Our Checklist for a (Semi) Wheelchair-Accessible Home

The time comes at different points for different families - the time when a move is required to deal with accessibility issues. For us it came a few months ago when Mason broke 30 pounds. We needed a wheelchair in the house to get him around, and we needed a way to get the wheelchair around the house too.

Not having a budget or time to build a house that is totally accessible for a wheelchair (we had 30 days from the time our old house sold to close on another one), or to buy a house already built to all the ADA specs, but nevertheless needing something more workable for our specific situation, we went on the hunt for a house that we called, for lack of a better word, "adaptable" or "semi-accessible."

So what were we looking for? What were our priorities? First, we made a list of what we DIDN'T need. We crossed off our list several items most people assume are necessities for accessible homes but aren't to us right now.  Things like accessible showers, handicapped ramps, stair lifts, track systems, accessible sinks/countertops -- while they may be needed eventually, these are not required for us yet. Instead, we needed a home structured in such a way that it would be easy to add these things as needed later without a lot of demolition and rebuilding. For now, we wanted something very "Mason-friendly" and flexible for the future. It couldn't be overall much bigger than our previous house as far as finished space due to budget, just a better use of space. Here's what our "dream house" looked like us (we moved in October 8):

1. RANCH/ONE STORY
Our goal was to have everything on the same floor so that stairs aren't even an issue. We do have a basement for storage and storms. But there's no reason for Mason to need to go downstairs much. One of my favorite parts of the new house is having the laundry room on the main level! This will be great for all of us as we get old :) At our old house, we didn't like having to send big brother downstairs to the playroom. This time we looked for bigger main level bedroom for him that would allow us to keep his playroom and most of his toys in his room.

2. WIDE HALLS / DOORWAYS
The most important item on our search was for a hallway that would accommodate a wheelchair. Most of the existing homes in our budget where we lived were older and had very narrow halls (including the house we already had). To find the wider halls we had to move further out of town but we felt it was important enough to our well being that it was worth a further drive. We doubted we could find doorways that would accommodate a wheelchair even in a house with wide halls, but what a blessing to find that his wheelchair fits easily through the master bedroom door (where he sleeps) and through the master bath door (where he bathes). Mason will be able to get "curbside" service for a long time and our backs are very grateful!

3. OPEN FLOOR PLAN
Mason's main mode of mobility right now is rolling. Because of his sensory defensiveness, he also prefers carpet to hard flooring. So we needed someplace with lots of open carpeting for him to explore safely. If it turns out he moves on to walking or even ends up getting around by wheelchair or gait trainer instead of rolling, this setup will be easy to switch out to laminate or hardwood. This house not only has exactly the kind of layout we needed for that, but the whole living room also can be viewed from a distance so I can keep an eye on him even from the kitchen. The kitchen is a great place for using his gait trainer too because of its open hardwood design.

 

4. EASY-TO-LOAD BATHTUB
Mason loves the water and he's still a tub guy. For practical bathing we aren't much into the special needs "bath chairs" yet, mostly for reasons of storage and the fact that it's really hard to get the back of him clean if he's sitting in a chair. So we wanted a tub that is big enough for a grown-up to fit comfortably, and a tub not blocked by a toilet like our old tub was, or by the faucets, which would prevent caregivers from lifting him in easily. Right now we use a neck ring and earplugs system so he can float and play and we can get him clean on all sides. This house also has a shower stall and space so if we have a change of heart we can switch the shower out to the roll-in variety later down the road.

6. STORAGE
 We are especially thankful for a bigger closet in our room to allow us space not only for clothes, but for lots of Mason's medical supplies. His infusion and feeding equipment all have a nice "home" now instead of taking over our bedroom :) The living room coat closet stores lots of his therapy gear and there is a perfect "nook" at the back of the living room, out of his "roll" zone for keeping his stander and wheelchair when not in use.

So, those are the highlights. We love the neighborhood too and that we can use the subdivision pool for aquatherapy in the warmer evenings of summer. We feel very blessed to have found so much of what we were looking for in such a short time. We'll still need to make some changes to make it work financially so pray for us as we seek to figure out all those details. In the meantime we've enjoyed a very snowy winter settling in!

Can't wait for warmer weather to spend more time at the wheelchair-accessible park 5 minutes away!! :D

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.

.

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!