The importance of Respite

Let me just say that I know currently many families would LOVE respite but just can't access it as there is neither the places nor the funding. With the NDIS coming in that should change. If you are a new Special Needs mum I want you to think about this blog but remember, there is no right or wrong way, just what works for you and your child (or in this case family).  

When Owen was a baby, he had seizures, bouts of extreme irritability, endless appointments (DRs and therapy) as well as other things.   We realised it would be a long and bumpy road and that in order to make it we would need help (from then on-wards).  We needed regular breaks for us and to be there for his elder brother.  The second point is so important, I can not stress enough how important it is to make time for the special needs child's sibling/s. So many of their plans change due to some unexpected need of their special needs brother/sister.  They need one on one time as they are just as important.

So, Set up respite supports early.    When they are still babies/toddlers even if you feel you are OK at the moment.  There are many reasons I feel this:

• There is often a waiting list, so the sooner you are on the list the more likely it is the support you need will be available when you need it.
• If you reach that point where you feel you really, really need respite, you are already starting to burn out and as we all know there is still a long way for you to travel and the more rested you are the longer you can travel.  
• If you start respite early your child will grow up with respite being the norm for them. We have the same lady who started with Owen at 2, that still looks after him today (he is now 8). He knows her, she knows him, he loves her, she loves him, he knows her home as he has grown up going there and she is like an extra Grandmother to him.  She is an extension of our family.  Not everyone is as lucky as us to have that.    
• Your other children will get some one on one time with you.  It is important for their self esteem to know they are important. Our eldest is used to us having that time with him.
• Ensure there is time in there for you to foster your relationship with you partner.  It is a sad fact that many relationships fail, even more in the case of special needs families. Have time out for just the two of you to reconnect.  You don't have to do anything expensive.  A walk, a picnic to the beach, anything where there is just the two of you.

What type of Respite?  
It can be a few hours in home to feed, bath  your child etc or an outing for your child.  If funding will allow, some sort of overnight respite.  Even if it is one night once a month.  Again it is getting them used it early so you don't get to the breakdown stage and it is thrust upon them.  With the NDIS coming in I would be asking for a combination of both.

It was hard for me to trust others with Owen but I have had to learn to.  I'm not talking open slather, you do need to vet potential candidates and be comfortable with them. You need to consider the medical needs and implications.  It was also hard for me to ask for help but I learnt I needed to.

I'm sorry I don't usually soapbox but I am going to.  So if you don't want to read a soapbox comment please don't read on.

If you are someone reading this that does not understand the importance of respite  (or the NDIS for that matter) or are the bean counter who calculates how much respite funding a family gets let me ask a question.  Have you ever watched the movie "Groundhog Day?" with Bill Murray.  He lives the same day over and over.  That is how life feels for many families, like Groundhog Day.  Spend a day with them, see what their days consists of.  

For us it is all the things that happen for a 9-12 month old baby, nappy changes, bathing, dressing, brushing teeth, feeding, not always knowing what he wants/needs/is crying about, teething (yes at 8 we are still getting molars through), witching hour, limited timeframe to be out and about before he gets bored or tired.  Add to that medical issues, medication, therapy, appointments and paperwork.  Please don't forget that this is all with a strong, tall,  8 year old boy who can protest about eating, getting dressed or a nappy change and you have my day.  I am not complaining, I love my son, I just want you to understand.

Now I have painted a picture, imagine you have been doing that every day for 8 years and then imagine you don't know when you will stop doing it?    How are you feeling?  Thinking about going to some corner to rock? Imagine you want to be there for your child's needs for the longest time as you love them so much. Respite helps parents like me have a break, to keep going, to take a breath or two.

Imagine you want your child not to need you because you know you will not always be able to be there for them. Like Bill Murray in Groundhog day, special needs parents organise therapy (Ok Bill did the piano) and other development for their kids.  This helps them learn to do the things the rest of us take for granted, so that one day they can do "things" for themselves and wake up from Groundhog day into a new day, just like Bill Murray does. Bean counters ............funding helps this.

I could also go into the mental health implications of all this but I won't at this stage.

If you are starting to worry about me, please don't.  I am one of the lucky ones, I get respite, I have a good network of family and friends,  so most days I am fine.  At this stage I am not rocking in the corner.  Owen also has the most beautiful smile that lights up my world.  If I did not get respite and the support I do, our story would be different.  Owen has therapy so he is slowly learning things.  Other mums  and dads are not so lucky and they are the ones we need to help.  They are the ones you should worry about.  I sincerely hope there is enough funding with the NDIS to go around.

Grocery Shopping

A few tips on how to make grocery shopping easier and cheaper.  BTW I am not affiliated in any way with any of these stores.

