strollers and difficult child's

[ready2run]

my difficult child is six. he still insists on riding in a stroller most times. he has a tendancy to scream when we try to make him hold our hands, he won't walk properly on a harness and he sure doesn't stay with us if left to his own devices. i am sick of having to have a stroller for him. he's not always in it but we have to drag it around for him. he will also normally have a meltdown when we take him out in public. i know he is over stimulated by all the noises/people/sounds/smells. i get it. that is when he needs to be put in the stroller as other wise he will scream and refuse to come or accuse us of hurting him. while i understand what is going on with him i also find it embarassing when other parents oogle us for having a six year old in a stroller. mind you i'm sure most of them think he is about 4 or 5 max because he is small and skinny, it still gets us alot of strange looks. he has also destroyed at least 4 strollers by now because of his flopping around in them and bouncing up and down. i had to buy a new one today because i can't take him out without one and no, he won't ride in a cart. i got a good one, regular $400 for $150. it better last. i have tried everything and there is no way to get him to walk nicely with us and i can't always have someone else watch him although i will openly admit that if i don't have to take him out with me i don't. after a block he is crying that his legs hurt and he has no energy, yet he has the energy to scream and run around all crazy destroying things if i would allow it. i don't really mind the stroller that much other than the looks i get and the fact that i often have to remove my 2yo from the stroller to put the 6yo in. does anyone elses difficult child need a stroller past the normal age? or do you do something else? he is not going to fit in there forever. he has just gotten to 40lbs though, so i still have another 10lbs before he gets to the max weight listed on the stroller.

 

[Marguerite]

It sounds like sensory issues are a major factor for him. You perhaps need to work with him to help him understand that there are other ways to cope. Kids like this think in straight lines, direct and to the point, they are not generally good at lateral thinking or trying to find a creative solution. But you may be able to help.

For example, ear muffs or ear plugs can help with noise sensitivity. Dark glasses can help with too much visual stimulation. Legionaire's caps (commonly used by Aussie kids, a school uniform item in most elementary schools) can cut out peripheral vision and reduce overstimulation. He may be resistant to trying these to begin with, but if he finds it helpful he may be more willing. I found that once I could talk to difficult child 3 about his autism and show him I was trying to find ways to help him cope, he was more open to suggestions. We explained it to him when he was about 8 - kids are able to understand at different ages. We also explained it in ways tat did not focus on dysfunction, but on simply a different way of thinking. People with autism are just as capable, but they need help to find what is the best way for them. Because difficult child 3 was always so capable with computers, we used computer operating systems to explain it to him, and it really helped. We said that some people have Mac brains and some people have easy child brains, and you can do the same sort of job with either computer, but the programming for each to make them work, is different. So each person has to find what is the best way for them. And with autism, we find ways to reduce the sensory sensitivity so we can learn how to cope better. And over time, you do learn how to cope better, and also learn what you are really, really good at, often better than other people - because every person has their special skill and although he is young, he will find out one day what he is able to really enjoy doing, and doing well.

With the stroller - do you strap him in? If so, that is perhaps part of what helps, that sense of being held. In which case, weighted vests or weighted blankets.

Also with the stroller - see what you can find second-hand. Plus you can get strollers for larger, heavier kids because there are always kids with various disabilities who need strollers when they are older and heavier than expected.

As for other people - learn to ignore them. Or plan your answers ahead of time - "my child has an invisible disability, we cope the best way we know how." The tantrums do change and ease, as he gets older and better equipped to manage.

There will always be people who give you a hard time out in public. You will need to develop a thick skin and also your own compassionate but firm response. I often used to say, "Walk a mile in my shoes; I am glad for your sake that you have never had to understand. We love our child but he needs to be handled differently due to his disability. We do what works and what is advised by his specialists." (and you can count on us as part of his team of specialists!)

It does get better and there are blessings. It's just hard to see them sometimes!

Marg

 

[Autismkids]

http://www.adaptivemall.com/scout12basic.html

Above is like what we have. It has taken a lot of abuse from ds. It can hold daughter as well (100lbs). I don't care about looks, but we do get less with this because it's obviously for special needs.

Ours has multiple straps for emergency purpose. DS was able to get out of all the standard strollers and was a dnager to himself and others. He no longer needs straps, but we always have the stroller with us. Sometimes his legs will get tied, other times he's just mad.

DS will be 7 in october and I have no plans of giving up the stroller just yet.

 

[JJJ]

Yep, stroller to about 7 or 8 and a wheelchair after that. He NEEDS that safe spot. I know it is easier said than done but try not to worry about other people. Have you looked at a double stroller, or would he bother the baby?

