Lifestory work

We recently received Peter's lifestory book from the local authority. These days they aren't so much a "book" as a "chapter", covering the child's story from birth to adoption. The adoptive parents are encouraged to add a chapter of their own to the beginning and end to soften the impact of the difficult information in the middle. This is vaguely how they should go:

- Peter is a kind, loving and clever boy who lives with his Mummy and Mama and their two dogs Lady and Nana. He is seven years old and he enjoys playing tennis, going on adventures in the woods and drawing. His favourite colour is green and he loves to eat spaghetti! Here is a photo of his family out on a bike ride together.

- Peter was born on 01/02/2010 in Newtown Hospital. He weighed 6lb 5oz. Peter's name means "rock". Here is a photo of Peter as a baby.

- Babies need to be looked after properly so that they can learn and grow. They need to be kept safe, they need enough food to eat, nappies, toys, a warm bed to sleep in, and lots of play and cuddles. Babies need grown-ups who love them, keep them safe and give them all the things they need. Love is not just a feeling, it also means giving someone what they need to be safe and happy.

- When Peter was a baby he lived with John and Christine, his sister Lizzy and his brother Harry. John and Christine loved their children, but they were unable to keep them safe, give them enough food to eat and help them learn all the things children need to learn. Sometimes XYZ happened (age appropriate explanation.) John and Christine were given lots of help to stop, but it's very hard to make changes and XYZ kept happening.

- Peter, Lizzy and Harry went to live with Dave and Helen, who are foster carers. Their job is to make sure children are clean and safe, have enough food to eat and a warm bed to sleep in. They love the children, and help them learn and grow. The children couldn't stay there forever, so a wise judge made the decision about where they should live. He chose a very special Mummy and Mama for Peter. Here is a photo on the day they became a family.

- Here are photos from the day Peter first met his Mummy and Mama. (Bit about how we felt and what we did in the first few days and weeks.)

- Here are photos and descriptions of events and milestones since Peter moved in - first time at the seaside, first day at school, first lost tooth, birthdays, Christmasses, Summer holidays etc.

- Mummy, Mama and Peter are going to be a family forever. When Peter grows up, he wants to ride water slides and be a train driver!

Peter's seventh birthday is approaching, and to help him with his understanding of time we went back and looked at some photos of Peter from when he first moved in with us to now, including his fifth and sixth birthdays. Peter actually came into care (to different foster carers) the day before his fourth birthday, and the other day he asked me if he was going to move to a new home when he turns seven. Due to his autism, developmental delay and speech delay we're not sure how much he understands or remembers about his past but this was heart breaking. We reassured him that he'll be staying with us forever and make sure we openly talk about plans we have for the future together ("when you're eight we'll...", "when you're thirteen we can...") to help him cement that in his mind.

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!

It's the most overwhelming time of the year!

It's been a strange Christmas this year. Esmeralda's mum has been staying with us as usual, but we spent half of Christmas Day with Russell in his hospital room, and the other half travelling to and from the hospital (on lovely quiet roads though, that was a definite plus!) Russell enjoyed the experience and we took some lovely photos of him with his stocking full of presents, sitting in his new jumperoo, and surrounded by shiny wrapping paper! Even though we only took five presents to the hospital for him Peter became overwhelmed after about two so we stopped there. The room is sweltering and small, the lights are very bright, there are so many different smells and nurses coming in and out so we can't even keep the door closed and dim the lights. He also absolutely hates it when young children or babies cry, and unfortunately there are a lot of crying babies in hospitals!

Peter did very well considering but spent much of the time on high anxiety alert staring into space and talking nonsense, zoned out watching Tractor Ted and having mini meltdown after mini meltdown. He has barely slept since Christmas Eve and hasn't really been able to enjoy anything. He really needs life to return to normal so we'll be having some quiet days, taking down the decorations, ignoring the rest of his presents until he is better able to cope, and eagerly awaiting the return of his clubs (he does running, horse riding for the disabled and swimming lessons) in a week or so when term starts again.

We're looking forward to next year when we'll all be together at home and we'll be able to relax and celebrate in a way that meets all our needs. We've had enough of hospitals - Russell included!

