Finger Isolation

Owen's therapy is working towards finger isolation, primarily so he can point to a picture on a communication device.  If you look back to my Sensory Boards post you will see some ideas to promote finger isolation. Owen needed something with larger holes than what I had previously made. After discussion with Owen's therapists,  joint efforts at various prototypes, we have come up with this box to promote finger isolation when using a switch button.

What you need

• Thin box  (I used an old Mic-Key button box but a game box would also suffice) 
• Old laundry basket
• Black spray paint can
• Tape
• Stanley knife
• Old plastic cutting board
• Velcro

Instructions

• Cut square hole in top of box  (to attach laundry basket)
• Cut hole in bottom of box*, big enough for your switch button
• Cut a piece from the laundry basket for the top of the box
• Tape the basket piece to the inside of the box
• Spray paint the box
• Put Velcro on the bottom of the box and on the cutting board (for attaching the box and the switch button)
• Place a switch button inside the box, attach the box to the Velcro and use.

*The idea of the cut out in the bottom of the box is to keep the switch separate from the box.  Some switch button's tend to be sensitive and this reduces the risk of the box moving causing the switch to activate.

Happy switching:-) 

Update 1/07/2015

The black paint has peeled off of the tape I used, so I have had to put black tape over the top. Good as new now.

How to make your own Therapy Bench

I home school Owen and in order to position, support and encourage correct posture when doing table work, Owen needed a height adjustable, tilting, cut out table (there will be a future post about this item) and a therapy bench.  I sit behind him on the bench, to provide guidance and support. In researching the therapy benches I discovered not only were they nearly $800 (including delivery) but the one I was looking at took a maximum weight of 82 kgs, given that Owen is 25 kgs, that doesn't leave much left for me (or any person for that matter).  Quite by accident I came across a picture on Pintrest of a PVC therapy bench someone had made.  There were no instructions but it gave me enough to go on.  The finished product was around $100 and as he grows I just put longer legs on it, so it grows with him.

Preparation

First, you need to work out how big you want your bench and how tall.  Talking to your child’s therapists will help.  Decide on what mm PVC you want to use.  We used 25 mm but there was a 20mm option.  All your fittings must be the same mm.

What you need

From a hardware shop:

• PVC tubing (we bought 5 but could have got away with 4) 
• 6 x T junction fittings.  I use these for the "feet".  You could use end caps instead, I just wanted a little bit more floor coverage.
• A piece of plywood for the bench top (we bought a 12mm x 1200mm x 396mm and cut to size)
• An outdoor furniture cushion to the size you want (if you are super handy you might be able to make your own). 
• Stick on Velcro.
• Smallish wood screws for screwing the saddles into the plywood (we used 14 all up).
• A pkt of pressure pipe saddles (we used 7 saddles all up).
• Optional PVC glue (we did not use).

Order online:

• 4 x 3 way corner PVC joins (for the four extreme corners).
• 2x 4 way corner PVC joins (for the middle legs and cross support).

There are a number of ebay shops online that sell these specialist products.  I used a company called Klevercages https://www.klevercages.com.au/.

Tools:

• Screw driver
• Hacksaw (for the pvc)
• Woodsaw (for the plywood)
• Paper, pen to calculate the lengths you need to cut.

Instructions:

• Measure the inside of your T junctions, corner joins etc.  You need to take this into consideration when cutting your PVC to get your bench the right height.  This is the complex bit.  Remember the measure twice, cut once rule.
• Cut your PVC and put the frame together, see the pictures I have shared. Use glue if you want (But don’t on the legs if you want to grow it).
• Cut your plywood and using the pipe saddles screw it to the frame.  We used 7.
• Velcro the cushion on the top.

Enjoy!

Physio Straps, every Special Needs house should have one

Let me introduce you to the "Physio Strap".  It's one of the things I can't live without.  We got our first strap when Owen was around 12 months old and we haven't been without one since.

They are basically a thick elasticized strap with Velcro at one end.  The beauty of them is you can secure the Velcro to a any part of the wrap. We use them as a belt , helping to keep Owen safely sitting in a chair or any other piece of equipment.  We replaced the belt on his feeding chair with one of these (see the picture to the right), used one in a hanging egg chair to stop him falling out, kept him safe on a dining chair when out and about, and used one to add extra support to a stroller.  

