What would you tell the next generation

iVillage Member
Registered: 03-26-2003
What would you tell the next generation
19
Thu, 09-14-2006 - 3:47pm

Of teachers?

As I posted in the other thread I have the unique situation where I will be working on a project where teachers will be learning what it is like to be the family of a special needs person. If given the opportunity, what would you tell them about thier lives. Remember I will be using this in class so I ask your permission in advance to share the information.

Renee

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Avatar for teri_b
iVillage Member
Registered: 03-27-2003
Thu, 09-14-2006 - 4:59pm

I would tell them to LISTEN to parents. They know their child best, and if they suspect there is a problem, don't shrug them off. There's always a chance the parent is wrong, but a better chance that there IS a problem that the teacher has overlooked or blamed on something totally different.

Remind them that "disabled" doesn't mean braces/crutches/hearing aids. Invisible disabilities IMO are harder for children (and parents) to accept.

iVillage Member
Registered: 09-09-2005
Thu, 09-14-2006 - 9:20pm

Took the words out of my mouth.

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iVillage Member
Registered: 12-22-2003
Thu, 09-14-2006 - 11:14pm

GET A CLUE!

Okay...so I'm in a fowl mood, especially when it comes to DD's teacher, so that's the "nicest" thing I could come up with.

Amy

Meez 3D avatar avatars games

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Registered: 09-06-2006
Thu, 09-14-2006 - 11:14pm
I would tell the teachers to try to imagine a life full of questions. Will my child be able to make the whole day without a major meltdown? Will he be able to make a friend? Will he be able to cope with middle school or high school? Will he be able to handle a life on his own with paying bills and holding down a job? Will he find a girl that can understand him and love him? Will he ever be accepted and treated like one of the kids or will he always be the kid that acts funny? Will he always be so gullible? Will he let other kids lead him into trouble? What will happen to him when we die? Who is going to make sure that he keeps his mind on everyday life when he starts to fixate on one of his many obsessions? He gets so involved with some subjects that we have to remind him to eat,go to the bathroom,take a bath or go to bed.You never know what each day will bring.You dont know what might start to bother him today. We never know what new fear might crop up.Every day is a new and different challenge but I wouldnt trade him for any other kid in the universe. Tell the teachers to imagine a life with a unique and special child. There is nothing better than when my son tells me he loves me and that I am the best mom in the world.
Belinda
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Registered: 03-26-2003
Thu, 09-14-2006 - 11:42pm

Thank you all.

Great starts.

Now tell me a little about what your life is like as a special needs parent. How has it changed? Give me the real stuff gals. common. Don't sugar coat it.

Renee

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Registered: 12-22-2003
Thu, 09-14-2006 - 11:58pm

So much of my life is consumed by autism that it just gets so overwhelming and sometimes there's nothing else I can do, but cry. If you haven't walked in these shoes, it's impossible to fully understand how bad it hurts to see the "normal" kids playing together, laughing...in general, just being carefree kids.

Then you look at your 9 y/o son's journal which includes a missing person's poster...and it's his own face depicted in the picture. When the message reads, "I want to leave-I don't fit in anywhere" you can't help but cry.

Or when you hold your precious little girl's face and see the glazed look in her eyes- you know immediately that whatever you say won't be heard, because today is one of those days when she's in her world, not yours.

Meez 3D avatar avatars games

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Registered: 09-06-2006
Fri, 09-15-2006 - 12:28am
My dh was expecting a football star when the doctor told us we were having a boy.Our son is very clumsy very stiff and doesnt give a hoot about the rules of any game.He wants to play the game his way.WE went through the guilty feelings of what did we do that caused our son to get this.Then we grieved for the life that he would never have.It hurts so much to see the other kids grouped together and my son standing all by himself.When he comes home upset because the other kids called him names or because nobody wanted him on their team I try to comfort him then go to another room and cry.I worry about him all day long when he is at school.There is no alone time for me and my husband because there is no babysitter.Our son develops fears of things he can normally do.His last fear was of going to the movies.We had been taking him to the movies for years and suddenly he wouldnt go. He stopped swimming for a while because he was afraid a whirlpool was going to get him.These fears last from a few months to a few years.Our whole life revolves on what our son will do.We have had to cut short several vacations because he had to go home where he felt safe.Our whole life is about Aspergers .From dealing with the school to dewaling with the parents of kids that our son has scared to trying to protect him from any more hurt in his life we are all about our kid.
Belinda
Avatar for littleroses
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Registered: 03-28-2003
Fri, 09-15-2006 - 2:13am

I think relaying the fear we have is extremely important, like the others mentioned. My fear motivated me so much, it changed who I am. There is no exaggeration in that statement. I am terrified of dying even when I'm 80 cause she will be 60ish and who will take care of her then? So my hopes in a new school year are bigger than they can imagine...unless they have one themselves.

