Tag Archive | global development delay

Life gave you lemons? Make lemonade!

Owning a cleaning business means that I get to know my clients fairly well through their possessions. As an avid book reader, I always take an interest in books people are reading for literary inspiration.

Recently, while cleaning a house for someone whose son attended the same Early Intervention Program as my daughter, I came across a book on the coffee table titled “Parenting a child with Sensory Processing Disorder”. Since this is a bit of an issue in my household, I had a quick flick through and enjoyed what I saw. One excerpt caught my attention as it was highly relatable and explained parenting special needs quite well.

In the book, it is titled “Holland Schmolland”…I am going to  loosely quote it, but if you get your hands on the book, you can read the full story.

 

The book that generated this post

The book that generated this post

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy — you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, “This isn’t exactly what I had planned, but it’s not so bad. It’s just different.”

Reading this inspired a topic. The analogy is pretty much smack on perfect for parenting special needs.

While trying to conceive, and/or during pregnancy, you envision your child and how life is going to be. It is going to be textbook perfect, reaching milestones at the right ages, they are going to grow healthily and happily and life is going to be picturesque.

Then all of a sudden you get slammed with (in our case) milestones not being reached, resulting in hours of therapy, or serious health issues that require ongoing maintenance or care.

A personal example that echoes the analogy is my son’s cystic diagnosis. It was earth shattering when we got our diagnosis. I was in shock. I was upset. I was thinking “What on earth did I do to deserve this?” The night of his diagnosis is a bit hazy after the doctor said the words “Yes, he has tested positive for cystic fibrosis.” but I am pretty sure I said those exact words to my mum when she rocked up to the hospital that night.
Almost four years on, I am impressed at how well he has been! I was expecting to constantly be in and out of hospital with his CF. So far, we have only racked up two CF-related hospital admissions since diagnosis (then, also one overnight admission for acute tonsillitis) While CF is very prevalent in our lives, it is easy to forget how much it has impacted your life. I talk about CF all the time (probably too much on some people’s eyes!) so we never forget about it,  but we have had it pretty easy so far!

You can pretty much use this analogy for all things in terms of pregnancy and planning your life. The little munchkins have their own plans and will never follow what you envision.  There is no point running around like a headless chook, it doesn’t change the situation.
Best thing to do is to just roll with it as best you can!

A quote I recently saw on Facebook made me giggle, but is fairly true is: “If life gives you lemons,  make them into a chocolate cake and leave everyone wondering how the F@#K you did it!”

Bella :)

GIANT decisions

Howdy readers,

Tonight’s subject is a bit of a touchy one. I have been wanting to write about this for a little while, and after a couple of glasses of wine, inhibition have flown out the window, allowing me to write about a bit of a taboo subject.

I am constantly asked one of two questions. “Are you going to have more kids?” or “You aren’t having anymore kids…are you??

My answer is always the same: While I feel like my body has the ability to have one more child (and I would love to have another child, especially another little girl) My husband and I have enough factors against us to not have any more.

The movie the inticed my husband and I to have a large family

The movie the enticed my husband and I to have a large family

My husband and I had always decided to have a big family. Hollywood effected us a bit in this department due to the movie Cheaper by the Dozen. While we knew that no way in hell were we going to have twelve kids, we agreed (for a while) that seven was going to our magic number. This was taking into account “whoops” babies, and the high possibility of twins.

Our first child was planned, although he came along a lot faster than we intended. We were expecting to by trying to conceive for a while….it only took about two months of some-what trying (not exactly trying, but not exactly stopping it either) A few false negative home pregnancy tests left us shocked at our first ultrasound when I was seven week further along in pregnancy than we thought. Though, we were excited. We had recently bought our first home together and were ready to start a family.

But then I fell pregnant again six months later (whilst I was on the pill)….then amazingly, I fell pregnant within seven weeks of giving birth to my daughter! Just a year after giving birth to my middle son, I fell pregnant again (and again, while on the pill!)

