OT- vent: Saying "no you cant ___"

[Forevryoung]

I guess it is not so OT because when we go to Disney it will pertain to Disney.

I am going with a 10 year old to Disney in June. She has CP, she uses a scooter, she can transfer as long as we can pick her up and put her in the seat. She is also getting heavier (weighs about 70lbs).

I am soooooo tired of hearing her mom say "no you cant ___" because she is either too lazy to do it or because she just doesnt think about it first. I know that it is very different to be a parent of a disabled child (and I dont have children to begin with) but wouldnt your first thought be "I can do ___ to insure that my child enjoys what she wants to". Today we were at a birthday party for their cousin and the thing for the kids to do was a moonbounce and basketball. The first thing the mom said when we got there was "dont even ask to go in the moonbounce, there are too many children and I dont want you getting hurt". Of course since that was pretty much the only thing she could even think about doing she started to cry and then her mom got angry at her for crying and told her that she just needs to "get used to these things and stop crying". I was almost crying myself. It was pretty easy to clear the moonbounce out for a few minutes and stick Chris in there- I eventually did it but why does her mom have to say no first? I am afraid that this will happen in Disney because her Mom doesnt think first and ruin a very good time for her.

Any thoughts on the subject? How do other parents handle these situations? Am I just overreacting and she really does just need to learn how to deal with these things?

 

[lovespoohbear]

I am kind of in the same boat your friend is in. I am 24 years old and in a chair. My mom says you know you can't do ____. She is even saying that about me riding rides at Disney and I have been researching the disability side of disney for about 2 years now and I tell her there are some rides I can, some I can't, and some ill have to figure out when I get there. I have realized my mom is just trying to keep my feet grounded and she doesn't want me to get disappointed when I can't do something I thought I could. Your friends mom might be trying to not be bothered with helping her or trying to tell her the hard way (which it has taken me a long time to realize my mom was doing it the hard way) that she might not be able to do everything she wants to. I hope I have helped some.

 

[Michigan]

I am the total oposite, I tell my kids there isn't anything you can't do except walk. Because of that my oldest one has climbed a rock wall, downhill skied in a mono ski, joined the high school swim team (and even got her varsity letter), participated in track and field events along with her sister that also has spina bifida. Just yesterday Michaela (the 7 year old) got first place medels in softball throw, soft discus, turbo javelin, shot put, 60m, 100m, 200m and 400m track. Megan (the 15 year old) got first place swimming in 50 free, 100 free, 50 back, shot put, discus, javelin, 100m, 200m and 400m track. At the banquet Megan was named the most valuable junior female athlete.

Every year at vacation bible school they have a moonwalker and my kids have always done it. The people running it have some of the kids come out so they can go in and they have a blast.

First thing I would do is get her out of a scooter and into a wheelchair. If she needs power then a power chair but not a scooter. I would also look for a disabled sports team in the area and put her it it. She can play soccer, hockey or boccie from a power chair. From a manual chair the possibilities are unlimited. If you can play it walking you can do it from a manual chair. I can not begin to tell you the self esteem that is gained from participating in sports. Not only are my kids in sports but I also coach the disabled team with athletes from 7 to 58 and the adults take just as much pride in their acomplishments as the kids do.

 

[LindsayDunn228]

Michigan,

Not every disabled kid enjoys wheelchair sports. I have been in a chair since I was 6. I tried wheelchair basketball and such and it was a waste of time. I found it to be humiliating.

My point is, this child can be quite active from her chair w/o having to become a part of wheelchair sports. I know it was just a suggestion, but speaking as someone who has heard it a million times, it gets old.

Not flaming you, just sharing some thoughts.

 

[Talking Hands]

I think everyone is missing the point here. This is not her child. She needs to convince the mother that the child can do things and should not be over protected for fear of injuery or hurt feeling. That is not always easy to do. Hopefully some of you can come up with advice that is more to the issue of convining Mom that her child can participate in more things than she is allowing

 

[Michigan]

LindsayDunn228 did you ever try anything other then basketball? Basketball has to be the hardest thing you could have tried because the basket is 8 feet for a junior.

Don't count sports out, there is swimming, track, field, water skiing, snow skiing, handcycling, tennis, table tennis, archery, vollyball, softball, soccer, billards, air gun, sled hockey and now there is even wheelchair football.

I just think that a parent that tells their child they can't without having any idea of what is out there that her child can do is making that child have a low self image. Foreveryoung if you PM me where you live I can give you some suggestions of where to go with the girl's mother to see what someone with a disability can do.

 

[LindsayDunn228]

Michigan, I tried a few things. Basketball wasn't hard for me. I am a very strong person and was able to make baskets fine. It was the other players that caused problems. That's why I said it was embarassing.

Believe me, I have been in a wheelchair long enough to know what's out there as far as sports. I myself swim, play raquetball, and a few other things. I don't count sports out.

One thing to be aware of. This is NOT the OP's child. She needs to be careful where she treads. Advice may not be wanted and she may lose a friend if she pushes too much. Granted, she is correct. The mother needs to let her child try new things. If the child is too heavy for her to lift onto rides, which I completely understand, she needs to bring along someone who can help.

