Aaaand I'm Back...

I've been a little lax with my blogging since December. It's always such a busy month and we've had lots going on since then so it sadly had to take a backseat. But I'm back with a vengeance and intend to keep it updated as often as possible. Much has changed since I last blogged yet in some ways things stay exactly the same. Maybe that's an indicator of having a special needs child.

 

 Our biggest change is Bee is that walking confidently without the aid of her walker. She's still a little wobbly sometimes and especially clumsy when she's tired but in the main she walks everywhere now. I can't tell you how thrilled we were. More than thrilled. Even now, months later, I watch her toddling round the living room or down the aisle at the supermarket and marvel at how far she's come. Bee revels in her new freedom and it's created some challenges for us in how to deal with a very strong-willed toddler who wants to go left when you need to go right. We've invested in a LittleLife Daysack (the bumblebee design of course!) and I highly recommend them. Even if it did take Bee some time to realise that the handle is for us to hold, not her!

We've always considered ourselves very lucky when it comes to Bee's behaviour and thanked our lucky stars when the 'terrible twos' never materialised. She's always in a good mood and very rarely cries, unless there's a good reason. She says 'please' and 'thank you', most of the time without needing to be prompted and is generally charming and sweet with everyone. Or so we thought. We've recently seemed to hit the terrible threes. On top of this Bee has learnt how to be devious, highlighted in a recent trip to my Grandparents. We change her nappy on the bed there and she also likes to bounce on it when supervised. Whilst sitting in the living room chatting and drinking cups of tea Bee came over to me and asked:

"Mama ba" (mama bed)

"No Bethany, we can bounce on the bed when the drinks are finished"

And with that she toddles off so I rejoin the conversation. Minutes later I felt a small hand on my knee and looked down to see Bee, with a nappy in her hand and patting her bum. "Mama ba". You devious little minx! But clever at the same time, very clever!

So now we're having to become requainted with our toddler. Her likes and dislikes have changed, she's tolerant of and aversive to things she wasn't before. It's been a challenge as through all this her speech delay is still causing us some communication problems. She gets very frustrated when she can't express to us what she means or wants.

Something that hasn't changed a great deal is Bee's compulsion habits. We still have to close doors behind us, sit in the same seats in the living room, read the same book over and over again...the list goes on. Sometimes it can be difficult finding the line between accomodating her obsessions and not reinforcing them. It's hard to know where one ends and the other begins, especially when we know it's something she can't help.

Health-wise Bee has been doing very well, with just the one nasty bug over Christmas which landed us in the emergency GP's on Boxing Day. She seems to be much stronger these days, although with a constantly snotty nose (thanks nursery!)

Talking of nursery: Bee loves it. She is now asking to go every day using the Makaton sign for 'nursery'. We're really happy about it as she struggled to settle at first and would scream and cling. Her confidence has soared since starting there and we're really hopeful that Bee will be able to attend mainstream school.

Overall our girl is coming on really well, exceeding everything we were told to expect for her. The fact that we're even able to think about mainstream school is testament to what a clever, strong, beautiful daughter we have. Love you Bethany May xx

Partay!

Three has come around so quickly, it almost hit us by surprise. Practically overnight our baby girl has turned into a bright, happy, cheeky, demanding, crafty and tantrum-throwing toddler. Her understanding, speech and mobility is improving all the time and we're confident that it won't be much longer before she's catching her peers.

 
We wanted to spend Bee's birthday doing something she would love, which meant soft play, soft play and more soft play! We chose a sensory play centre about 40 minutes away from us. The pictures on the website looked really good and (as we wanted to take advantage of the last of this summer's sunshine) we planned a picnic in a nearby park for afterwards. So with my mum, brother in tow we set out to meet Clare & Isla.

Photo courtesy of http://www.dfosterphotography.com/index.html

Unfortunately the soft play we'd chosen wasn't as good as the website suggested and it was a long way to go for something that we could have done on our doorstep but our girls had a great time anyway. 

Photo courtesy of http://www.flickr.com/photos/gimbulate

 After an exhausting play session (for the adults!) and a slight detour (thanks sat nav!) we went for dinner at a local park. Thankfully the sun was shining and we found a nice shady place under a tree and by a lake. We munched on sandwiches, crisps, cakes and chocolate.... with some token apple slices and grapes thrown in.

Photo courtesy of http://www.dfosterphotography.com/index.html

 

 

 


 
Each year we have promised ourselves that the next birthday Bee will be able to have some of her own birthday cake. And this year we were finally able to keep that promise! On her third birthday Bee had her first slice of birthday cake!

And it went down very well!

Especially the icing! I think my girl has a sweet tooth!