The actual name of them is Nylatex Wraps and they are made by Chattanooga.  The wraps come in various sizes and range in price accordingly. I bought 3 on-line recently for $90.00 including postage.  There are a number of shops that sell them on-line. I'm not affiliated with any of them.  I just like the wraps and have never found another brand.

Medical Information “Housekeeping”

This post is more for the “newbies”  on the Special Needs journey.  Welcome and I hope I can help your journey run smoother. 

Owen would have been around 10 weeks old when we were first told there were issues.  At that stage we were in a state of shock (and fear), yet denial, yet knowing deep inside. That's confusing isn't it?  It was a strange mix of emotions and one I can not adequately explain. Our world collapsed and left us in a haze. We concentrated on putting one step after another, no matter how little the steps were.  As a result, I did not give much thought to record keeping.  I am pleased to say I have picked up a few tricks since then.

When it comes to record keeping and preparing for an appointment it helps to keep in mind specialists generally want to know:

• Any diagnoses you have
• Issues that result from the diagnosis (and sometimes there is no diagnosis just the list of issues)
• If it is not your first visit, any health or other issues that have surfaced since last time they saw you
• What medication your child is on, any side effects noted, dosage.
• Any medications your child has been on, any issues.
• Any allergies
• What other specialists you have seen
• How and what your child is eating and drinking
• How often they are going to the toilet (and they want ALL the gory details)
• Weight, height and head circumference.
• Where they are developmentally
• Finally, what you need from them

So here are my tips:

General

Even if you see all your specialists at the same hospital do not assume everything they need is in your child's file or easy for them to access there.  Give them what they need or point them to where it is.  Asks questions, take lists of what you need to discuss.

If in Australia always ask for indefinite referrals from your GP, so you don't have to go back each year for a referral.

Set up a calendar:

It can be paper or electronic but it needs to be everywhere you are.  I use my Gmail calendar.  I can access it from my phone and PC at home.  I note appointments and reminders in there. I generally set reminders for 24 hour prior to the appointment and check the week ahead on a Sunday.

Set-up a display folder to carry information:

Get yourself a display folder, with sleeves you can slide appointment letters , doctors letters, blood test results and the like in.  Take it with you to appointments.   If you have a scanner, scan the letters first (so you have an online copy) before you put them in your display folder.  Keep copies of the letters behind them in the folder (for handing out  in need).   Don’t worry if you don’t have a printer that copies, the receptionist at the specialist you are visiting will take a copy if they interested in the information.  Set-up a system, so you know where to find what you are looking for.  It depends on what is easier for you, it could be date order or like me, blood tests together, eye reports together,  letters together, other reports together. Finally if you have any contact cards, attach them to the front inside of the folder along with your child’s hospital reference number  and your contact details in case you lose the folder.

Ask every specialist you see to cc any letters to you.  This means you get a copy of their letter back to the referring doctor.  This is helpful as these letters can have confirmation of diagnosis for funding eligibility, form filling or simply information other doctors may need.

If tests are completed, ask if you can get a copy of any reports, blood tests results for your folder.

Storage and Preparation:

Organise a spot on your PC to file any on-line or scanned reports and letters.  So it is easy for you to find.  I actually file mine in an e-mail folder so I can easily e-mail them to someone.

Keep a diary of the major things that happen, so you have a date record.  I do this via an app on my  IPad (Baby Connect).  It is not a Special Needs app but I like it as I can create my own categories under sickness, medication, moods etc.  I can even input height, weight, milestones and diary notes.  I can filter by the info I want,  generate an e-mail myself with the raw data and input it into excel if I wanted to (BTW I don’t).  I just got the basic app which was around $5.  I don’t use everything on it but you can even log nappy output in need.  I’m sure there are many different apps that do this sort of thing, so search around.

Create a list of all the doctors, therapists, schools and organisations involved in your child’s care.  Take a print out of that with you when you see a new DR or go to enrol in school etc.  All of these places generally want permission discuss your child with other teams involved in their care or just want to know who else is involved. Rather than fill it out manually I just write refer attached and cross out anyone that does not apply.