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.

A family update

Peter has had a great Summer and has just gone back to school into year 2. He has put up with a lot of change as one of us has been at the hospital with Russell most of the time, and has thrived with all the challenges that have come his way. He's getting stronger and fitter all the time - he now regularly runs 1km at our local running club, his confidence has increased: this Summer he's tried rock climbing for the first time and has climbed right to the top of the biggest climbing frame at any of our local playgrounds. He's taught himself to read, he's constantly experimenting and enquiring, his speech has improved, he loves imaginative play and he's developing a real sense of humour. He has a keen interest in butterflies so we've been providing him with resources, he can now identify 6 or 7 different species and will spend half an hour at a time sitting in the garden watching all the butterflies visit our buddleja. He's such a little character!

Russell has also started thriving since he became part of our family. When we first met him he was seven months old but like a newborn in terms of his development, except for his utter disinterest in whether anyone was with him or not. He's now 9 months old and about 3-4 months developmentally, but his whole demeanour is different - he's interested in us, wants our attention and is starting to demand it which is great. We've completed our training in his care and do everything for him whilst we're at the hospital. We're hoping to be able to take him on outings soon (accompanied by his ventilator and all his equipment!) and work up to day leave, overnight leave, and then hopefully he can be discharged home by November. We have a lot to prepare at home before he comes, and it will completely change our lives (again!), but we're looking forward to it. He's definitely worth it.

We were really pleased to receive an email from Belle's adoptive family recently, telling us how well she's doing, with some photos from their busy Summer. It's so lovely to see how happy they are and hear about their new life as a family of four, it sounds like Belle is keeping them on their toes and is making loads of progress!

We have more change on the way as we've decided to move house to give Russell a downstairs bedroom, Peter more space to play, and our dogs Lady and Nana a bigger garden to run around in! We're in the process of packing boxes, and since we're moving over county lines we're visiting new schools for Peter too. Our local authority accepts foster carers from neighbouring counties so we don't need to change fostering agencies thankfully.

It's a busy time but we're sure everything will settle down by Christmas... perhaps it will then be time for us to go back on the lists for a third placement!

Six years old

Peter is nearly six! Here are six things we love about you, Peter.

1) You truly follow your own interests without an awareness of the outside influences of "gender" or "age". Your favourite colour is pink, and you count butterflies and Tinkerbell amongst your favourite things, alongside cars and trains. Many of your toys have an age guide of 12-36 months on the box, but they make you happy and you couldn't care less.

2) How much you love books. "Read together?" you say, and when I agree, you skip off gleefully and return with a handful. "Five stories mama! This one first!" I have no doubt that the hundreds of stories we've read together (including several hundred repetitions of the same ones!) combined with your incredible memory have contributed to your awesome word recognition. You're starting to read before you can speak fluently - that's skill!

3) You still love to sing and can now hold a tune which is so lovely to hear (although maybe not at 5am at the top of your voice...)

4) You have no understanding yet of winning or losing, you can still just enjoy the race.

5) You find the world a confusing and frightening place much of the time, but you're happy to go to new places and try new things as long as we're with you. We're so proud of you!

6) You have no idea how significant every one of your achievements is when we think about the dismal prognosis you were given when you first came into care, and you continue to amaze us daily. We were asked in a meeting recently whether we understood what your limits would be in terms of what you could achieve and what your adult life will look like. For a moment we didn't understand the question as to us you have no limits whatsoever! We hope you will see yourself the same way as you grow up and will never allow another person to tell you what you cannot do because of your disability.

It's a privilege being your mummy and mama, and we couldn't ask for a better foster son. We look forward to the next year with you!

Speech update

I thought I'd post a little update on Peter's speech as we recently noticed how much he's progressed. He came to us 18 months ago aged 4, able to count to ten and say circle, square, monkey, water and car. None of it was clear, but you could just about work it out. Apart from that he communicated only in screams, or by leading us by the hand to whatever he wanted.