If the child can manage in a manual chair, she needs to get one ASAP. If not, get a power chair. She does NOT need to be in a scooter.

 

[minkydog]

Its so sad to hear a mother with a "You can't" attitude. How can a child ever have hope for independence when his mother clearly does not believe in him?

Ever since my son was 2yo and the doctor said,"he'll never walk, talk, eat, run, play, be like other kids,etc,etc" I vowed that I would do my best to accomodate my son to have the best life possible. I pushed him hard, especially in his early years, and there were many failures(skating didn't work so well.) But there is usually some way for him to particiapte if I just think outside the box, and if I'm willing to put forth some effort.

I don't know if you can talk candidly with this girl's mother. It seems to me that she is actually as big a handicap to her as the CP is. Maybe mom is afraid to let her child fail or get embarrassed. Mom may also be depressed, which would make it difficult for her to produce the energy required to help her daughter. Perhaps you can be a mentor for this child, if mom would agree.

Every child needs someone who believes they can and they will. Be that person.

 

[Forevryoung]

Well out of the scooter is a different pet peeve (can you tell I dont like the mentality of the parents? ) She has a powerchair but it cant fit in the car because they refuse to get an accessible van ("too expensive"). Up until a few months ago she was still in a stroller when she wasnt in the house or at school. That was pathetic (sorry, I know sometimes its appropriate and necessary but definitely never the case for her). She should have had a powerchair from the time she was very young. The scooter at least gives her some freedom thank G-d. According to them, she will be using the scooter until shes a teenager because "it can grow with her". Sometimes I just have to keep my mouth shut.

I have known them for 5 years and I am considered family, an older sister/daughter to them which is why I have no problems sticking my $.02 in. Sometimes advice is not asked for but I state my mind anyway. I have to stick up for what I feel is right. Just like yesterday with the "you cant", I always tell her that she can and I make it possible.

The mother has created a situation where her daughter is nearly 100% dependent on others. She has pretty much removed all independence. They built a new house and never figured out a way to have the little girl be able to open the door. She has to ring the doorbell and know that someone will open the door for her. She is dependent on someone taking her to the bathroom because the toilet seat is too high (yes they make lower ones). At 10 years old she wants her privacy.

The reason I am going to Disney is to help out. There is no way that they would be able to manage without me. I will put her on every single ride she wants to go on no questions asked. I wanted so badly to have them picked up in an accessible van and taken to the airport and stayed onsite so that she could have her powerchair. That idea was vetoed because they thought it would be too expensive so they are driving. And she will be in the scooter.

They live in North Carolina now but I will try to get her to look into sports. I met them through a swim program. She loves to swim and shes pretty good at it but one side is weaker than the other and she has trouble keeping her head up when shes swimming. She spends all summer in the pool. She likes sports but nobody has ever made it so she can really play. I am going to try and get her mom to look into it. Thanks guys-

 

[Cheshire Figment]

I am chiming in here because JudySue was abused as a child, both mentally and physically. Her relationships with her family were so bad that several months before she died she made me promise to never make any attempt to contact her family about her death.

What you are describing is, in my opinion, child abuse. Maybe there is none physically, but she is definitely being abused mentally. If you are in a large metropolitan area it might be worth contact the Family Services people, or her doctors, and let them know what is going on.

 

[roseprincess]

Just curious, is the 10yr. old girl's mom divorced? If she is or widowed, maybe the mom has resentment that her husband left her or maybe the mom has resentment that her dd is disabled? I haven't seen anything written here about the dad.
I don't think it is right, either that the mom had a new house built, but can't afford to get a power chair for her dd? Even if insurance can cover part of it?
Even a toilet seat she can use?

Does the mom have other kids or is dd her only child?

Forevryoung, that's great you are being a positive support for this girl. You are a saint to be helping out this girl and family and being this girl's advocate!

I do hope things do get better for this girl in the future as of the mother/ daughter relationship.

Rosemarie

 

[Forevryoung]

Ok to answer questions:

Dad is in the picture. They are married but he isnt the most supportive person in the world. Maybe he is and he just keeps his mouth shut because he knows he cant win against his wife. Secondly, she has a powerchair but it cant be taken in the van. She uses it at home and at school. She got it a few years ago. There is an older sister (shes two years older) involved. There are issues there too but at least she stands up for herself. I finally got them to agree that therapy is necessary.

The toilet seat is on my list of things wrong with this house. The house makes me very angry. They built a TWO STORY house. Yep, put stairs in and everything because thats the way the houses in the development are built (thats the excuse). Not only that but the school district sucks. They came from NY where the sd was amazing, services provided every day (shes in a reg classroom) and now she gets PT twice a week and OT once a week. Not appropriate for a 10 year old with potential. When she was first evaluated I found in her IEP (by her PT) "limited services reccommended because she has CP which means that she wont get any better". I flipped my top and made sure it was taken care of.

