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!

Catching Up

Wow, it's been a while since I last blogged! 8 months! It's been a busy time with lots of crazy family-goings-on, Warrington Wolves winning *another* Challenge Cup and a break-in, not to mention our little Bee turning 4 years old! It's strange how all of a sudden she seems so grown up, like it's happened all at once. Now we have a proper little girl with a personality and sense of humor, who likes to tell us "now" when she wants something and has started choosing her clothes for the day; a right little madam!

We've seen many changes in Bee in the last 8 months, across the board. Her development is progressing well and we think a huge part of that is increasing from two afternoons at nursery per week to five mornings. 

Her learning and cognition has improved vastly and we think her understanding educationally has really come along. Although she's not quite at an age-appropriate level (her speech therapist approximates 3 & 1/2) we know she understands a lot of colours and the numbers 1-10, a big achievement.

Speech-wise Bee now has a vocabulary of over 90 words and is gaining more by the week. Many of her words are just syllable sounds and can sound the same but she understands and attempts them. She recently said 'guitar', which her daddy was especially thrilled about!
We saw the cleft palate team at Alder Hey again in December but unfortunately she still hasn't got enough clear speech to make a decision on her submucosal cleft repair. It's not something we'd even consider unless the surgeon could guarantee us that it would benefit Bee.

 Since Bee became mobile and left her walker behind there's been no stopping her. Although she still tires fairly easily, she chooses to walk in most situations. She can even navigate curbs with a little support! She's a little unsteady on gravel or uneven surfaces but her strength improves every day.

We had concerns recently about Bee's feet turning out when she walks and the way she dragged her left foot when she became tired. We know hypotonia is still an issue for Bee so I booked another appointment with the physio to see if it's anything we should be concerned about. Now, five weeks later Bee has a lovely pink pair of Piedro orthopaedic boots which we're slowly noticing is having a beneficial effect, she's much sturdier and we've not noticed any dragging of her feet.

Bee still likes her routines and can be upset if things are different than what she's used to but she seems to be needing rigid structure much less than she did at a younger age. I've always felt that Bee used structure and familiar things to feel secure when she's lacking in confidence. As she grows so does her confidence and she seems to not need the refuge of routine as much.
Similar can be said of her fear of texture. No more does she panic when on grass and we've even witnessed her playing in a sandbox! Major progress! We feel nursery have been a massive part of this change in Bee, her confidence has soared since being there.
The biggest example of this was before Christmas at a local garden center. We'd gone for a meal & a browse and I noticed they had a table set up for facepainting. Now, we've tried this before. It was an absolute no-no. Not only does it involve someone touching Bee's face, it's them touching her with something cold and wet. She freaked. So consequently I didn't have high hopes for this time. But I asked her anyway and surprisingly she insisted she wanted something done. The girl doing it was very nice, she tried asking Bee what she would like but of course Bee just kept trying to show her her doll. I thought it was best to start small so I gave Bee a choice between a flower or a bumblebee on her cheek. She chose a "bebe" - bumblebee.

Aaaannnnnd..... voila! 


She did it! Bee actually sat still and allowed a complete stranger to not only touch her face, but touch her with something cold and wet! I was so proud! Of course I had to keep stopping her from poking at it or trying to take the brush off the girl, as you can see in the picture her hand is sneaking towards one of the paints! But overall it was hugely successful and she spent a fair amount of time afterwards admiring her new "bebe" in the mirror!


Just recently Bee had another video fluroscopy. We had one towards the end of 2012 but unfortunately Bee would not cooperate and drink the white liquid so we came away frustrated. She's understood for a long time what 'drinking' is now and we've been offering her water, which she readily accepts. We're desperate for a positive video fluro result as it will be the beginning of trying to wean her off the mic-key button. And so recently we finally received our appointment through for another. Of course we get to the appointment and Bee refuses to sit in the chair, not a good start. She initially refused the drink this time too but I managed to persuade her to take a small sip. When she realised it wasn't water she immediately spat a majority of it back out but the speech therapist was able to see that some did go down her throat and.... she didn't aspirate it!! Wonderful news! Of course this was tempered somewhat by the fact that some aspirators can only aspirate 1 in every few swallows so the team were not able to give us full permission to start her on liquids but they are happy for us to continue with water. When we and Bee feel ready to move forward onto other liquids, juice for example, we'll have to go back for another video fluro and get a comprehensive positive result. But I'll worry about that in the future, for now my girl is drinking water and it's amazing.