 

[ready2run]

glad mine is not the only one.. i know i have to get over the looks from other parents. it's just frustrating that people jump to conclusions when it comes to difficult child all the time without ever considering the possibility of special needs when it is so obvious to me and others that know him that the things he does are symptoms. we do have a double stroller but the kids tend to bother each other. if difficult child is in a destructive mood it's not safe for the baby to be next to him and if he's not he gets upset when the baby touches his side or puts his feet in the 'wrong' spot. we did use the double stroller alot when difficult child and our 4yo were smaller.


@autismkids, did you get funding for that? i would never be able to afford one of those, although it would be useful.

 

[Marguerite]

About getting out of the stroller restraints - easy child 2/difficult child 2 was a terror for this. We could not confine her. We had more stroller straps than a straitjacket, but she could bend and twist out of them. We now know - hyper-mobile joints. Double-jointed.

Part of the high-functioning Pervasive Developmental Disorder (PDD) (whatever it is) means that the non-verbal problem-solving skills in all our kids have been very high indeed. And they used it to great effectiveness to get wherever they wanted.

As a baby difficult child 3 would climb to ceiling height to find a key (even if we had hidden the keys thoroughly - he would sniff them out) so he could get into the locked coin-chase money box to get money out, then re-assemble the money box so he could post the money back in. Over and over. difficult child 3 would also wander, but did not respond to his own name (did not seem to know he HAD a name) and we had to put in an unclimbable front fence with gates held closed by octopus straps, to keep him on the property.

We also had to stop trying to prevent what could not be prevented. Instead, we had to teach appropriate use. For example, when difficult child 3 began to try to bypass our password protection on our main computer when he was under two years old (I am not kidding - he would deliberately crash the computer then shut off the password protection on restart, before it had a chance to kick in) we found an old computer in the rubbish which we let him use exclusively. That way he left our main computer alone except when supervised, because he had another outlet. I also learned to back up files remotely and bury my files deep inside multiple folders. When he first began raiding the computer he would click on a text file, let it open, select all the text, type at random, quit the file and then when it asked if he wanted to save changes, he would click the default "yes" and I would lose pages or work to a few lines of gobbledegook. AARGH!

So we had to teach him how to use it appropriately, because his drive to do what he wanted to do was stronger than our ability to stop it.

We applied that principle to everything and have found we cope a lot better. And of course he is now looking at a career path n computing!

Marg

 

[susiestar]

If you perfect that "what is YOUR PROBLEM?" look people start to leave you alone. been there done that with a child who HAD to eat as we shopped. NO other option or he couldn't handle the stimuli. I learned to get something iwth protein or else raw baby carrots or non-sweet crackers because otherwise he wanted the entire package regardless of size.

Then by age 6 he thought he was "old enough" to go off on his own. Only did it to me one time because I tanned his bottom. I only spanked when it was something that could get him killed or maimed. Running off in a store in the city we lived in was SOOOOOO not safe and I saw it as a real threat to his life. With husband it happened a LOT more because husband was awful at keeping him in the cart or making him keep a hand on the cart or his belt. Wiz also knew that husband was NOT going to spank him. Ever. With me he knew if I said it that it would happen. ANd I had a LOT of discipline things he liked much less than being spanked. Tantrums in public? Oh he didn't try that past age 2. Why? I am NOT making this up. I truly did it. I knew he was starting to test that limit so I got some friends who worked in a dept store to let me know a slow time. then I pretty much made the situation ripe for a tantrum. He started and was truly pitiful at tantrums - weak and ineffectual yelling, no stomping, very boring compared to kids I babysat. So, with the employees being prepared ahead of time (thinking I was nuts but willing to go along with it to liven up their day - we were in our early twenties after all), I laid down on the floor of the shoe dept and pounded my fists and yelled. Took less than 15 seconds for Wiz to stop and less than 1 minute for him to beg me to stop because "Mommy, you are 'barrassing me!".

Yes, he had words like embarrassing in his normal vocabulary at two. yes, I am not afraid of being an idiot to keep my kid in line. Yes, he still remembers it -has my dad's memory - dad remembers the cow that put her head through the window over his crib when he was 5 months old - Wiz remembers the rainbows in the back window as we brought him home from the hospital after he was born - and he was NOT there for long. husband and I had no clue there were rainbows, but the gma he never sees had them written in husband's baby book with Wiz' info. He had only seen her maybe 4 times and all before age 3 and she enver spoke of it. Not to him or us.

