Where does your child "fit in"???

[Gretchen]

Hey there people,
What is HFA?
I didn't have time to read all the reply's so, sorry if it's been mentioned.
I used to work at the YMCA as a lifeguard, swim instructor, coach etc. If it had to do with water I did it. And....if I do say so myself I was quite good! Anyway....the Y had great resources for 'not your garden variety' kids. I say it that way, because you don't have to have a syndrome, disorder, spectrum (as my DS has) to have issues with water, etc. I can not tell you how many kids I had that didn't want to get their face wet, go under, etc. MOST of them were older, like 8, 9, 10. I taught adults that had such fear...anyway. If you have a Y nearby, or not so nearby, give them a call, and let them know what you are looking for. We used to do private lessons, and I used to go to people's homes in the summer.
Also, you may want to look into home school resources, or montessori. They sometimes have groups, classes etc. Oh, and (I'm sure you've done this already) you could talk to the instructor/owner of the studio (dance, athletics, etc) and see what they are willing to do for you. We have had some instructors put together an additional class that was a little shorter than the usual one and had some of the garden variety kids come too. That way the kids get to spend time in a more age appropriate group and not get frustrated or wiggy when they can't do it all.
Hang in there....
Gretchen

 

[pcparamedics01]

I am having a big problem, and I hope you all can give suggestions and ideas.

DS7 is HFA (although I'm thinking this is a problem almost every child with a disability encounters). I have tried my best to keep him active in the community, out of the house, doing stuff, learning things, etc etc.

Well of course he has global delays. For quite a while, we got away with putting him in preschool-level activities, or in the preschool-level class at lessons. He was a year or two older, but he still blended in well enough it wasn't a big deal. Socially, he was still more at a preschool level anyway, so it worked for everyone.

So he'll be in 2nd grade next week (how did that happen?) and while he is mainstreamed at school, we still have issues with the extra-cirricular activities. For example: swim lessons. In our town, the Red Cross swim lessons are very popular, and DS enjoys the water. The past 3 years we had him in the preschool class. In that class, the parents also went into the pool, so we were good to go, no problem. Well this summer, he was just too old to be in the preschool class. I don't think the Red Cross would have cared, but I cared. So we moved him up to the beginner class. Now the class was small, only 4 or 5 kids per teacher, so he was supervised well enough. But. He wasn't learning anything, it just wasn't the right place for him.

We also have him in taekwondo. The same thing happened. He was in the preschool class until about a month ago. He finally got to a belt level, and he was at least a head taller than any of the other kids, where the preschool class wasn't appropriate. But. The next class is too much, he doesn't fit in there either. I have been attending class with him, sort of like a para, and it is an exercise in frustration. (I have even more respect for paras than ever, and I always had a lot)

He doesn't "fit in" anywhere. I did know that at some point this was going to happen, but now that it's here, I just don't know how to handle it. We live in a fairly small community that has alot in place for disabled adults, but nothing in place for children- no children's Special Olympics or anything at all like that. There is a support group that just started last spring but they didn't meet over the summer. I had been wading thru on my own pretty well up to this point, keeping him mainstreamed into activities. I don't know if I should keep pushing.

I don't want it to seem like I'm in denial. But I do want him to be out of the house, doing things, and I'm having a harder and harder time with that. The social development is so important. Everyone has been playing nice with me so far, but I wonder if at some point, they're going to stop. Sure, I think the Red Cross would get stuck one way or the other, letting him take lessons, but I don't want to become one of "those parents" either and I can see the beginnings of that. Of the hundreds of kids that went thru the swim lessons this summer, I am almost positive (because I was really really watching) that our son was the only child with a disability there. At taekwondo we are over to the side doing our own little thing, and they've always been really nice about it, but you can just tell that they wonder why I'm even bothering. I just feel like I'm constantly trying to pave the way. And I know that's never going to stop, but some days it's really tiring.

I don't know if I need a big hug, a margarita, or some advice. Any of them would be appreciated.

Wow, I have asked myself the same thing, then I take it further will he have a girlfriend, will he marry etc? I have him in Karate as well. He does well! I have him at score. It is an educational learning center. Great place if you have one. He gets his socialization there at times. No play dateis issues though. No one calls even the ones in his class in my neighborhood. That really bothers me. He to is HFA. He has his sister and us! Because he is in regular ed with inclusion for the first time this year no real paydates but perhaps some this year. He does get invited to everyones birthday though that is a plus. Even though these partes now me on the block perhaps they are sceptical about havein him at there home.I do not know! I have cried many nights regarding this issue.

Perhaps someone can tell me why?

