on the cheap: upcycled hoodie as pediatric wheelchair support cushion

We have been dealing with a wheelchair dilemma with Mason. His custom wheelchair (a Kimba with Squiggles seat) is awesome for school and out and about. However, it is heavy and we don't have an accessible van or ramps at our house yet, so we prefer to use the Kimba for outings and school, rather than having to unload it at home also.

That put us on the search for a "transport" chair for around the house; he is getting quite heavy to carry from room to room (and if you have ever tried to lift 32 pounds of "dead weight" you know it can be brutal to do all the time), so we needed something to ease our back strain. And he needed something more supportive than a stroller. We also wanted it to be big enough to grow with him, and to have big wheels that he could roll himself if he decides he wants to push himself as he gets older. However, it isn't time for Mason to get a new custom wheelchair (due to insurance requirements) so we had to improvise in order to get him something both that met the above requirements, and especially was affordable.

What we ended up with is this chair--Excel Kidz Pediatric Wheelchair.

It is about the smallest "standard issue" type pediatric chair we could find online. (I found one smaller but it was out of stock everywhere). It was too big (14" wide by 12" deep) for Mason as is, so it will grow with him; it has telescoping handles which we love (although one handle wouldn't stay in the up position when it arrived - we had to screw it up manually using a drill).

So...while this chair met Mason's need for light, portable wheelchair to use in the house, it didn't have much support. I had already gotten a contoured cushion for the seat but he still had too much room on each side.

I looked online for back and lateral cushions to add but couldn't find any that would fit his kid-sized wheelchair; and all the other sizes cost way too much anyway.

So I ended up using an old zip-up black hoodie upside down with the sleeves filled with towel rolls as lateral supports and a piece of foam and towel rolls inside as a back cushion.

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I put a thin cutting board inside a pillow case with foam over the articulating leg rests so he won't slide into the floor (I don't know how to rig a pelvic abductor.)  Any suggestions there?

  Not perfect but until we can find something better it'll have to do for now.

Update: this fix was temporary as he settled into the foam rather quickly and the support still wasn't enough. We have adapted it again by putting our "Special Tomato Soft Touch Sitter" into the chair and has been working great for months.

Wordless Wednesday

MASON FINDS HIS SPOON (Or, "Hooray!! Our child with dual sensory loss is learning to eat!")

Learning to eat solids is a messy venture for anybody. Imagine trying to learn while not being able to see or hear very well, having major sensory issues including an aversion to touching anything new with your hands or mouth, not even really associating food with hunger relief (since you've been nourished mainly by formula through a tube in your stomach for basically your whole life) yet you still have the independence of a 3 year old. THAT is a recipe for a mess!


Mason has always hated to be fed. I mean hated with a capital H. Even though it seems like the taste of food is not so bad once it's in his mouth...he hates to have food arrive in his mouth unpredictably. Even with touch, verbal and scent cues that food is going into his mouth on a spoon, if someone else puts the spoon in, he finds it disturbing. So, we have made very little progress because we have always been trying to either get him to let us feed him (by giving him enough warning) or by getting him to pick up his own spoon and do it himself (because we have always felt strongly that if he were in charge of the process, he would tolerate eating much better. Who would want food to just show up when it wasn't welcome? So far he doesn't pick things up intentionally; if he does, it's experimental and the next moment the spoon is tossed messily onto the floor when he realizes it's still in his hand.

So how do you go about teaching a child with very low vision combined with oral and tactile aversion to feed himself without holding the spoon himself?

Today, Mason showed me how to start!

Rather than try to put the food in his mouth myself, or get him to hold the spoon, I just held the bright-colored spoon still in front of him, where he could find it himself by scent, touch and residual vision. We have tried this in the past and he just arched backwards in disgust (he doesn't like even just sensing something new or different near him.) But today...he was ready! He CHOSE to go for the spoon! He found it, he took the food off, and he went back for more, over and over! He isn't going so far as to swallow much of the food (you'll notice he spits a lot of it right back out once he gets it in his mouth) but we'll take baby steps! He is repeatedly, voluntarily, eating off his own spoon and not protesting about it! This is huge for him! We are SO thrilled he is leading in this way!!

