I think anybody who has a child with special or additional needs, is already doing a great job. They advocate for their children, educate constantly, and spend time building a support structure and community to ensure for their families' well being. But I have found they don't advocate for themselves in quite the same way. So I'm here to help. Share this blog post.. and the hard work is done for you!
Kids are easy. Give them a toy and they're happy. Not sure? Ask the salesperson and they'll tell you what kids want this year!
Parents? Not so easy! So I thought I'd give you a top ten list.
It's listed in no particular order, but I made it a countdown, because it's Christmas, and countdowns are cool.
As a parent of a child with special needs, I need to say.. I love all my friends. I think you are terrific, and to those who have supported me.. I love that you don't mind when I don't pick up the phone some days, or my Facebook messages get backed up.
I think it's great when you find it amusing that I lose my phone and it doesn't resurface for 2 days because I've been too busy to stop and look for it.
And, best of all, I love how you understand it's far easier for you to visit ME.. rather than try and set up playdates at your own place. It just is. Home oxygen aside, we live in my car, between hospital trips, therapies, daycare and school runs, work and more therapies, playgroups and did I mention therapies?! The thought of backing out our driveway, without a medical emergency or empty pantry, is like nails on a chalkboard.
The only place we EVER actually want to drive to, is Byron Bay. (refer to image below.)
Kids are easy. Give them a toy and they're happy. Not sure? Ask the salesperson and they'll tell you what kids want this year!
Parents? Not so easy! So I thought I'd give you a top ten list.
It's listed in no particular order, but I made it a countdown, because it's Christmas, and countdowns are cool.
As a parent of a child with special needs, I need to say.. I love all my friends. I think you are terrific, and to those who have supported me.. I love that you don't mind when I don't pick up the phone some days, or my Facebook messages get backed up.
I think it's great when you find it amusing that I lose my phone and it doesn't resurface for 2 days because I've been too busy to stop and look for it.
And, best of all, I love how you understand it's far easier for you to visit ME.. rather than try and set up playdates at your own place. It just is. Home oxygen aside, we live in my car, between hospital trips, therapies, daycare and school runs, work and more therapies, playgroups and did I mention therapies?! The thought of backing out our driveway, without a medical emergency or empty pantry, is like nails on a chalkboard.
The only place we EVER actually want to drive to, is Byron Bay. (refer to image below.)
The Top Ten List of Gift Items for Carers this Christmas
10. A hug and a cup of tea. Need I say more?
9. Observe what we need. We probably won't tell you, because we're busy trying to be a super mum or dad. But we will slip up and have a whinge sometimes... and BAM. There's your gift idea. Write it down.. we probably won't bring it up again!
8. A fun day out with our babies. Acknowledge, as carers, we don't always 'want time away' from our children. We would rather tickets to a museum or a show, with a promise for you to attend with us, and help with the children!
Our kids can be hard work.. but it just makes us love them more deeply.
Our kids are like a precious gem we have spent a long time toiling for. Sometimes we even have to get down in the depths and get a bit muddy. But when we hold them up to the sun and the light shines through and out, it's blindingly beautiful and made of the kind of love that starts wars.
7.Something meaningful and personalized. The most beautiful gift I have recently received, was a necklace with personalized pendants. They have each of my babies' names, and two wings for the babies I never got to meet. It was so thoughtful and perfect- and Alice knew, from all our conversations, exactly how much that would mean to me. I love it and wear it every day.
6. An IOU book. Simple, and worth infinitely more to us than a $50 decorative kitchen ornament!
Simply get some bits of paper and write one or all of the following things on them-
Hospital trip
Dinner & Dishes
A Day Out
Therapy Buddy for the day!
Now- the tricky part? Organize them yourself to set them up. After all, it is YOUR present! Carers, like most people, HATE asking for help, even when an undefined offer is thrown out there. They hate it, because they spend their lives needing to advocate and defend the weaker and more vulnerable. Why would they admit to vulnerability, and possibly even be told 'no, that's not convenient, so sorry I'd love to help but I'm busy that day'?