 

[pcparamedics01]

Hey there people,
What is HFA?


Sorry we use a lot of acronyms, HFA is High Functioning Autism.

 

[Hasil72]

mdsouth, you know what I've noticed, is that the little girls flock to Justin. I met another mom who said the same thing about her son. I think when little girls are kg-1st-2nd grade, in that range, they have a pretty strong maternal instinct going. Just my guess since I've only got boys, but I've been a little girl. A very long time ago.

Anyway, the little girls are usually all over him, wanting to help.... and he is a smart little boy, he's quite happy to let them. He's like a little chick magnet. Giggling and batting his eyelashes.

Becky, I'm in the same situation! The girls seem to be drawn to DS(8) who is on the spectrum, has ADHD, SID, and the newest addition to the list, generalized aniety disorder. DH thought is was a trip that all these little girls kept coming over to say hi to Dalton at the ice cream social at the end of last school year. Most seem to watch out for him. All except a local girl who knows he's different because her grandmother works that the afterschool program my DS attends. She antagonizes him and deliberately tries to get him in trouble. Nice, huh?

I just wish he had even one good friend, male or female, that won't "push DS's buttons" just to get what he wants. We have 2 boys around the same age as DS on our street. One can't be bothered and the other will occasionally play as long as no one else is around but will manipulate DS to be sure everything goes to his (the other boy) advantage knowing that DS would rather give in than have the neighbor leave. Last night we had damage control over a Lego man. Neighbor left after not getting the guy he wanted so DS started to melt down and try to run after him begging him to stay. What do you do? He can't participate in organized sports, there are no clubs for elementary kids, and any library groups start before I get out of work. I wish I had fabulous advice for you, but I'm stuck in the same sinking boat.

 

[pcparamedics01]

Becky, I'm in the same situation! I just wish he had even one good friend, male or female, that won't "push DS's buttons" just to get what he wants. We have 2 boys around the same age as DS on our street. One can't be bothered and the other will occasionally play as long as no one else is around but will manipulate DS to be sure everything goes to his (the other boy) advantage knowing that DS would rather give in than have the neighbor leave. Last night we had damage control over a Lego man. Neighbor left after not getting the guy he wanted so DS started to melt down and try to run after him begging him to stay. What do you do? He can't participate in organized sports, there are no clubs for elementary kids, and any library groups start before I get out of work. I wish I had fabulous advice for you, but I'm stuck in the same sinking boat.

I am in the same situation with friends and neighbors! I am in the same sinking boat!

 

[BEloveDisney]

Where do you live? Here Special Olympics starts at age 6. I thought that was a national thing. Maybe not. They can't compete until age 8, but they can practice at 6. Also, if they don't have it in your county, you can go to another county to do whatever sport they offer that your county doesn't. (at least in PA anyway)

 

[NJMomma]

to us all

I am also on the sinking boat, and I don't know how to swim! DS has PDD-NOS, acts like HFA. When he was younger he did group swimming lessons, then adaptive aquatics (which was way too easy for him) then we did private lessons. Private lessons worked out well, but they were very pricey, so we no longer do those. He knows how to swim well enough, and I didn't see the point of him learning every kind of stroke when he'll never be on the swim team. He can swim independantly and for a good distance, even though his form is terrible - but who cares about that! I agree with the swimming being something they need to know, no matter how. Especially as someone who can't swim, it was a high priority for me.

Sports don't work for us either. He just doesn't have the attention span. He does karate at the Little Gym, the are a national chain. It's like "karate lite" but he's out with other kids so I am happy enough. He does scouts, but DH & I are the leaders. Next year when cub scouts are over, I don't think he'll be moving up to boy scouts because there is not the same level of parent involvment. He takes drum lessons 1x/wk, goes to social skills class. Now in summer he is in a special needs day camp which we LOVE. He can be himself there - he tries sports there - it's great! We are lucky that our district pays for 4 wks b/c it's very expensive.

I was thinking about the horseback riding. I wonder if he would be scared....

 

[ecki]

I realized today Kayla will never "fit in". Maybe I've just been deluding myself. But today at the 4th of July parade a family was standing near us and I heard the boy say he was 2 1/2. He was jumping around, climbing things, talking. And then there's Kayla who's 4 and she's sitting in her stroller looking at her wiggling fingers. But Kayla will never know or care that she doesn't "fit in", she's completely happy in her own little world.

