Sunday, 15 December 2013

Where Can I Buy Premature Baby Clothes?

I am often asked this question "Where Can I Buy Premature Baby Clothes?" This question is rarely asked by parents, more often it's friends or family members desperate to buy a gift for the new arrival/s, and dismayed to find nothing on the High Street.

When a baby is born very early and small they usually don't wear anything other than a nappy and maybe a hat for the first days, weeks or even months. The wearing of clothes is a massive milestone. So for baby born between 1 and 3lb, clothes may not be necessary at all. Before you buy anything check with the parents.

Specifically made early baby clothes are expensive. It's a niche market and they take a lot of work to produce. It's not unusual for a sleepsuit to be around £20 which is why I went the Mothercare 3 for £15 route and just made do with them being a bit big!  Don't be tempted to go down the doll clothes route, they are not made to accommodate a premature baby's needs. 

In our case Joseph was born weighing 1lb 7oz. My dear friend Jennifer bought me a gorgeous handmade NICU vest suitable for his birth size and we tried to get some wear out of it, but on our NICU it wasn't allowed when they were so small, and once he was big enough for a vest, it only had a week or two left of use!

Vests are a good purchase and often the baby will wear a vest before it goes onto clothes. Vests are the one item I think its pretty essential to buy in the correct size and at the end of the article I'll give you some links to some on line stores.

For baby grows I used Mothercare early baby up to 5lb. He started wearing these at 5lb. They were huge on him and he fit them for over 2 months! A big of artistic licence with folding and tucking was required. However I think for really early babies loose fitting outer clothes are best as their skin mantle is so delicate plenty of room around the skin can be a good thing.

Rather than clothes, I always suggest two things, blankets and muslins. In NICU I used muslins loads, as swaddling cloths, to go over the sheet to catch dribble etc, as make shift nappies at weigh in time, all sorts of things. A really lovely pack of muslins is a gorgeous gift. The other suggestion is blankets. I had fleece, cellular and acrylic. Taking our own blankets made me feel like Joseph was my baby and his cot was our space. A comforter is always nice, like the Cuski. You could even buy two, one for mum and one for baby so they can swap them.

Gifts for mum never go astray and when a baby is born prematurely mum might feel totally unprepared and lost. Beautiful handcreams preferably with cotton gloves, nice chocolate, magazines or easy books, breast pads, a voucher for some feeding bras are all lovely gifts.

My favourite suppliers of premature baby clothes are

Cheeky Chums
Early Baby Store
Teddy & Me

I hope this article helps as its something I am asked a lot.

Friday, 13 December 2013

Why I Support Christmas Jumper Day

Today is Christmas Jumper Day. I love a good Christmas jumper, with your British cold miserable winter you need bright cheery knitwear to make that pre Christmas season nice and jolly. But Christmas Jumper Day isn't just about who has the best reindeer on their knitwear. It's to raise money and awareness for Save the Children UK

One of the first Bloggers I ever met was Christine from Thinly Spread, I saw her speak at Cybermummy11 and she completely changed my view of blogging and made me realise I could have a huge impact on my world with my blog. It's partly because of her I am where I am, and have never given up.

Today from 1-2 there's a Twitter Party. Join in, put your pound in the pot (ok text it to 70050 TEAMTHINLYS) and post a selfie of you in your jumper. No jumper? Stick a bauble on your existing jumper or wrap some tinsel on your wrist.

Save the Children do masses of work internationally in premature birth and were one of the authors of the Born Too Soon report. Their work helps babies like Joseph who without their investment wouldn't stand a chance. 

I have my jumper ready in the mean time here's my little man modelling his effort!

Monday, 9 December 2013

I Thought It was Over - PTSD

Walking into a toy shop yesterday I stumbled into the nursery section. Excited prospective parents looking at prams, car seats and nappy sack systems. And I quivered. And the tears fell. And I started to shake. It's not just that we can't have more children, it's that prematurity robbed us of so much as parents. And it's made Joseph's start in life harder than it should be.

I quickly went to the Iron Man section to focus on buying Joseph's Christmas presents. I took a great big deep breath and started to focus on the here and now. A sales assistant came and started to chat to me about Iron Man and Christmas. I started to calm down, he had no idea of the internal battle within. I gathered myself together, bought the present and went home.

This week Joseph's teacher told me how far behind Joseph is other children. She explained that "Joseph is Joseph" whatever that is meant to mean, but that he is not interacting socially with other children, behaviourally difficult to manage and generally not doing well.

Sadly, this was said in front of Joseph and he's been upset ever since. "Mummy I am not going to read with you because I am not good at it". "Mummy I don't like school and I don't fit in". One of the things that is hard is that my own school life was traumatic, and I really hoped Joseph would find school a safe place to develop and learn. It breaks my heart history appears to be repeating itself. I was a loner at school. I was good at reading, but behind in maths and had a lot of trouble with physical education.  I was singled out as having Special Educational Needs, although back in the 1970's it was called "retardation". I didn't have SEN as it turns out, I was just different.

