Tag Archive | special needs

Open letter to my friends

To my friends (you know who you are!),

I am sorry that we don’t get to catch up very often. I honestly miss the moments we have together, whether they are coffee or wine infused! I had to write today though to express who much I love, respect, thank and even miss you!

Friends come and go. But the ones who stick with you during the hard periods, they are the special kind.

When I had my first child just as we hit our 20’s, you were the ones who realised that I couldn’t drop everything  and come to a last-minute party, or go to the pubs, anymore.
You still made the effort to include us in your lives.

Thank you for making the effort to catch up despite my hectic life!

Thank you for making the effort to catch up despite my hectic life!

When more children came along, and it was even harder for us to have a night out, you didn’t ignore us/drop us, you still invited us to barbeques, included my children, or said “So you have the kids at home today? We will come to your house then for coffee!”
You even visited when I was in hospital after giving birth. Outside of family, not many friends actually visited, I don’t think you realise how special that made me feel!

When our lives became more difficult due to the fact special needs cropped up, again, instead of walking away from our friendship, you said “What can I do to help?” or “How are things going at the moment?”

You take a genuine interest in our struggles and our lives. You want to help. I recognise that!

When we come to your house, you see that I am worried about my kids running riot and trashing your house. You make us feel welcome, accomodate us and tell me “It’s ok!” when my kids have made themselves at home and made a mess of your living room.

I know you don't mind too much, but I don't want to trash your houses!

I know you don’t mind too much, but I don’t want to trash your houses!

You make sure that my youngest son is allowed to have something to eat, before you hand it over, just because of his medical condition. You are aware of the need for this.

You drag me away from the kids if you see me hovering over them, and tell me I am supposed to be enjoying myself when I am at a party. You remind me that it is ok to release my control and anxieties.

You understand that it can be a long time between catch ups because I am busy with work and/or child responsibilities. You work around it, and you dont judge me for it, and you don’t forget about me.

You have no idea how much I love and respect you for the support you constantly give me and my family. My love and respect grow every time you interact with my special needs children. When my children show you something, you act like it is the coolest thing you have ever seen! You don’t ignore them and fob them off. My middle son, Ethan, has a hard time opening up to adults, yet I have memories where I watched in amazement, where he would sit in your laps, open up, and not want to leave your sides. You made him feel loved and secure. I don’t think you realise how much of a rare event this is, or what you did for him in that moment!

There are bad experiences online, but I am lucky enough to find great friends online

There are bad experiences online, but I am lucky enough to find great friends online

To my online friends- although we have never officially met in person, I hope to one day. Some of you I have known for almost eight years. We have laughed together, cried together, shared tips and advice. When my children with born, you rejoiced- sending me messages and gift of congratulations. The horrible period when my youngest, Cameron, was diagnosed with cystic fibrosis, it was the first time that any of us had been diagnosed with a serious condition. I contacted some of you to spread the news. Little did I know, you all rallied together, chipped in some cash, and sent Cam and I a care package of flowers, a teddy and much need chocolate to the hospital. I cried when it arrived. I felt loved and thought of. While I am no longer in contact with some of you, I still respect you for the friendship you extended to me.
One day, I will meet you, but in the meantime, you know that you can contact me, good or bad, about anything. Despite not officially meeting, I still consider you some of my best friends. I hope you feel the same way about me!

To my husband’s friends- I love and respect you for when you call and my husband isn’t available, and you will spend at least half an hour just chatting with me, asking about me (or Mark) and how our kids are, how life is travelling (instead of just saying that you will call back later.) Or when we are actually managed to catch up, you will actually sit next to me and chat.
I have immense respect for the fact that you seem to actually like me for who I am ( not just as your mate’s partner) and take a genuine interest in our children and our lives. Both Mark and I express our regrets that we can’t catch up nearly enough! 😦
I feel like a terrible friend because we don’t catch up often enough, and I can’t possibly return the sentiments that you give. I can only try! I honestly don’t feel like I have articulated well enough how I am really feeling, but I hope you are starting to get
I don’t tell you often enough, and I can’t express enough, but thank you, and I love you!

Bella 🙂


Constructive advice

I attend a special group every Wednesday morning (well…as often as I can). I wont call it a mother’s group, as men are welcome, and quite often get grandmothers and other care givers attending. This group is a support group of parents and carers of children with special needs, both mental and physical. A vast majority of the ladies who attend have children with autism or Global Development Delay. However, there are a few (including myself) who have those with physical conditions (like cystic fibrosis)

Half the time, we have guest speakers, or certain topics to talk about (the rest is just sitting around having a chat over a cup of coffee). Last week’s topic was “Dealing with people’s reactions to you child’s disability”

I kinda hogged the talking (hey, four kids of disabilities and reactions worth here!!)

But, what do you hate hearing from people in regards to your child’s diagnosis/disability? I recently posed this question on my Facebook fan page, and have had a good response so far. A lot of I can personally relate to.

I can't *wait* to hear how you can do things better, or how you have it harder!