Four single births in four years is a damn good effort!! But this is not the reason why my husband and I have decided not to continue on to our goal of seven children.

As you all know, my eldest two have significant development delay. It is something that seems to run in my family, with other family members that have had development issues as well. But most significantly, our youngest son has cystic fibrosis. If you have listened to me ramble on enough, you would know it is a genetic condition that has to come from both parents. This is the main (and its a very big one!) reason why we aren’t having any more children.
We have had such a good run with my youngest son.After he was diagnosed,  I was expecting to be constantly in and out of hospital. We have been incredibly lucky to have only had two CF related hospitalizations (one other was due to a bad case of tonsillitis)

What if we aren’t so lucky with the next child? What if that child is very sickly and has a lower quality of life? Since two CF people aren’t meant to be in close proximity of each other due to a high risk of cross-contamination….what if the new baby (if it had CF) makes my youngest son even more sick. Since we have already had run-in’s with CF-super bugs, Pseudomonas, what if my youngest son makes the new baby very sick?
Development delay is so predominant in our little herd, what if the next baby has issues as well? That would be another strain on the family. To be constantly one step forward, two steps back. It’s hard enough already!

These are all very important factors my husband and I have discussed about a lot since my youngest was diagnosed. Please do not judge us, but we have decided that should I fall pregnant again (since contraception quite obviously doesn’t agree with me) we would undergo an amniocentesis( or whatever test they do for this sort of thing) and if test results come back positive for CF, we would terminate. I know it would be an exceptionally hard decision for my to make, and will create a lot of emotional turmoil….but it would be the best thing for our family in the long run.

However, we have been blessed with four children already. It was easy for us to be able to say “NO MORE” (even if my biological clock is still ticking for one more…I know it isn’t the right thing to do for us) It was our fourth child that was diagnosed with a chronic medical condition.

But what if it was your first child, or even your second…and you wanted more? Or if you met a new partner, who was also a carrier, and you wanted to have more children with that person? These are the people I feel for as they have so many emotional, and moral, questions to ask themselves.

To quote someone who I spoke with about this issue a while ago….the following questions are the sort of thing that come to mind (and I am just using CF as an example here. Any medical condition can be placed here):

Do you or don't you?

Do you or don’t you?

*What are the issues of having more children with CF? (eg. financially, mentally/emotionally, physically) especially when there is a 1 in 4 chance. (Or if you have CF yourself, and your partner is a carrier, you have a 75% chance of having a CF child)

*Do you have kids knowingly that you risk creating a child that will suffer all its life?

*Do you conceive, then terminate if it is discovered it will have CF? Then does that diminish the value of life for those who already have CF?

* If you go through IVF and discard the embryos that have CF, does that make it any different to an abortion?

* If you already have CF and your partner is a carrier, will you be able to care for the child when you are sick? Do you take the chance knowing it will be a huge toll on your body (as a female with CF)? Do you have children knowing the risk that there is a chance you may die young?

There is no right or wrong answer to any of these questions. The love for family can overcome all of these issues, but then again, it might be too much than you can deal with. Don’t ever feel pressured into such a big decision. It all comes down to what is best for YOUR family!!

I hope I have given you some food for thought.

Bella :)

****EXTRA NOTES****

This post is not about trying to stop people from having children, but more to bring attention to the thought process that plagues some people about extending their family when they know a medical condition is possible.

I know this is a bit of a controversial subject, as it touches on pregnancy terminations, so while comments are encouraged, I will delete any nasty ones!

Are you ready for a long story??

As promised, here is the update on my daughter.

