School, what should I do?

What school to send your child to is always a hard choice.  I'm not sure how other countries work but in Australia, especially Queensland, we have more than one option.  We have Public schools (even those outside of our district), Private schools (traditional and alternate) and Home Schooling.  Add Intellectual Impairment you also have the choice between Mainstream (ie your local) and Special School.

There is research into which is better (Mainstream or Special School)  in terms of both short term and long term outcomes. I'm not going to go into it but will say when reading research I take into consideration that every child with special needs is different from the other, so whilst the research can be helpful it might not be true for Owen. I would recommend you do the same.  You will also find some people are "pro mainstream" and some  are "pro special school".   I'm actually neither. I'm pro having school options available to choose from and I'm pro matching the child with the best education option and environment for them to grow and thrive (where ever that may be).  I've seen some go to Mainstream and some go to Special School. That path was the best choice for them as an individual.

So when considering a school, look at all your options and consider:

• Your child's learning needs (where are they developmentally and where they are heading)
• What curriculum the school offers, how much will they alter the program for your child, how will they include them in the learning.
• Your child's environment needs (quiet, busy, aircon/heating, access, sensory, equipment) 
• What support can they provide, how much one on one they will get
• Your child's emotional needs and how the school will meet it
• Any anxieties they might have and how they will play out in the school environment
• How you will get them there, will you be eligible for transport.
• Any nursing or therapist support they offer
• How does it fit in with your family.
• What extra curricular activities will they offer your child
• What extra's does the school have eg library, playground wise, vegie garden, pool, sensory room/wall, pool.
• If required, before and after school care

Then send them to whatever school that turns out to be.  If you try that and it doesn't work, advocate to fix it or find a different and better option (whichever is the most appropriate).

Here's the things that factored into our decision on Owen's school:

• Developmentally he is less than 1 year old, is in a wheelchair, non verbal, has vision impairment.  He needs activities appropriate to his development level, that encourage him to reach the next milestone.
• Bearing the above in mind, it was important for me that he be doing the same work as his classmates not separate work.  I felt that "included" him more than him being in a class with local children doing totally different work to him.  He is one of 5 students of similar abilities.
• Their communication techniques matched where he was heading.  They used PODD AAC in the classroom.
• He needed to be in a school environment that was social yet not terribly hectic (otherwise he would not concentrate on the task at hand), that was small in numbers.  He is one of 5 in his classroom and catches the bus with a similar number of children. 
• They offer hydrotherapy as part of their program.  Owen loves the water and such a  program benefits him with muscle strength and balance thus hopefully walking some day. 
• Owen needs a strong sensory focus as for both calming and learning.  They have a sensory room and offer sensory activities in the classroom.
• Owen needs air-conditioning to ensure he does not over heat in summer (risk of seizures and distress).  This school is fully air-conditioned and they remain indoors at lunchtime.
• He needs access to nursing staff.  Most days there is a nurse on site.
• He needed access with therapists to help with movement, transfers etc and to write programs for the teachers to use.  They have therapists on site.
• He needs teachers specialised in teaching children with his level of impairment and his vision impairment.  They have both.
• They have walkers, standing frames, swings etc.
• I felt confident they could protect him from germs as much as possible (I home schooled Owen for 20 months after his health deteriorated so much he could not cope with his previous school environment)

For us, that all led to a Special School.  We also went through a similar process when working out where our other (neuro typical) son goes.  Who knows where you will end up.

Even more Sensory Boards

I made some more sensory boards the other day.  They can be used to touch and feel or a wall decoration in a sensory room (they will catch the light).............These are so easy and quick I had to share (both took me less than 15 minutes to make):

You need:

• 2 plastic chopping boards (I got these ones from Daiso)
• Pre-curled ribbon for presents (exact number depends on the size of your board)
• Present puffs or other decoration
• Stick on velcro
• cable ties
• drill
• nail clippers

Instructions for the "fish":

• Drill two holes for each ribbon you have
• Take any staples out of the ribbon

• Attach to the front of the board with a cable tie and tighten as much as possible, trim cable tie with the nail clippers

• Hold both sides of the ribbon together, put a cable tie around it and tighten as much as you can (this is so it won't be able to be pulled off the board).  Trim cable tie with the nail clippers.

 Instructions "Pom, Pom apple"

• Stick two strips of velcro on the cutting board
• Place a small piece of the opposite side of the velcro on the back of the pom poms.
• Attach the poms poms to the cutting board

NOTE: I use the velcro as the double sided tape on the back of the ribbons and poms poms tends to be useless (they will continually fall off) and it means I can replace one very easily if one gets destroyed or tatty.  I don't recommend continually removing and reattaching them, they will not last if you do that.