And though we have a very long way to go, here is a list of strategies that have helped us get to this point:

• Bright colored and/or vibrating spoon (to help him locate it)
• Soft spoon (rubbery not metal or hard plastic as he balks at "hard" things)
• Flavors that are not too intense and tend to help his stomach/reflux feel better afterward (oatmeal/pears and savory tastes work best for Mason)
• Taping a lollipop to his bib to let him "discover" it himself
• Exploring purees on a clean tray (this is messy but lets him figure out that food tastes good and he can put it in his own mouth by licking off his hands)
• not force-feeding - rather, letting him lead
• letting him do things that are familiar/safe during food time (listening to his favorite music, etc)
• a generous helping of praise for even small steps of progress

We welcome any other strategies that have worked for you as well! Thanks :) Now just pray that the food he does eat, he tolerates! (This is always the next battle as he has bouts of out-of-control secretions several hours after eating by mouth sometimes; we don't know if this is allergic (his tests show no allergies), reflux-based or aspiration related (but he always passes his swallow studies with flying colors), or coincidental viruses; but next to his aversion, these secretion episodes are the biggest hindrance to progress in eating by mouth because we just don't know what they represent. Anybody with insight please share :)

Overcoming Tactile Aversion in Deaf-Blindness

So. Before Mason was born if I heard the term "deaf-blind" I immediately thought of Helen Keller. No sight. No sound. No speaking..at least until Anne Sullivan came into her life and poured cold, fresh water onto her hand, followed immediately by signing "water" there. This simple but brilliant act of tactile connection unleashed understanding of communication for the first time for Helen.

As a child with a mild vision issue myself (lazy eye), Helen was my hero... I remember thinking it was torture just to wear an eye patch; how could one person overcome so much darkness with such grace? It seemed like the key to everything for her was the blessing of touch...using her hands to discover the world around her. She even used her hands on people's faces to understand them as their lips moved while talking. I did book reports on her, wanted to be an eye doctor when I grew up (until I realized I was too faint of heart for that), invented a "globe for the blind" for a 4th grade project that featured different textures of fabric to distinguish locations by touch, and wrote poetry with titles like "Ode to Opthamologists" in middle school. I even took sign language in high school and every chance I could at camps and went through the school of communication in college. Call it coincidence, or foreshadowing (I am an English major) or whatever you want. Looking back, I call it the touch of God's hand gently shaping and nudging my heart in helpful directions. But I still considered myself pretty unprepared for being told one day that my own child is "deaf-blind'(which doesn't mean he is totally deaf or totally blind; just that he has significant impairments in both to such an extent that communication is far more difficult than if he were impaired only in one).

I felt unprepared, NOT because I thought being deaf-blind in and of itself is a hopeless cause. After all, we could just teach him tactile sign if he can't hear or see well enough to understand ASL, right? And we'll teach him Braille to read. And use an Ipad app or speech device so he can talk with others. You know, all the logical stuff that people do who have deaf-blindness today.

Um. Not so fast. Because Mason isn't just deaf-blind...his bigger disability, in my opinion, is a long-standing, profound aversion to using his hands.

Mason is not upset by the hands on his legs. He is upset by having to touch an unpleasant-to-him surface in order to sit up.

Helen Keller used her hands for everything...to receive speech, to make sense of her world. I thought I was unprepared for Mason because I asked myself, how can Mason learn about his world if he cannot hear or see well, but also refuses to allow information in by touch, his most valuable asset, because his nervous system has been so ravaged by infection, seizures, propioception dysfunction, med and med withdrawal, surgery pain, reflux, blood tests and IVs that he fears touching and manipulating a toy worse than not knowing anything about it. Because of his aversion to touch (not the touch of others, but using his own hands to touch objects, despite a completely functional hand grip and 3 years worth of occupational therapy/desensitizing and a perfectly capable mind that is able to figure out creative solutions to avoid using his hands, like using his head or forearm to activate a toy or switch), Mason has been unable to hold a spoon, play with toys in the traditional sense, push up on his hands, indicate wants or needs by pictures on an Ipad (he won't touch pictures and he may not be able to see them clearly enough to make sense of them even if he would touch them), or "experience" much of the world enough to understand the meaning of many words. The aversion extends to his feet and he will not even let his feet touch the floor without them being strapped down or covered. So even his developmental delay (because he has to touch either the floor to sit, for example, or reach out and hang on to something to pull himself up to stand) is rooted deeply in tactile aversion.