The other thing I'd emphasize is to offer solutions. If you have ideas, please share. Don't waste my time describing all the problems and telling me stuff I already know if it's just to vent. This actually stems from my experience when my oldest dd was younger, teachers scratched their heads, blamed parenting for behavior, gave me lots of roadblocks I won't go into here. And not one person ever offered me a solution other than to take away her privileges. You know, cuz I never thought of that. I had too many teachers she passed through who never offered anything other than their exhaustion with her. One teacher said she was flaky. This was true, but she didn't say that she can't follow multiple directions or make suggestions on how to overcome this classroom obstacle.

iVillage Member
Registered: 04-07-2003
Fri, 09-15-2006 - 9:29am

A big one for me in the life as a special needs parent is the social isolation. Although we have friends, they are more like friendly acquaintances. I rarely get to just go out and be with other people or have people who relate to and understand my life. If we're in group settings, or if I'm venting to a friend, I end up being judged for my parenting skills instead of being supported during a stressful time. It's already stressful and depressing being a parent of a special needs child(ren), but it magnifies the stress/depression when you cannot get any social support. Fortunately, after many years, some friends are starting to understand a bit better, but they still don't totally "get it" 'cus they don't usually see the extent of the meltdowns, obsessions, confused thinking, daily food battles, etc. This is true with family members, too. I've been an active part of my church and community all my life, but despite being surrounded by people, I have often felt very alone.

I've also had years of trying to get help for my kids where no one believed me about my kids' issues, not doctors nor friends/family. Even the more obvious problems, like chronic constipation, were ignored by the professionals. I alternated between feeling like I was a hypochondriac (sp?) and feeling like I was banging my head against a wall while trying to get help for my children. At one point even DH thought I was inventing problems. I wasn't going through all the hassle for fun. I was trying to help my children!

I worry about what will happen to my kids if I die, both because AS dh cannot care for them independently very well (he forgets to feed the kids, he has short temper, he cannot anticipate their meltdowns and head them off as well as I can, he starts fights with the kids, he doesn't know how to respond to crises well, etc), and because I fear the children will need life-long support.

Having children with poor motor skills means that going anywhere takes extra long because I have to help dress them. Until a couple of years ago, I was still helping my children latch their own car seatbelts (my kids are 3,8,10,11). In the winter, I have to help them put on/take off their winter clothing. Going out to play in the snow takes about an hour to get everyone ready, by which time the first ones dressed are either over-heated or, if they've gone out to play ahead of the rest of us, they're tired of being in the snow, and they want to come back in.

Because of their special needs and because of their lack of independence, I spend LOTS Of time taking care of my children's needs, leaving little time to participate in extra curricular activities for the kids or myself. Even my ds recent leg break has taken far more time/effort to resolve than for the average NT child. Because of ds lack of coordination and balance, he cannot use crutches, so he cannot go back to school. Because he cannot miss that much school without repercussions, the school is having us withdraw him, formally apply for homeschooling, then re-enroll him when his leg is well. I spent a couple of hours calling insurance and medical supply companies trying to find a wheelchair for ds (prescribed by orthopedist), not to mention the time spent doing paperwork to enroll ds in homeschooling. Of course there's the extra time spent carrying ds to/from the toilet since ds is not independent and will not help with his own care, including he won't use his good leg or arms to aid in his care. I have to help him to/from the bathroom, help him sit up and lie down, etc. There's the extra time spent cleaning up all the messes because ds constantly spills/breaks things etc due to poor coordination.

When 8yo ds broke leg, orthopedist could only see us if I took ds in RIGHT THEN when I called early in the a.m. I woke up 10yo NT ds, told him he'd have to get himself ready for school, make his own breakfast, make his own lunch, and get himself to school. He did just fine and even enjoyed it. There's no way I could have done that in reverse with my AS ds. He wouldn't have even gotten dressed, let alone the rest of it.

Getting children to learn to be independent and participate in chores is an uphill battle. Not only do they think that you're cruel for asking them to do chores, it takes them ten times as long to accomplish them since they have poor motor skills, planning skills, etc. It's hard to assign chores equally to NT children and AS children because NT children are much more capable, but it seems unfair to NT children to make them do more just because they are more capable.

Having moody children affects my moods and that of the whole family. One minute everything's fine, the next second, major meltdowns are occuring, even if you're doing EXACTLY what the child said they wanted.

Finances are extra tight because you're buying special foods or special clothing or extra doctor appointments/services to accommodate their needs as well as to replace all the stuff they destroy. AS dh has destroyed several expensive items (lawnmower, doors, extension cords, etc) because he doesn't have logical thinking abilities to solve problems when they occur (doesn't adjust height of lawnmower, so burns out motor; if door is stuck he pushes extra hard rather than checking to see why it's stuck and unblocking it, etc).

I also feel a great loss for the dreams I had of how my kids and I would get along and the things we'd do together to create happy family memories. Just everyday kid things like learning to ride a bike are monumental challenges for my motor-skill challenged AS kids. Simple activities like going for a walk as a family can easily end up in miserable meltdowns.

I love my kids dearly, but I have days where I resent them. Then I feel guilty about my feelings of resentment.

So far we haven't had the school battles that so many others have experienced (whew!).

Okay, this sounded like more of a vent than an informative discourse, but I'm not really having a bad day today! This is a good day. Just imagine what it would have sounded like earlier in the week when I was grumpy!!!

iVillage Member
Registered: 06-25-2003
Fri, 09-15-2006 - 12:02pm

How has my life changed?


Dude, do you have a week?

-Paula

visit my blog at www.onesickmother.com

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