Create a dot point info page (you can combine it with the above if you like), that you can take to new doctors, therapists or to the ER.  Mainly so you don’t forget anything but sometimes it is helpful just to hand it over. 

• Name, date of birth and hospital reference number
• Current height and weight (date completed)
• Include current medications and dosage (include vitamins, probitoics)
• Allergies and what happens if exposed
• Diagnosis, list of issues, including things that are monitored, that might become an issue
• How they go under a General Aesthetic

 I know all of this looks very daunting, but once you have it set up it is second nature and quick to maintain.  You will be able to put your hand on what you need, when you need it.

How to make your own Sensory Fence attachment

Last week I explained how you can make your own sensory boards.  You can use some of these boards and other things to make your own sensory fence.  Sensory walls and fences can be very expensive (up to around $1000.00) and you will find not every item on them will appeal to your child. By taking my time when collecting items, I can usually make one of my fence attachments for less than $100.00 and can guarantee Owen will love it.

Preparation

Like when making a sensory board think about your child, what interests them (sound, vision and touch wise) and what skills you are trying to develop.  Think about some types of activities you want to set up i.e. do you want them to scratch, poke, pull, feel etc.  Then progressively buy things that meet that criteria.  I find “junk” or “cheap” shops excellent.  I look in their party, pet toy, toy and kitchen sections.  I also go to lots of op shops as they often have used xylophones, tambourines etc, at very reasonable prices. Once you have all your sensory supplies it is time to put it together.   

What you need:

• A piece of UV protected plastic lattice (size it according to the location you will be attaching it)
• 2-3 tie down/lashing straps
• Various sensory boards
• Other sensory items/toys you want to attach
• Cable ties
• Elastic
• Drill
• Nail clippers
• Scissors

Instructions

• Prepare your sensory boards. Drill two additional holes near each bottom corner (not too close or you will split the board) so you can attach it to the Lattice.  You will use the handle of the chopping board to attach the top.
• With any toys, think about how you might attach them to the lattice, use any wheels etc and if there is no other option, drill holes.
• Lay the lattice flat on the ground, and set out what you want to place and where. When thinking about this consider how your child will be accessing the board.For example, Owen practices standing at his, sitting, kneeling and rocking on a rocking horse. Standing and kneeling are his least favourite activities  (they are the hardest work for him), so I place the most appealing items at those heights. These also tend to be easier items to use as he uses much concentration on the hard activities he has little patience for more difficult activities.
• Attach with cable ties or elastic (if you want the toy to be able to be shaken).
• Turn the lattice over, trim all the cable ties with scissors, then back to the base with the toe nail clippers (this gets rid of sharp edges).
• I run my fingers along all the cut cable ties to double check there are no sharp edges.
• Position your lattice on your veranda rail or fence and use the tie downs to attach. The great thing about using these, is you can move it as required. I do warn you, attaching it can be a bit fiddly and I usually wind it once around one of the rails whilst wrapping it around the veranda rails to stop it moving.

Where did I find some of the items and special notes?

I have included some links below.  I am in no way affiliated with any of these stores.

• I use plastic lattice as they don’t need painting, are easy to clean and attach things to and to things).  I use this one from Bunnings (click here to view). They used to have a black one but I can only get the cream one these days.  At $35.00, they are great for this purpose. 
• Regarding the tie downs, I prefer the ones that just thread through and have no hooks that I get  from Bunnings (click here to view) however use what you are comfortable with.
• The xylophones were purchased from op shops and as they have “keyboards” I pop an old thong at the back to tilt it enough to allow the keys to work.  
• The castanets were bought from Daiso as I liked the bright colours, I attach them by threading the zip ties through the elastic at the back.
• The bike horns were from a cheap shop and if you find such an item too noisy just put some strong tape across the horn side.
• The Maracas are just from cheap shops, you can put a cable tie around the narrow part and tread elastic through and attach them that way.
• The bright mice are cat toys, they were $3.00 each at our cheap shop.  They are a favourite with young and old.
• If you are using gloves filled with rice, seal them using two lots of cable ties and make sure you use high quality ones.
• Don’t forget simple things like curling ribbon, my son loves that.
• The fabric circles are just pieces of fabric in embroidery hoops. I trim the fabric after I have placed them.   I got the hoops from Spotlight but have seen them in Lincraft and on-line.  Always have spare fabric as the fabric can deteriorate over time and sometimes kids pop them out.  It is quicker and easier just to put a new piece in.
• Not that I have done this but you could buy an activity cube (pictured above) and take it apart, drill holes in each panel and attach the panels to your fence.  I’ve seen them listed cheaply at times on e-bay, in Kmart etc but very expensive too.  So shop around.
• If you want to know about a specific item I have not covered, please feel free to post a question in the comments and I will reply as soon as I can.