Isla was also very impressed with her slice of cake and even had a good go at helping Bee with hers. Then they both had a go at each other's soggy leftovers. Lovely!

 

 We finished the afternoon with a walk through the park, Bee on her walker and Isla with Bee's new baby pram. Both girls are doing so well with their mobility. At one stage I could never have imagined walking through a park with my girl walking next to me.

To see her now, so independent and confident, makes me marvel at her strength of character. She inspires me every single day.

Happy Birthday!

Today is Bee's 3rd birthday. It's such a cliche to say that time flies but it really does.

Three years ago today, at 5:12pm, I was being delivered of a tiny bundle that would change our life. Bee had a difficult start: SCBU, feeding problems, breathing problems and even when we got her home she was still in and out of hospital with illness. She missed milestones and we despaired, confused doctors with her undiagnosed problems and still managed to melt everyone she met with her constant smile, curly hair and big brown eyes.

Two years ago today we were throwing a big party in honour of that first difficult year coming to a close. We had answers and medical interventions and life was finally becoming slightly easier. Bee couldn't sit unaided, much less toddle about like others her age but she still tackled every challenge thrown at her with aplomb.

One year ago tomorrow Bee was crawling, making sounds that sounded suspiciously like the beginnings of words and understanding more and more of what was going on around her.

Now, as she's turning 3, Bee has a vocabulary of over 30 words, is flying on her walker and has impeccable manners. She charms everyone she meets and grows in confidence every single day. We still have challenges with feeding and some sensory issues but after her severe developmental delay the fact that she's almost caught up with others her age just blows me away.

Today we spent a lovely day at a soft play centre then a picnic in the park in the glorious sunshine. Bee's Grandma and Uncle Chris came along, as did our lovely friends Clare & Isla. We've had lots of family around to visit and Bee has been spoilt with cards and gifts so thank you to everyone for your thoughtfulness.

Happy 3rd birthday Bethany May.

We love you all the world xx

A Walk in the Park

This weekend Bee and I spent a lovely afternoon on Sankey Valley Canal with my Mum and her dogs. The sun shone down and, despite the dogs, Bee did lots of walking. Her confidence around them is getting better, although she's still very afraid if they come too close and hysterical if they bark.

We did lots of walking and helped Bee collect found objects to put in her little In the Night Garden tin. It's a great game to help combat her tactile defensiveness.

That may well have been the last of the meagre sunshine for this year so I'm glad we got out and enjoyed it!

Nursery

Well, we've done it! Bethany has survived her first session at nursery. And her second, third and fourth! Equally as impressive: I survived them too!

Heading into nursery

Her first session was only an hour long and my Mum and I, who I had took along as Foz had to work, were able to stay. Bee was able to play with the nursery assistants while I did a lot of form-filling and boring stuff like that. Every so often Bee would come scooting over with her walker, just to check I was still about then she'd scoot off again, eager to find the next new toy! It was a lovely session, the nursery introduce one child at a time so we had the full attentions of the staff while we were there. They were able to start getting to know Bee and we were able to get to know them, very important for a parent like me who's never left her child with a stranger.

The nursery is wonderful. It's a long, low building split into 3 sections. At one end is the private nursery, in the middle is the mainstream nursery and at the other end is the special needs provision nursery. Bee's nursery is split into two rooms: a carpeted room with the main bulk of toys plus a kiddie play kitchen, reading corner and such. There there's the craft room with lino floors, tables and chairs plus my favourite part: an interactive projection on the floor that responds to the childrens touch. There's also a dedicated sensory room that the children have free rein of and an outdoor area that is completely covered from the elements and has sand & water tables, ride-ons etc. Each of the three connected nurseries has a similar garden of their own and all three open out on to the main garden, which runs the length of the entire building. It's a massive expanse of grass with winding pathways marked out like roads and, in the middle, a giant sand pit with a huge play structure. In the back corner is a small, innocuous-looking shed which turns out is the 'den-building shed', full of chairs, sheets, brooms and other vital den-building supplies. What more reasons do I need to love this place!?

Our hour seemed to pass very quickly and by the time it was up Bee was not ready to leave, I had to bribe her out to the car with promises of Mr Tumble when she got home!

The second visit was scheduled to be a longer one, an hour & a half in length and this time there were other children there. I was supposed to leave her for a short time during the session but only as far as the staff room for a cuppa, just far enough that she couldn't see me but I was still on hand incase she got hysterical. There's one-way mirrors so I was able to watch what Bee was up to without her being able to see me. Turns out she had a blast and barely noticed I was missing. I was so proud of my confident little girl although a small treacherous part of me felt a little disappointed that she hadn't cried and clung like a limpet around my neck.