I have mentioned before that she was diagnosed with Global Development Delay and had serious food compulsion

In January, two weeks before school started, we saw our pediatrician, who after some tests, said my daughter had caught up significantly in development and could no longer be classed as GDD anymore, and was discharged.
At the time, I was ecstatic! It felt like a huge achievement…and it was (for a while…but I digress from the series of events)

The lack of diagnosis meant she was no longer eligible to attend her Early Intervention Program anymore, but after talking with the school’s principal, and the head teacher calling me after she heard the news, I was left confident that my daughter would be okay in mainstream schooling.
A couple of days before school started, I met with her new teacher (who has previously taught my eldest son who also has GDD) and made sure she was aware of the food compulsion and all the drama we have had in the past with her development, and her previous schooling. Being that she knows the in’s and out’s of our family drama (CF, GDD, work, army…etc) I was relieved to have such an awesome teacher for my daughter, and trust her completely.

Respiratory check ups are still happening

Around February of this year, the CF team officially said that my daughter does NOT have cystic fibrosis, after deliberating over multiple test results for almost two years. She is a genetic carrier, and has floppy airways…but no CF.
When I told the respiratory doctor about the food compulsion, and all the drama we had with the local dietician and pediatrician, he was immediately concerned. When I told mentioned that it was suggested to me that she might have Prader Willi Syndrome, he said it was his first thought too. I just about leaped over the desk to kiss him for taking me seriously!!
He called in the CF clinic nurse between them they organised referrals for my daughter to see a child psychologist and an endocrinologist.
After being previously being told “She isn’t fat, you have nothing to worry about” it was so nice to be taken seriously. Having two locks on your pantry, a lock on your fridge, “yummy” foods (biscuits and lunchbox items) out in our garage under lock and key, checking hiding spots daily….well…it isnt normal. I think I had a lot to worry about. The weight lifted off me when I had someone (and that someone being a medical professional) agree that it was not normal.

My daughter was marked as “urgent” on her psychologist referral, and managed to get in within four months…not bad considering there was over a year waiting list!! Apparently, there was a bit of arguing between the staff of whether or not for the psych to take on a child that young….but decided to give us a chance and see if it was serious enough.
The doctor was awesome. Within ten minutes, he realised that there was a legitimate problem. Ten minutes after that, my daughter was given the Global Development Delay diagnosis back (by this time, my daughter was starting to struggle immensely with mainstream schooling and our awesome teacher, with her wealth of knowledge and experience,  was even having a hard time dealing with her) I jumped for joy…and again…nearly leaped over the desk to hug the doctor! (hmm…starting a pattern here aren’t I?)

The psychologist agree that Prader Willi Syndrome (PWS) is a high contender for a diagnosis, but obviously, he can’t say anything further until she had a full metabolic screening and genetic scan (since PWS is an abnormality on the 15th chromosome) to rule out anything physical.

After leaving the appointment, I called the Early Intervention Centre, to say that my daughter had a diagnosis again, and we would like to return to finish off the year with some intensive therapy in their classroom, part-time. They told me that a psychologist can’t make a diagnosis of GDD, it had to come from a pediatrician. I was gutted. After talking to our school psychologist, she asked who it was we were seeing. After hearing his name, she said to ignore what had I just been told, this guy was qualified to make a diagnosis as he was also trained as a doctor. (YAY! Insert fist pumping here) 
So I called back the Early Intervention Centre to tell them the update, that she WAS eligible to join the program again. Unfortunately, because the program is so exclusive, autism takes  higher priority on their student intake, and there were two new students with autism due to start. There were no more spots left available (Insert gutted feeling here…again)

My daughter still needs a lot of extra attention at school

So we are still plodding along in mainstream schooling, but the school is actually trying their best to hep us instead of dragging their heels and twiddling their thumbs…especially when it comes to trying to find aid funding to give her extra attention in the classroom.

We have since seen the psychologist again, and autism was briefly considered…which completely knocked me off my feet. I hadn’t ever considered it for my daughter…my eldest son? Yes. but never my daughter.
The idea was quickly discarded though as while she shows some characteristics of autism, there is nowhere near enough “red flags” to warrant further investigation. Though, it is not uncommon for PWS patients to have some autistic traits.