Bee turned four years old in September 2012. Four. I still find it hard to believe that I have a four year old. She was spoilt for her birthday and got two lovely days out. The first we spent at Eureka, the national children's museum in Halifax. It's a wonderful place with absolutely tons to do and Bee had a blast even though much of it was beyond her. She's not ready for leaning about how science works and what our blood vessels do just yet but the 'mini town' section was well worth the entrance money! There's a bank, shop, post office, garage and a house. One of Bee's favourite games is pretend play so she had a ball playing 'shops' and posting letters. We would definitely go back there!

Eureka!

Our second day out took place on Bee's actual birthday, we went to Blackpool Sealife Center and then down the front to see Blackpool Lights. the Sealife didn't turn out to be the best choice, Bee was not impressed by the fish and spent most of the time wanting to leave. We got an equally indifferent reaction to the lights, I think by the time we started (when night fell) she was too tired to really be bothered. She did enjoy the flashing light stick we bought her off the front though! I think her favourite part of the day was the meal we went for between the Sealife and the lights. She got to eat chips (her favourite!) with ice cream and a share of daddy's chocolate brownie for dessert! Winner! 

 Over the last few months one of Bee's favourite things to do is bake with her daddy on his days off. She's getting very good at mixing and I've been treated to some very yummy fairy cakes, biscuits and cookies recently!





Our biggest change is that Bee will be starting school in September. School. I can't believe it. It's been a long and confusing process and we still haven't chosen our final school. There are 6 to choose from: 2 special needs schools and 4 mainstream schools with developmental units, which is the fancy way of saying special needs class. We started this process knowing that Bee wouldn't be in a mainstream class but we've kept our minds open as to the other possibilities. We've now had a handful of meetings with the Educational Psychologist and copies of reports from a few of Bee's therapists, we have a good idea of what will be going in her statement: that Bee has complex learning needs and significant developmental delay. She will need a lot of support in an educational environment and ongoing intervention from her therapists. But we know that Bee is a happy and very sociable child, she thrives on attention from others and benefits greatly from interaction with her peers. Her nursery have said she loves being in the 'garden (mainstream) room' and plays brilliantly with the children in there who are a little ahead of Bee developmentally and can model behaviour for her and help support her play.

Of the 6 schools we ruled out two immediately, one for being a faith school and we're not a family of faith, the other as we believe it provides for children with more significant physical and learning needs than Bee. That left us with 4 to choose from; one special needs school and three primaries with development units (or 'designated provision'). We've been encouraged by everyone to view, view, view the schools and find the one we're happiest with so that's what we've done.

We started with the special needs school, which has an outstanding Ofstead report and is located close to Bee's Nana & Grandad's house. The school is great and one of the biggest positives for us is that it caters for children aged 5-19, which means if Bee was to attend there she wouldn't have to move again until she was ready to end her education. This is a big plus for us as Bee really struggles with settling at new places and we're already very stressed about what September will bring. They use Makaton and the PECS system and the teacher/pupil ratio is great. I really couldn't pinpoint any fault with them at all.
But it just didn't feel right.

Over the following few weeks we visited the 3 primary schools with designated provision. one of our main concerns about this choice for Bee is that she would struggle to cope. We loved all three of the primary schools we visited but all the children seemed so much more advanced than Bee. Still, that was something that could be counted as a plus as well as a minus. Bee really benefits from watching and interacting with others, especially children who are ahead of her developmentally.

We came away from the viewings no closer to a decision and decided to go back and look at them all again, but take Bee with us this time. In part this was because we hoped seeing Bee in the environments would help us get that feeling about 'the right one' that everyone said we would get. In was also in part because we wanted staff at these schools (especially the mainstream primaries) to meet Bee and reassure us that they could support her needs and help her thrive. 

The special needs school was first and Bee spent some time with the reception class while we toured the playground/outside space with the headteacher. She had a blast and didn't want to leave but we were not keen on the classroom facilities and felt that the structure of the session we saw was a little too like a nursery. Of course we only saw a snapshot of the day but we came away unhappy.

