, which I've read are classic signs of Aspergers, but he's suddenly starting to shower every day without being told to!

Does Jake do sports? And what grade is he going into? Michael also excels in Math. I'm so glad because he has limits understanding other subjects.
Lori
Idiopathic Cardiomyopathy & CHF 1996
Mitral Valve Replacement 1997
first ICD 2005, Guidant
second ICD 2010, St. Jude
Sudden Cardiac Arrests: 1 in 2005, 10 in 2009

ICDkid
Posts: 71
Joined: June 21st, 2009, 11:16 pm

Re: Attn: Sharon, regarding Garrett and school

Post by ICDkid » June 27th, 2009, 12:06 am

Hi ladies!!!
Imaginations run wild with Garrett. I would hear him in his room for hours regarding making stories about his Transformers. I would shout to him to go to bed! He'd say okay. Then a few minutes of silence and then back to story telling. That is something I miss. It seemed to have gone away, but now, I've noticed once in a while he will whisper a bit and I hear names of his Transformers. So, maybe it is coming back to him, hopefully.

Ah, ha! The old Sensory Integration Dysfunction dx!!! Yes, Garrett has/had that too. Have you ladies looked on a site, it is called Therapro. It is what therapists use for either speech, physical or occupational therapy. That is where they buy their supplies. There are also books to help parents with certain diagnosis. Included in that are the full range of the Spectrum Disorders (Autism, Asperger's, PDD,Sensory Integration Dysfunction) These might help you out for reference. Even if you don't buy the books, there are other things there to give you ideas about what you could do to give him help with out him realizing it. I've checked the books out from the local library.

Lori, regarding Garrett liking sports, the only sports he loves is on a video game. He'd rather sit in front of a computer or play his video games. Although, riding his bike and his scooter are his only sports he really likes. Oh yes, swimming. He is such a fish. I was told he could swim, but very carefully. Nothing too rough. And to start off really slow. Do your boys swim?

Garrett is the same way about saying hi in the halls. I dunno. Sometimes he would say hi to a kid and the kid could not hear him and did not reply, this would set Garrett on the forget about it, I tried. Or a kid would say hi and Garrett would nod a hi.

It is quite the interesting mind thing. If I step back out of my Mommy box and look at it from a scientific or curious point of view, we are so lucky to be able to watch these kids do what they do. They are brilliant and smart. Socially, well, it just needs some work. I think you should look into services thru the school or maybe there is a regional center where you live for social skills workshops. Either way, it might not hurt. If you don't like it, don't go.

I enjoy our posts.
Take Care,
Sharon
Garrett's Mom
O.C., CA
Sharon
Garrett's mom
Orange County, CA

"God only gives us what we can handle, I just wish he didn't trust me so much!"
~Mother Theresa

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Re: Attn: Sharon, regarding Garrett and school

Post by Momof2HeartKids » June 27th, 2009, 7:29 am

Ha ha..Jake will do the nod thing to say hello too sometimes and many times when he says hello, goodbye, thank you, etc. to someone and they didnt hear him he wont repeat it or tells me he did. And get agravated that I asked him to say it again. Now that he is getting older and thinks he cool these days he does an upward nod with his chin to say hello sometimes.

I guess Jake differs and may be one of the reasons for the trouble with his dx because he is very athletic and very coordianted. It seems like any sport he does he does well, from baseball to bowling and badmiton. He cant do things like soccer, basketball and such so we stick to baseball. It limits the amount of constant running he would do. His team just won the town champhionship Wed night and now he made the all-star team which is 13 kids picked out of over 100. He rides an ATV - against my wishes this is a contast battle with my husband and I. He loves riding his bike and scooter and recently has been using a neighbors skateboard thing that has two wheels underneath, I dont know what they are called. Gotta run Jake to baseball practice, Have a great day ladies. I love learning about your boys.
Wishing You a Zap Free Day,
Cyndie


(Brugada Syndrome, Long QT Syndrome, Sick Sinus Syndrome, ICD & 2 children one with Brugada, ICD and one with Brugada, Long QT and removed ICD due to staph)

ICDkid
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Re: Attn: Sharon, regarding Garrett and school

Post by ICDkid » June 27th, 2009, 12:58 pm

Hi Cyndie.

Reading about what Jake does sportswise inspires me. I thought Garrett was restricted from just about any sport thing by reading the St. Jude's owner's manual. I will try to look into more things for Garrett. I got to keep him active. I see his surgeon on the 27th, I will ask him more then. I can't say I blame you on the ATV, but, hey, he is being a kid thank God!

In the re-hab hospital, it was all traumatic injuries or birth defects of the neurological kind. OMG! My heart ached at the quality of life they lead. Almost everyone in there had traychial tubes, oxygen tents, masks, ventillators...it was quite devastating. Now The Guvenator wants to cut services to these kids...That's a whole other Oprah!!!
I guess what I am trying to say is that we are so lucky we are able to be worried about what they try and do physical-wise. Some kids never get out of bed or the hospital. I am so thankful we made it out of there. I pray that everyone could.

By the way, I went on that website you recommended. Very interesting. I will look more into it. Thanks.

Just a quick note to say hi and thanks again for the info.
Sharon
Garrett's mom
Sharon
Garrett's mom
Orange County, CA

"God only gives us what we can handle, I just wish he didn't trust me so much!"
~Mother Theresa

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