Not gonna touch it, no matter what

We were told that because of his tactile defensiveness, Braille is not really an "option" for Mason right now. He may have enough vision to see giant print letters; it's too soon to say. Mason communicates by body language, a few vowel sounds and a few signs he made up that we try to figure out. We are really trying to stretch our imaginations as for ways to help him communicate because he has clear intent to do so...we are just a little slow :/

We're heard some people with blindness use such creative means as echolocation to navigate their communities; surely there must be a creative way to communicate with our son who has severe vision and hearing loss, to either break down his walls of defensiveness where the usual strategies have failed, or circumvent the hands somehow for exploration. We know there are head switches and switches for about any body part you can imagine, but most of these systems depend on good vision to make choices among photos. And he doesn't want to learn sign yet. He doesn't like people to sign things into his hands. He only wants to clap your hands together for you. But he gets so frustrated in clapping our hands that we wonder if perhaps he is trying to teach us some kind of Morse code using vibration. ;) Hmm. We aren't giving up. Although Mason can use some combination of signs, vocalizations and eye gaze to get his basic needs met as he does already, we want to truly understand Mason's voice and help him interact with his friends because we know he is in there. He is so social...we want him to connect on a deeper level with the others who love him so much.

Love him so much.

You know, no matter what method Mason ends up using to communicate, I think the biggest key to overcoming severe tactile aversion in a child with deaf-blindness is just that--LOVE, and no amount of "therapy" will top it. "If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal."

LOVE, after all, is PATIENT. 

This journey won't be finished overnight; it is a slow process where each day of loving gently brings small victories like small hands for the first time reaching out to "know" his best friend.

LOVE IS KIND.

I once heard it said that kindness is the language which the deaf can hear and the blind can see.

IT DOES NOT ENVY, IT DOES NOT BOAST, IT IS NOT PROUD. IT IS NOT RUDE. 

We can't compare our child's successes and failures to other children. We are grateful for what our child can do and gracious in how we treat others no matter how far ahead or behind in the journey.

IT IS NOT SELF-SEEKING

IT IS NOT EASILY ANGERED, IT KEEPS NO RECORD OF WRONGS. 

LOVE DOES NOT DELIGHT IN EVIL BUT REJOICES WITH THE TRUTH.
 
 We may not enjoy the daily struggle, the ups and downs, but the truth is, love is always worth the cost.

IT ALWAYS PROTECTS, ALWAYS TRUSTS... 
Every ounce of trust built on love can replace a pound of fear.

Soft "crinkly pillow" made by Grammy so he has something familiar and "safe" to learn to grasp.

...ALWAYS HOPES, ALWAYS PERSEVERES.
Those beautiful techniques of HAND UNDER HAND, where he puts his hands ON top of our hands as we explore new textures, and guiding at the elbow to let him explore himself, have opened so many new doors for him, and us, in perseverance.

LOVE NEVER FAILS! (1 Cor. 13:4-8)
Love is unconditional. And it always comes through when everything else fails!

LOOK AT HIS HANDS!!!!!! AND HIS FACE!!!! :D  CLOSER EVERY DAY!

Sound the Alarm for Costume Fun!

 Friendliest fireman out there!

Big Brother at Trunk or Treat--the officer handing out free donuts! (Bear's had a fever and Mommy isn't feeling so well so we're staying in this evening.)

  Just sitting around, waiting for the call!

He wants more fire engine sounds!

 Checking all his gear.

I don't have any marshmallows to roast. 

But anyone need a hug??

Tummy Time Troubleshooter!

Since he was born, Mason has struggled with tummy time...even just lifting his head off the floor for a few seconds has been a huge challenge. We've tried wedges and boppies and play gyms and people and praise and all kinds of toys especially his ipad as motivators....but haven't gotten very far. For his birthday his grandparents got him a "Tumzee" which is a tummy time gadget for babies. We took out the leg abductor since his thighs are too chubby and just lay him across it up to his armpits, and this thing is padded and has  a seat belt so he doesn't just roll over and he tolerates it amazingly well :) FINALLY we are getting some weight bearing on his arms and sustained lifting of his head :) Very light and easy to store. We highly recommend it even if a child w/ special needs is not a baby anymore, as long as they are not too wide for it, the child should still be able to benefit. The stronger he can get his arms,  the closer he will be to crawling!

Customized Ride-On Toy (Coupe Car) for Special Needs

Bear isn't strong enough yet to stay seated without slipping down or falling to the side in his Step2 Coupe that he got for his 3rd birthday. So Grandpa tricked it out for him with a built-in life jacket, iPad holder and doors that are secured closed. This customization probably voids any and all warranties that come with the car, but...he at least he has a car that's just for him :) Watch out world, here he comes!

On a roll!!!

35 months and just over two weeks shy of his 3rd birthday and Mason pulls off his next trick :)

We just can't get over it, Mason is mobile :D !!!! After he realized he had rolled over all by himself, he hasn't stopped yet! He is obsessed and all over the room!! I better get that boy a helmet, he's gonna be an explorer through the house now but he can't see very well where he's going ;)

Keep it coming little bear, you keep us all in awe of God's grace!! :D

Be strong, and let your heart take courage, all you who wait for the Lord!