We recently decided with the lighter nights it was a good time to make his bedtime later as part of a new “grown up” routine now he’s nearly six, and he now gets a couple of hours of play time after tea rather than going straight up for his bath. My wife puts Belle to bed and then goes to work, and we do Peter’s choice of activities with my undivided attention until it’s bathtime. The chosen activities have ranged from reading stories, to rolling back and forth together on the trampoline for half an hour giggling, to building an awesome train track or marble run, but more often than not at the moment he wants me to draw on his magnadoodle. It’s fascinating getting an insight into his mind and the things he thinks about, and his speech is getting better and better as he has to find the words to describe what he wants me to draw. He looks forward to this all day and we spend at least half an hour every evening with me drawing whatever he asks, often things from books or from his own experience with a happy rectangle taking the place of himself. There’s a lot of imagination going on there too.

Examples to test my drawing skills have been:

– Caterpillar on a skateboard. A big fat one. No, now a little one. Five little caterpillars on skateboards. And then chocolate cake. Caterpillar eats it! Ha ha ha!

– Rectangle in the sea. Feet. Eyes and mouth. Armbands on. Swim pants on. Splashy toes. BIG SPLASH! Good swimming, rectangle!

– Thomas and Rosie and James and Percy. Eyes. Happy mouth. Wheels. Tracks. Tracks round the corner this way (gestures). Now left. Tunnel. Clouds. Stars. It's night time, goodnight Thomas. Thomas going to bed in Tidmouth Sheds.

- One hundred beautiful butterflies! (I think we got to about 20 before the magnadoodle screen was full.)

Amazingly, he has had no direct speech therapy as the school therapist has been unable to engage him, although we may find a private one in the future. We put him on fish oils early on to help his concentration and focus, and we believe that weekly music therapy has had a positive effect on his communication. Other than that, it has been mainly about finding what he wanted to talk about, following his lead and providing the vocabulary for him. A lot of his speech has come from echolalia - repeating phrases from books, TV programs or things that he's heard us say. Over time he's been able to adapt these, adding in or replacing words to fit new situations.

We're meeting Belle's adopters tomorrow and she'll be moving to her new family at the beginning of May. We're not sure yet how Peter will take this, I gently broached the subject for the first time tonight and we'll do some visual photo work with him to prepare him, and hopefully reassure him that he's staying with us. He's clearly fond of her and calls her "my Belle", but she's been going through a phase of crying a lot lately so he might just appreciate the peace, who knows! It won't last for long as we have more than one potential placement on the horizon. Watch this space!

Peter's new friend Nana

Esmeralda and I are booked onto a course run by Dogs for the Disabled this year, where we can learn how to train a family pet to become an autism assistance dog for Peter. The dog we already had, Lady, unfortunately is completely unsuitable - we love her very much but she's too easily excited to be the calm presence we need from an assistance dog. We've been looking in various rescues and shelters for the right dog on and off for about a year, and a couple of weeks ago we found her. She's a one year old labrador husky cross, amazing with children, very bright, still very much a big puppy but surprisingly unflappable (which is important because in our house there's certainly a lot of happy flapping!)

I'm going to call her Nana for the blog, (it would be wonderful if she learned how to make the children's beds like her namesake on Peter Pan!) we're sure she'll do well with her training, she's already an integral part of the family.

After a bit of a rocky start, she and Lady became best friends. They whine when they're separated and they play beautifully together.

Peter's reaction to Nana came as a bit of a shock to us. It took him months to even acknowledge Lady when he moved in, it was like she wasn't even there and he hasn't ever spoken to her directly. He hasn't been interested in animals whatsoever - zoos and farm parks are the worst places ever in Peter's opinion, unless they have a good playground! Imagine our surprise when after less than an hour in the house we heard hysterical laughter coming from the bathroom where Peter was eating his pudding in the bath and found Nana with her paws up on the side of the tub being fed spoonfuls of yoghurt by a giggling Peter saying "one for Peter, one for Nana"! (Not something we would normally encourage but it was so lovely we turned a blind eye.) That night, and every night since, she fell asleep at the end of his bed during his bedtime story, much to his delight. The first thing he says every morning is a cheerful "Good morning Nana!" and he's keenly interested in watching Nana's routine and the commands she's learning. We're sure this is the start of a lifelong friendship.