Focusing on how to make his sensory issues easier will make this easier. DOn't take him out with-o some protein in his system. It really helps. If nothing else get those zone or balance bars and keep them in your purse. They have a balanced amt of nutrients and they make a HUGe difference. Or get some deli chicken or sandwich meat and let him munch. COnsider giving him an MP2 player and some music or a book on tape to listen to. Classical music is very calming, and books on tape are amazing. If he has a grandparent who can calm him by reading, have them record a story onto tape. My dad did that for Wiz and then the toher grands and it ended up being something that the sp ed teacher at his jr high used with students there. His voice is just like that and he read Uncle wiggily onto tape - and it is amazingly calming. Just be sure that YOU control the volume.

As for Marg's comptuer kid, Jess was like that. At age four she installed fax software into our computer and started sending faxes. We have NO idea w here she found the software. Or who she sent them to. Pages of her gobbledygook got faxed to numbers we could never identify. We just saw logs that they went through. She actually put numbers in via software she found on the computer that made a different tone for each key that was pressed. It came iwth the computer is allw e could figure out because she NEVER went online. husband kept freaking that she would break it, but it was impossible to keep her off of it. So we just kept files on floppy discs (common back then).

 

[HaoZi]

I didn't have the stroller issue - Kiddo could get out them easily but mostly it was used for when she was tired or too prone to dashing off. I'd also go with a wheelchair option and see if there's some way you could buy a 5-point harness system to adapt to it.

 

[confuzzled]

i use the same style stroller (convaid cruiser) for my ds (he's 18, and roughly 100lbs but man-long). he drives a power with-c for school, but frankly, its too cumbersome for everyday errands, and the stroller is just MUCH easier.

i know its expensive. we DID have funding through insurance/medicaid but i'm sure a local org. would help with the cost....like an elks lodge. we have been only been through 2 of them from the ages of 3-now--they are very sturdy. really, the second one was more because he just outgrew it.

there are various harnesses and other options that go to them (not shown in pix) for safety, and it is transport ready--it can go on a school bus or airplane.

we've always gone to a wheelchair clinic to be properly fitted, but i'd imagine if you arent in need of significant positioning options a PT could assess for it.

its considered DME (durable medical equipment) under insurance--depending on yours, it might be more than a standard co-payment...often its like 10% of the balance due.

i would absolutely speak to your pediatrician about it--you dont know until you ask.

hope that helps!

(ps: when we got our first one, my ds *was* ambulatory--he just wasnt running any marathons ;-)

 

[confuzzled]

oh YEAH...

pps: *IF* you plan to go the route of some kind of adapted stroller/wheelchair type thing--please make sure it is 1. easy to fold/disassemble and 2. *actually* fits in the trunk of your car. physically test both before you spend a red cent.

says the woman who was sold a $4,000 high chair/stroller/carseat extravaganza and drove a Geo Prism....it sat in my basement while i used the "free if you spend $75" TRU umbrella stroller. :-D

 

[Shari]

My Wee is 9 now, and we used a stroller for longer outings until he was 7. For the same reason you describe.

He kind of outgrew the need for it on his own, but we have always done a lot of Occupational Therapist (OT) to address the sensory needs.

By far, the oddest thing that worked for me when I had to take Wee out...when Wee was very small, 2-3-ish, the grocery store (or any other type of store) was volunteering to walk yourself straight to hades. And somehow, you were supposed to enjoy it. HA! If you tried to hold his hand, he squalled and fought you to no end. You couldn't carry him...he didn't like to be held. If you tried to "herd" him, he'd just run all over, licking the canned good. Another mom who had a boy with similar issues told me that, for whatever reason, her son could follow just fine. So we tried it. I would tell him as I unbuckled him from his seat "I am going into the grocery store (when he got a little older, I also told him what I was buying)" and set him down and I'd take off to the store. Only 1 time did he ever not follow, and that was in the store, and he got hung up licking the canned goods or something. But for whatever reason, it did work. I felt like parent of the year (not) with a toddler following me around instead of in my grasp, but it worked. I could actually purchase a gallon of milk with Wee in tow and not nearly have a stroke getting out of the store. You do what you have to.

As for the looks, I've just gotten over it, mostly. But I tend to try to make situations humerous to deal with them. I've been known to make signs or "business cards". When I fly with Wee, I create a little business card and just hand them out to the flight attendants and any folks sitting around us when we get on. It has Wee's picture and first name, some things he likes and a very brief description of what a great kid he is, and the title says "I have Aspergers" or whatever. Then I list some of the behaviors they may witness with a brief explanation, and always the disclaimer that mom knows me best and how to get me through my fears, if there are any problems, she'll help me through them as quickly as possible. It has worked really well. It could be adapted to hand to strangers who like to glare, too.

