When is it time to stop fighting the wheelchair question?

Dorothea - posted on 03/15/2011

Your only as crazy as another mother of a special needs child :) My son is 6, and although he uses a walker for daily use, we are looking to getting him a wheelchair for trips to the zoo and the like. You'r not giving up on him unless you stop working with him. You have to be practical. But I wouldn't get one until you need it because like someone else said, insurance only pays for them every couple of years.

Good luck!

Dorothea

Angie - posted on 02/16/2010

Definitely go with your gut - no one knows your special needs child like you do. My daughter got her Kid Kart (like a stroller) when she was 2, only because it was impossible for me to haul all of her meds, food, diaper bag and oxygen tank on a stroller. I resisted the wheelchair (which we had to go to about 2 years ago due to outgrowing the Kid Kart) until it was absolutely necessary - and it wasn't because I was in denial, I realize that just the fact that she's alive is a miracle. I know that she will probably never walk, talk or progress much past a 12-15 month developmental level even though she's 8 now. I was also concerned that once my daughter was put in a wheelchair, that she wouldn't get the interaction she needed, because she would be "stuck" there while in school. Well, I'll tell you, as she's gotten older, she's developed a very strong personality and knows what she likes and dislikes - and her wheelchair is definitely a dislike! We use it to get her on the bus to go to school and to get from place to place (like clinic appts) when carrying her would be impossible. At home, we park the chair by the door after school and we carry her around the house. She's currently about 45 lbs and 48 inches long, so carrying her is no easy task, but she loves the contact and, to be honest, so do we. My daughter has learned to move and get around the house by rolling, crawling and scooting, and I don't think those are things she would have done had we used the chair as we were instructed by her therapist. No matter what you choose, always remember, you are the only advocate for your child - You, as a parent, truly have his needs first and foremost in your decisions! Good luck!

Calley - posted on 01/18/2010

Thanks everyone for your comments on this subject. My daughter turned 2 in October and we were pushed about a wheelchair back before that even! I couldn't fathom the neccessity of it at that point, nor now. She is globally delayed and has quadriplegic CP, mostly in the legs. She currently weighs 24 lbs. She is long and skinny, and is learning to help hold on to me. She's scoot/crawling all around the house now and sits in a W position on her own. Our Early Access program only goes to the age of 3, then they can go into the schools for pre-k to work with kids. We weren't really planning on having her go to school that early. We didn't even send our other two kids that early.

My gut tells me its too early for a wheelchair and so I've been fairly confident in avoiding those who push it at us, but it is an emotional decision as well as a logical one.

I appreciate the advice you've all given. It is nice to hear from parents who've been through all of this already. We finally had a Dr. willing to tell us that her progress so far is an indication that she'll one day walk! I know it might be a long time, but it seems silly to not push for her to walk when its truly a possibility. Wish the PT's would read all these comments on here and see how much this decision really affects us as parents.

Anne - posted on 01/17/2010

I always think you should follow your instincts, they have served you well in the passed and will continue to do so. Could you not have a discussion with OT'S,Physio,and his Dr's to get a full picture of what they feel about you getting a wheel chair for you child? and there reason once you have all the facts you can then make an informed choose for your child. What reasons do the teachers have for saying he needs to have a wheel chair for the next class? for who's will benifit the most from him useing a chair? how will this affect his independence? what will it do to his muscle tone that he has built up?
Good luck to you all

Heather - posted on 01/16/2010

My PT is trying for us to get my daughter a chair too. I really dont want to because I dont want her to depend on it, but I do want her to be more independant. She is going to be 4 next week and is about 38 lbs of dead weight. She was a kid cart for going on the bus for pre-k, but dont really use it more than that. She dont like it. She uses her walker (the Gator) and is getting pretty good at it but not for long distances. I just dont know what to do.

