Why?

One of Bee's main challenges is her lack of language skills. A little while back when I collected Bee from nursery a member of staff mentioned they were really pleased as Bee had used a couple of words they hadn't heard from her. They then went on to say that she was now up to a handful of words she was regularly using. Which was great, except at home she was using dozens...

So over the Christmas break, while she was with me all day, every day I decided to make a list of the words she was using and how she was pronouncing them. I'd lost track of my old lists when she hit 50 words and it concerned me that, although we knew she could use a lot, nursery wasn't hearing them from her. By the time nursery started again in January my list had over 90 distinct words, yet within nursery she was only using 5/6. Of course, nursery isn't unique: Bee doesn't talk much at all outside of home, regardless of where she is. She especially doesn't do well if put on the spot. I decided to keep on with my list, adding to it whenever I heard a new word from Bee. We're now up to 143. Compared to the average toddler milestones (a 2-year-old should be at around 200-300 words) Bee is still quite a way behind but she's progressing and her language seems to be on a steep learning curve at the moment. The words can still take a little deciphering though: "ba" could be bath or bag and we rely a lot on context.

My favourite at the moment is "pi pi dee dee" for Peppa Pig DVD and I'll always love the way she calls Mr Tumble "beebul".

In the last two weeks she's found a new word which was thrilling at first and now I just want to gag her. This was a conversation earlier today:

Bee: "Mama, Pi pi dee dee"

Me: "Not at the moment"

Bee: "Why?"

Me: "Because we're going to get Daddy from work soon

Bee: "Why?"

Me: "Because he's been working all day and now it's time for home"

Bee: "Why?"

Me: "Because Daddy needs to go to work to earn pennies"

Bee: "Why?"

Me: "So we can pay our bills and buy nice things for Bee"

Bee: "Why?"......

.......and on it goes. And on and on and on. I don't really have any experience of it (Bee being our first) but I feel most kids would reach a natural stopping point when there's no longer a reason to ask why. We don't get that with Bee. We get to a point where we go round in a question/answer circle as there's sometimes just no answer for "why".

It's a wonderful development, we're genuinely thrilled that Bee has reached a level of curiosity about the world and the things going on around her, enough to ask about them. However she does have a habit of being very, very repetitive. We often have the same conversations and the same seems to be true of "why", it comes after every single statement/comment/answer we give. Earlier today we had a conversation that went like this:

Bee: "Mama, play doll"

Me: "Of course we can play dolls honey"

Bee: "Why?"

Me: "Well, because you asked to"

Bee: "Why?"

Me: "Well I think because you want to play dolls"

Bee: "Why?"

Me: "Because you like your dolls"

Bee: "Why?"....

....And so on. Sometimes I think she asks as a matter of routine, rather than a genuine curiosity as to the answer. The above conversation doesn't seem to make much sense as she's asking me to explain why she wants to do a certain thing. Still, Bee asking "why" all the time is opening up more conversational opportunities with her and we don't seem to be stuck as much in the same topics that she will normally stick to. Which can only be a good thing!

Playtime at the Park

This week we had a lovely warm-but-not-hot, rain-free afternoon and so we took Bee off to the park! We've not been in a little while as the weather's been pants and we've had lots of activities to do at home.

Bee had lots of fun toddling from structure to structure, never stopping on one thing long. She's a real flitter is my girl, she reminds me of her nickname-sake: a bumblebee.

One thing this afternoon outing highlighted was Bee's increasing tolerance of grass. When we arrived she hadn't wanted to walk across the field to reach the park as the grass was slightly long and she could feel it touching her ankles and lower legs. She was insistent that I or her Grandma held her hand for reassurance. But despite her concern and obvious discomfort she made it across with no tears or tantrums.

The park is mainly rubberised surface and grass, with paths leading from structure to structure. We tried to encourage Bee to take the shortcuts across the grass to the next play thing rather than the longer path routes but she was only comfortable doing that whilst holding someone's hand. However, as the afternoon wore on she seemed to become more accoustumed with the feeling of the grass and braver with it. By the end of the afternoon Bee was tackling the grass herself without any need of encouragement or reassurance.