That website, cafe press, or something like that, also sells tshirts that say "I have Autism" or "I have developmental delays" or whatever on them, and though I have never bought one, I think they are a great idea. Some of them are funny ("I have autism. What's YOUR excuse?") and some have a website link printed for more info....there are lots. Been a while since I looked. But I kinda stole the idea and have written "developmental delays - rescue and response vehicle" on my car window. No reason it couldn't be on a stroller, also.

I'm also all about education, tho. If there's a glimmer of an open door in someone's approach, I'll just say, "this is what he does because he has...we're learning, its just slow" and be open about it. If they are an old hard-nosed school marm type, I don't even bother.

Hugs. It hoovers, I know.



The Occupational Therapist (OT) speculated that perhaps following gives him something to focus on that helps to drown out the sensory attack that a grocery store is, and also allowed him to remain "in control" in his mind...who knows, but I do know it worked.

 

[Shari]

PS...Wee's BT had us do some exercised that REALLY helped our store experiences, too. Wee's one of those kids that can't handle changes, so once he got to 4-5 years old, knowing what the trip to the store entailed helped. We started by making a list of one item for me (whether we needed it or not), and one for him, and no matter what, we bought those 2 things (helps if you have a helper at first). If he was kicking and screaming and lying on the floor, we bought those 2 items, anyway, and only those 2 items. They could be a gallon of milk and a pack of gum. Doesn't matter. Point being to shift the focus to what you get from the store, not the ordeal of the store.

As he got better with that, the list increased to 2 items for me, and one for him. Then we just kept building, and we went every single day. Then we varied the number of items on the list, or sometimes, the list was just one thing for him, and I got nothing. Then, I got one thing and he got nothing. And so on.

Now, we can go to the store without him having a meltdown OR having to buy something (tho in typical kid fashion, he always asks!) Can I go buy $100 worth of groceries with him in tow? Not very well. but I can buy enough for a meal or two and not feel like myhead is going to explode when I get out of there.

He even handles Walmart now (tho I don't, very well!)

 

[Marguerite]

We moved from a stroller to a leash of sorts. There are two kinds that we found -

1) the type with a five point harness and a D loop at the back where you clip on the leash. A friend of mine invented one of these (easy to do it) where the leash can be unclipped and another strap attaches the kid to a high chair or similar, by clipping it to the same harness. So you can put the kid in a harness at the beginning of the day and not have to change the kid out of it until bedtime. But you can transfer the child from stroller to walking to high chair easily and securely. My friend was disabled on crutches with very active and wilful twin boys, she set it up so the leash was a Y shape, each short arm of the Y attaching to a D clip so she had two boys on one leash.

2) the wrist strap - again, you can make one. It involves wide elastic with velcro stitched to it, plus a canvas or other non-stretch band stitched onto the wrist band so it has strength. You thread the wrist strap through a double metal loop a bit like a pair of D loops (only you can get these as single units with two spaces to thread the fabric through) and then FOLD IT BACK ON ITSELF and fasten it with the velcro. The combination of the loop and the folding back makes it almost impossible for even the best little problem solver to get loose. They can see how it's done, but it takes too much combined dexterity and strength to be able to remove it. Make a loop for the other end and attach it to your own wrist. This one is good because it doesn't require hand holding. Between the mummy wrist strap and child wrist strap runs a coiled plastic cord a lot like a telephone cord. It telescopes.

Main hazard with these - you need to be careful to not trip up other people passing by. But it can help teach your child to walk nicely near you, without the need for touching.

On the subject of physical contact - I watched "Temple" yesterday (Clare Danes doing a brilliant job p[laying Temple Grandin) and remembered that we would ask difficult child 3 for a hug, and never force one on him. We learned to accept whatever hug he could give and to thank him for them. Over time he became quite affectionate, we encouraged him to accept social physical contact as part of social manners. But giving him the right to control it - that helps a lot where these kids feel overwhelmed by sensory stuff.

Marg

 

[Autismkids]

DS's insurance paid for it. His pediatrician at the time was amazing and had no problems submitting medical necessity letters.

We had a physical therapist from a DME come evaluate him. I put him in 3 different strollers so she could see how he would climb out, but with the potential to get hurt.

She measured him for proper fit, and measured ME. This was important because the stroller I wanted would have been huge for me to push. I'm only 5'.