Silvia - posted on 01/16/2010

Don't think of the wheelchair as a bad thing.It is the safest way for your child to be transported on a school bus.You should check with the public school districs inyour area , I'm from Texas, and the school district provide you with a presentation of the resources and curriculum provided at each school.They include PT,OT, SP and visual impairment therapy if ordered by doctors.If they don't satisfy your medical and educational demands as ordered by your doctor, you can contact the school district super intendent, so they can accomadate for your childs needs.It is the law.they can get fined.or you can choose a different school.It doesn't even have to be the closest school.they will pick him up.My daughter had a severe hemarrage a year ago that has left her, unable to walk or sit up without tipping over among other multiple disabilities.She is 30 pounds and getting her Kid Kart has helped her tremedously.It looks almost like a stroller but has all the trunk and head support, plus great wheels .you can even go running with it.before the kidcart, we worried she would continue hunching over to her right side and develop scoliosis.6 months later, her trunk is straight. Sure she still tips over, but now it is not as fast and she is not rigid and leaned over.i got it thru All-Star Medical in San Antonio Texas.Ask for David, he is a very nice Christian man. He measure my Charisma and even loaned me one while insurance went thru. made by A.R.T. group. It is called the Kid Kart Xpress. It fits behind my back seat of my minivan without folding.Or I can break it down and put it in other people's trunks.I even put it in the back seat of a mustang once.QAlso Ask your school district if he can go to school in gate trainer, if drop him off,or if you bring kid kart/ wheelchair just to transport him and use gate trainer in class.

Kiyomi - posted on 01/16/2010

our pt told us we have till hes about 5 or 6 before the chances of him walking are gone... so iono i wouldnt give up

Mairead - posted on 01/16/2010

only you know whats best for your child i use to listen to all the proffessionals about my daughter but i followed my own instincts and got the chair but she uses a walker now because sometimes they need less exersion and so do you aslong as you keep doing pt on them while they are in the chair they wont lose any muscle tone

Krystal - posted on 01/15/2010

We have a wheelchair/stroller... We use it for transpotation on the bus to school, and is a back-up for our normal strollers ( I say back-up because it's so heavy I prefer not to lift it in and out of our truck!) He doesn't spend a much time in it, but it will fit him much longer than our other strollers, does provide good support and is safe and easier to transport to and from school!

Andrea - posted on 01/15/2010

No you are not.... We waited until our son was almost 5 to get him a wheelchair. Follow your gut and what you think is best for your situation!

Alicia - posted on 01/14/2010

I had the same question! My daughter is almost 7, and I didn't get her a chair till she didn't fit in her stroller anymore. She is 40lbs and 38 inches. I still carry her (she can crawl) but she gets heavy. She only uses the chair to ride the bus to and from school and at dinner time. At school she sits in it at "table time" and the staff helps her in a box chair for circle time. My daughter has a gait trainer too, and does quite well, she has hamstring shortening so her legs aren't quite straight. As far as wheelchair vs. stroller...strollers are easier to get in and out of the car! Good luck, hope this was helpful!

Teresa - posted on 01/12/2010

My daughter is 17. I used a stroller until I absolutely could not anymore, then transitioned to an adaptive stroller (around the age of 7). I used that until she was 15 (she's fairly small-framed) and finally got the wheelchair. However, I use it only for shopping/vacation, etc. I don't use it around the house. I'll stand her up to walk w/my assistance or let her scoot or (more infrequently) knee-walk in smaller areas.

Will your son have an IEP (Individualized Education Plan) at the state's preschool program (if this is in the U.S. then he should)? If so, you can stipulate within that IEP the useage amount--IN DETAIL--for his "wheels" and their failure to comply would be against the law. IEPs are legal documents...they must be adhered to.

I've learned that our "mother guts" rarely fail us. If we have all the info in front of us and we've weighed all options, we truly can trust our instinct. Heck, we can trust our instincts even if we have NO info.

I'd be happy to help you more if you'd like. While some laws change state to state there are federal regulations. (I'm in Virginia, btw) I'm also very astute at researching---have had about 10 years experience in that due to necessity!

Hope this helped. You sound like a great mom, Brandee. Your son is blessed indeed.

Patty - posted on 01/12/2010

I got adale chair as soon as I could. I leave her loose to roam the floor at home but the chair gave her another outlet of movement. Her legs have never turned correctly or gained the muscle they should have. At two years old the chair gave me a safety zone for her in public. It held her up at tables and kept her off the floor in places where who knows what is on the floor. The pads in the chair are orthopedically correct and helped too shape her back and teach her mucsles how to set properly. Every mother has to make decisions on their hopes and fears. I make mine based on the fact that the chair granted me a little more peace when leaving her somewhere other than home.

