Butterfly baby

We've been raising butterflies from caterpillars again this year, and today was release day! Peter has been so excited to watch the caterpillars grow from tiny skinny caterpillars to big fat hairy caterpillars, and to change into chrysalises before emerging as butterflies. He knows the butterfly lifecycle well as butterflies are a special interest of his and we have several books on the subject.

We gathered up Russell and his ventilator, and everyone went outside into the garden for the big release. Last year when we did this Peter sat up on his garden slide to get a better view so this year he was adamant that nowhere else would do, and he needed to sit up on the slide again. Unfortunately none of the butterflies wanted to land on Peter's hand, so we didn't get the lovely photos we'd hoped for, but it was wonderful to see all four of them fly away to start their adventures and hopefully lay eggs of their own.

The butterflies were content and happy in their little habitat on top of our fishtank - they had everything they needed to grow, they were safe and well cared for and they weren't missing the world outside because they didn't know it existed. The metaphor of being raised in a small space and not knowing any different, and then one day being released into the big wide world wasn't lost on us, and it's one we'll perhaps share with Russell as he grows up and starts asking questions about his babyhood and long hospital stay. He's loving his newfound freedom and is grasping every opportunity that comes his way, as I expect our four little butterflies are too!

Life story memories

After nearly sixteen months in hospital and nine months in our family, Russell is home! We're so pleased that he's finally here, and our family and friends are queuing up to visit and meet him.

As we were packing up his hospital room we came across lots of items that we had no idea where they'd come from. Teddies, toys, blankets and even clothes regularly appeared in his room when we weren't there, we'd ask the nurses who'd left them but they often didn't know.

As foster carers, one of our most important tasks is helping a child to keep track of their life story whilst they're with us and beyond, and a big part of that is tangible memories such as little outfits, presents, photos, artwork etc. with an explanation of their meaning. A teddy near a hospital cot could be a gift from a nurse, it could have been left by a charity who provide little presents for children in hospital, it could have been passed on by a social worker from another relative, it could have been brought by a parent during contact, or it might not even be Russell's! We had kept a particular blanket early on that said "My mummy loves me" in the corner, feeling sure that it was from Russell's mother, and then had found a tiny label that proved it was just one from the hospital store cupboard.

Thankfully, the play specialists on the ward where Russell spent the most time were very good. They took photos of him every week, made little hand and footprint paintings every couple of months, and compiled these together into a folder as a record of his time there, including bravery certificates for his various procedures. As he grows up he'll be able to look back on these and see how tiny he was as a premature newborn, how quickly he grew, how much he smiled even with tubes and machines everywhere, and will hopefully realise that even though he had a long hospital stay, he was very much loved and cared for first by the nurses, and then by us.

New adventures

It's been a couple of months since I updated the blog, because we've really just been rolling along as a family and haven't had anything interesting to talk about - Peter is progressing well and delighting everyone he meets, and Russell is adorable but still in hospital. I'm not going to lie - it's been hard, because this exhausting life of driving back and forth for 4 hours every couple of days and building up our hopes for discharge only for it to be cancelled at the last minute has already been more than double the planned number of months. Thankfully Russell is healthy and the issues with discharge are mostly logistical, so we will continue to wait, and hope that it won't be too long before he's home.

Our big news is that Peter will soon be our legal son! We first expressed interest in adopting him nearly two years ago. We've been assessed and approved as adopters, the placement order we've been waiting for has now been granted with a plan of adoption by us, we're going to matching panel next month and will put in our application for an adoption order straight away.

He was placed with us age four years and three months, having had a failed foster placement already and carrying a label of "unadoptable" due to his severe autism and extreme behaviours. His social worker has always had a soft spot for him and could not be happier for us all which is lovely. It feels like an exciting new chapter in our lives is starting!

Another special one year old

Little Russell is nearly one! This is a huge milestone for all babies, but especially for Russell as there were more than a few moments in his first year when no one was sure whether he would make it through. He's stable and doing well now. The doctors would like him to put more weight on but he's not underweight for his corrected age and he's stopped frightening everyone when he gets a cold! He's still in hospital, but we hope to have him home in the New Year and then his life can really begin!