To help with my daughter’s mood instability, she has temporarily been diagnosed with ADHD so that she can be medicated. The doctor doesn’t think she actually has ADHD, just whatever she does have has ADHD tendancies….but he had to give her a label in order to be able to give her medication (it was either that, or bipolar…and neither one of us felt comfortable giving that label to a six-year-old!!)
She is only on a low dosage, and it is mainly to level her moods while she is at school. We are up for review soon and hopefully by then, we have seen the endocrinologist and have some blood results to give us further answers. However, the tablets are making a massive difference to her behaviour and moods. It has even helped her food compulsion a bit!!

This psychologist is awesome. He has told me that he is willing to tweak the system in order to get her an aid at school, as he feels that she absolutely HAS to have one. (insert relieved feeling here)

Still no answers yet

I have to admit, I am nervous as to how the blood test come out. If they tested negative to Prader Willi Syndrome…then we are back at square one of “WHAT IS THIS?”

In the meantime, she is still seeing the respiratory specialists in Perth for her floppy airways. Apparently if she doesn’t outgrow it by the time she is about 8yrs old, she may require surgery. But they aren’t too worried about her lungs at this point as we (and I quote directly) “have bigger fish to fry”
But if it wasnt for the respiratory team taking me seriously…I honestly don’t know where my daughter would be today!!

So there is the long-winded story that I have been promising for months. There is still a lot to go…but at least the ball is rolling!

 

I just want answers….
Bella :)

CF Folklore Story

 The term “65 Roses” came about when a young boy couldn’t pronounce cystic fibrosis. You can find the full story behind it here.

This exact scenario happened to me today.

I was driving along in the car, with my eldest son (almost 7yrs) and my daughter (5.5yrs) who both have Global Development Delay in the backseat.

We passed an ambulance racing off to an emergency, sirens blasting and lights blazing. The kids were very excited. My son turned around and said “My mummy has been in an ambulance!”

“That’s right, buddy! When your little brother was a baby and he was very sick.”

“The ambulance took you to the airport.”

“That’s right. We went on a special doctor’s aeroplane to hospital in Perth. He is still a little bit sick. Can you remember what he has that makes him sick?” (I am slowly trying to get them to understand that my youngest son has cystic fibrosis, and that is why he has medicine daily and has special exercises)

“Sixty-five roses!” he replied.

I just about cried! The folklore story of 65 Roses Day came to my mind instantly. It makes our upcoming 65 Roses Day all the more special now. (25th May…just thought I would remind you all! lol) He said it without hesitation and without prompting. I was so proud of him!

Dont forget that you can donate online to our 65 Roses Day fundraiser at the link below:

http://www.everydayhero.com.au/belinda_giovanazzi

I just had share this little story. It was one of those moments that melted my heart!

Bella :)

 

Insatiable

From a very young age, my daughter has had an insatiable appetite. I’m not talking about the ability to eat large meals. All of my children are big eaters.

No, my daughter takes it to the next level.

It started when she was about ten months old. She would crawl up to our pantry, open the door and eat whatever she could reach. At that stage she was only tall enough to grab from the bottom two shelves, which is where all my baking supplies are kept. So she was happy enough to sit and eat fistfuls of flour!

Lock #1

So being the conscientious parents we are, we put a child lock on the door, up the top. One of those little lever-types that you push down once it’s opened a fraction before you can open it fully.

Time went on, more children were born, earth-shattering diagnoses were made (CF and GDD) and the problem went ignored.

When she got to the age of about four years old, my youngest was crawling around, causing havoc with all cupboards he could find. Our house became Fort Knox, locks on absolutely everything (something we never had to do with the other children)

It was during this time that we realised exactly how big of a problem we had on our hands.