Donna - posted on 01/07/2010

the ng tube was a good idea in my opinion, we were forced to have a mickey buttton put in our son when he was 16 months old our son eats very little by mouth now due to misshaps with the feeding tube. as for the wheelchair ur son will let u no when it is time to really start requesting one but i would keep him in a stroller as long as possible because this is a normal thing it doesnt alienate him or u plus strollers are alot easier to store and lift even the smallest wheelchairs are heavy and bulky, i think chase was around 4 when we got his first one and i put it in a corner for a long time the only time he used it was when he was at school. good luck

Jamie - posted on 01/05/2010

i totally understand being i have had the same thoughts on my mind. my son had a stroke while still in the womb. he is now a little over 2 and doesnt crawl or walk yet. i too feel that a wheel chair at this point would feel like giving up so i still carry him everywhere or use a regular stroller. the point is, you are his mom and know whats best for him. dont let anyone pressure you into a decision you dont agree with.

Jill - posted on 01/02/2010

We got my daughter's 1st wheelchair when she was about 2 yrs. old. My husband had a hard time with it because once we were in public there was no denying the disability. But I enjoyed the ability to take her anywhere without all the carrying. They do have wheelchairs now that look more like strollers so that may be a good transition option for you. We still carried her alot and her PT at the time kept saying she needed to spend more time in the chair but we ignored that advice. She is 15 now and we still hold her and put her in other seating options besides the chair. She has CP and plays baseball, enjoys swimming, goes camping with girl scouts, etc. Just because they have a wheelchair does not mean they have to be in it all day! It just allows you to be more active with them in the community.

Amber - posted on 12/31/2009

I'm not sure if you are aware of this or not, but you can get a nurse aide or home health aide to work with your child in school. If he does attend a program like Early Intervention or Head Start, they can go to school and stay with him all day. Also, you can get an iep with EI prek, and you can specify when he is to use a wheelchair or stroller, and when he is to be on the floor or whatever. A lot of schools don't make parents aware of this, but if you contact the Special Needs Dept. in your local school district they can help, and tell you what to do. Just an FYI too..the nursing agency you choose, will need a letter with your child's dx's, and then they will set up a meeting with you and your child to see all that youir child will need, to decide if an aide or nurse is better, then it takes 30 days for all of the paperwork and insurance to make a decision as to if they will pay, if they refuse, it's an easy appeal that you will most likely win.

Kathy - posted on 12/30/2009

I have an 8 yr old with mild CP but has also had 2 surgeries for tethered cord. She has 'bad' days when she falls often. I finally broke down and purchased a Tiger 2000 chair when she was 4. Prior to that she was in a pram type stroller which she loved because I could take the front bar off and she could climb in and out when she needed too. When we did get the wheel chair for her she preferred that to the stroller. It supported her frame much better and was much more comfortable. She uses it in the house to sit at the table, sit at the computer and when we go to the mall or shopping trips as her legs get very tired. We have taken it to school on her bad days and her friends totally help her!! They take turns pushing her where she needs to go and actually gets more attention at times. If children see others in the wheel chair early on, they become much more accepting of them later on in school. We learned that from her braces which she wears on her legs. Her friends that have gone through school with her so far know she wears them sometimes and don't even question. They have even stood up for her when other kids make fun of them! Start early, but like many others had said, you know what's best!

Terry - posted on 12/22/2009

My daughter is 2 1/2 and has CP. She can't walk, talk or sit up unassisted. I just got a "BINGO" kid cart. She is almost 30lbs and 33" tall. She is heavy to carry around. I love the new cart. We don't use it around the house much but when we go out places it is great to get her around in. Just because u get a wheel chair doesn't mean u gave up on him. U can still let him get around himself at home. He doesn't have to be in it all the time. Also, if he is postioned good in a regular stroller I say u can just keep using it. If he isn't in good postioning maybe a wheel chair is the way to go. I hope this helps u! good luck
Terry