The difference a year makes

It's just over a year since Peter moved in with us which feels like a huge milestone. I remember when we were talking about the referral before we'd even met Peter we said "Give us a year, he'll be a completely different child," and it became a phrase repeated frequently by our friends and family and even other professionals.

Well, it was certainly true, there's just no comparison!

October 2013 aged 4

• Full time nappies with no awareness of wet or dirty
• Very skinny, in age 2-3 clothing with no strength in his limbs or hands
• Wouldn't brush his teeth, couldn't go to the hairdresser or dentist
• Self-harming behaviours (head banging, slapping his face so hard he'd burst his lip)
• Dummy and comfort blanket full time except at school
• 10 single words, numbers to 10 and the alphabet
• Any change, transition or ending an activity would trigger a mega meltdown
• Total refusal to walk outside
• Unsafe near water
• Tried to escape from any building or park we went to
• Communicated in screams or taking our hands to show us what he wanted
• No response to his name
• No crunchy foods - would only eat puree, tinned veg stew or tinned spaghetti
• Couldn't use fork or spoon, ate by scooping with his whole hand
• Drank from a lidded no-spill beaker, and would only drink chocolate milkshake
• No pincer grasp to pick up small items - whole hand grip only
• Took medication to sleep
• Addicted to the iPad
• Very little eye contact and showed no affection
• No self-care skills - couldn't get dressed, wipe his face, put shoes on

October 2014 aged 5

• Dry and clean in the day, nappies at night
• Tall and strong, in age 6-7 clothing
• Brushes his teeth every day, happy at the hairdresser and dentist
• No self-harming behaviours
• No dummy, comfort blanket only for bedtime
• Hundreds of words, talks in short sentences and learned phrases, counts past 100 and can spell some words
• Very rare mild meltdowns now - change and transition are no longer an issue for him
• Walks outside happily holding an adult's hand
• Stays near us or keeps us in sight in parks - no longer tries to escape
• Safe near water, he can be trusted to wait for permission to paddle if it's safe
• Communicates verbally and using a few signs
• Responds to his name, and can read and spell it!
• Varied and healthy diet including a range of textures
• Uses a fork or spoon appropriately
• Drinks water, milk or diluted fruit juice from an open cup
• Pincer grasp is developing
• No longer medicated to sleep
• Enjoys using the iPad when he's allowed to but will happily move on when it's time.
• Excellent eye contact, loves cuddles and kisses
• Gets himself dressed, wipes his own hands and face, puts on his own shoes

It hasn't been easy for any of us at times, but we are beyond proud of Peter for how well he's done getting used to a new home, new boundaries, new school, and now having another little person around and being a big foster-brother. We absolutely adore him and are so glad that he's part of our family. We love nurturing, teaching and encouraging him - we can't wait to see how much he grows and progresses over the next year!

Hidden talents

Our car needed to go in for a service today so Esmerelda picked Peter up from school in a courtesy car.   She pointed out to him that it had a picture on the side and that it was smaller than our car, but Peter didn't seem interested in the car at all. They drove to his Occupational Therapy appointment and when they came out  an hour later, on the way to the car park Esmeralda said "Do you remember which one is our car today?" "PN14 6GG" said Peter immediately. Esmeralda checked, and he had remembered the exact number plate of the courtesy car!

Peter does like cars but they're not a major interest and we had no idea that he was aware that cars have number plates, nor that they would be a way to identify a specific car.

We're wondering what other hidden talents he's harbouring!

Things I love about autism

*It goes without saying that everyone is an individual and these things are specific to Peter and his autism.*

I read something the other day. It was written by a parent - they said that they hated their child's autism and wished they could rip it out of them. I do understand where they're coming from as our children face so many challenges every single day and it can be really really tough to look after them, but I think it's a mistake to separate the autism from the child in our minds. It's easy to be negative about the thing that we perceive is stopping our child being themselves, when in reality it's a part of them - they can't be themselves without it!