His has a foot plate, a basket (medical needs), a 5 pt harness, thigh straps that buckle under the seat, and a chest strap that buckles in the back. In a good mood he could still get out of all this. However, in a bad mood, he couldn't spin the straps to get them off.

We also have a car harness by EZ-on products of florida. I have a car, but a body shop was able to install the buckles meant for an SUV or minivan. I needed this set up because the one meant for the car still used the car's seatbelt and he could get out of it.

The last year (since we moved) has been much better with regards to the aggression, running away, and attacking. Before the move he had to be strapped to go into 7-11 to get his slurpee!

 

[InsaneCdn]

did you get funding for that

In some provinces, service clubs like Lions or Kinsmen will cover unusual, not-otherwise-funded "medical necessities" - anything from specialty equipment to travel expenses for out-of-prov medical appointments etc. Usually, they want some form of documentation (e.g. from a medical doctor) that this person needs to have what you are requesting - but not all the details about why. There will be a formal application process, and it sounds like the turn-around time is fairly fast.

We haven't used it (we could use funding for all sorts of things, but our needs don't fall under anyone's umbrella!), so this is just from research, not from experience.

With the range of problems you're listing, there are probably others not diagnosed... including possibly developmental dyspraxia or developmental coordination disorder - which affects the ability to perform coordinated motor skills, either in difficulty learning, inability to master, or neuro-motor fatigue. Same symptoms often seen or attributed to autism spectrum without separate diagnosis, but can exist in kids not on the spectrum. Can be in fine skills (tieing shoes, writing, using knife-and-fork), gross skills (walking, riding a bike, throwing a ball), or both. If this is also a factor for your son, then he may in fact need the stroller just for fatigue alone - and THEN you add in all the other sensory issues, and... not hard to see where you - and he - are coming from!

 

[TerryJ2]

You've gotten some great ideas here.
I just happened to notice the thread because my difficult child loved being in one of those kids mall carts until he was way past the appropriate age. His knees were shoved up against his chin, he was so tall. He finally outgrew it.
But I think you have additional issues. Best of luck! (And just ignore the other shoppers. Really.)

 

[ready2run]

for now we will continue to use the stroller. he has earphones i can bring with him, for some reason i never thought of that other than when i know it's going to be very loud. i meant to ask the doctor today when we were there but it was so hectic that i forgot most of what i wanted to say other than "increase medications please" and "no more psychiatrist for us, thanks". tomorrow difficult child has to go in and do a full blood work screen to see if he has any chemical or horomonal problems and make sure his medication levels aren't too high to increase. should be fun trying to get him to co-operate with that....lol. he just weighed in @ 18kg and apparently for a child almost 7 that is almost off the charts small...poor thing. anyway, i'm tired. it's been a llooooooonnng day. i'll check back here again later.

 

[april1974]

http://www.adaptivemall.com/scout12basic.html

Above is like what we have. It has taken a lot of abuse from ds. It can hold daughter as well (100lbs). I don't care about looks, but we do get less with this because it's obviously for special needs.

Ours has multiple straps for emergency purpose. DS was able to get out of all the standard strollers and was a dnager to himself and others. He no longer needs straps, but we always have the stroller with us. Sometimes his legs will get tied, other times he's just mad.

DS will be 7 in october and I have no plans of giving up the stroller just yet.

That is a nice looking stroller and I agree, people won't make comments because you can tell it's meant for a child with a disability and you have no reason to be embarrassed for keeping your son safe and your own sanity intact!

I would start by taking him for walks in the neighborhood without the stroller and slowly get him used to walking...however the benefit to your son being in the stroller is control and restricting his ability to take off.

 

[ready2run]

i noticed he's alot quieter and not so bouncy when he's in there too. like instead of stomping and flopping on the ground and making a big scene if he doesn't get his every desire filled he'll sigh and then complain a bit and let it go. today we finally got his ecg done after 3 failed attempts because i asked if we could try putting him in there to get him to hold still for it. i can hardly beleive it worked! i mean, he made sure to let the lab techs know what he thought of them for doing their 'stupid' tests but he did them and hardly made a fuss other than for the bloodwork, which i don't blame him and i remember doing the same when i was a kid.

 

[InsaneCdn]

Just curious... how much Ritalin and how much Risperidone?
The Ritalin family of drugs tends to "depress" appetite.
The Risperidone family tends to either increase appetite or enables the body to make better use of the calories... as in, weight gain can be an issue.

There's a slim chance that he might need less Ritalin and more Risperidone.