I can’t *wait* to hear how you can do things better, or how you have it harder!

I ask you to add your own pet peeves. Check out the blog post by another mum who attends my support group, who recently wrote about the same thing (and I don’t feel I can write it any better than she has!)

My biggest pet peeve is the “God gave only as much as you can handle”.
I am not a terribly religious person. I class myself as ‘spiritual’. But God has nothing to do with what my family is going through and how we live our day-to-day life. I quite often wonder if He made a misjudgment in my abilities as a mother and just maybe, gave me ‘too much’. My next statement will be controversial, but I struggle to put my faith in something/someone who has apparently made my life very difficult.
Despite the big story I can write behind this comment, I find this statement very unhelpful. Am I just meant to say “Thank you”?
I tend to find myself just smiling and changing conversation.

After we all took turns of what we hated hearing, our support group coordinator then asked “What do you want to hear, then?”

The silence was awkward.

No one could think of anything for a moment. There are so many hurtful and unhelpful comments that get our backs up, but what can you possibly say to a special needs parent that is actually helpful?

One thing we all agreed on, it’s not the “You should do *this*”, it is a simple “Well, what can I do to help?”

If you know someone who has a child with special needs, take a legitimate interest in their struggles, take their lead on how you can help in a constructive way. It may just be the occasional ear for them to vent to. It may be the opportunity to go out for coffee once in a while. It may be a hand with babysitting.

As a young mum, my large circle of friends became smaller once I had a baby. At the age of 19yrs, I was at home looking after a baby. I couldn’t go out to parties as often anymore. Once more children came along, I went out even less. It became full battle strategy mode to go to the shops, let alone out to a friend’s house. The invitations stopped rolling in…

Screw the coffee....bring over a bottle of wine!!!

Screw the coffee….bring over a bottle of wine!!!

Later on, once we realised we had some special needs, that circle of friends got even smaller again. The friends that I have left I am exceptionally grateful for! If they read this, I LOVE YOU GUYS!! They understand that it is hard for me to get out, and if I do go out with kids in tow, it is hard to enjoy myself as I am stressing out, making sure that they aren’t trashing my friend’s house, running riot in the cafe, or playing with something that can make them sick.
These friends take an active interest in my family’s struggles. The biggest help they give me is by saying “Ok, so your kids are home today? I will come to your house for coffee then, instead of going out.” or they actually listen to my kids when they have something to say, and acting like it was the most interesting thing they have ever heard. They treat my kids like actual people.

So leave out the advice of what you think a parent should, or shouldn’t do with their children. Don’t make judgements. Just accept, and ask them what you can do to help.

Bella 🙂

The Green-Eyed Monster

Green with Envy

EVERY special needs parent will go through this stage at some point.

A conversation that regularly pops up between by CF parenting friends, or development delay parent friends, parents of autism (ok, you get my drift here..)  is that we occasionally get jealous of other friends and acquaintances who have happy, healthy, “normal” (as normal as normal gets!) children.

The worst place for experiencing this is Facebook. You see all these pictures of happy smiling kids, and read statuses about the milestones other people’s children are reaching that your own haven’t reached yet (or reached at a much later age) and you think “Why cant that be us? Just for once!”

Facebook: great for socialising…and bring out the worst in everyone!

It generally doesn’t last long, and we hold no resentment to the individual person, but there is a bit of resentment at life itself.

It quite often crossed my mind of “Why cant I be one of these mum’s that can sit back and watch their children grow up?”Instead, I am pushing, pulling and dragging my kids uphill through life with weights on my feet, dragging me back to square one at every opportunity.

I recently went through a dark stage where I actually had to deactivate my Facebook account because it was bringing me down to see all these smiling, happy families. (Not saying that we aren’t a happy family, of course, but we have certainly had a rough patch lately…anyhoo, that’s another story!)

After a few days I realised that I had only isolated myself from certain groups of people who actually care and want to support me, and Facebook is my main source of communication for these gorgeous people. Those few days were all I needed to be able to get my head together, and was back in the thick of again.

Don’t sit there, reading this, and think “What a whinger!!” When you have gone through hours of  therapy appointments for your children, constantly been at a hospital bedside, have been constantly physically abused by your children (just because you said “No” or change their usual routine) or dealt with 4 kids of different ages, all in nappies at the same time, or have developed reflexes that rival Spiderman to prevent your kids from running away in public places, or had a string of medical professionals say “We don’t know what is wrong with your child and we are giving up!”…..you will feel entitled to “whinge” every now and then!

Which brings me to my next point, and a lot of special needs parents agree with this too, but we hate parents who really do “whinge” over how hard parenting is…..seriously??? You are going to whine about your healthy, developing normal child…..to ME?? Don’t tell me how hard it is until you have spent a week….no…a DAY….in my household!

Then you can tell me how hard parenting is.

Feel free to share your opinions or experiences on my topic tonight, but this is an aspect of special needs parenting that I have been wanting to share for a while. It’s an aspect so many of us experience but feel it’s taboo to talk about. But I want people to know….it’s normal!!

Bella 🙂