We have presents, bunting, banners, helium and normal balloons, a wooden cake if he's not in the mood to play, a chocolate cake if he is, a big foster brother keen to "help" with the cake, a birthday vest for him wear and a builders tray to contain the mess. All the ingredients for a memorable 1st birthday party! A good friend of ours with awesome camera skills is coming to the hospital to take photos. Russell won't remember any of this of course but he will be able to look at the photos in years to come and know that we celebrated his special day in the best way we could!

Buying for a disabled or developmentally delayed child

With Christmas approaching I thought I would do a post to help friends and family of children who are not developing typically choose a Christmas present. So here's how we like to choose gifts for our special little ones.

1) Forget about the age it says on the box!

This can be hard as it's so ingrained in us that baby toys are for babies, but at six years old Peter loves many toys and books aimed at babies or toddlers. They are designed to stimulate senses and use simple language which is exactly what he needs.

Russell will be one year old by Christmas but isn't rolling yet and doesn't have any sitting balance, so many of the toys aimed at the 12-18 month age group will not be appropriate for him. He also has a visual impairment so we are looking for toys to stimulate his vision and encourage him to start moving.

2) Don't automatically ignore items aimed at older children or adults.

If an item relates to Peter's current interests (space, cars, maps, trains and butterflies), it's a big hit - especially coffee table or encyclopaedia type books.

As Russell hasn't left hospital yet, and in fact has only been outside three times, we're looking for gifts with mirrors or real-world imagery rather than lots of bright colours and cartoon characters.

3) Remember that many children have a "spiky profile" where their skills may be age appropriate in one area but delayed in another, so for example Peter can easily complete a 100 piece puzzle but wouldn't understand the simplest board game aimed at pre-schoolers.

4) Don't worry if you're asked to do something out of your comfort zone or that seems unusual!

Peter doesn't like wrapping paper as it makes him anxious, so we ask for unwrapped gifts for him (or unwrap them ourselves before he sees them). We've also heard of families wrapping gifts in transparent cellophane or sticking a photo of the gift on the outside so there are no surprises.

As Russell has a tracheostomy we need to insist on no glitter, sand, or soft toys with fine fibres that may go into his lungs.

5) Have fun choosing! These are all gifts that Peter and Russell would love to receive this Christmas:

Ravensburger 100 piece Snowman puzzle, Discovery 50mm astronomical telescope, B Symphony, Pintoy Tower Slope, Tidlo Double Sided Easel with Paper, Debenhams Space Rail, Funtime Newton's Cradle Executive Desktop Toy, Paladone Scrabble Light, Science Museum Magnetic Sand Timer, Disney Cars Book

Baby Einstein Playtime Explorer Gift Set, Bright Starts Roll and Glow Monkey, Tomy choo choo loop, Bright Starts Light and Giggle Drum, Baby Einstein Neptune Magical Lights Mirror, Debenhams Party Bulb

This post was written as an entry to the Debenhams "Dear Santa..." competition. Five lucky bloggers will each win £100 vouchers to spend on toys from their range.

Russell

We were approached a few months ago about a little boy who's been in hospital his whole life with various medical needs, and will probably be there until the end of the year whilst he gets bigger and stronger. Many of these issues are likely to continue once he comes home, so we've gone through all sorts of risk assessments to check that our house is suitable, that we know what we're taking on in terms of daily care and supervision, and that we have room for all of his medical equipment.

We accepted the placement, met Russell for the first time a couple of weeks ago and he feels like part of the family already. It's so important for babies' brain development to build up attachment with primary carers (especially as in Russell's case he has none at the moment), so one of us has been staying at the hospital with him most of the day and night. It's hard work as we miss spending family time with each other, and it's a lot of driving as the hospital is over an hour from our house, but little Russell is worth it and we can't wait to have him home.