Our daughter would eat anything that was edible…even those that weren’t! I have caught her eating rotten food out of the bin. We had a George Foreman Health Grill (which has now been disposed of) and she would eat the grease out of the grease trap, and I’m not talking just a little bit, no…I am talking about three-quarters of a full container gone! Every day we would walk past where it permanently sat on our kitchen bench to find most of the contents of the grease trap missing.

Then there was the shopping trips. I would have to frisk my daughter before we left the store, often finding Chuppa Chups or small lolly bags in her pockets. The cashiers would giggle, not knowing how much of an issue it really was. I wasnt able to go into the fresh food section of grocery stores for a long time because my daughter considered it an open smorgasboard. It was difficult at times to find time to be able to go shopping “kid-free” to buy fruit and vege.

Once we got home with shopping, so many times while putting the groceries away, I would think “I’m sure I bought some biscuits (for example) for the school lunch boxes. Oh well, I obviously didn’t pull them off the shelf!”, only to find a few days later that the product in question was hidden in those little pouch compartments on the back of seats in the car, the biscuits eaten of course! This prompted a change around in our car of where kids sat so that she didn’t have anywhere to hide food wherever she sat. She is not allowed to sit next to shopping bags on the way home now.

Once the temptation to steal was removed from the car rides, she upped her cause at home. We started finding that she was stealing and hoarding food around the house. I would have to check her numerous hiding places several times a day. Under beds, in toy boxes, behind television units, in her wardrobe, even hiding in highly visible places like in amongst my husband’s numerous baseball trophies! The situation was becoming out of control!

Child lock #2

 

We realised, that although we had that lock on our pantry, her hand was still small enough to fit into the small gap before you push down the lock up top. The time had now come for a second lock on the pantry. This time, one that wraps around the door so she couldn’t get that gap open.

This helped stop the hoarding considerably. It still happens occasionally.

But if anything is left on the kitchen bench, you can guarantee that she will be into it. Nothing gets left on the kitchen benches anymore. I have just discovered in the last couple of days that I am not going to be able to leave my sugar/tea/coffee canisters on the bench anymore, as its beginning to look like she is hooking in to them as well.

If there is a spill on the kitchen bench that I havent wiped up straight away, she will be right there when my back is turned, using her fingers to lick it up. You just hope to God that it is an edible liquid, not chemicals!

My daughter is by no means overweight. She is well in proportion for her age, but if we let her eat the way she wants to eat, she would definitely be.

A lot of people thought we were over-exaggerating the issue, until they experienced it themselves. My mother was one who kinda felt this way, until she found a hoarding hiding spot at her business. Her school didn’t realise it was an issue until I brought it up towards the end of the year. After a couple of incidents there, it made them wonder how many times she may have had an opporunity throughout the year that they missed.

The balanced diet

When we found out that she had tested equivocal on her CF sweat test, there were a few of us who thought that there was a possibility that her eating habits were CF related. However, doctors were relatively confident that it was not CF related, that is was behavioural/psychological (this has recently been confirmed by the CF team, that she definitely does not have cystic fibrosis) About eighteen months ago, we saw a local dietician. We gave her a list of my daughter’s eating habits over a couple of days (well…the food that we knew about) who said she has a very balanced diet. But when she heard that my youngest son has CF and that my daughter was testing as a “maybe” at that stage, she got a bit excited, and told me that we needed to boost her meals with fats like we do with my son who does have the diagnosis. I walked away from the appointment very dubious, so I called our CF team, who were shocked and said under no certain circumstances are we to feed her the CF diet as we will make her sick! This is exactly what we were thinking, so it was a sigh of relief to hear it from the experts. The CF team said that they will deal with her diet until a diagnosis (good or bad) is reached.

We have been stuck in between a rock and hard place with this. Since the equivocal result, the CF team were saying “Not CF related, not to do with us” (even though they are helping us out now) and local psychologists have been saying “Well, it could be CF related, so we can’t deal with her yet.” But since the doctors have said no CF, but still has respiratory issues, they are working out referrals for us to see child psychologists locally. So I will let you know how that goes.