5. A book related to the child's disability or illness.
Believe me, there's a lot. Obviously my interest is Down syndrome, so I'll list a few below.
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives; Kathryn Lynard Soper
Bloom; Kelle Hampton (always a favourite due to this woman's gorgeous photography).
Road Map to Holland: How I Found My Way Through My Son's First Two Years With
Down Syndrome; Jennifer Graf Groneberg
Gross Motors Skills in Children with Down Syndrome: A Guide for Parents and Professionals; Patricia Winders
There are many more suitable books, but this will give you a good starting point to search on Amazon. Believe me, your friend will appreciate beyond words that you have looked specifically for something that concerns her child and is such a huge part of her life.
4. A meal in hospital. Can I tell you, my local hospital doesn't feed parents when their children are admitted to ward? None do. So, when a child is in hospital overnight regularly, it's junk cafeteria food, Subway, or nothing. If a child is in hospital over Christmas, it's just no fun for anyone. Popping into hospital at this time of year with a few frozen homemade meals is absolutely priceless. If you have a friend in hospital, get on your bike! Just because someone has been in hospital for a longer period of time doesn't mean they have adjusted. Speaking from experience, day 40 is just as awful and scary as day 1, and visitors are a welcome distraction.
3. Whatever interests us. Did you know- we still like everything we used to!?? Yes, it's true! Cycling, motocross, adventure sports, pram collecting, horses, shabby chic furniture renovation, blogging, reading trashy magazines, polishing the car, museums, galleries, cafes, baking strudel.. whatever used to interest us, we love- but we now have less time to make it a priority. This is where gifts get exciting! If we are GIVEN a ticket to participate in our favourite hobby, we will do it, and love it, and maybe be reminded we need to spend a little more time doing something with zero benefit other than making us happy.
2. A monthly calendar planner from Kikki K. Yeah- you know how you're really organised because you know what you're doing next week? We know what we're doing until the end of February. Because we have 4 months in calendars pinned to our wall to track hospital visits and therapy sessions. I attend on average 10 GP/hospital appointments per month, and my son doesn't even have any serious health concerns. Believe me, these planner things are amazing- and the gift a momma didn't know she needed, until she gets it.
http://www.kikki-k.com/a2-monthly-planner
1. Your Time.
If you say you will do something, or be somewhere, do it. It is far trickier, as a general rule, to make plans around a child when more factors have to be taken into account. If you cancel at the eleventh hour, it can be crushing.. when we have had to put so much effort into simply leaving the house.
Lastly.. don't forget us. We're the same person we always were.. just busier. Oh, boy are we busy. We're not Supermums, or someone to be looked up to, or the person you say, 'I could never do what she does. I don't know how she does it'. We don't know, either. In fact, a lot of the time, we DON'T manage it and all our balls we're juggling come crashing down.
But we are the same person underneath, the person you've always known and loved for exactly who they are.
If you can look at all that hard work we put in with our child, hoping and praying to end up with something as close to a boring and normal life as we could wish for.. hopefully it inspires you to do the same with our long standing friendship.
Invest a little time to make up for our current shortfall, and I promise.. We will crack the same bad jokes we always do, and exchange our latest stories, and just for an hour or two, everything will be as it should be.
10. A hug and a cup of tea. Need I say more?
9. Observe what we need. We probably won't tell you, because we're busy trying to be a super mum or dad. But we will slip up and have a whinge sometimes... and BAM. There's your gift idea. Write it down.. we probably won't bring it up again!
8. A fun day out with our babies. Acknowledge, as carers, we don't always 'want time away' from our children. We would rather tickets to a museum or a show, with a promise for you to attend with us, and help with the children!
Our kids can be hard work.. but it just makes us love them more deeply.
Our kids are like a precious gem we have spent a long time toiling for. Sometimes we even have to get down in the depths and get a bit muddy. But when we hold them up to the sun and the light shines through and out, it's blindingly beautiful and made of the kind of love that starts wars.