Then there's my older DD who has PDD-NOS and Anxiety Disorder. She'll be 7 next week and is academically very bright. But socially she just doesn't "get it" and it's frustrating. She was in the parade marching with her Brownie troop and OMG, she just looked SO friggin SERIOUS out there. She just couldn't have "fun" marching, she was so tense. And after the parade they had a community fair in the park but she didn't want to play with any of her school mates from Brownies. She just hung on to me & DH. Sigh. On the plus side she did approach two of her former teachers with only a little prompting from me. Before she would have just broken down and cried.

 

[lucigo]

I'm not sure what it would be called in your area, but here we have the Autism Society of the Panhandle. Its been a lifesaver. We get together during the school year once a month for breakfast just to talk about whatever, and we have meetings at least once a month where guest speakers talk about things like IEPs and estate planning. In the summer (now) we have a Kids for Camp learning day camp from 9am-3pm daily. The kids have their own 1:1 teacher and are learning amazing things based on their abilities. There is a place for everyone, and the parents, and the teachers learn as much as the kids! When camp starts in the summer its like going to our home planet for 6 weeks...back where everyone understands!

If you don't have a group like this in your area maybe you could start one? It really is SO helpful to be able to talk to other parents who "get it", and those with kids a few years older can be an immense knowlege bank.

 

[LuvsTinker]

Then there's my older DD who has PDD-NOS and Anxiety Disorder. She'll be 7 next week and is academically very bright. But socially she just doesn't "get it" and it's frustrating. She was in the parade marching with her Brownie troop and OMG, she just looked SO friggin SERIOUS out there. She just couldn't have "fun" marching, she was so tense. And after the parade they had a community fair in the park but she didn't want to play with any of her school mates from Brownies. She just hung on to me & DH. Sigh. On the plus side she did approach two of her former teachers with only a little prompting from me. Before she would have just broken down and cried.

Your daughter sounds like my 8 yo son. Seldom will we see him actually "play" with another child; stays to himself most of the time. And we never know what his attitude will be about going somewhere fun.

He does enjoy his horseback riding at the therapeutic riding center. And was enjoying his private swim lessons until the instructor starting letting go of him and he freaked.

 

[mechurchlady]

Special Olympics is age 8 and up but there are other programs available.
http://www.specialolympics.org/Special+Olympics+Public+Website/English/Compete/default.htm

http://www.specialolympics.org/Spec...ves/Family_Support/Young_Athletes/default.htm
Young Athletes starts of the kids off on building skills needed for competing in the Special Olympics and is ages 2-7 with intellectual impairments.

http://www.specialolympicsga.org/compete_athletes/become_an_athlete/eligibility_requirements.htm
I found in the state of Georgia your answer.

Age Requirements

There is no maximum age limitation for participation in Special Olympics. The minimum age requirement for participation in Special Olympics competition is 8 years of age. An Accredited Program may permit children who are at least 6 years old to participate in age-appropriate Special Olympics training programs offered by that Accredited Program, or in specific (and age-appropriate) cultural or social activities offered during the course of a Special Olympics event. However, no child may participate in a Special Olympics competition (or be awarded medals or ribbons associated with competition) before his or her 8th birthday

That is the key to the question, Accredited Program. The chapters are known as Programs, sigh. For a child under 8 years old to compete they must find an accredited program that is offering stuff for the littlest kids. Also any program staff can deem a person unfit to compete. They may feel that a 7-year old cannot safely participate.

Anyone can compete but there are safety guidelines and there are limitations that any business impose. Could you see the Special Olympics explaining how a spectator got stabbed by a javelin?.

I hope you do get the kids into their programs as they do help a lot.

For the profoundly disabled there is MATP.
http://www.specialolympics.org/Spec...bsite/English/Compete/Sports_Offered/MATP.htm

http://www.specialolympics.org/Spec...otor+Activities+Training+Program+athletes.htm
That shows three competitors who were in MATP and it is touching to read. No kid or person seems to be left behind at the Special Olympics.

 

[ireland_nicole]

Thanks ya'll;
I'm in that boat, too - and appreciating the ideas, feedback, etc. Sometimes, I forget, even for a second, that it's going to get harder, not easier(sigh) but then I remember that we're not in that boat alone

 

[disney-super-mom]

I'm in the same boat too.

DS 9 (Ryan) is very social, loves swimming and baseball (plays on DH's little league team), and even recently had a laser tag birthday party where surprisingly everyone in his class that was invited showed up.

One boy at Ryan's party (a fellow friendly classmate, but not what I would call a real friend) said, "I hope Ryan and I are in the same 3rd grade class together." It just about blew me away to hear that!

But in class, these same kids aren't really his friends, if you know what I mean. They like him, and for the most part they're nice to him, but they don't include him when playing during recess, nor do they invite Ryan to b-day parties or playdates.