Next was the primaries. Foz's favourite was first. It's hard to judge this school on it's facilities as it's in the process of being knocked down and rebuilt before September, so will have brand-new everything. Although I suppose that counts as a plus but it doesn't help us imagine Bee attending! We both really liked the teacher at this school, she talked very passionately about her pupils and her job. Plus instead of spending the entire time talking about the school (which others did) she asked us tons of questions about Bee and told us how she (and the school) could support her needs and make the setting suitable for her.
Bee spent about an hour with the class in this school. The minute we walked into the classroom she was gone. She did us a beautiful painting while we spoke to the teacher (which is currently adorning our fridge) and had a ball with all the toys.

The second primary we visited again had been my favourite on our first viewing, I liked the facilities and the staff and with all the schools being so similar in lots of ways it had come to down to minute things like whether or not we liked the teacher. On this visit Bee spent about an hour with the class, while we stood in the background and watched. She sat at the table with them and had some cake and water (they were having some kind of celebration - we timed that well!) and, although she didn't say anything and just watched she didn't look lost or left out. Many of the children went out of their way to try and include her, asking her questions and offering her cake or more water and she didn't seem she or withdrawn. She looked tiny in comparison but not out of place. After cake she followed the other children outside for a 10 minute playtime. She even, I saw it with my own eyes, played throw-and-catch with another little girl! It was a struggle not to cry!

After that second visit Foz and I decided that our final selection was between one of those two. We've decided on a primary with designated provision (rather than a special needs school) as we feel that Bee will really benefit from being among others who she can model behaviour and learning on. She thrives on interaction with others, especially children who can help support her play by leading. Basically, we want to give her the chance to cope in slightly tougher environment. Plus we have the reassurance of knowing she'll have 6-monthly progress reviews and if she's not coping as well as we hope she'll be able to move to the special needs school.

Now all we need to do is decide between our final two!

Glorious Gloop!

 

This afternoon Bee and I have been further broadening her sensory horizons and playing in gloop! We haven't tried gloop before but I saw it on the shelf at Toys'r'Us and thought "why not?" It's designed to put in the bath but I thought that may be just a little too much sensory overload for Bee and bring on a meltdown so we started small, although still with a bath...

To start with I gave Bee some of her plastic drumsticks and we did mixing, slowly building her confidence by allowing her to interact with the gloop without touching it. She got braver as the activity progressed, handling things that had gloop on them. She enjoyed digging out gloop with her spade and filling a little bucket, then pouring it all back in and laughing as it went splat back in the baby bath!

After leaving Bee to lead the play for a while I took the tools away from her and tried hiding her little Makka Pakka and Iggle Piggle in the mixture, hoping she would be brave enough to put her hand in to retrieve them. She tried, touching the surafce with her finger but couldn't quite work up the courage to place her whole hand in. She asked me for the tools back, wanting to dig out the toys but I re-focused her back on the bath and showed her how to poke at them with her fingers. It took repeated encouragement but she eventually uncovered enough to feel confident picking them out, Makka Pakka first then Iggle Piggle.

As the session wore on Bee became more confident in touching the gloop although still had some small moments when it touched the palms of her hands, which brought on some frantic hand-washing motions until she felt it had gone. Afterwards I took her upstairs for a bath to wash off all the gloop and we had just as much fun doing splashing and washing her doll!

 

Overall we had lots and lots of fun and the gloop went much more sucessfully than I'd anticipated. We explored texture and smell (mmm cotton candy!) and, in Bee's case, taste too! I'm going to continue with the gloop in a bowl for a few more sessions and then *maybe* try a shallow bath. We'll see how it goes.

 

 

Feeding Progress

We had a meeting with Bee's speech therapist and dietician this week, which I was really looking forward to as I feel like we're stalled with the feeding progress, or lack thereof. Bee will eat almost anything, from chocolate to raw carrot, the only thing she shies from is the more 'messy' food like rice pudding and yoghurt. We know this stems from her tactile defensiveness so don't push her too much with it. While we're thrilled with Bee's varied taste, our main concern is that she just picks at food and doesn't eat any substantial amount of it. This has created a little bit of a impasse with eating, in that we can get her to eat almost anything but not enough to sustain her, so we're still very dependant on the mic-key button. Of course the obvious answer is that Bee isn't hungry. She's fed 200mls of milk down her tube every 3 hours, that's a lot for such a little tummy, it's no wonder she only picks at the solid food we offer her. To be honest I'm not entirely sure Bee even knows what hunger feels like.

