Tuesday, July 2, 2013

"10 year old boys who don't walk, use wheelchairs NOT strollers!!"

Get him a custom rigid frame wheelchair from like tilite or something A STROLLER IS THE MOST degrading thing you can have him in, I understand he doesnt want to walk, fine, get him a wheelchair, 10 year old boys who dont walk, use wheelchairs NOT strollers !! a custom rigid frame chair cost just as much as a damn stroller

 I am against pushing '' age appropriate'' for the most part, but a person mobility should be appropriate a stroller degrades him and the rest of the autistic / DD community because of the image it forms


I'm moderately autistic and I'm DD delayed too, and I play toys and stuff too, but I'll be damned if I ride in a stroller and even his peers ( us) cannot socialize with him if he is sitting in a stroller ) he needs peer friends others who are dd / autistic, because we can communicate with each other, we have a language and our own ways and we can connect interact and communicate in many ways ;-)

just get him a wheelchair please

Thank you for being concerned. Thank you for taking an interest in Alex and fighting for his right to dignity. ...but it's not necessary in this case.

One of the things with Medicaid is you don't get much of a choice. You get what you get and you be thankful for it. Also, Medicaid denied anything- wheelchair or stroller- for Alex because what he needs is nothing a commercial stroller (baby stroller) can't do so this one was given to us for free by a dear friend who's son had outgrown it. (seriously, Lady, I can't thank you enough.)

His stroller IS a wheelchair according to the site it's sold on- http://www.convaid.com/metro-special-needs-stroller-metro-transport-stroller-c-1_19_20-l-en.html but from what I understand, the difference between something being called a wheel chair and something being called a stroller is the rigidity/style of the seat and the size of the wheels. If that is the case, a stroller is exactly what he needs.

The Tilite you recommend looks very nice, however, being on the spectrum yourself, I'm sure you understand sensory needs. Alex needs to feel secure, held, safe. He has proprioceptive issues that make even sitting in a kitchen chair uncomfortable. He needs bilateral supports. He needs the high back. he needs fabric that will mold to his body, touching as much as possible to tell him the chair is there. He needs a place to rest his feet to ground him. With motor planning issues, he needs a seatbelt to let him know when to stay seated. and then you have the need to touch spinning objects which would have his fingers exploring the wheels as we roll... you can imagine how that would play out. I don't like holding his hands to keep him from grabbing, that is degrading.

Alex's needs outrank anyone else's opinion.

I don't want to say that Alex is spoiled because he's not bratty in the least little bit but Alex gets what Alex wants. He walks when he wants to walk, he sits when he wants to sit, we roam where he wants to roam and most of the time I am following his lead. We tried the wheel chairs at Wal-Mart and he hated it. He cried every time. He resisted going in, he tried to get out. In his stroller, he is calm. content. He enjoys being free to sit back comfortably and appreciate what is going on around him. If he objected to using the stroller, we would find something he found more suitable... but he doesn't.

Alex isn't interested in interacting with most people, autistic or not. He says hi and you might get a hug but then he wants you to get the hell away from him so he can keep doing what he wants to do. If being in a wheel chair or a stroller makes someone think less of him or not want to interact with him... that's their problem and they aren't worth his time or effort, anyway. Not that he cares. Alex is awesome whether he's sitting or standing and he knows it.

I appreciate your concern and am thankful for the advice but in this, as in most everything, I am following Alex's lead.

Alex's desires outrank anyone else's opinion.

This is his life. He is in control. If I get some flak for that... so be it. If Alex being Alex degrades your entire community... Well, I can't say I'm sorry for that because, as I said, Alex is fucking awesome as he is. I will not change him for you or anyone else.


  1. Wow!! I can't stand how people can assume - especially one on the spectrum. We know why we do things, can't people just leave us alone and let us care for our children since we know what is best for them? Glad you said something because, well, it needed to be said.