That's my girl!

Behavioural Bits

I've mentioned in previous posts that Bee has started to hit the 'terrible twos', she's become defiant and willful and a little sneaky. We're aware that Bee struggles to not only process information she is given but remember it once told. We'd been looking into a suitable punishment and reward system to tackle the naughty toddler stage and the only thing really jumping out at us was the 'naughty step/spot' system. The idea being that when the time comes to punish a child for bad behaviour they have to sit on a designated step/spot for one minute per year of their life. In Bee's case, 3 years = 3 minutes. Our major concern about this is Bee's inability to retain information or a set task for longer than a minute or so. She needs lots of prompting to remember what she's supposed to be doing and can easily forget after a very short time when her attention wanders. If Bee can't remember why she's on the naughty spot then what is it acheiving?

Another challenge we're facing is Bee's autistic-like tendancies.She's started to have little meltdowns when her routine is changed or there's a sensory issue she doesn't like (texture/sound/etc). Of course we know Bee isn't wholly responsible for her actions during these moments, to a certain extent she can't help herself, but we need some strategies to help minimise and cope with them.

With this in mind I contacted our local SN nurse who recommended the behavioural clinic at our local CDC and, after a short time on the waiting list, we had our appointment today.

It turned out to be a very productive appointment and we were very pleased with some of the advice that came out of it. We're going to introduce a naughty spot (or little mini rug) for those toddler moments when Bee is just being a toddler, with a kitchen timer to give her a audio/visual prompt. We're going to start on 30 seconds of sitting still, a challenge for Bee, then slowly work up to the 3 minutes in 30 second increments. For the autistic-like meltdowns we're mainly to ignore them and walk away (unless she's in a dangerous position) until she calms enough to come after us. Then we're to brightly move her attention on to something else. We've also discussed using visual prompts such a cue cards to help her understand the activities we're doing that day to try and avoid meltdown situations.

It's going to be a challenge but I hope with some of the adjustments we discussed in the appointment ours and Bee's life will be a little easier and more peaceful.

The Start of the Statement

This week we had our initial appointment with the educational psychologist to start the statementing process for Bee. It was something we'd been looking forward to and dreading in equal measures.

Our appointment was scheduled for the afternoon, after the educational psych. had spent some time with Bee in the morning. Thankfully Foz was off work so we were able to attend together. It can feel a little overwhelming sometimes attending these kind of things on my own while Foz is at work so I'm always grateful when we can do it together.

For those unfamiliar a statement of special educational needs to a document setting out what your child's needs are and what assistance the council/school is legally bound to provide to ensure that your child reaches their full learning potential. We are very lucky that Bee will be statemented automatically, many parents have to fight to get that for their child.

The ed. psych was lovely, very friendly and eager to reassure us that she's on our side and wants to help us get everything that Bee needs. She began by asking us all kinds of questions like how we felt Bee was doing, what areas we felt she needed assistance in, where she was excelling, what things she liked to do, what she didn't like to do etc. Our answer was, of course, that she is flying. Since starting nursery she seems to have improved in every area. She's more confident, communicates more, mobility is better, the list goes on. I found myself having to forcibly stop myself from going on and on about how fantastic she's doing and how proud we are.

Then it came time for the ed. psych's turn. She asked if we minded her giving us some observations she'd made about Bee during her time with her that morning. She was quick to reassure us that her observations were made during a 'snapshot' of Bee's time, there'd be things that Bee would or wouldn't do during the session that she may or may not do at home so we were to take everything with a pinch of salt. 

She began by telling us what a sweet, pleasant, bright and curious little girl Bee is and that we should be very proud of her (which we are!) Looking back it feels a little like that was the sweetener before the bad news.