It has been suggested by a few people (non medical) that she may have the eating disorder, Prader-Willi Syndrome. I brought it up to our pediatrician (have I mentioned that I don’t like her??) who said, off-handedly, that she doesn’t show enough criteria for it. I don’t even know what the criteria is, except the overwhelming desire to eat…and eat…and eat.

I’m hoping to get in to see a child psychologist soon and get some answers. I’m worried about when she starts pre-primary in a few weeks. I don’t want her stealing other children’s lunches, nor do I want her to be this notorious child who is rummaging through bins while everyone else is in the playground. Thankfully, she will have the same teacher that my eldest son had when he was in pre-primary. She is a “no-nonsense” teacher, who will take my concerns seriously and will keep an eye out for us.

I will let you know how we go, but I would be interested to hear from anyone out there who is going through a similar situation!

Bella :)

 

Good News!

A couple of weeks ago, my daughter (aged just over 5 years old) had a pediatric appointment.

It was a follow-up appointment from thirteen months ago when she was diagnosed with Global Development Delay. From that diagnosis, my daughter had a year of speech therapy appointments, occupational therapy appointments (like her older brother) and attended a kindergarten that had a specialized Early Intervention Program. It has been a very intensive year for her.

Anyway, back to the appointment.

The pediatrician conducted a Griffiths test on her to see how she had come along over the past year.

After going over the scores, the pediatrician concluded that while my daughter is low-average in development, she is no longer classed as having Global Development Delay! YAY!

She has now been discharged from the pediatrician, but is still on the therapists books, just in case she still needs assistance as she makes the transition to pre-primary. I am a little concerned over the fact that I don’t know if she will still be able to attend the Early Intervention Program this year, as she could definitely benefit from another year, but without the “label” of GDD, is she still eligible to attend? (I will keep you updated on that, I should find out next week before the school year starts)

This is weight off my shoulders, as it means one less child to attend therapy appointments for. We still have the respiratory clinics for her, and we are about to embark on the next trip of seeing psychologists for her eating habits (whole other subject….in due course!)

Hopefully we will still see her come along in leaps and bounds. Wish her luck for her new year at school!

Bella :)

Happy Birthday to the Queen of England…from my son

Last Friday, Western Australia celebrated the Queen of England’s birthday, despite the fact that her actual birthday is sometime in February…I think. To honor Her Majesty, the state is given a public holiday (the rest of Australia celebrate it earlier in the year)

This year, Her Majesty happened to be in Perth for the Commonwealth Heads of Government Meeting (CHOGM) at the time the state was in celebration.

CHOGM 2011

My eldest son, who is six years-old and has Global Development Delay, was obviously told by his school teacher last Thursday that it was the Queen’s birthday the next day, and that was why they didn’t have to attend school. My son was incredibly excited.

He came running out of class at the end of the day, saying “MUM! Mum! Guess what!! It’s the Queen’s birthday tomorrow!”

Me: “Yes it is, buddy. Guess what! She is in Perth at the moment, too!” ( for those who don’t realise, we live 450km away from Perth!)

His eyes light up and he went racing back inside to tell his teacher his latest findings. When he came back out of the class room, he announced “It’s the Queen’s birthday tomorrow, and we are going to her party!”

I had a little giggle, and broke the news: “Sorry, buddy. She isn’t having a birthday party, so we aren’t going!”

"But I wanna go!"

Well….the water works nearly started right then and there!!

“But…WHY???”

I had to go on to explain that she lives in England, in a big castle in London, and that is where she has her birthday parties. England is another country and there is a lot of water between Australia and England.

“But how do we get to England?”

I told him he could either fly over the water or go on a boat.

“But, I only have hands…I cant fly! *groan* I’ll have to go by boat then

I had to break more bad news…he still wasn’t allowed to go to England! But I gave him an option which made him much happier. I said he could write a birthday letter to the Queen, and I would send it for him.

