. . . in all seriousness, thanks for stopping by! This blog will no doubt evolve over time, and will include all sorts of content. My aim is to let you know what we're doing as a family, how I'm coping as the mum of a child with Cerebral Palsy, and a variety of other things too.

If you are the parent of a special needs child, I pray that you will find encouragement, hope and support within these posts. I'd like to get to know your story too, so be sure to leave a comment.

I hope you'll come back soon.

Sunday, 24 March 2013

Preschool Challenges

A friend of mine, who is studying Early Childhood Education, sent me the following message:
I'd like to tap into your experience and expertise in having children with what is now called "diverse needs." For my studies I'm writing a paper on inclusive practice in early childhood education. I was wondering if I could ask you to reply to me and tell me what you've found to be challenging or beneficial in your experiences with your little ones in preschool.
Any info you can give me would be great! Even if it's just a quick reply, I would be appreciative of any insight you can share with me!!
This got me thinking, and her a more detailed response than I think she was anticipating!  It's also given me the content for another post...

We had issues at the very beginning with Isaac's enrollment, due to him having had seizures when he was in the NICU. I went back to work when he was just over 4 months old. Was very upsetting, since they knew exactly what had been going on since the day of his birth, and Reuben had been there for the previous 2 years. Anyway Isaac hadn't had a seizure since the NICU, but they had to sort out their procedures for what to do in the event that he did have a seizure.
Fire engine at Kids Karnival
About a month after he started he had a cold, and started to refuse his bottle. This was expressed milk, so exactly what he was used to. I always joked about my boys having Tui on tap! (the beer..). It got to the point where he was going for his full 6 hours without any food/fluids. In the end the SLT at the hospital suggested using a sippy cup, because she didn't want him to continue getting feed via a syringe (I told preschool to get the food into him any way they could and I suggested a syringe, because I knew he was fine taking his meds via a syringe).
Apart from that, Under2s at preschool was fairly good.

Fishing from the balance board - making great progress!

 I think that I really noticed the differences, etc when he moved through to the preschool. He was moving about by bum shuffling and crawling. Which in itself wasn't too big of a problem, but when he was out in the playground, the teachers would get him to head instead about 5 or 10 mins before kai time, etc so that he had time to get in there before all the other kids came in.
I'm trying to make this as useful as I can for you, but I think it's going to make me cry. I'll try to keep it to preschool, because there were downfalls in early intervention, and it was only because I kept pushing and advocating for him that he finally got the additional support of his walking frame.
And the rolling walkie thingie...

Now that he is walking independently (Yay, Isaac!!!!) I'm noticing other things. Although cognitively he is at or ahead of his age, physically he is still struggling. The other week they had some mini balance beams (that's the best way I know how to describe them) in the classroom, and had the children running and jumping over these. For Isaac to step over these by himself would be a struggle. He can manage the tracks of a ranchslider, or small steps without having to hold on. But these were a good 10cm off the floor, probably 10cm wide, and in the middle of the room with no support for him to hold on to.
Another day they had the obstacle course outside. Isaac is a determined wee boy, and I would consider myself a fairly tough mum, in that I get him to do as much as possible for himself. But when there are things like obstacle courses and the like, I'm not sure what kind of affect it has on Isaac and his self confidence. He knows that he has a disability, and that he's not the same as other kids his age.

When he was about 18 months old there was an article on Campbell live one night, about a baby that had been in NICU, intubated, etc. And Phil said to Isaac, that he used to be sick like that when he was a little baby, but he's not sick any more. Isaac, with sad puppy dog eyes, said "But I still sick, I fall down all the time." It made my heart break. But it also told us that he knew what was going on, and that he wasn't the same as other kids.
Now that Isaac has turned three, he will qualify for an ESW at preschool, one morning/afternoon per week. Just waiting for that to get sorted, hopefully not much longer.
The current challenge is toilet training. I know this can be a challenge for lots of parents, but when the boy is wobbly on his feet, this provides added challenges. Guess I'm going to need to work more with his therapists, to get the information and strategies, and then pass those on to preschool.

Isaac's ESW (Education Support Worker) starts on Tuesday, I'm really excited as she is someone who spent time working with Isaac last year.  The ESW is assigned by Champion Centre and reports back to Isaac's therapists and us on a regular basis.