Vidia - posted on 12/21/2009

Hi Brandee: You are your son's voice and "NO ONE know him more than you " just always remember that .
My son Michael is 23 and at the age of yours I was told that he may not walk or talk....He prove them wrong ,the wheelchair was something that we really don't have to deal with it till about 4 years ago that he had his second back surgery and affect his walking,he can walk with help, but he get tired and that is way we have it and off course is not easy caring 80 pounds around .
The wheelchair it will be good for him that way he don't get to tired,but you decide because like I said before you know him better ,give him a wheelchair don't mean that you are giving up on him at all ,but they are big strollers that will help for him and about the place and how active you want him to be, you have to get really on top of the program at the place where he is going .Michael was going to the special school(from the state) till he turn 21 over there he had PT and OT,speech and they will work with us and the drs. for all his needs.The program was adapted for his needs and to improve all the areas where he was delayed. It got to be like our second family and for him his second home,he was active and always being taking care off. When it come to the program you and your son's drs. have everything to say and tell them how is going to be done .
And I'm really proud of how you took your son out of a program that you as the mom knew it wasn't the best for him. I just have to fight some GI drs. about the same thing with a NG tube for Michael because they decide that that was the only way to make him gain weight ,we prove then wrong AGAIN ,he gain with out it and he love eating ,that is one thing that I will not take away from him .
Brandee, you are doing a great job know what battles to pick and fighting for him.
Never feel that you are making a mistake talk with your drs and the therapists and the people around your child,don't let anyone tell you that you are doing wrong because you are being careful and you want all the"Bases cover"before you decide .
I hope it help a little and remember "you know him best "and "no dr is God",listen and learn from him to . I learn to see life trough Michael's eyes an I got to learn a lot about people around me and got closer to God in faith (not going to church and preaching in excess)but looking life in a different way .
If you ever need to talk or want to talk let me know and I can give you me # ,I know how hard is to fight CP ,we have being doing it for 20 years .
May God bless you and your family always .......
Hopefully your new friend ...... Vidia

Angelia - posted on 12/21/2009

Hi my name is Angelia I have a son with Angelmans Syndrome he is 4 now and when he was 2 I had to make that same decision .To put him in a wheelchair or not.With his syndrome he might walk some day I felt if I put him in a wheelchair am I giving up hope that he would not walk.I decided to get a wheelchair it has helped him in seating up straight he gets on the bus in his chair.A lot of my family didnt want me to put him in a wheelchair but I thank I made a good choose.What ever choose you make you know are sons will one day walk I will be praying for your sons complete healing.

Brandee - posted on 12/20/2009

Thank you Ladies, I appreciate the input. I guess I just still feel lost in all this, like my therapists all know he won't be walking anytime soon and they are just afraid to tell me. thanks for the tips- names of strollers/chairs, it will give me some things to check on... :)

Jodie - posted on 12/09/2009

My Rylee has a rare chromosone disorder as well as other medical probs.Like your little fella he scoots around on his bottom. Rylee was about 3 to 3 and half when we asked about a wheelchair as we didn't want him going to kindy in a pram or stroller. We have never given up on the hope of Rylee walking and work very close with his teacher etc. We are currently waiting for Rylee's first walking frame to arrive and we are very please with his progress.
Please don't think you are being crazy as all you are doing is wanting the best for your child and Im sure he loves you for it .
best of luck jodie

Terry - posted on 12/09/2009

we carried my daughter Destinie till she was around 4 then we used a special needs stroller till about 8.

Marlene - posted on 12/08/2009

No chair.... why? to make it easier for the school? Your child is more important than the convenience of the school, maybe look at a school that is more accomodating.



Leave him on the floor... he has more chance for improvement that way than stuck in a chair. My son hates his chair as it restricts his movements. (My son is 10 and completely unable to walk, but can sit and roll around).



Keep to the stroller for as long as possible.

Always go with your gut... you know him best. :)

Emma-Leigh - posted on 12/07/2009

My son is 2. He has CP, spastic quadriplegia, is globally delayed and is dead weight. We have just gotten his first chair - a Leckey Squiggles by Otto Bock. It will grow with him until he's about 5. It has an inside base and a stroller base. It's great as it allows him to sit at the table with us in a really well supported manner. It has a removable tray for playing and drawing. The inside base drops down so that he can sit close to the floor to play with his siblings.
We didn't want to get a wheelchair but seeing him able to sit easily and interact is fantastic. He thinks it's great - he smiles and sings when he's in it. We don't have him in it all day. We think it's important to have play time on the floor and the trampoline etc. It's a hard decision. You have to do the best that you can for your boy within your means and limitations. Good luck.

Stefanie - posted on 12/07/2009

My son will be 3 in February. I am undecided on sending him to school at this point. I was highly against it in the beginning due to the fact that he could not walk. He has private PT and also ECI (early intervention). ECI told me that he could not go to school unless he had a wheelchair and that it was time to order one. At that point I made my mind up that he was not going to the 3 yr program. I just couldnt order my 2 yr old a wheelchair. I then decided to ask people that was familiar with the program if they knew if it was required. I then called the school. She said its not required. Have you asked the school? He would need one if he was going to ride the bus or need an adaptive stroller. But since he wont be riding the bus, I can just bring a umbrella stroller in case there was a fire etc. I can live with that.