I relayed our concerns to Bee's therapists and they agreed it sounded like Bee wasn't hungry. The speech therapist said that what we needed to do was create hunger in Bee which sounded like a good idea to me! So she suggested a plan which I'm hoping is going to be the turning point for Bee's eating habits:

Currently Bee has five 200ml feeds a day between the time she gets up and the time she goes to bed. During that time I also offer her breakfast, dinner and tea with snacks inbetween. The new plan will involve a change of milk from her regular Nutrini to a high-energy version. This change will help accomodate a cut from five 200ml feeds a day to just three. Two of those will take place once she is asleep in bed, with the third being mid-morning. On the solid side of things we will continue to offer Bee regular meal and snack times.

So the new routine will be as follows:

• On waking Bee will be offered breakfast. She'll be allowed 30 minutes at the table with the food and then it'll be taken away.
• Mid-morning Bee will have a 200ml milk feed and be offered a snack which she is free to move around with.
• Dinnertime Bee will be offered a meal at the table and again given 30 minutes with it.
• Mid-afternoon will be time for snack, which Bee will be free to move around with.
• Tea will be at the table again for 30 minutes.
• After Bee is asleep at bedtime she will be given two 200ml feeds of milk.

Aside from the lesser quantity of milk, the new routine is more structured. I think this will help Bee start to understand food as a sustenence than a toy or a game, which I think she does at the minute. I'm really happy with this new plan, Bee's speech therapist is always brilliant and has never steered us wrong yet. I really hope this is going to be the start of weaning Bee off the mic-key button.

Building for Bee

This is the first summer that Bee will be mobile and although it's been a miserable May so far I'm hoping the warmer weather is not far off, I can't wait to play in the garden with her. She's still very wary of touching things outdoors, especially grass and soil. We don't have flowerbeds in our garden, just patio, decking and grass. I wanted to give Bee some space of her own in the garden where we could dig, plant flowers, grow some simple vegetables and work on her sensory issues. I'd thought about pulling up a small section of turf so she could have the soil underneath but it occurred to me that she's afraid of grass. No point giving her a patch to dig in if she has to sit on the grass to do it!

The answer was something that Bee could stand at rather than have to sit on the floor to use but store-bought planters are expensive and unnecessarily decorative for a toddler to dig in. So what was the answer?

Build one of course!

My building skills are rudimentary at best and I've certainly never used a circular saw! So it was with a little trepidation that I embarked on my first ever building project. Thankfully, although I built the entire planter myself, I had some expect guidance in the shape of a family member so I managed not to severe any limbs.

The planter is designed to be the right height for Bee to dig in without needing to stoop or stand on her tiptoes. It's large and square so she can dig all the way around. The made from old, reused wood which I'm planning on painting in black so she can chalk on it. Sadly the rain has reappeared so we've not been able to try it out yet.

Ta-da!

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

Bee's Dictionary Updated

**NEW**

Train                                Choo choo

Mr Tumble                        Be-bul

Word                                Sounds Like

Yes                                  Yeah

No                                    Naow

Ta                                    Gaa

Thank you                         Guy-or / Guy-oo

Car                                  Bum bum

Ball                                  A-bawl

Monkey                             Ooo ooo

All gone                            Uh gnnn

Baby                                Ba ba / Baby

Hello                                Hey-yo / Hiya

Bye bye                           A-bye / Be bye

Dog                                 Uff uff
Food                                Num nums
More                                Moh

Bubbles                            Bu-bull

Door                                Dior

Up                                   Up

Keys                                Daa

Bag                                 Ba

Play-Doh                          Bawl

Bed                                 Ba

Chair                               Ka

Book                               Booo

Outside                           A-hide

Boat                               Ba

Me                                 Me

Pram                              Bam

Knee                               Knee

Nappy                             Da-pee

Shoes                             Sues

Boots                              Booo

Gate                               Diit 

Bethany                          Bee

People                             Sounds Like

Mummy                            Mama

Daddy                              Da-de

Grandma                          Gam-ma / Gram

Great-Grandma                  Noo noo
Great-Grandad                  ChGee ChGee
Clare                                Ka