We just try to keep Ryan involved with the kids through activites and sports as much as we can. By doing so, Ryan receives more acceptance and understanding......we're hoping for a good friend to two.

Right now we're facing bigger hurdles with his school about his future education and placement.

 

[Hasil72]

But in class, these same kids aren't really his friends, if you know what I mean. They like him, and for the most part they're nice to him, but they don't include him when playing during recess, nor do they invite Ryan to b-day parties or playdates.

Super-mom, I'm with you. DS will be 9 next week and the topic has been coming up in conversation more frequently over the past few weeks. As he matures it becomes more apparent to him, I think, that the others find him "annoying" .

 

[disney-super-mom]

Super-mom, I'm with you. DS will be 9 next week and the topic has been coming up in conversation more frequently over the past few weeks. As he matures it becomes more apparent to him, I think, that the others find him "annoying" .

Ahhhh, well I wish I could invite you DS over for a playdate (I have a feeling that your DS and my DS would be GREAT friends), but it would be a long commute.

For our DS, as the kids get older, I don't think it's so much that they find him annoying (he's actually a pretty easy going, fairly quiet kid), they just find him "different". But the older they get, and the more they realize that others reject them for being "different", the more heartbreaking it is for us to watch. What should we do?......I just don't know. I've never been up this road before. I find that these kids (HFA kids) are in a grey area when it comes to so many things in life.

It seems as if there's A LOT of HFA kids in the country (according to the news), and yet I still feel like we're pretty much the lone ducks in our school system. It doesn't make sense.

Well, we'll just keep plugging along and keep our chins up.

 

[Hasil72]

D-S-M,

If only it weren't 3000 miles away.

 

[LuvsTinker]

Super-mom, I'm with you. DS will be 9 next week and the topic has been coming up in conversation more frequently over the past few weeks. As he matures it becomes more apparent to him, I think, that the others find him "annoying" .

Same boat here. My son will be 9 in Dec. and I think he is realizing he's different. Thankfully, it doesn't seem to usually bother him, but it may in time.

 

[Momma2dakidz]

for outside activities, talk to your instructors about setting up a special needs class. I have set up 3 so far, a baseball team, a dog training class, and a swim class.

For those kids who do not get there faces wet there needs to be motivation to try. (i will use food, play whatever works for that 1 child) before class starts we sit on the wall with a wash cloth and play. we wash our legs, we wash our bellies and we wash our chins. We then go UP our faces as the weeks progress. Honestly i have never had a child refuse this because it was highly motivating. wash an arm get swirled in the water. wash a chin get an m&m mini. put your goggles on get to jump in. its a give and take approach. look for someone who has had adaptive aquatics training.

 

[DorkyDisneyMom]

I have been trying to find a niche for my son too. Have any of you checked into 4-H? My son likes animals and rockets and learning about different things. When he starts school I think this will be something we look into. I know around here it is pretty family oriented so they don't look at you differently for joining the meetings and helping your kids.

We may try Scouts too. My husband did them and learned so much.

We have just taken up bowling. My son loves that. We just go bowling as a family for now but he loves it even if he's not very good at it.

As far as friends I don't really wait for them to call, we call them. Sometimes it's fun, other times not so much. We will see how different it will be this year though. I'm a little worried.

 

[kaffinito]

This thread really made me cry.

My oldest is about to turn 16. He's HFA, Bi-polar and ADHD. He has no friends, he has no hobbies outside of the computer, and he's flunking all of his High School classes. He does not fit in anywhere, and no amount of poking, prodding or activities when he was younger could get him to "fit in" anywhere. Even the other HFA kids in his High School don't want to hang out with him. He knows, but he really does not care if people like him or not. I'm at a my wits end with him, and am totally out of ideas.

On the flip side, the future looks a lot brighter for my 8 year old. He's only HFA and has learned to watch and copy in order to get along. He's really intelligent, and will not stop talking! He has friends where we live, and even has his first little "girlfriend." He might be ok when he's older, but sometimes I'm not sure. I taught both my kids how to swim, and am still working on the youngest. My oldest will not swim without flippers and mask.

The youngest might take boxing lessons, since it's a solitary sport, although he seems to do well at team sports too. We have t-ball and baseball in our area, and the league is willing to be flexible with Johns placement based on his ability. But we will have to see.

To all of you, here is a big from me! I know just how you all feel, and how heartbreaking it is to be the parent of an HFA child since we just want our kids to be happy, and sometimes it seems as if they never will be. I wish all of you luck and many blessings!