So without further ado, these are the things I love about Peter's autism:

1) He is easy to entertain. Peter is a sensory seeker for every one of his senses, so the only thing we really have to worry about is sensory overload. He loves loud and quiet noises, all tactile experiences, strong and mild tastes, interesting smells (he doesn't experience disgust at "bad" smells the way we do), physical movement like spinning, running and jumping, visual input like lights, colours, pictures, moving objects. If there's nothing to interest him at any given moment he'll make his own entertainment by moving his fingers in front of his eyes to make the light flicker, looking at things from the corner of his eyes, flapping his hands, spinning, or making loud noises.

2) He takes joy from the little things. Peter really appreciates beauty, especially in nature. He will stop and examine flowers and insects on our walks, and will stand and gaze at running water for what seems like hours, he loves clouds, rainbows, stars, walking barefoot on grass, the wind in his hair, splashing in puddles. The joy just bursts out of him as though he can't take it any more - his whole body will tense up, and then he explodes into laughter, shrieking and flapping. You can't help but smile when you're near him!

3) He wears his heart on his sleeve. He is not secretive, he doesn't hide his emotions, he's not an introvert. When he feels something, we know about it - whether that is frustration, upset, anxiety, boredom or pure joy.

4) He is predictable. Yes, we get it wrong sometimes, but generally we can predict how Peter will react in situations and can prepare accordingly. Activities and days out take far more planning and preparation than they would with a neurotypical child, but if we try to see things through his eyes we can envisage trigger points before they occur and react accordingly.

5) He loves routine. We have no problems at all putting Peter to bed, because the "tea time, bath time, bedtime" routine is such a safe and secure part of Peter's day that he looks forward to it.

6) He is determined. He struggles to understand and make sense of the world every minute of every day but doesn't let this stop him enjoying life, progressing and achieving beyond anyone's expectations.

Raising expectations

We're finding it frustrating that people seem to have such low expectations of Peter. It took months of his teachers saying that he was doing well, settling in beautifully, a lovely member of the class etc. before we found out about some atrocious behaviours that they were dealing with on a daily basis and were able to help them put strategies in place to improve things. We've just had a similar situation as Peter has just finished three weeks of a special needs holiday club - on the last day we discovered that he had been behaving appallingly from the first day, and the play leaders had just let it all slide meaning that his behaviour deteriorated as he continued to push the non-existent boundaries. When we challenged them they were shocked that we don't accept such poor behaviour at home so it rarely happens - they genuinely didn't think Peter was capable of making good choices.

Why is this? Is it because he has autism? Because he's developmentally delayed? Because his speech is immature and his eye contact is minimal with people who aren't close family and friends? Is it because he's a looked-after child?

How do they expect children to learn how to behave if expectations are so low from the start?

Sibling contact

Peter's having a fantastic Summer holiday! He relaxed into the swing of things about one week in, and we've had some really lovely days out as a family. We even went camping together near the seaside, and Peter enjoyed the whole tent experience, paddling in the sea and watching the boats.

We had Peter's first sibling contact this week at a local soft play centre. Peter has several siblings - some in other foster placements, and some placed with relatives. The children were removed from their parents getting on for 18 months ago, they haven't seen each other for around a year, and it was fascinating to see them all instantly drop back into the roles they had when they were at home. The oldest child became "the parent", the youngest child became "the baby", and they all treated Peter as though he'd made no progress at all since they last saw him although they clearly adore him and have missed him. Two sets of their grandparents had also travelled to be there, and it was a strange and wonderful experience chatting to all the people present, and realising that they are now all part of our extended family because Peter is part of our family. Sibling contact will be arranged at least four times a year, and it will be lovely to watch the other children grow up and see them progress, just as it will be lovely for them to know Peter as he gets older.

One bizarre consequence of having a large, loving, extended family who don't communicate or see each other regularly seems to be duplicate presents! It's no secret that looked-after children tend to have a lot of "stuff" (although we've tried to stem the tide a bit by saving towards more expensive items that meet a sensory need rather than endless toys), but as an example Peter has received no less than three remote control cars from various members of his family for his birthday! Not that he is complaining at all, although he hasn't got the coordination to work them yet so they've been put away for now.