Gem                                ChGem


Makaton Signs
Yes
No
More
Book
Finished
Bubbles
Bed
Please
Thank you
Mr Tumble
**NEW** Nursery

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

New Words

Gate (as in baby) = diit

Bethany = Bee

Aspiration Difficulties

Back in June I blogged about our experience at Bee's repeat video fluroscopy (http://bit.ly/sh76iW) and the results we were given by the speech therapist: we could start with puree consistency and thicker, but no liquids. Bee still aspirates liquids.

So we stuck to it. Kind of.

Bee still will not tolerate puree. She won't let me feed it to her and won't feed herself with it. So instead of starting with that we moved straight on to what the SLT calls 'bite-and-dissolve' food: sponge cakes/fingers, Wotsits, wafers etc. That went much better than the puree so we moved on to food that's easy to swallow like biscuits, crisps, bread, potato, pastry, crumpets etc.

So far it's going very well. Bee loves to eat and will try all kinds of flavours, we've found very little she doesn't like. For a child who's never really eaten she's surprisingly unfussy.

We've hit a little snag with her technique though. Bee can bite down on food with a straight up and down motion (although she prefers not to and will tear off small pieces to put in her mouth) but she hasn't developed the 'round and round' jaw motion involved with chewing food. She never eats anything that could be called a substantial amount, usually a biscuit's worth or a 1/4 of a sandwich, which is probably down to two reasons: we don't think she really understands the idea that the food is sustenance, more sees it as a type of toy or thing to play with and she's never hungry. As she's tube-fed regularly (every 3 hours) I don't think Bee understands the feeling of hunger, or that food can alleviate it. But we can't stop tube-feeding her as that's where she gets her nourishment and daily intake of goodness. So how do we solve the problem? Bee seems to be stuck in a limbo of wanting to eat but not moving any further forward with her technique and understanding of food.

Our problem is complicated by the fact that Bee understands that other people drink and she doesn't. She is constantly asking 'mama ah', which in Bee-speak means drink. It's the sound we taught her to make to pretend she was enjoying her cuppa during 'tea parties'. The guilt eats away at me and I'm dying to let her have something to drink, though I know that her enthusiasm doesn't change her body's inability to deal with liquid.

Bee's Dictionary Updated

Bee has a handful of new words, our favourite being 'knee'. She likes to come over, point at your lap and say "mama knee". Who can resist!?

Our word total is now up to 38, a massive achievement! 

*NEW*

Knee                                Knee

Nappy                              Da-pee

Shoes                              Sues

Boots                               Booo

Word                                Sounds Like

Yes                                  Yeah

No                                    Naow

Ta                                    Gaa

Thank you                         Guy-or / Guy-oo

Car                                  Bum bum

Ball                                  A-bawl

Monkey                             Ooo ooo

All gone                            Uh gnnn

Baby                                Ba ba / Baby

Hello                                Hey-yo / Hiya

Bye bye                           A-bye / Be bye

Dog                                 Uff uff
Food                                Num nums
More                                Moh

Bubbles                            Bu-bull

Door                                Dior

Up                                   Up

Keys                                Daa

Bag                                 Ba

Play-Doh                          Bawl

Bed                                 Ba

Chair                               Ka

Book                               Booo

Outside                           A-hide

Boat                               Ba

Me                                 Me

Pram                              Bam

People                             Sounds Like

Mummy                            Mama

Daddy                              Da-de / de-de

Grandma                          Gam-ma / Gram

Great-Grandma                  Noo noo
Great-Grandad                  Dee Dee
Clare                               A-Ka
Gem                                Dem


Makaton Signs
Yes
No
More
Book
Finished
Bubbles
Bed
Please
Thank you
Mr Tumble 

Who've also had another wonderful language development: Bee has gone from saying 'baba' to 'baby'! We're so thrilled with that as it's a real progression for her. Well done Bee!