About the "abuse"- her mother truely feels that she is doing the best she can. I dont mean to step on toes but part of the reason is education. The parents are uneducated and are too stubborn to truely think. They have never had much money either and what they do have they make poor choices with. Unfortunately, money has become their biggest factor for every choice they have ever made. This has created a situation where their choices arent driven by what is best for their daughter but what they can afford right this minute. Like the house, they figured they would put a lift in in a few years (instead of getting a house without stairs or putting one in before the house was finished) or why spend the money on the van now, they got her the scooter instead. There was a car accident a few years ago and they had to get a new van anyway so I was excited that they might consider a van that the power chair could fit in but nope, it would have been an extra $10-15,000 to make it work. They refused to look into it anymore. Or the Disney trip. It's been promised for the past 5 years but money was always the issue. It still is, after 5 years they still havent saved up the money and are doing it as cheap as they can get away with (this is more than budgeted).

I am not a saint, I just found the right place to vent. I want her to come live with me as soon as she's out of high school. Maybe she can spend summers with me. Thanks guys for understanding

 

[Talking Hands]

Ok to answer questions:
Not only that but the school district sucks. They came from NY where the sd was amazing, services provided every day (shes in a reg classroom) and now she gets PT twice a week and OT once a week. Not appropriate for a 10 year old with potential. When she was first evaluated I found in her IEP (by her PT) "limited services reccommended because she has CP which means that she wont get any better". I flipped my top and made sure it was taken care of.

I wouldn't necessarily say that the school district sucks. Any school district will try to provide as little therapy as they can get away with. Parents need to advocate and insist on more. CP means she won't get better. Nonsense! I have seen kids go from wheelchair to walker with therapy. If she just gets so she can stand and get on a toilet herself it is an improvement. How does she use the toilet in school. Does she have a fulltime aide to assist her? A computer to take notes and write papers? is she forced to sit in the wheelchair all day at school or is she transferred to a special seat for part of the day. I can think of so many things depending on the child. But advocacy is a must!

 

[Michigan]

If they don't want to pay the additional cost to make their van accessible which by the way mine only cost $7,000 more and I have a rear automatic lift and automatic doors one easy lock tie down and one 4 point tie down. Not that much when you consider your kids independence and the fact that you don't have to lift a chair up and down.

Since she has to transfer into a seat in the van now why don't they buy portable ramps and put the power chair in the van that way? Here is a link to a cheap pair on ebay.
http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&category=75067&item=5577445699&rd=1

 

[Forevryoung]

Michigan, thanks, Ill show it to them. I dont know if the chair itself is too big for the back of their van (or too heavy).

Fine, in a school district if nobody says the child requires services it doesnt matter how much you say the child does. The district itself is lazy. She is entitled to resource room 10 sessions a week. She hasnt gotten all 10 all year. The teacher has meetings, is sick, is doing a make up with another student, standardized testing... She is going to the state about that I believe because the records the school has are not accurate. She has been keeping track. I stopped trying to fight with their school district. It's just too far away with them in NC and me in Md. Better attack the homefront where I have some pull

Thanks guys

 

[MommytoMJM]

I have a child who is "functional enough" according to the schools, Dr's , etc...so I know what you mean. I don't accept that diagnosis either....

As far as you can't...even tho my dd is only 4, I try never to say you can't.....that said, dad is much less over protective than me so if it is something I am scared for her to do I let him take her. He is a very involved daddy tho. MJ goes on darn near everything at WDW.....

Please let me know if I can help via email, IM, PM or when you are here (we are local and at the parks a lot)

 

[Talking Hands]

I have a child who is "functional enough" according to the schools, Dr's , etc...so I know what you mean. I don't accept that diagnosis either....

Fight them! Get an advocate. In Florida the squeaky wheel gets the attention. You know what is best for your child. What is functional enough? And who is to say? Functional enough to me is fully able to do and participate in everything with absolutely no restriction or help.

 

[Talking Hands]

Michigan, thanks, Ill show it to them. I dont know if the chair itself is too big for the back of their van (or too heavy).

I have a Jazzy 1103 and it goes in the back of my mini-van just fine. A student at the high school I a work at also has a min-van and his electric wheelchair isn't too heavy either. He uses a ramp system after moving his son to the seat and he is not a small child but a hefty young man over to 150 pounds.

 

[Forevryoung]

I will talk to the mother again. There is only so much I can suggest and it seems that most things just overwhelm her. Like Disney, she hasnt look through one site I have given her a link to nor has she read either of the books I bought for her last year for Christmas (when I thought we were going last year). Thats why I am betting she wont read this site... and if she does, I love her dearly and I love her family but it upsets me to not be able to change what I feel is right.

 

[MommytoMJM]

Fight them! Get an advocate. In Florida the squeaky wheel gets the attention. You know what is best for your child. What is functional enough? And who is to say? Functional enough to me is fully able to do and participate in everything with absolutely no restriction or help.

I'm trying to find one, it sure is a lot harder here in FL then it was in CA....sigh....