  2. oh yeah i do, the thing about the tilites is you canorder itwitha high back and sides to make you feel secure.. thas why, yep that is very true mediaid is a bitch !! my advocate that helps me alomstpulls her hair out whenwe have to go throuhg it lol
    oh come on eerybody need dignity i know a severe autistic in the uk who CHOSE stroller over a wheelchairb ecause wheelhhair riminds her of herday and he died,so i can understanmd she made the choice, i gues id be cool if alex tried the custom chair, and chose the sroler over that... i like how you listen to him though, il ove how you aknowlege he communicates, and he IS a person who DOES think ;-).. we need more parents like you who acceptand celevrbrate diffeeences as part of diversity.. you and my dad actuallyt think lots alike im gonna share your blog with him, i know he like it cause he says alot of same that you say YES i agree it i IS his life and he shouuldbe in control... your luck you dont live in vermont, here they ALWAYS treats us as infact and they neer aknowlege us as thinking feeling beings... ( the agencies and such ) thats why my dad is looking into heloping me mov to amore '' gimp friendly'' state and group
    hopwe to chat soon takecare

  3. ..by the way i agree yotsly those big clunky wheelchairs at walmart are HORRIBLE . yeah those are nothing like a custom chair t all. those are tanks LOL i wouuld cry in one of those too, yuck

  4. we have the special needs maclaren that goes to 110 pounds. I need it to get "Wilma" from point A to point B when she's on the ground screaming refusing to move and causing "Fred" to go into multi-bite mode. We also use it for walks around the neighborhood---- Wilma has hypotonia and not a lot of endurance, and Fred just can't process walking and taking in all the sensory stuff at the same time--- we make them take turns in it. I'm thinking we'd probably qualify for a second one since both twins need it but so far we've gotten away with one.

    For a $680 stroller, it's wheels are HELLA SQUEAKY! Do you have that problem with the convaid? what do you do about it?

    1. Our wheels don't squeak... have you tried WD-40?

  5. "Alex gets what Alex wants", "He is in control"? Having observed a lot of kids regarded as "Autistic", I am starting to believe that a lot of kids on the so-called "spectrum" are simply strong-willed kids who have been allowed to take over their households by weak and misguided parents. Tantrums are a very powerful manipulation tactic, but must never be allowed to succeed with any children! Frankly, it's embarrassing that you cannot even get your child to walk when he is obviously capable of doing so (as well as being capable of doing many other things that you are not making him do).

    You will no doubt hate my saying this and claim that I don't understand the situation. But I could just as easily say that it is you who has lost perspective and has bought into a distressingly common, but highly destruction philosophy of parenting. Parents are supposed to be in charge of their kids and must impose their will on them when they are doing things that are wrong. The fact that you apparently have the same problems with your other kids also suggests that you need to start acting like a real parent to them. I believe the current "Autism epidemic" is largely driven by parents giving up on controlling their kids, with the encouragement of a lot of misguided authorities.

    1. Thank you. I am not going to say that you misunderstood what I said because you didn't. Those are my exact words and my exact meaning. This is Alex's life. Every child should have some control over their own life. Even my 2 year old grandbaby is able to choose between 2 outfits and decide which cereal she wants to eat. She can make the choice that she wants to go outside or stay in. Alex is 11 years old. He should have a little more say than that. He may have severe autism, he may have the self care and communication skills of a 9-12 month old but I choose to presume competence. I give Alex control where he can have control. Alex is glued to my side almost 24/7, he follows me without complaint, it's only fair that I follow him back.

      I think you skipped over the part where Alex is not bratty in the least little bit. There are no tantrums. no meltdowns. no fits. He is not demanding, he doesn't even ask.

      The reason for the stroller is not laziness, it's wandering- http://www.homestylemama.com/2013/05/wandering-when-prevention-doesnt-work.html

      If Alex was doing something wrong, he would be corrected. but he's not.

    2. I appreciate that your response is reasonable and not simply an angry emotional dismissal (as often occurs in these discussions). I never said that children shouldn't have some control over their own lives. But any reasonable observer would conclude that you have effectively given Alex total control over both his and your lives in every area of interaction with him.

      And you may not consider your son's stubborn resistance to change as tantrums, but it's still a control and developmental problem. There probably aren't many meltdowns any more because you have basically surrendered to what he wants. After all, as you yourself said, your child's desires trump everything else. But children have many desires that are simply wrong for their parents to indulge. For example, I would suggest that his clinging to you is one of the ways he controls you rather than a sign of him "following" you. And I would suggest that Alex is capable of learning to listen to you and not wander if he isn't a rebellious brat.