I really like Aldi and they are cheaper in many items than the other players BUT they are not special needs friendly.  So I only go there for certain items that I can't get for the same or comparable price elsewhere and when hubby is home.  

If you shop at  Woolies or Coles, most of them have Special Needs trolley's but they store them inside.  My local stores will bring the trolley to the car if you ring the service desk to ask them to.  Take advantage of that. Better still don't go to the store.............Shop Online instead.  Coles and Woolies have both Click and Collect and Home delivery services.  If I do Click and Collect my hubby picks it up on the way home from work.

How to save money on delivery.  Woolies offer a 12 month Delivery Saver offer. Buy the Delivery Saver for  $89.00, then orders over $100.00 are delivered for free (any day).   Coles offer free delivery Wednesdays for orders over $100.00.  Click and Collect are free for both.

You might be thinking but they are so much more expensive than Aldi, so even with free delivery, you will still pay more.   It is not the case for every item as I have found your no name brand milk, butter, flour, sugar etc tends to be the same price at Coles and Woolies as they are at Aldi (or very close to).   Woolies on-line prices are the same on-line as in-store.  For the basics Coles seems to have the same on-line but you'd have to check what you are interested in just to make sure.  Specials  are the same on-line as in-store for both stores, so I always take advantage of half price offers for items I use all the time and for things like laundry detergent I just get whatever is half price at the time.  So if you shop for basics and specials the end on-line shopping bill is comparable to shopping at Aldi or just a little bit more and you haven't had to deal with whatever makes a shopping trip difficult for your family.  

Then if you do what I do and use your  RACQ breakdown membership to by Woolworths Wish Gift cards at a 5% discount, you actually pay $95.00 for $100.00 of groceries (a quick check of RACV and NRMA have confirmed you can use your membership with them to do the same).  Entertainment books have the same Woolworths gift card offer and have discount on Coles gift cards too.

Hope this helps.

Sharee

DIY Sensory Play

There are many items you can make that will help meet your child's sensory needs.

You could make  Sensory Boards or Sensory Fences  following my instructions in some previous posts.  You can also make your own Sensory Table, Sound Tubes, Light Box toys etc.  Here are some ideas to get you started

DIY Sensory Table

• 1 Ikea RAST Bedside table (currently 14.99).
• 1 Clear Plastic tub with clear lid (I got one for $10 from the Reject Shop and you want one without wheels) 
• Self adhesive Velcro (had that but you)
• (optional) 2 Kmart Dog "door stops"

Put the RAST table together as per instructions, turn it upside down.  Stick on enough Velcro to hold on the plastic tub (I did a rectangle). Attach the other side of the Velcro to the Velcro you just stuck down, remove the sticky tape like backing then place the tub on top and press down so the sticky tape side of the Velcro sticks to the tub.  Leave for 24 hours before you try and remove the tub (so it adherers properly. Now if you are worried your child will pull it over, place some door stops on the shelf.  Also if you are super tircky you could buy caster wheels from a hardware shop and attach them to your bottom shelf.

Now if you want to use it as a light table, put your lid on and buy a  battery operated light box  from Kmart (currently $19.00 and found in their home decorator section).  

Now what to use to play on it? Squishy bags and sound blocks

Squishy bags

A4 laminate pouches, filled with cheap hair gel, food colouring and things like sequins or glitter.  Use things that will attract your child's attention but make sure it isn't sharp. To seal them you use a dry iron (on the hottest heat) or a hair straightener around the edges.  I like to double bag mine by sealing one, then cut it smaller. Place it inside another one and seal that.  Just to have added protection.  They are fun to press and move the "filling" around.  The photo just does not do it justice.

Sound Blocks

• Small plastic craft jars (cheap shops usually have 4 packs for $2 to $3).
• Sequins, beads, glitter.
• Food colouring
• Water
• Glue (non toxic)

Fill the jars with whatever tickles your fancy (just mix up the colours you use, how much water and the amount of filling so they each provide a different experience), add water and a couple of drops of food colouring (don't add too much).  Seal it up tight and when dry glue around the seal.

You can also look for see through items like spinning tops, beads, toys etc.

You can make your own Sound tubes too...............Admittedly they are not super long like the special ones you buy but they certainly do the trick.

Sound tubes:

• Selection of plastic Baby bottles (or other see through plastic bottles you might have)
• Selection of objects such as rice, bells, sequins, beads, little balls, fluffy balls, dice, little chains etc.  Just a selection of things (light, heavy, quiet, bright etc) 
• Glue (non toxic)

Fill the bottles and seal.

Happy Creating!!

Learning to sit

Owen could not get himself into sitting position until he was 3 1/2 years old.  He could sit unsupported a while before that.  It was a LONG, LONG process.  Here's some of the tips I picked up along the way.