Heather - posted on 12/07/2009

Trust your gut. My son is 5 1/2 yrs old. We got a Tiger 2000 wheelchair/stroller combo and barely use it. We have a gait trainer as well, and Maclaren stroller
http://cgi.ebay.com/Maclaren-Major-Elite...
We brine the 2 back and forth from school, and he also has a special chair at school. Go with what works for you, not what they want.

Heather - posted on 12/07/2009

Hi Bradee! I went through the same dilemma with my son who has CP & is globally delayed. The question to ask yourself now is does the regular stroller still suit his & your requirements right now, as far as supporting him with good posture, and not being too heavy to manuever easily with him in it. If so, hold off on the chair as long as you can, until he needs it for school. Insurance will only replace it every so often (mine is 4-5 yrs), so definitely find one that adjusts for growth. We have an Easy Rider, and love it. It does fold fairly easily, and fits well in the back of my minivan. And you don't have to use it all the time either. We use ours when we go to the mall, park, long walks, etc., and take him out of it whenever possible at our destination. Good luck!

Sarah - posted on 12/07/2009

We finally got one for my son when he turned 4 the reason being he is around 40 lbs, and cannot walk. We wanted him to be transported on the bus to and from school, and he needed to have a chair with tie downs. We got him one called the "bingo"..it is a larger version of a stroller....canopy included and looks less like a wheel chair. It will grow with him until around 100 lbs or so..the only bad thing is that it does not fold down like a regular stroller and is large and bulky. I drive a Suburban and can barely get it in the back. We use it for him if we decide to go on walks, or to the library, or when going to school. When he is home I refuse to limit him to his chair, and do not put him in it unless..we are coloring or having a snack..his comes with a removable tray as well. I think they can be handy...and I like the fact that there are allot of them out there that look less like a wheel chair. Just be aware as your child ages they may not be able to walk, and are going to get larger and weigh more. They need us to be able to help them, and don't need us to be pulling out our backs while lifting them. I think that for me its been a good thing...I hate this term..but gonna use it to explain my son does not hold his body upright and is "dead weight" as they like to say, he tends to twist or move in odd directions when you pick him up and I have hurt my back from him doing that. My older daughter who is not a special needs child was often carried but knew how to help balance and support her own weight..which my son does not do....anyways I you should do what is best for you and your family. I may also recommend looking at the "B.O.B revolution" strollers online, I bought one for my son for his last birthday..they hold more weight than a regular stroller and are amazing..they turn, are extremely easy to fold....are light weight.but very well built. They are expensive but for my money I wouldn't trade this stroller..even with 40lbs in it you can push it with a few fingers..I love it! Anyways check them out when you get a chance, and if you decide to get your child a chair research them and make sure you get one that meets your childs needs and yours..Love to you and your family

Elaine - posted on 12/07/2009

Hi ... i just want to say... to you and all moms use the chair as needed but when Keith was younger i had him on the floor and moving as much as he could on his own RANG OF MOTION IS IMPORTANT if your child is not out of it enough they can get contratures from sitting all the time... make sure they are out of the chair as much as possible... I had knee pads and skate boards with boxes so he could move his cars from one room to the next.... and when it comes to the chair check your insh for how often they will give you a new one and pick one that will grow with your childs needs.... best wishes for you

Libby - posted on 12/07/2009

Brandee, you ask the same question I have. Our stories sound very similar. My daughter just turned 2, weighs nearly 30 lbs and is 33" tall. A big girl to carry around! But it seems natural to me...I remember carrying my now 6 year old daughter some even when she was four! My daughter is using a gait trainer quite well, but does not pull to stand and she rolls to get places she wants to go. I totally understand. At what point are you limiting your child and at what point are you hindering your child. Only one of the many lines I walk each day. My daughter has a mitochondrial disease and is globally delayed. You are not crazy, but I don't really have an answer either, as I am fighting this same battle in my mind. I am eager to hear replies from anyone who has struggled with this issue in the past and how they handled it. Thanks for sharing your story. Though I feel so isolated, we are not alone.