Champion Centre has to fund raise large amounts of money each year to continue providing the fabulous service that they do.  Last weekend was their annual fair where my boys had heaps of fun: ice creams, bouncy castle, face painting.  Afterwards, I had heaps of fun playing with photos editing apps on my phone.

same photo

different looks

layered looks

all at the click of a couple of buttons

Sunday, 17 March 2013

Christmas/Summer Holidays 2012/13

Christmas is always a fun time when you have little ones.  The one just gone was no exception.

We had a family gathering at our place with Phil's family, then I took the boys down to Mum's while Phil got organised for our camping holiday.

I made a big decision, and decided that Isaac didn't need to take his walking frame.  So Phil packed the van, and we headed down to Timaru.  There is a carnival at the Bay every year, including an amazing fireworks display on new years eve.

We had a great area for camping, away from a lot of the traffic.  Uneven ground and shingle drvieways, were a challenge for Isaac, but by the end of the week, he had mastered them.  Reuben mastered his challenge of riding his bike.  I'm so proud of both boys.

A friend of Reuben's camped there for a couple of nights, and the boys were all out playing spotlight on new years eve before we went down to the carnival.  Both Reuben and Isaac had new flashing shoes, so we were able to see exactly where they were during the game.

A lovely relaxing time was had by all!

Sunday, 10 March 2013

Sunday morning

We all know that getting out the door on time in the morning can be a challenge, even if it's on the weekend to get to sport or church.  Even if the kids behave it can still be a challenge.

Dad’s Pool of Peace – by Phil Brewster

I got out of the shower
The boys own the airways with disobedient fun
Has Isaac’s nappy been changed?
I…Shoooosh Reuben I told you, I need to hear mum,
Now what did you say?
Yes but the boys need to do their teeth
Reuben interjects, but we haven’t had breakfast.
You said you had breakfast!!!!
No – well I had 5 weetbix
Well I was hungry – and I gave Isaac one too.
Well... that’s breakfast
But we didn’t have milk on it!
It still counts as breakfast! Did you have five weetbix without milk??
Well… you’d better go and have a glass of water,
or your poo pipes will block up!!  And it will really hurt.
Big eyes, gulps water, a moment to think, time to eat.
They’re moving to the door now.  I don’t want to go
to church today I say.
Fine, then you can hang the washing out, and thanks
I could have had a shower.
Bye Dad… the door shuts… I’m still… standing…
Now my heart slows… silence…
The clock ticks, welcome
The kids have gone
And a pool of peace wells around me
My legs say sit, the jugs boiled
But I dare not break this moment.

Monday, 4 February 2013

Momentous Occasions 1,2,3,4

I was meant to write this next post on Christmas and our summer holiday.  Promise, it is coming, but I have way more exciting things to share about today!

Last week was one featuring numerous momentous occasions.

Isaac hadn't used his walking frame since before Christmas, so we gave it back to the Physio!  This means that Isaac is officially walking independently.  It was a surprisingly emotional moment, and I was soooo proud of my little guy.  I guess it felt like the end of an era, with unimaginable possibilities on the horizon.

Feeding a friendly duck on the front lawn

Later in the week, we were invited to speak at a NICU staff training meeting.  It was great to see some familiar faces from the time that Isaac spent in the unit. And to have Isaac show off his walking and speaking skills.  Some of them remembered how sick he had been, and were almost stunned at how well he is doing.  It's also quite amazing the extra bits of information you pick up when talking to people.  A year ago, I found out that Isaac had been one of the longest resuscitation that had been performed in the NICU.  This time, I found out that a contributing factor to Isaac's outcome was because one of the neo-natal consultants was present in theatre when he was born.  He was able to get top of the line care immediately after his birth.  She had to use the oxygen at a much higher pressure than is normally used, which did compromise his lungs.

Check out my new glasses
Yep, I'm a showoff!

Next up was getting Isaac glasses.  He's had a slight squint (cross-eyed).  We'd been to the ophthalmology department at the hospital a number of times, and finally before Christmas they decided that he needed to see the specialist.  Upon seeing the specialist in the new year, he recommended that we get glasses for Isaac with the intention that it would correct the squint.  It was really easy to sell him on the idea of wearing glasses, as I wear my a lot of the time, so Isaac was quite happy to be just like mummy.