We've noticed that Peter seems to go through phases of rapid progression and then plateaus for a while to process everything before starting again. He's in a rapid progression phase at the moment, especially with his speech and understanding, which has been fantastic as it's reduced his overall frustration and anxiety. He's putting several concepts together now to ask questions and tell us what he wants in more detail - still no grammar, just lists of words such as "come on come on watering can paddling pool Peter blue slide tummy" to tell me I'm not filling up the watering can with the paddling pool water fast enough, he wants to slide down the blue slide on his tummy whilst I spray him!

He also now understands how a calendar works, and accepts if we tell him something fun is happening "on Friday", rather than having a meltdown because he didn't understand that the fun thing would ever happen if it wasn't happening now. We use a visual calendar with symbols for activities we're doing during the week, and he regularly checks it to remind himself what's going on. It will be a very different child going back to school in September!

Summer update

Amazing to think that we're nearly at the end of the first week of the Summer holidays already! Peter had a wonderful Frozen themed birthday at home playing with our friends and their children. We were impressed that he held it together all day and had great fun, although it did mean that there were a couple of days' fall out afterwards, and we ended up taking all his birthday presents away and drip-feeding them back over the next few weeks as he couldn't cope with all the change at once.

Peter found the last couple of weeks of school hard due to the changes in routine and the constant reminders of transition - saying goodbye to the leavers, having his "moving up" day with his new teacher and classmates for next year, talking about the holidays etc. and his anxiety has been coming out at home in regressed behaviours which haven't yet calmed down.

The holidays are also hard for Peter in different ways. We have lots of lovely fun activities planned as well as down time at home, but we also have high expectations of him in terms of his behaviour, tidying up, finishing tasks and learning to do things for himself. It's nothing he's not capable of, but it's extremely tiring and frustrating for him to listen, focus and stay on task so he's been trying every trick in the book to get out of doing whatever we've asked him to do!

Peter's just started Occupational Therapy and we're learning tips to help him improve his fine motor skills at home. We've come to suspect that school are not placing any demands on Peter or trying to teach him much at all as yet, which is such a shame. He's keen to learn, he just needs someone with him to help him focus. He's made huge progress with his language, but at the end of Reception year he didn't know which end of a Pritt stick was which, no one has attempted to correct his "whole fist" pencil grip, and we've eyed most of the art folder that came home with some suspicion as it looked more like the work of a TA!

Even with all the anxiety and regression, Peter is still doing fantastically. We started very casually potty training at the start of the holidays and he loves all the praise and chocolate buttons although isn't yet able to tell us before he needs to go. It will come. He can get dressed pretty much independently now and is working on being able to put his own shoes on. He's mastered opening and closing screw-top lids and is completing 50 piece puzzles. We're excited to see how much progress he makes by the time school starts again in September!

Five years old

Peter's turning five very soon. Five feels like such a massive milestone - it's the end of being a toddler and the start of being a fully-fledged child, and as a parent/carer you find yourself thinking scary thoughts like "only five more years and we'll be looking round secondary schools". One minute you look at your four year old and they seem so so tiny, and the next you wonder how you never noticed how tall they were getting. You start comparing photos from the start of the school year and see all the little changes in how confident and grown-up they are.

So Peter, on the cusp of turning five, here are five things I love about you:

- Your singing! You sing when you're happy, which is 99% of the time. You sing at the top of your voice, and you sing in whispers when we've asked you to be quiet. Even though you haven't worked out the concept of a tune you sing as though your life depends on it and some of my favourite moments are singing duets with you. At the moment you seem to like folk music and show tunes - a killer combination.

- Your independence! Nine months ago I never thought I'd miss you taking my hand and needing me by your side, asking to be carried 100 times per day, gluing yourself to my lap every time I sat down, wanting me to stay by your bedside until you fell asleep… but I do. I'm so proud of you and what you're achieving every day, but I selfishly wish that we'd had more of your baby days to treasure.

- Your communication! You're trying so hard to overcome your communication difficulties. You're working out new ways of letting us know who you are, what you need and how you feel, and when we get it wrong you tirelessly try again and again to get us to understand.

