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

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.

Just how much does he understand?

Tonight on the news there was an item about a baby in NICU. Afterwards Phil was helping Isaac finish his dinner, they were talking and long story short, Phil said "you were sick like that when you were a little baby, but you're all better now."  Isaac said to him with a sad face "I fall down." "Yes, you fall down more than other kids, but you're getting better at walking, and you'll be able to do it buddy."  "OK Daddy" replied Isaac.

When Phil told me what happened, I wanted to burst into tears and hug my precious little boy.  It also makes me wonder just how much Isaac knows and understands about what has happened to him.  But it's amazing to see the faith a young child has in his father.  Isaac trusts Phil implicitly, and believes that if Dad says it's going to happen, it will.

As I've said before, Isaac loves going to Champion Centre.  The therapists are fantastic, and they think that Isaac is great.  But I have to ask you, who wouldn't love a little cutie like him?  Computer therapy involves singing and stories, counting, pushing buttons and popping bubbles on the screen.  As if that's not incentive enough, there's usually a reward of stickers for a session well done.

There are always interesting toys to play with and textures to explore in play therapy.

Isaac enjoyed standing to play with this puzzle track.  It's a lot like the car tracks we have at home, only this one is painted in pretty colours.  I am amazed at how well his balance is improving.  It's hard to believe that he's only had his walker for two months.  What a difference it has made.  His confidence has grown, and his brain is learning what is required to keep him up and steady.

Before he got his walker, Isaac often used to practise his standing and balance on the trampoline.  This is great since it's got a rail to hold onto, no falling and breaking your wrist with this one!

Another thing that Isaac has been doing regularly at home since he started at Champion Centre is singing.  And music therapy is all singing. When he getting into his carseat, we sing up, up, up, and then when he sits down, we sing down, down, down, raising then lowerly our voices.

The sound cradle is really cool.  I've never seen anything like it before.  It's stringed like a guitar or harp or something, and when it's played, the sound waves vibrate through the wooden cradle.

Look at the balance and concentration.  Aren't those ribbons moving beautifully?  Not only does this work on on balance but moving the arms across the centreline of the body, both horizontally and vertically.  Think that I've got that right.

Lots of concentration here matching the shapes and colours then getting the shape into the hole round the correct way.

It's not surprising that when Isaac has finished his morning of therapy that he is super tired.  So tired that sometimes he is almost asleep in the car by the time we get to preschool - less than 2km away. When he gets to preschool, it's lunch time, then he goes down for a nap.

What's happened between then and now?

After we got home from NICU, Isaac continued to show progress.  However, we still didn't know what we were going to be faced with over the coming weeks, months and years.  A really important part of his ongoing care was through an early intervention program, which works in conjunction with the hospital to ensure the best outcomes possible.

There are four options for early intervention care in our city.  We couldn't get into The Champion Centre, which is near our home, and has a fantastic reputation.  In fact we only had one option, all of the others were full.  I guess the benefit of the program we ended up under, was that they came to you, instead of you going to them.

Reuben (4 years) and Isaac (6 months)

When Isaac was 14 weeks old, I went back to work part-time.  Sometimes you just gotta do what you gotta do.  So he was in the nursery at the same preschool Reuben was at.  This was great, as it meant that Reuben could pop over and visit his little brother.  Also meant that I only had one drop off and pickup each day.  Reuben just adores his little bro.
He was seen by the speech language therapist and developmental therapists until he was nine months old.  At that time he was discharged from that part of early intervention because he was less than 25% behind a typical child.  I wasn't very impressed, but figured that if there were problems going forward he'd be able to get more help. 

Reuben (4 1/2 years) and Isaac (12 months)

So we did the appointments, and Isaac made really good progress.  When he first laughed, the sound was awesome, and the feelings that it generated were almost overwhelming.  Fortunately he has been able to eat regular food, although he doesn't do well with anything that requires much chewing, and has started talking.

Physically he has made steady, albeit slow, progress.  Watching him learn to roll over, sit, developing through to commando crawling, bum shuffling, and then back to crawling.  It was progress, but  I was starting to wonder if he would ever walk.  I know that I should have been grateful that he was progressing, and we weren't facing worse case scenario. 

Isaac (17 months) at preschool

So, two months ago when we had our appointment with the Neo-Natal Consultant (NICU babies usually get "upgraded" to Paediatrics between 2 and 3 years of age), I decided that it was time that we got some action on Isaac's development.  I went in with quite a list of things that I wanted to have checked out.  Since then Isaac has had an EEG to determine if he is having absent seizures, seen an opthomologist for possible lazy/cross eye.  He drools quite a bit,  I have found that he doesn't like eating food that has to be chewed very much and a lot of his words are difficult to understand.  We are currently waiting on a referral to speech language therapy.

Isaac has gotten to the point where he can stand if he's leaning against something and walks around holding onto furniture.  If he tries walking by himself he is very unsteady.  The issue is that the brain damage he suffered is in the area that affects balance.  He is now seeing his physiotherapist more regularly and got a walker about 3 weeks ago.  This has made an enourmous difference to his walking, balance, social interaction and confidence.  He loves the independence it's given him, and can't get enough of going to the mall.

First day of cruising at preschool with his walker

There are currently vacancies at the Champion Centre.  Tomorrow there will be a meeting to determine if we can get Isaac in.  I'm praying that he will be accepted, as I believe that they will help him to progress even further.