He still talks about England constantly, I told him that he can go when he is eighteen years old and can get a passport to go (he really wants to see English snow!), and he tells me every day “The Queen’s birthday is finished now!”

His card for her is nearly ready, but can anyone tell me where I can send it for him?

Bella :)

The Blame Game

A fellow CF mum contacted me recently about an interesting topic that I thought I would write about.

DNA- it's a complex thing

How would you feel if you knew that you were directly responsible for your child’s medical condition? This is something every parents who has a child with a genetic condition will surely think about. A part of the emotional processing is wanting to blame someone. It’s completely normal to feel like someone is at fault.

 

With cystic fibrosis, a patient needs to have the defective gene from both parents.

 

My husband and I had no idea that we were genetic carriers until my son’s diagnosis. I didn’t really give it much thought at first about the fact that a part of me was to blame. My son was extremely sick at diagnosis, so it took my focus away.

 

In all honesty, I have never really blamed myself for my son’s CF.  As far as I am aware, neither has my husband (hard to say, as he is one to keep thoughts like this close to the chest) There was no way of preventing it from happening, and I was accepting that it has happened, we just need to deal with it now.

 

I have other family members who, despite the fact they aren’t going to have more children,  have considered getting themselves tested to see if they are genetic carriers, just so they know where it came from. I honestly feel that if these people were to undergo the testing, it would be giving them fuel to blame themselves, when there is no reason to. What happened, has happened. There is no reason to go around pointing fingers.

 

Easier said than done, but try to strip yourself of the emotional burdens!

At the time of my youngest son’s diagnosis, my older children were starting the process of being diagnosed with Global Development Delay. This is when I started wondering what was wrong with me. I had three children who were having development issues (and I have a history of development issues in my family). While the doctor isn’t considering it, surely there is some sort of hereditary reason for it? One child with problems, it happens. Two children, that’s really unlucky. Three children…there has to be something going on! A lot of these feelings are because of the frustration of not being able to find a diagnosis (there are names for everything these days…cant we find something?) therefore, we can only access a limited amount of resources to aid their development…but that is another subject.

 

I have said these to a lot of other mums who have gone through similar things (such as premature labour, gestational diabetes, children with medical conditions) there is nothing that you could have done. Unfortunately, the odds and percentages sometimes don’t work in your favour. You just need to put aside the guilty feelings and concentrate on what is important…the small humans that create chaos in your life!

 

I hope this makes sense to you readers, and you own opinions/experiences are encouraged.

Bella :)

GDD update

Sorry for being so quiet lately!! But I’m sure you can imagine it gets pretty busy around here at times.

I have mentioned before that my eldest son has Global Development Delay (GDD). He was diagnosed with this about two and a half years ago, when he was around 4 years old.

We probably always knew that there was something “wrong” with him in the early years, but we kinda stuck our head in the sand with the thought “It’s all good. He will catch up in time!” But it was when he started kindergarten that the truth hit home.

We chose a very small private school, which my niece also attends and is flourishing. He was not toilet trained, but they were willing to work with us about that, well, they were at first. After that first day of school, one half day, the teacher came out to me when I was picking him up from, took me aside and said that we needed to get him in to see a speech therapist, occupational therapist,  and pediatrician urgently. They informed me that it was in his best interest not to return back to kindy until he was a bit more “sorted” (for lack of a better term) I was in a bit of shock, but I knew she was right. I spent the rest of the afternoon in tears though.

So we pulled him out for the term, hoping to at least get him toilet trained to send him back.  However, a term turned into a semester, and a semester turned into a year.

Over the next couple of days, I sat down and wrote a list of things that didn’t quite add up. I wrote the little things like how he was obsessed with tags on soft toys (he would wrap them around his fingers while sucking his thumb. It was his comforter. Cut the tag off and he wouldn’t touch the toy again) to the major problems like his daily multiple violent meltdowns that could last for hours, significant speech delay, and the toilet training (or lack thereof)

I was surprised when I was finished that I had written three pages, back to front!