- Your determination! Everyday tasks are more difficult for you to learn, but you don't give up. It took you four frustrating tries this morning to put your hoody on but you got there! You're keen to learn and are patient with us as we work out ways of breaking down tasks for you and giving you the necessary 'muscle memory' to do it for yourself.

- Your memory! You've memorised hundreds of songs and rhymes, entire episodes of Peppa Pig and In the Night Garden, about 20 different Thomas the Tank Engine books plus loads of sections of Disney films, adverts, you name it. You can recall these at a moment's notice with frightening relevance to the topic at hand, whether we thought you were listening to our conversation, or not!

You are going to be a force to be reckoned with as you grow up, and I'm so looking forward to going on that journey with you.

Out of the mouths of babes

We are a Christian family and pray with Peter every day, as well as singing worship music together and attending church. Peter has delayed speech and understanding, and I've often wondered what his first real reference to God or his first prayer would be. Maybe it would be something profound!

Someone was handing round little slices of cake as we were leaving church this morning, and we gratefully took one each to eat in the car. It was the Vicar's birthday cake, so on the way to the car I said that we'd need to say thank you to the Vicar next week for giving us some of his lovely cake. Without missing a beat, Peter said "thank you Jesus for cake, amen."

His first prayer. It was definitely heartfelt and to the point!

We'll work on the theological issue of confusing the Vicar with Jesus at a later date…

The lows

Fostering, like anything is full of lows as well as highs. It's easy to feel guilty when things aren't going so well because overall Peter's making such fantastic progress, but it's important to be realistic. We recently found out that our close friends and family have no idea what our life is like on a daily basis because whenever we speak about Peter we're so full of our love for him and pride in his achievements that they assume everything's fine and dandy at home.  We're still relatively new carers - we need to learn how to use our support network so that they can actually support us!

Peter is extremely full on from around 4am when he wakes, to 6.30pm when he goes to bed. His volume dial is always turned right up and both Esmeralda and I carry earplugs to wear to take the edge off when it gets unbearable. His attention span is very short, and he cannot be persuaded to engage in something if he hasn't chosen to do it himself as he has a meltdown. At the moment there's a big discrepancy developmentally between his brain which gets over-stimulated with very little, and his body which needs high activity levels to burn off energy. There are many things that are completely out of the question for us with Peter for now, such as going out for a meal, going to a playground with more than one entrance, anywhere with a pond, river or lake, going on an aeroplane, staying in a hotel, going to any organised group activity (where there are any expectations to stay in one area/room or follow even simple instructions), staying anywhere more than a couple of hours, having more than one or two visitors at a time. Visiting someone's house is hit and miss - with careful planning we might be able to stay an hour. We can't browse around shops, go to the supermarket, a museum, stately home. We go to church, but sit in a side room as he can't cope with sitting in the congregation. He doesn't play with other children or have friends, so we don't do play dates or birthday parties. We can't use a crèche or leave him with anyone. We can't go anywhere we might need to queue. We have to plan days in advance based on how we think he'll react, but he's very unpredictable so there's a fair chance that we'll have to turn around and drive home 20 mins after we get somewhere. Thankfully we haven't had to take him to the GP as he would have to be pinned down to be examined and it would be traumatic. We have to micro-manage his food as he can't tell us when he's hungry, thirsty or full, grabs any food he can see regardless of whether it's on someone else's table/plate, stuffs his mouth until he chokes and would eat until he was sick.

He needs constant supervision, has no concept of safety or rules, cannot be reasoned with and doesn't understand even simple explanations like "it's closed". He has no comprehension of good/bad behaviour or rewards so things like star charts would be pointless. Due to his size and level of understanding it takes both of us to keep him safe and organise the day, so whilst he's awake neither of us gets much of a break.

There are loads of things he enjoys and can do of course, and we have great fun together, but it takes a lot of energy to "manage" Peter's time and anxiety levels so that we have as many successful days as possible. Cutting Peter's school hours down was absolutely the right choice for him and we can see the benefits, but it's intense and we're all tired. This weekend tempers have been somewhat frayed, so today we veged at home and watched DVDs together.