Bubbles and water wars

And last but not least, Isaac's third birthday.  We celebrated with a "bubble" party and had a mini water theme park set up on our front lawn.  It makes a nice change, to have a birthday party in the mild of summer - Reuben's birthday is middle of winter, so we always have to plan for an indoor activity.  We had a great time with friends and family celebrating with us.  It's amazing to think what we've been through in the past 3 years and what a blessing our boys are.

Sunday, 13 January 2013

Watch out 2013, here we come

It's hard to believe that 2013 is here already.  I feel like I have been incredibly slack, reading hardly any blogs over the last couple of months, and writing no posts of my own.

In my defense, there has been a lot of things going on over the past few months. I was struggling with the necessary change in mindset between working in a high performance sport environment, and then being at home with a child who has physical disabilities. The company that I work for was in the process of restructuring.  I decided, since I'd been there for 5 years, that it was time to look at moving on.  After numerous applications and interviews, I secured a position as financial administrator at the Cochlear Implant clinic.  I've been there for a couple of months now, it's been a steep learning curve, but I'm really enjoying it and am slowly getting my head around everything that this job entails.

We've been having problems with Reuben's behaviour over the past few months.  I was getting really bad - hitting, kicking, biting, swearing, name calling, throwing things, etc.  I was finally able to get some help to put some strategies in place to help me deal with and diffuse the behaviour and the anger.  A lot of kids in Christchurch have been having problems due to the ongoing stress from the earthquakes.  I wan't sure if that was what caused Reuben's problems, or if it was because he was a 6 year old boy, or because he had a younger brother, or if it was because he had a sibling with disabilities.  Probably a combination of all of the above in varying degrees at any one time.

I went to a session at school that was put on with clinical psychologists talking about what to do with kids that have been suffering from ongoing stress.  It was an okay session, but I was pretty down by the end of the session,  To be honest, if it was just the earthquakes I could handle that because I know that they're not going to be forever.  But it really highlighted to me that Isaac's disability was going to be ongoing, like for the rest of his life.  Not quite what I was hoping to get out of the evening.

I've been talking with various people who read my blog, and it has been really encouraging to hear some of their comments.  One couple in particular, we met at the mall one weekend.  They said that it was great how not only did we get Isaac out and about, but also that we were open with other people about the experience we were going through.  Now, any of you who are reading this at the moment who have special kiddies, will know that as a blogger you don't put everything you're going through in your posts.  But I'm pleased that I'm able to give people a bit of a glimpse into our Tutti Frutti life.

One of the additional benefits that I've received from having Isaac at Champion Centre, is the connection that I've been able to make with other mums.  I never realised how isolated I was until I hooked up with a group of champion mums (past and present) who go out to dinner and socialise once every six weeks or so.  It's great being able to share experiences and concerns with others who are on the same page and a great excuse for a night out.

What's Isaac been up to, I hear you ask.  Well, let me tell you just how fabo this little guy is! Each week at his therapy sessions he works really hard.  So hard in fact that he can hardly keep his eyes open on the two block drive from Champion centre to preschool.  The therapists and teachers all say how much of a pleasure it is to see him each week.  He has worked so hard and progressed so well, that he is moving to a different session when classes resume after the summer break.  This year he will be going fortnightly instead of weekly.  There's some down sides about that - not being with friends and teachers that we know and no computer sessions :( But on the plus side - meeting new friends, new challenges, new teachers.

We had some new front steps installed.  The rise was too deep for Isaac and he struggled to walk up them by himself.  Now, although they come out a lot further, each step isn't as deep and with that combined with the handrail that got installed at the same time, he can now walk up and down the front steps by himself.  It also means that he can go out and play with Reuben or the neighbours without the need for me to stop what I'm doing to help him down.

Mid December Isaac had an appointment with the Paediatric Neurologist.  He'd been referred by his neonatal consultant, who had also said that she'd be passing him on to the developmental paediatricians. When we met with the neurologist, he said to us that since we'd been referred to him, there wasn't much point in seeing the developmental paediatricians too.  So he would take over managing Isaac's case.  Sounds like a good plan to me.

Over the last few months, Isaac has been relying on his walker less and less.  The week before Christmas, I decided that he didn't need to take it to preschool.  Most of the time he's dump it anyway, and we'd have to go looking for it before we went home.  Going to the mall has started to be easier (and quicker) if he holds my hand, or walks independently if there aren't many people around.  Result - he hasn't touched his walker in  4 weeks!

Bye for now, I'll be back soon with more on Christmas and our summer holiday...
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