If you want to see some of the other boards I have made you can find them at on these links
http://hintstipsandhacks.blogspot.com.au/2015/06/how-to-make-your-own-sensory-boards.html

http://hintstipsandhacks.blogspot.com.au/2016/06/continuation-of-how-to-make-your-own.html

Welcome to the "Club" you didn't apply for.

This is a little removed from my usual tips and hacks but it might just help someone. This is for those just starting their journey.  A few tips and lessons learnt to help you on your way.

There is no right or wrong way to feel

Don't feel you should react in a particular way.  I am my harshest critic. I felt I should instantly know how to cope, instantly feel at ease with Owen's issues and basically have no adjustment time (how delusional of me!).   So when I did not feel that way, I thought I was not meant for this road.   I suffered greatly from depression and anxiety. I was resentful, in denial, thought my life was over and thought I did not have the strength to do it.  Although I do admit there are some mums who just take to it like a duck to water I have found very few.

  
Most (like me) were terrified, felt like they were drowning, felt like the carpet had been pulled out from under them and felt ripped off.  They did not get the baby they "ordered". I know we don't "order" babies and that is a harsh way of putting it but it is an accurate way of putting it. We have dreams for them from way before they are even conceived, expectations of healthiness, expectations of the life they will lead and the life we will lead. We have so many images in our heads it is no wonder when we are presented with something that does not match that, it overwhelms us.  Often we are not even given images to replace the ones we have. 

Love is not always instantaneous.  In the very early days I felt like I could not give Owen the life he deserved nor the unconditional love he deserved. I felt I was not capable of looking after him and that I would never look at him without regret for missing the life I had imagined. I was VERY wrong about ALL of these things and it it took time to learn and feel that. I love him unconditionally and see nothing but beauty when I see him.  I no longer see the path I imagined all those years ago, I see his path and am OK with it.

If you are starting your journey, be gentle on yourself,  don't judge your feelings, feel them, accept them, allow yourself time to grieve, don't look too far ahead just look at the next step you need to take and concentrate on that.  The rest will come.

It's OK to be terrified

As I said above, most mums and dads are terrified. You have imagined a set path, where you can see everything but you have ended up on a unknown path in the dark. You can't see where you are going and you are worried to take a step.  You are worried you will trip and fall over, step on something scary or even find nothing in front of you at all.  Don't worry you will adjust to the dark and be able to see where you are going.  Even better, eventually the sun will come up for you.  I promise, this feeling will pass, it will become easier and less terrifying. 

You are not alone

I felt very alone. Although family and friends were supportive I felt alone as they had never been on the path I was on.  Then I went to a playgroup at a special school, joined some website forums (this was before Facebook), got connected with therapists that could help and guide me.  I suddenly found I was a member of a club, that welcomed me, that welcomed Owen.  A club that didn't care if I was late, tired, cancelled at the last minute, didn't' feel like talking or that I felt like crying.  The club didn't care that Owen vomited or screamed.  They cried with me, offered tea or coffee, offered advice. We supported each other.  So find a playgroup, join some online forums or Facebook groups.  Connect. 

You are not special nor are you chosen

I used to think this.  Special kids are only given to special people who can handle it.  It is something people like to think, as they admire what we do and how we do it. They also don't think they can do it.  I  did not put myself into the special category and still don't, so when faced with this path I panicked as I did not meet my own expectations.  So here are the facts. I love Owen and do my best for him, that is what a parent does, ANY parent. It's just that I had to learn different parenting skills.  It is special but doesn't make me special.

It's important to seek help and set-up networks

Don't try and do it alone.  Get counselling (professionally or otherwise), see your doctor if you aren't coping.  Look into what networks/organisations there are around you that provide advice, therapy, respite etc, and register with them.   Join playgroups for special needs kids, accept help from friends and family.  Look after you.

Never compare

NEVER EVER.  Not only should you not compare your child to Neuro typical kids, you should equally not compare them to other special needs kids.  They are all different and on their own path.  Even in the same "syndromes" the pace of development can be poles apart. Comparing can lead to disappointment and unrealistic expectations and more grief for you. So just don't do it.   

Don't look too far ahead in the early stages

I tried but it just terrified me.  Here are the facts, your child will develop at his or her rate, your job is to help that.  The development or lack there off  that you are imagining may or may not come to pass.  Rules, day programs, job programs, funding etc may look different by the time your child gets to the age to use them, so what is the point of worrying about it now.  It helps to just think of the present and immediate future.  Just think of your next step or two.  Help them with what you can now, don't give up.  The rest will come and you will know when the time is ready to think about it.

It will get "easier"

I promise it will.  I can't promise it will always be easy and you won't experience a challenge or two (or three or four) but I can promise you, you will find ways to cope, it will be less terrifying and you will adjust.  

Whilst you might not feel like it now, you can do this and will want to do this. 

Welcome to the club xx