Therapy Help:  Get your therapist to show you how to help your child into sitting position, step by step,  Get in the habit of doing it each day, even just a couple of times.  These kids need so much repetition in order for their brains to form the pathways to remember it.

Make sitting "normal":   What I mean is get them used to being in sitting position as much as possible. So provide play time in a safe sitting environment. Get them used to seeing the world whilst sitting up, then hopefully they will want to sit. Owen had no great desire to sit, so we had to REALLY work on this one.

Get some aids to help you work on or encourage sitting:

• Such as a Clam Shell Paddle Pool.................But not just any sort. You want one like the pink and green one's  in the photo's, where the sides go straight up from the pool floor and they have curves for the child's back.  Put water, balls, toys, rice, pasta in it (not together though).  Use it to provide different experiences for them.  When they get tired of sitting or aren't quite strong enough, there is built in support for them.   
• Or maybe a sturdy rectangular laundry basket or box, to sit them in with some toys.  Put it somewhere it isn't going to tip it over.
• Get a Bumbo or the like (I used to pop Owen in the bath tub with his Bumbo, It would be a little unsteady until the water got high enough).
• Look at what you already have, can your highchair double as a play chair? Can you put supports or rolled up towels in their to provide  extra support.   Can you give them toys to play with while they are sitting there?
• If you can afford it look into a corner chair, posture chair or the like (whatever your therapist recommends). You can sometimes pick up a second hand one online or loan one through a toy library (such as Noah's ark or you local council) or even your therapist (if they have a loan pool).

Build Strength: Through tummy time.............I know they get upset but sometimes you have to be cruel to be kind.  If they hate it, do it regularly but in short stints.  Get a therapy wedge (or something similar) so it helps them be a little further off the ground. Put toys in front of them but not just any toys, make sure they are their favourite toys and only bring them out for tummy time.  Get a gym ball.  

Get your therapist to show you some fun activities you can do with them on there eg bouncing them up and down whilst  they a sitting (and and you are holding them) or tummy time rolling and reaching for toys.

Build endurance: They will need endurance to sit, so to build Owen's strength I spent hours, upon hours sitting behind him, putting him into sitting position.  I was there to position him, provide support (when required) and to stop him from falling over and hurting himself. I had a picnic rug that he and I would sit on at the park, at a picnic or while watching his big brother play sport.  I even sat with him like this if we were watching TV at home.  There is even a picture of me in a holiday unit, looking 
at the view whilst sitting with Owen.

Be cunning:  It got to the stage where the only way Owen would to push up into sitting position was if he had no other choice.  So I put him on his tummy (which he still hated) and I would position my self so the only way out of it was for Owen to try and push up into sitting position.  He hated tummy time more than he hated trying to sit.   Once Owen mastered sitting, he would get lazy and just lie backwards, so we placed a low but sturdy toy (Fisher Price Xylophone)  just behind his bottom, so he would lean, feel it and sit back up again. Took him ages to work out that it could be moved.

Lastly, don't give up. There were times I thought it might never happen but it did.  

Easier Toileting? Yes you can make it a little easier

Ok this is a bit of a gross subject but lets be frank, toileting special needs kids is hard, damn hard and it is probably one of your least favourite jobs.

I never thought placing Owen on a toilet would happen so when his special school wanted to do a little bit of toilet timing with him as part of his routine, I said go for your life.  Inwardly  I thought it wouldn't work and they were wasting their time. I was wrong and I underestimated Owen.  He did get the hang of going to the toilet (on a Commode style of chair). So we started doing it at home too and still do so.  He has even now moved to the toilet itself.  He can't tell us he needs to go but seems to know that if you place him on there that is what he should be doing.  

Bearing this in mind,  when we renovated our bathroom,my husband looked at options that would take some of the hard work out of the clean-up.  To our delight he discovered you can get Bidet toilet seat that attaches to your toilet in place of the usual seat.  The bidet washes (with warm water) and dries the "area". It is not  always 100% effective but most of the time it is and it definitely makes it easier. For those with girls there is also a special "lady hygiene" function.  

I think a Bidet is more dignified for a child reliant on parental support for toileting. I also think it would help any child who was capable of taking themselves to the toilet but have trouble wiping themselves.  How much more independence would that provide?  And don't panic that the child will jump off the seat and it will still being going, there is a little sensor that turns it off if they aren't sitting on it.

Are they expensive?  My Mum and Dad ordered one on e-bay recently for $500, ours was around $1000 (from The Bidet Shop).  So yes, they are a bit,  but no more expensive than a dishwasher and when you consider how much we save on wipes and toilet paper etc, in the long run it will pay for itself.

Do you need a special toilet for it to sit?  Not generally but you will need a power point to plug it in.  So that is an added expense.

Who can install it?  A handy person could.

It is worth looking into as it might save you some time.