Ps. 31:24

More progress!!

Mason has really made progress since the last post! At first he would sit if we held his feet or covered them with a weighted blanket...but now see what he can pull off! Check out this vid called "Get Back Up!!"

No hands or blankets needed anymore, whoo hoo!! He is sure working on his six pack! ;)

PS...when his dr saw him doing this yesterday at his office, he said, "That's incredible. This boy is going to WALK!" :D I hope and pray that is one dr report that is 100% right on :) God is able!!

Happiest blog since the first smile!!! :D

So a couple days ago I had put Mason to bed and glanced over in his crib and saw that he was sitting up by himself against the side!! He had raised himself up against the edge using his arm. He had done something similar when the dietician was measuring him...as she held his leg down to measure, he sat up to see what she was doing! This is the biggest milestone yet for Mason ... especially considering he doesn't even roll over independently yet from back to tummy, (is very close there also)...but the fact that he is sitting himself up voluntarily is AWESOME (normally he yells and bucks and arches when we work with him trying to sit and especially refuses to touch the floor with his hands!! So you can imagine how happy we are that he is doing this by his own choice!! He likes to feel something on his legs as he sits (I'm holding his legs still) since it helps stabilize him...due to his vision/hearing losses and sensory issues, just knowing where he is in space is very difficult for him. We are so incredibly thrilled and blessed that this day has come for him!!! Thank You, God!! :D

Sing praises to God, our strength. Ps. 81:1 !!

DIY Corner Chair

A friend of mine wanted me to post some pics of the corner chair ideas we've used with Mason, until we are able to get him a real one.(She has a great blog by the way...feel free to check it out ). I figured others may be able to adapt these ideas in some way for their own kiddos, so here they are.

Here's our most basic model...just a simple basket we found at Target that seemed sturdy, comfy and we use a pillow in the back. You can choose a basket based on the size you need. Obviously this one's not gonna work anymore for those long legs...not really a true corner chair but a similar concept. If you could find a taller one, that would be more like it. A rubbermaid tub in the right size would work, or laundry basket, but obviously not as aesthetically pleasing as an actual lined basket if you're going to use it in your family room.

 Here's the one we made for the playroom:

We nailed pieces from an interlocking foam mat against the wall as shown. The one for the floor we just locked into place without nailing, but it could be secured too if you didn't mind your floor being nailed into.
For the abductor, my mom just had a block cut from foam at Joann's, and made a cute matching cover for it. She sewed Velcro onto the abductor cover which we secured to the mat using self adhesive velcro from Joanns. You could probably just cover the foam block in something sticky (colored duct tape, contact type paper, etc., and not even have to sew the Velcro to the block, if it would stick, but we haven't tested it.) Yes, mom is available for custom sewing projects - she does a great job, just comment me if you are interested in having something done. :)

The neon lap tray was $7 at Hobby Lobby and works well with this setup. (They work great for his infusion supplies too. We got a separate one for that.)

Finally, we do a corner chair in his crib using kitchen chair cushions.

 

While we're on the subject of things we've found useful here are a couple others you might like

1) tummy time mat- if your little one has trouble on his tummy like Mason does (mostly a sensory issue with his face, and super painful shoulders)...here's an easy sensory friendly mat you can make too...(just cut a piece of egg crate to size and zip it inside a supersoft body pillowcase ($10). You can add an extra piece near the top to give it some elevation/contour. We stretch his shoulders using arm splints to keep him from bending them up too close to stretch. This mat gives him a comfy hip stretch too. He doesn't enjoy it at all lol ;)

2 ) Sensory play area - we used the top bunk off Micah's bunk bed set for Mason's discovery area. It works well since it has guard rails built in already almost the entire length around. We put a lot of high contrast toys in it and make sure there's plenty of place for rolling (he doesn't roll off his back on his own yet, but this motivates him to try). We use an old crib bumper around it, especially around the opening, so he doesn't bump his head or fall out. It's supposed to be a "safe" area where he knows he can go wherever he wants.

3) Oxo tot sprout chair - we didn't make this chair obviously, but we looked a long time for something to suit Mason's needs that wasn't another giant piece of equipment. It has a 5 point harness, high back, great tray for suction toys, sturdy abductor and adjustable footrest, plus fit well into our living room. It is good for kids up to 60 pounds (36 months to 60 lbs is really meant to be used without the abductor and tray but I think it would still work...most kids that size just don't need it).