That second session went so well that I was actually quite looking forward to the third, her first full 3 hour session when I would bite the bullet and go home. Although her behaviour so far showed all the signs that I wasn't going to have any problems. So I was surprised when we pulled into the carpark and Bee started to cry and say "no" over and over. Here was what I had dreaded: guilt-inducing hysterics on nursery drop-offs. She wouldn't walk into nursery, wouldn't take her coat off, wouldn't allow me to put her down, wouldn't look at any of the toys.... here was my disappointment about not feeling wanted the week before coming back to bite me in the ass. After a few minutes of crying and telling me "no, home" I managed to encourage Bee to sit next to me by some toys. One of her teachers came over to play with us and as Bee's attention turned slowly from me to her I managed to sneak away. By 'away' I mean outside of the room to sit and watch her through the one-way mirrors. It took all of 20 seconds for her to notice I was gone and the hysterical crying resumed. This time interspersed with "mama home". Oh the guilt.

I've never felt anything like it, like I was abandoning her. Even though I would only be in the next room I kept thinking how it must appear to Bee: like I'd just left her with complete strangers and not coming back. What a bewildering experience it must for children when their parents drop them off and walk away.

Thankfully Bee's teacher managed to calm her down with a variety of distraction techniques and I went to sit in the staff room with a fortifying cup of tea. Every so often someone would come in and let me know that she was ok and play with this toy or that toy or, at one point, in the sensory room. Occassionally I would sneak a peep through the one-way mirrors at what she was up to but I tried to keep this to a minumum. Bee had settled and was playing happily, I needed to do my own version of the same. It was decided between myself and the staff that we would shorten Bee's time at nursery for that session, give her the chance to realise I would come back and not leave her there. She was all smiles when I appeared, shouting "mama" and showing me the doll she'd found to play with. What a wonderful feeling when your little one is so full of excitement from their day, makes all those tears worth it. So although not a completely sucessful third session it finshed better than it began.

The day of session four dawned and I tried to prepare Bee early, so when we started getting ready for nursery it wasn't a shock. "We're going to nursery today honey, going to play with all the toys..." etc etc. Each time I mentioned it I got a very firm "no", not a good sign. Still, it had to be done. So 12:30 found us pulling into the nursery carpark. There was no tears this time although a lot of "no" in a distinctly wobbly voice and she wouldn't walk either, had to be carried in. We had the same battle over getting her coat off, by the time I succeeded you'd have thought hanging a coat on a peg was the most exciting game ever!

Bee's teacher took her hand and led her into the room, moaning though she was at least it wasn't outright hysterics. I followed them in as Bee kept checking I was behind her, I wanted her to settle before I left. It wasn't long before she was engrossed in the toys so again I snuck away. She began to cry when she noticed I'd gone but it only took a matter of a minute for the staff to settle her and she was happy again. This time I felt secure enough to leave her, so I came home for a cup of tea. The staff had assured me that they would ring if Bee became too upset and we agreed I would return after an hour to check on her and see if it was suitable to leave her for the remainder of the 3 hour session. When I popped back I could see though the one-way mirror that Bee was quite happily playing with the toys and chattering to herself so, without letting her see me, I snuck away again and returned home for the remaining hour, comfortable that she was being looked after and not distressed at all.

Our next session is tomorrow and I'm hoping that Bee continues to improve on the drop-off. I know she loves the time at nursery - this past saturday she specifically asked to go, she just needs to get over that initial separation anxiety. I think her nursery is going to be a wonderful place for Bee to grow and develop. Their facilities are second-to-none and the staff are so supportive and inclusive. The children from all three nurseries get to spend time together through the sessions so Bee will get to mix with children of different ages and abilities. I'm so excited about the next two years she will spend there.

Equipment Excitement

We've had a very exciting week this week and one I've been dying to share!

We received a phone call on Monday from Bee's physio to say that the walker we've been waiting for has finally arrived!! Excited? I could barely contain myself!! Thankfully Foz was off work that day so we were able to go down and collect it together as a family. The phone call came mid-morning and the physio said she could fit us in for the collection at 1pm. So 1pm it was, only a couple of hours wait but my word, did it drag.

We didn't take the little toddle truck Bee has been using as we wanted her to give the walker a really good try and not see the toddle truck as something to fall back on. Bee generally enjoys physiotherapy. It's a large room with lots of space and lots of things to climb on, plus toys that are different from her 'home' toys. All that equals lots of fun and a very tired Bee! This time there were no toys out save a musical toy Bee especially likes and a doll with a walking frame.