Looking over it all, a little voice in my head said “It sounds like autism!”  I did my research and found that I could tick off about 90% of the usual signs of Autism Spectrum Disorder. I felt, and still feel, that he had Asperger’s Syndrome, a form of autism on the spectrum. I havent mentioned everything that was on the list, so you may look and that and think “Nah, doubt it!”

As our town doesn’t have a resident pediatrician, we have one that flies into town every few months, and there is a long waiting list.  So in the meantime, he started speech therapy and occupational therapy. We enrolled him in a daycare with a kindy program so that he could be around children his own age more often.

Last year, he started pre-primary. With the diagnosis of GDD, he was eligible for an education assistant during class. As he was (is) a flight risk, she would hover in the playground as well.

I have no idea where we would be if it wasnt for her!! She is an absolute star. She has the “My way, or no way!” attitude, which my son really responds to. Of course they batted heads along the way, but she was a huge helping factor in getting toilet trained during the day (which finally occurred about halfway through last year), she helped to deal with his meltdowns and guided him through his school work. His teachers were absolute stars, they also had that “my way” attitude. I’m hoping to be able to get the same teachers for my daughter when she starts pre-primary next year.

He has had massive improvements this year since starting grade one. He has less meltdowns, and is slowly getting more conscious of social standards, so he is making friends easily. The kids in his class are amazing. I would have expected some bullying, but they are completely aware of his limitations, and realise he doesn’t always understand. They help to guide him towards the right outcomes.

But we recently had some fantastic news! I had a phone call from his occupational therapist who said she was 100% satisfied with his accomplishments in the last six months, and feels comfortable discharging him from OT. This is a major achievement. He still has a long way to go, but she felt that he would be able to accomplish this on his own (with help from teachers and his aid of course) I was jumping for joy after this phone call!

We have had a long battle over the last few years getting our son to this point. During his autism assessment, it was decided that while he shows autistic traits, it wasnt enough to put him on the spectrum. This was incredibly frustrating when I see/hear about other children who have the diagnosis, and show the same characteristics as my son! It wasnt helped by the fact that the assessors said had they seen him 6-12mths beforehand (as we were on the waiting list for the assessment for almost a year) he absolutely would have been diagnosed with ASD. Can you imagine hearing that? So we missed out on heaps of funding he could have had to help his learning at school. That is the most frustrating part.

For the moment, we will take this discharge as a massive positive…which it is of course!

Wish him luck fo his development in the future, and I will keep you posted of his progress!!

Bella :)

The cutest things in life

It’s an old saying, but kids say and do the darndest things!

Last night for example, my eldest son and daughter played “karaoke”. I had hooked my laptop up to our tv unit and played my iTunes through the sound system while I was cooking dinner.

The kids quickly found some make-do microphones (my son had one made out of Lego blocks, and my daughter used the belt from her dressing gown!) and were dancing around the living room. My son was pretending to be Alice Cooper, singing “Poison”, and my daughter transformed into Brittney Spears, singing “Till the world ends”. While one was the main singer, the other was a back up dancer! It was hilarious to watch, but it had them exhausted…which equals an early night to bed (woohoo!)

 

 

 

My eldest son also turned six years old recently. He had his first party where school friends were allowed to be invited. Every so often at the party, he would come up to me, give me a hug and say “Thank you for the party, Mummy! It’s the best party ever!”

This is a kid who has trouble expressing his thoughts and feelings  in the past due to his speech and cognitive delay. They were a wonderful bunch of kids. Every parents loves to hear that their child has friends, and it brought a tear to my eye to see how accepting they all were of his limitations. It absolutely melted my heart to see him have such a good time!

So while my kids and I bump heads all the time, I love them with all my heart. But it’s moments like this that keep me smiling!

 

What have your kids done recently that you would like to share?

Bella :)