Happy  creating                

How to make your own Sensory Boards

Developmentally Owen is around 9-12 months old.  Like any child of that developmental age he loves to explore with his hands, touching, pulling and scratching.  He doesn’t always like to play with toys how you would traditionally play with them nor does he always like your traditional toys. His fine motor skills are a long way behind and he is still developing the use of his vision. 

When he was younger we attended a playgroup at a Special School that used Lilli Nielsen's Active Learning Program.  These sensory boards are my take on the boards they used.  They help him explore and learn to use his hands and vision.

Preparation

Think about your child, what interests them (sound, vision and touch wise) and what skills you are trying to develop.  Think about some types of boards you want to set up i.e do you want them to scratch, poke, pull, feel etc.  Then progressively buy things that meet that criteria.  I find “junk” or “cheap” shops excellent.  I look in their party, pet toy, toy and kitchen sections.  Sometimes baby and paper.   Once you have all your supplies it is time to put it together. Decide what you want on each board and where. 

What you need:

•          Various plastic chopping boards
•         Cable ties
•          Elastic
•         Sensory items you want to attach
•         Drill
•         Nail clippers
•          Scissors
•         All purpose glue (if you are making a scratch type board)

Pull items

• Lay out the items and decide where you need to attach the items (you will need two holes for each point you are attaching something), 
• Drill holes in the board
• If you want the item to move to and from the board (maybe to the mouth or to be shaken), attach with elastic (knot it really well)
•  If you want the item to stay in place, attach with cable ties, trim ties with the nail clippers (this ensures you get really close to the base and there are no sharp bits to cut little hands)

The example to the right is a chopping board I bought for $2, with some plastic practice putting balls and some toddler training cups I bought for $2 from Big W. I drilled a hole in the bottom of each cup (need to be very gentle and slow as they can crack).  The concept around it is for Owen to reach in with his fingers to pull out the balls, thus working on his pincer grasp and eventually pointing.

Scratch board

Cut items to size, lay out items you want on the board, glue and leave to dry. There is an example of one on the first picture.

Some example boards:

The “board” one to the right is a biscuit tray (make sure it is not too non-stick or your duct tape won’t stick) with bicycle spoke attachments inside and a cake cooling rack sticky tapped with duct tape.  I am hoping it will encourage finger pointing.  Also makes a lovely sound when shaken

To the right, pull and vibrate cat toys.  You can get some brightly coloured ones and they are usually around $3.00 per mouse.

Other ideas: gloves filled with rice, wooden foot roller massager, brushes, various ribbons and strings, beads, squeaky dog toys, artificial grass, sponges, dusting gloves, spoons, castanets (Daiso have really nice ones), whisks.

Always supervise when using as nothing is 100% secure.  Good luck and happy creating. 

Sharee

Repurposing an old Car Seat into a Swing

I can’t lay claim to this idea as a swing was provided to us by an organisation that looks after our family.  Have you seen how expensive it is to buy a “special needs” swing with all the safety harnesses?  How many car seats are thrown out once they reach their use-by date?  Why not convert it into a swing, like the one at the bottom of the post.

  

What you need

• Old car seat
• 2 long pieces of strong rope
• 2 Strong steel eye screws
• 2 strong steel carabiners

Instructions

• Drill 4 holes into the car seat, making sure they are evenly placed
• Thread each rope through the bottom, then the top of the car seat (so you have one rope each side of the child).
• Knot the rope at the back of the carseat, double knot for security.  Pull hard to make sure it will hold and remember to check regularly to make sure it has not loosened in any way. 
• Knot the rope at the top, attaching it to a carabiner.
• Drill and insert the eye screws into a strong beam.
• Attach the carabiners to the eye of the screw.