Next came the observations:

• Bee interacted brilliantly with adults, was able to engage them and knew how to make her feelings/desires clear through language, sign or gesture. But Bee did not engage other children in play. She would play next to other children, but not directly with them. Occasionally she would become interested in something another child was doing and would approach to have a look, but would not make an attempt to join in.
• Bee would sit during group time and listen/respond if an adult was talking to her directly. Once the adult had moved on to talk to another child, or to the group as a whole Bee's attention wandered and she didn't appear to process the information that was being given.
• Once given a task to perform, in this instance filling a bucket with water from the water pump and using that to fill the water play table, Bee could begin to carry it out but struggled to complete. She seemed to forget what she was supposed to be doing and needed a lot of repeated prompts to carry out the whole activity.
• Although very confident walking on smooth flat surfaces Bee was observed to need assistance with mobility during use of the water pump, which stands at the top of a slight incline. She managed well by herself towards the pump but on the walk down the incline she asked to hold the hand of a staff member for support.

From there the ed. psych was able to make some initial recommendations for the statement:

• Bee has severe needs with communication. She has a handful of Makaton signs and some language but the words are unformed and difficult to understand.
• Bee has severe needs with mobility. Although she is able to walk unaided on flat, smooth surfaces Bee struggles with any uneven surface or inclines. She doesn't watch where she steps and will step off edges without realising. She needs an adult with her for supervision at all times.
• Bee has severe needs with learning. When engaging with one adult in a direct conversation Bee will listen and process information she is given. When that conversation encompasses more children Bee struggles to engage in the same way and can't seem to process information she receives. This will have a massive impact on her in classroom learning.

This report for us was pretty devastating. We'd been so proud of Bee and so pleased with the progress that she'd made we'd gone into that meeting a little naively, thinking that the educational psychologist would be equally impressed and tell us that Bee is perfect and would do fantastic in a mainstream school. To hear the words "severe needs" repeatedly was a bit of a shock to the system. Bee is our first child and I think we forget sometimes that although she is doing really well for what we'd always been told to expect, she's not doing so well in comparison to other children her age.

In September Bee is due to go up to 15 hours a week at nursery from 6 hours. We'd been considering our options for that: whether to keep her entirely at the special needs nursery, split the time between a special needs and a mainstream or move her over to a mainstream nursery entirely. We'd been leaning towards splitting the 15 hours between her current special needs nursery and a mainstream, the idea being that she'd get the 1-on-1 she needs at the SN nursery and the 'school' experience at the mainstream. We had been hoping that Bee would have achieved enough to attend mainstream school in September 2013, even if she needed extra assistance to do so.
Since this meeting though we'd reassessed our thoughts on the matter. It would seem that a SN nursery is best for Bee at the moment and we will probably make the decision to keep her there for the full 15 hours in September. We want Bee to achieve her full potential and if that means a special needs nursery and eventually a special needs school then that's fine with us. The last thing we want is for her to struggle and be branded a 'failure' in any mainstream setting.

For more information on Statements: http://bit.ly/aeh4YB

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

One Week and Counting...

Today marks one week until Bee starts nursery.

Feeling: apprehensive, nervous, excited...

In so many ways next week can't come quick enough but I could wait forever. I've never left Bee with anyone who wasn't close family and so the thought of leaving her in the care of complete strangers is terrifying. Even if it is only for 3 hours twice a week. I know her quirks and foibles, her likes and dislikes, her tolerances and what she means when she's only making sounds. What if the staff don't understand her? What if she's unhappy? What if she doesn't make friends? What if she's left out or left behind?

Despite my worries, every day it becomes more apparant that Bee is ready for nursery. In part I can't help but feel she's being held back by being at home with me all the time. There's only so much I can teach her before she needs the interaction, encouragement and friendship of her peers. Even in group speech therapy she dives right in and doesn't look back, watching the other children intently and pushing herself forward to be included.

I'm so proud of her, of her confidence and willingness to join in but my heart aches at watching her leave the baby years behind and I just want to cling on and not let her grow up. Then I remind myself that if I did that I'd be missing out on all the wonderful things to come. Her first school play, learning to ride a bike, doing homework together, first boyfriends (despite what her Daddy says!) and those special Mother/Daughter moments that I cherish so much about my relationship with my own Mum.

I don't want to be a Mum that holds her child back because I'm scared of losing the special little person she is now. Instead I'm going to watch her run from me into the next stage of her life and I'm going to smile and wave and encourage her to go. I might cry but my tears will be short-lived. I'm going to love every second of watching her grow.