But this experience is a good thing. I can use it to help Joseph and to empathise with him, and to make sure that school remain positive and help Joseph focus on the things he can do and does do well.

I am over reacting, I know I am, but it isn't my fault. I feel so responsible for this little life and that I've made things harder for him by failing to deliver him at term. "Be quiet voice, term babies can have problems too." I should have fought harder for early intervention "Be quiet voice, he was seen by three consultants none of whom felt it was warranted." I feel like I should have prepared school more "Be quiet voice, you had a one to one meeting with the teacher before he started, its not your fault she resigned".

So there are two issues, dealing with school, finding out exactly what's going on and being done and what we can do to help Joseph, but also managing me and these spiralling thoughts and over reactions.

I'm having nightmares and flashbacks again and the PTSD is flaring up. I know I have to keep working on it hard, because if I don't, it will control my life again.

I know I have to work hard on my self care and not ignore what's happening, but also not play into it's hands.

I can't ever afford to forget that I do have PTSD. I am in recovery which is great, but its always there, and to beat it, I need to acknowledge it.

Tuesday, 3 December 2013

Break Barriers Open Doors - Where do we start?

Today is International Day of Persons with Disabilities. The theme this year is Break Barriers Open Doors.  This post was meant to be "how you talk to children about disability" please read on!

I started being interested in disability issues from the age of 7. I attended a special school for a year and met children from all sorts of backgrounds with various conditions. I was restreamed after a year. My school then introduced a scheme where children from the local special school would visit once a year. I will never forget my year 5 teacher saying "make sure you put all your valuables away, they are not like other children". I challenged her on it, which for me back then was very rare. She was suitably chastised, and when the children arrived I think she had her own eyes opened that actually there was no difference between "them" and "us". Thankfully now integration is widely practiced, however what's important is that there is true integration which means making sure our attitudes are inclusive ones and we are not just practicing tokenism.

In 1981 when I was 9, we had the International Year of the Disabled, which shocked me as much as inspired me. To be honest, a lot of the rhetoric around last year's Paralympic Games was very similar to that being used at this time.  People's attitudes were really quite frightening. It was great to see stories of triumph etc, but the role of the person with a disability in society isn't necessarily to inspire, it's the same as the rest of us, to have choice, to have freedom, and the ability to live the life of their choosing. And disability still vastly restricts a person's life choices. That is wrong and we need to change it.

I did volunteer work through university and beyond in Citizen Advocacy, assisting people with disabilities to speak up for themselves and have their choices known. I then worked as a disability support worker for 5 years and reprised this role when moving to the UK. I hate the term carer, or even support worker. Our role when we work with people with disabilities is a partner, a facilitator, an empowerer.

I've grown up seeing people as people. For me it isn't rhetoric I just don't really notice it. 1 billion people in the world are estimated to have a disability. However, when I trained in disability support work the philosophy I learnt is that we all have disabilities, things that make us less than perfect. And we are all just an illness or accident away from severe disability.

Teaching kids about disability isn't important. Teaching them about people is what is important. My best friend has a condition called Duchenne Muscular Dystrophy. We became friends over 2 years ago, and Joseph met Daniel a year ago.  If you ask Joseph about Daniel he would tell you that Daniel has dogs and a cat, loves fish, and computers and is fairly rubbish at Angry Birds. He might tell you Daniel needs help with his breathing, but he probably wouldn't. And I would be very surprised if he mentioned Daniel's chair.

I answer Joseph's questions honestly. He did ask once if Daniel would die and I explained that we all die one day, and that Daniel may die sooner than he should. I used this as an opportunity to explain the importance of handwashing and keeping Daniel safe from germs, and also the importance of making the most of everyday and to enjoy his company.  I giggle if Joseph is playing computer games with Daniel and says "your arm is in the way move it!" rather than get embarrassed.  Joseph doesn't treat Daniel any differently than he does any of my other friends. He treats him with respect, and with kindness.

Kids pick up on your own attitude. If you can see past the disability to the person's personality, to what makes them them, then your child will too. Questions do crop up and its ok not to have all the answers. You can endeavour to find them out together.

Joseph hasn't even noticed that his dad has a disability, arthrogryposis multiplex congentia. He's never really noticed that he walks with an unusual gait, and doesn't bat an eyelid to the fact this hands are bent a bit, and there are things he can't do. Joseph is growing up understanding variance and seeing the person as a person.

Now more than ever we need to develop more compassion, more understanding. It saddens me that whilst there has been change since I was Joseph's age it is far too slow.

To break barriers and open doors we first need to start by examining our own hearts, our own attitudes and help our children grow in love and compassion.

This is where we Break Barriers and Open Doors. We start with the hearts and minds of our children. We teach them about people. We answer questions open and honestly but we don't make a big deal of it. We concentrate on getting to know people, their hearts and their minds and their personalities.

That's how we do it.