We'll be speaking to his social worker this week about finally arranging the respite that we were promised before he moved in, but which seemed to fall off the list of priorities once he was placed. He's 5 - we're not going to send him away for the weekend, but we would appreciate Children's Services funding the odd Saturday at a special needs playscheme, or approving a qualified babysitter so that we could have a meal out after he's gone to bed. Eight months is a long time in any job with no time off.

Birthdays and waiting again

I'm not sure whether it's because we knew we were in this for the long haul when Peter moved in, or whether it's due to his age or additional needs, but even though we're now in our eighth month together it still feels like early days in many ways. In contrast, Jack Jack lived with us for only nine months before he was adopted and it felt like a lifetime. We've been thinking about him quite a lot recently as it so happens that Jack Jack and Peter's birthdays are within a couple of weeks of each other. We're looking forward to celebrating Peter's fifth, but it's reminding us of last year when we were planning Jack Jack's first.

We had a catch up with our social worker Jane recently and have officially been put back on the lists so are waiting for the call for a second placement. We know the right child is out there, and it feels like it's coming at the right time for Peter as his attachment continues to progress and he's settled so well with us. We still haven't decided whether an older or younger child would be better for Peter as there are positives and negatives to both, so it will be much easier to receive a call from the duty team and assess whether we think a child is the right fit for our family based on their specific needs rather than an imaginary set of needs based solely on age. Peter has only really been interested in playing with/near other children for a month or so, so it seems like good timing - I think he'll love having another child around once he gets over the initial shock of having to share our attention. It's quite exciting passing the spare room, glancing in and wondering who will be living there in the next few weeks or months.

Full of surprises

Peter is amazing us every day at the moment - he seems to have decided to teach himself to read, armed with his weekly ration of Cbeebies, a couple of Vtech talking toys and a shelf full of picture books. He knew all his letters before he moved in with us but we've kept it very low key since then - a few matching games here and there if he showed an interest, but all based on letter names, not sounds. (I clearly hadn't read the "Jolly Phonics" handbook…)

We received a report from school recently that was very positive, detailed and descriptive in all areas of Peter's development, although they seem to think that he only knows the letters that make up his first name and isn't fussed about the rest of the alphabet.

Imagine our surprise when out of the blue a few weeks ago, Peter tips a pot of foam letters into the bath, plucks out c, a and r, sticks them on the side of the bath and says "car". He played it cool after this, but earlier this week followed it up with "weel", after a thoughtful and considered process of sounding the word out phonetically (hence the missing "h", but interesting that he put in a double "e".)

He's also started recognising a bizarre selection of whole words - so far it's been "warning", "sky" and "moo", all out of context so not recited as part of a story or with any clues of particular fonts and colours. It's fascinating!

We've bought some resources to start helping him along, but are taking his lead. As school are finding out, our boy isn't a performing monkey, he's very bright but on his own terms. We're so proud of him!

Easter holidays

We had a fantastic break. We'd planned in an activity for each day of the first week, and then went on a trip away for five days on the coast. Peter loved the beach and paddling in the waves, and even had his first ice cream in a cone! He threw himself into every opportunity that came his way, and it was amazing to see his independence and confidence grow over the fortnight.

He has so much energy and enthusiasm that it's easy to forget that although physically he's nearly five, mentally and emotionally he's about half that. By the Friday before school was due to start again we realised that it was all getting too much for Peter. We reigned it all back in and spent some quality quiet time at home, reading stories, laughing together, doing jigsaws and singing, without any distractions or stimuli like the TV, iPad or visitors. Peter really responded well to the new relaxed routine and we've had a peaceful and easy start to the Summer term.

With all this in mind, we've decided to calm things down around here for the time being. Fewer planned activities, less screen time, going out at when it's less busy, and a focus on family time at home. We've even cut down on Peter's hours in school as we saw how much better he did in the holidays when he was able to nap every day and the effect that had on both keeping his moods regulated and the quality of his night time sleep. We'll be picking him up after lunch and will evaluate how he's doing at half term to see whether we'll continue.

In the spirit of Easter, it's been a wonderful rejuvenating time, and feels like a fresh start for all of us.