7.Something meaningful and personalized. The most beautiful gift I have recently received, was a necklace with personalized pendants. They have each of my babies' names, and two wings for the babies I never got to meet. It was so thoughtful and perfect- and Alice knew, from all our conversations, exactly how much that would mean to me. I love it and wear it every day.
6. An IOU book. Simple, and worth infinitely more to us than a $50 decorative kitchen ornament!
Simply get some bits of paper and write one or all of the following things on them-
Hospital trip
Dinner & Dishes
A Day Out
Therapy Buddy for the day!
Now- the tricky part? Organize them yourself to set them up. After all, it is YOUR present! Carers, like most people, HATE asking for help, even when an undefined offer is thrown out there. They hate it, because they spend their lives needing to advocate and defend the weaker and more vulnerable. Why would they admit to vulnerability, and possibly even be told 'no, that's not convenient, so sorry I'd love to help but I'm busy that day'?
5. A book related to the child's disability or illness.
Believe me, there's a lot. Obviously my interest is Down syndrome, so I'll list a few below.
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives; Kathryn Lynard Soper
Bloom; Kelle Hampton (always a favourite due to this woman's gorgeous photography).
Road Map to Holland: How I Found My Way Through My Son's First Two Years With
Down Syndrome; Jennifer Graf Groneberg
Gross Motors Skills in Children with Down Syndrome: A Guide for Parents and Professionals; Patricia Winders
There are many more suitable books, but this will give you a good starting point to search on Amazon. Believe me, your friend will appreciate beyond words that you have looked specifically for something that concerns her child and is such a huge part of her life.
4. A meal in hospital. Can I tell you, my local hospital doesn't feed parents when their children are admitted to ward? None do. So, when a child is in hospital overnight regularly, it's junk cafeteria food, Subway, or nothing. If a child is in hospital over Christmas, it's just no fun for anyone. Popping into hospital at this time of year with a few frozen homemade meals is absolutely priceless. If you have a friend in hospital, get on your bike! Just because someone has been in hospital for a longer period of time doesn't mean they have adjusted. Speaking from experience, day 40 is just as awful and scary as day 1, and visitors are a welcome distraction.
3. Whatever interests us. Did you know- we still like everything we used to!?? Yes, it's true! Cycling, motocross, adventure sports, pram collecting, horses, shabby chic furniture renovation, blogging, reading trashy magazines, polishing the car, museums, galleries, cafes, baking strudel.. whatever used to interest us, we love- but we now have less time to make it a priority. This is where gifts get exciting! If we are GIVEN a ticket to participate in our favourite hobby, we will do it, and love it, and maybe be reminded we need to spend a little more time doing something with zero benefit other than making us happy.
2. A monthly calendar planner from Kikki K. Yeah- you know how you're really organised because you know what you're doing next week? We know what we're doing until the end of February. Because we have 4 months in calendars pinned to our wall to track hospital visits and therapy sessions. I attend on average 10 GP/hospital appointments per month, and my son doesn't even have any serious health concerns. Believe me, these planner things are amazing- and the gift a momma didn't know she needed, until she gets it.
http://www.kikki-k.com/a2-monthly-planner
1. Your Time.
If you say you will do something, or be somewhere, do it. It is far trickier, as a general rule, to make plans around a child when more factors have to be taken into account. If you cancel at the eleventh hour, it can be crushing.. when we have had to put so much effort into simply leaving the house.
Lastly.. don't forget us. We're the same person we always were.. just busier. Oh, boy are we busy. We're not Supermums, or someone to be looked up to, or the person you say, 'I could never do what she does. I don't know how she does it'. We don't know, either. In fact, a lot of the time, we DON'T manage it and all our balls we're juggling come crashing down.
But we are the same person underneath, the person you've always known and loved for exactly who they are.
If you can look at all that hard work we put in with our child, hoping and praying to end up with something as close to a boring and normal life as we could wish for.. hopefully it inspires you to do the same with our long standing friendship.
Invest a little time to make up for our current shortfall, and I promise.. We will crack the same bad jokes we always do, and exchange our latest stories, and just for an hour or two, everything will be as it should be.