We'd be expecting standard-issue NHS equipment: black and/or silver, very ungainly and ugly. Yet in the middle of the room was a lovely, shiny gold walker with red rubber handles, small and dainty, perfect for my little miss. I was thrilled! My only slight reservation was the way in which Bee would have to walk with it. She's used to a toddle truck she pushes in front of her. this walker wraps around the back of her legs and has two handles on the sides to hold. I wasn't sure how well she would adapt to this new technique.

Bee did not like the walker. We had tears and tantrums before she would finally try it and even then it took a lot of encouragement. We'd been prepared for that and expected it. Bee can take a while to adapt to anything new and to be honest we didn't expect her to master her discomfort, verging on fear, in the first session. The doll the Physio had brought out was a masterstroke though and a wonderful aid to ease Bee's tension about her new walker. It took lots of encouragement from myself and Foz for her to walk and then it was slightly under duress but she did it! I can't begin to describe the pride when I saw my little girl walking, under her own steam, and choosing where she wants to go. Such a small thing but so huge.

The walker has swivel wheels which can be locked so they only go in straight lines. We started with this as Bee is used to a toddle truck which doesn't turn and we were a little concerned about her ability to steer, as she's never done it before. In short order Bee had straight lines down to a tee and I was feeling giddy with excitement! Throwing caution to the wind we decided to try the swivel wheels, just to give Bee a go. She was a little tenative at first and had a tendancy to drift one way when walking but she soon had that down too. The Physio was happy with her progress and we were confident that with more practise Bee would fly. We were deemed ready for home and so we headed for the door... Daddy in front, Mummy in back and Bee chugging along in the middle! We had a couple of small mishaps into walls and doorframes, partly due to steering inexperience and partly due to being unable to stop herself before hitting something! After making it out of the appointment room, through the waiting room and to the main door we gave Bee the choice stop and be carried. Carried be damned! My girl wanted to walk!!

Walking back to the car

And so she's away! Tomorrow we'll have had Bee's walker for one week and she's flying! She loves to walk! We've walked round Tesco, around a garden centre, down the road to meet Daddy off the bus, even just around the front drive. Any excuse is excuse enough for Bee. Not a day passes when she doesn't say "mama, dior, a-hide", which translates to "mummy, door, outside". What an achievement for her! Not just the words and stringing them together, but that will and desire to walk, to have her independence. We couldn't be happier.

Whoops, wrong turn!

Of course with this new-found freedom comes a small sting-in-the-tail: when Bee wants to go <<- this way and I need to go that way ->> we get some epic tantrums!! We've been amazingly lucky so far in that we've had barely any 'terrible twos' and so this is all part of the bargain. Those tiny rare meltdowns are an insignificant price to pay for such pure, unadulterated freedom for my girl.

A while back I found a piece of equipment online that looked just perfect for Bee, only it was £90, a lot of money. It's called a Little Helper FunPod and is designed for use around the home to replace standing on chairs and such to reach things. Bee is getting to an age where I'd like to do bake with her, let her help with the dishes and similar activities. Unfortunately Bee does not have the balance or co-ordination to stand on a chair, she isn't even standing unaided yet. I could never trust that she would be able to stand safely on a chair or similar. The FunPod states that it's suitable up to age six so in theory Bee would get a lot of use out of it.

We recently ordered one and I've been waiting impatiently for the day of arrival. Coincidentally delivery day happened to be the day we were out collecting Bee's walker with the Physio, we came home to a 'missed delivery' note. How frustrating! The following day Bee and I travelled to the parcel warehouse to collect it, a lovely big and heavy box with 'FunPod' emblazoned all over the sides.

Bee's FunPod

Getting home I unpacked it, built it up and put it in the kitchen. Bee came snooping around and was very interested in this wonderful new addition and was very insistant about being picked up for a good look. I placed her in it, hoping she'd love it but worrying she'd be afraid. Not a chance! Such excitement from her! She had a good look at the edges, a bit of a nibble and did lots of standing up and sitting down inside it.  All in all, a win! That first session we spent eating chocolate biscuits and playing 'peepo', with Bee sitting down and standing up shouting "hiya, bye, hiya, bye".

Since then it's more than proved it was worth every penny of that £90. Bee stands in it to colour or munch on snacks while I cook tea, we play splashing in the sink and I can't wait to try baking. All the while I know she is perfectly safe, at no risk from falling.

Fun in the kitchen sink

Splashing!

There are so many things that parents take for granted with their children, the small things every day that you don't think about. For them to jump in puddles, run and kick a ball, climb in the park... Such simple pleasures a child has and ones that should be appreciated. Now, thanks to this walker and FunPod, my girl will get those same opportunities. I can't wait for the grazed knees, grubby trousers and rock-hard cakes!