      Furthermore, constantly excusing a child because they've been diagnosed as Autistic (as a lot of parents I've observed do) doesn't help either him or you. It simply keeps you from encouraging him to grow as he should. You are assuming that he can't grow in many ways. But you simply don't know this. Pushing children is often necessary in order that we may truly know their limits and help them to be all that they can be.

      I know it's very hard for you to see this because of all of the difficulties you have had with Alex and your other children. But it is also because you have bought into an excessively child-centered approach to parenthood, which (unfortunately) became the dominant view about 50 years ago. It harms any child to be sent the message continuously that everything revolves around him or her. Sadly, though, this has become the norm in parenting in America. But it only produces spoiled, self-absorbed, dependent children who will have a very rude awakening when they go out into the real world, which can never be made to revolve around them!

    3. ok, this morning we went to story time at the library. Getting out of the car, Alex sat there and patiently waited for me to do what I needed to do to get set up to go in while my Goofy one bounced around the car, jumping in puddles, climbing lamp posts.

      We walk in the front door and park by the room with Alex sitting quietly in his stroller, rhythmically patting my hand, quiet as can be while the Goofy one spun in circles, walking backward, hopping around, not watching the people around him.

      We went in to the room and picked our seats, Alex sitting beside me in his stroller, munching on Fruit Loops, listening to the stories quietly while the Goofy one rolled around in the floor, wiggling around, and just not being still. I handed the Fruit Loops to my 13 year old, asked him to watch his brother, and took the Goofy one out to the hall to talk about respect. The Goofy One took a seat by us and sat for the rest of the time.

      We went to check out books, I parked Alex too close to the shelves, he knocked books off. I told him no, I moved him and got the rest of our books. He may have knocked a few books off of the shelf but that's nothing considering I had to leave him sitting in his stroller in the middle of the floor while I chased the Goofy one down the aisle to drag him back to check out our books instead of doing flips onto the beanbag chairs.

      We went up to the self checkout and Alex sat calmly in his chair watching the Goofy one jump around touching the walls and laughing. I handed Alex to his brother and grabbed the Goofy one, dragging him out to the car and putting him in his seat, keeping my mouth shut as the Goofy one went on and on about how he should have stayed home because he knew I was going to act like this. I tell him that I am not happy at all with the way he behaved today and let him know when we get home he is going to his room which sets off screaming and kicking.

      I walk around the car to put Alex in his seat- the one who has been sitting quietly while I dealt with his brother- I put him in his seat, load up the car and head home with the music blaring so I can at least keep some sanity over the screaming and kicking that is going on behind me while Alex sits silently and calmly in his seat.

      We get home and I ask my 13 year old to get Alex so I can get the Goofy one and both Walter and Alex cooperate with no complaints. I drag the Goofy one in while he screams that he's running away, he's not living here anymore and I'm not the boss and that's not his room because he's not living here anymore. I shut the door, I walk away and this whole time... Alex is quiet, calm, cooperative.

      The Goofy child is not autistic. He's ADHD and at this moment an unmedicated pain in my ass but he's not autistic. My autistic one is the easiest and most well behaved of the bunch. There is a difference between behavior and ability. Yes, behavior needs to be corrected. Autism is not an excuse for bad behavior but not everything is bad behavior, some things are developmentally appropriate and need to be redirected, not corrected.

      I said Alex doesn't throw temper tantrums. He doesn't throw fits. He doesn't meltdown. period. There is no "anymore" because he's always been laid back. There is no stubbornness. He rarely resists anything so when he does, I pay attention. He is not glued to my side by choice, it's my hand that's wrapped in his shirt so he doesn't run into traffic or some other dangerous scenario. The doctor says he highly doubts there's a cure for wandering but if you have any ideas on how to teach him not to... I'm wide open for advice.

    4. Have I told you lately how much I REALLY like you Mac?? Well, I do. You are one AWSOME woman and a TERRIFIC Mom

    5. Thank you, Renee! I REALLY like you, too!

    6. Mac your blog is awesome i too have an ASD child who likes to wander i completely get it when you say Alex gets what Alex wants, because in my house Jayden gets what Jayden wants for the most part and he is far from being spoiled, its just that they dont ask for much so what they do ask for i think they are entitled to it and about him being at your side almost 24/7 that is where Jayden is because that is the only place i can guarantee he is going to be safe

    7. I have the feeling that Duke not only has zero children, but zero life. Does he READ your blog?