Tips:  All of this is a bit fiddly, everything must be even or your swing won’t swing evenly.  If the gap between your eye screws is narrower than the swing, the swing will go wonky.  The same will happen if your rope is uneven.

Happy swinging :-)

The “Sara Lee” method and kitting out your child’s wheelchair

Before I get into “construction” Blog entries I thought I would introduce you to the “Sara Lee” time saving and convenience approach I use.  I don’t know how many of you saw “Sara Lee” ads as children but I remember a lady in the ad’s saying “layer upon layer upon layer”.  So with this in mind let me introduce my two “Sara Lee” methods.

Bed making:

My son doesn’t have top sheets, he wears sleepsuits.  When making his bed, I layer and alternate waterproof mattress protectors and sheets until I have made the bed 4 times (sometimes I do 5).  When Owen has a leak or vomit in the night I can just pull back a layer, throw it in the wash and change him without having to get him out of bed as I have another layer waiting.  Doing so many layers means Owen can have 3 accidents before I have to make the bed again.  I started doing this as Owen’s bed is a bit awkward to make and accidents always happen in the middle of the night.  It is a very sad moment indeed when I reach his mattress.

Pull-ups on outings:

As many of you are aware, there are limited change facilities for our kids out and about.  People often have to change their children on the floor of a disabled bathroom.  Owen can weight bear whilst leaning against me, so I use this to my full advantage (and his).  When we head out I double layer pull ups.  This way, when he needs changing, I just kneel down, lean him against me, pull down the pull-ups, tear and remove the used one, clean him and pull the others back in place.  He hasn’t touched a dirty floor, nor have I had to completely undress him or remove his shoes.  Easier and quicker for the both of us.

Kitting out the wheelchair.

I have attached a cheap basket (with holes) to the bottom of Owen’s wheelchair with zip ties.  This saves hanging heaps of things off the back of the chair.  See Below:

In this basket I make sure I have:

• A small picnic rug (for floor changing if required or just a place for him to sit.
• A small change mat wallet (one that fits a couple of nappies, wipes, small hand sanitiser, gloves and nappy bags and folds up nicely.
• A change of clothes, a hat and a bib.
• A sipper cup, one of Owen’s special milks.
• A syringe that fits straight into his button in case of emergency.

I keep this stocked so If I have to head out in the hurry I can.  If we are heading out for longer I do have a lunch bag I can hang on the back for food. 

Other items you need on the chair:

•  “Pram” drink holder like the one to the right, hat I have attached to the back of his head rest (no hot drinks though).  Most department stores have a heap to choose from in their baby section.
• A toy/activity to keep your child occupied.
• A waterproof chair mat on the seat.  That way if there is an accident, you can just pull it off and wash it.

Until next time

Sharee

Welcome

I’m Sharee. I am a mum who has a couple of kids, one of which has Special Needs.  I don’t have “super powers”, I was not “picked” and I’m not special or unique. I am just a mum who loves her kids, does what she can for them and tries to make sure her day runs smoothly.  See that’s not unusual at all is it?

My special needs son is Owen and he is nearly 8 years old. I won’t go into his diagnosis now but I will point out he does not walk independently, he does not talk and he is behind in many ways. We are working on independent movement, communication and a lot of other things too.  Fortunately he has mastered the art of smiling and melting my heart.

The road he has taken me on is a long road and can be bumpy at times. Sometimes I take a wrong turn, get bogged or go the wrong way.  There also seems to be a few tolls (aka equipment and other expenses) and lots of pit stops (aka doctors, sickness and therapy).  Many people have and continue to help us find our way. For that I am grateful.  

Along the way I have picked up a few tips and come up with (or modified) a few ideas that help make the road a bit smoother and/or cheaper. So this Blog is not about my journey nor is it about Owen’s journey, it is about sharing some of these tips and ideas in the hope they help even just one person.  I will share details about how I organise Owen’s information, how I organise for appointments, how I set up his wheelchair/equipment and about some items I have created to help with his development or movement.

Please bear in mind any items I have made have only been tested on my son, they suit him and his needs.  They have not been tested on a differently abled child.  Please consider your child’s temperament and ability when considering constructing one of my creations. Something safe for my son may prove otherwise with yours.  You might need to tweak the design for your child’s needs.