Dear Professional With Years Of Experience

Dear Professional With Years of Experience,

You have lost me with your first sentence.  The moment that you felt the need to start our conversation by listing off all of the brilliant things you have done within the years that you have worked with 'children like this' was also the moment that my heart sunk and I thought 'here we go again.' I get why you do it. Embarrassingly I have probably done it too. You are faced with parents that want answers verses budget cuts and deadlines.  Decisions are in your hands, the futre of 'children like this' depends on the decisions you make so you start by reinforcing who you are and what you've done.  I understated that it is your job to make the decisions that need to be made for 'children like this', I respect the years of dedication that have given you experience,  and I admire the enthusiasm and determination that have kept you in the role that requires you to make these decisions.  The problem is, even 'children like this' differ. I only have four years of experience with my child like this, but he has taught me far more about the things he struggles with than years of reading theories, carrying out independent studies and practical work with children just like him. This is why we need to work together.   This is why my opinion matters.

I hope that in years to come, when I'm back to your side of the desk, someone will remimd me of this. I hope that in years to come I will start my sentances by reassuring parents that I will try my hardest to find the best solution for their child using our joint knowledge and experiences.

Yours Faithfully,
A mother who wants the best for her child.

Swirly icing and beautiful bunting

I had it all planned out - the cupcakes would be topped with swirly icing and sprinkles of edible glitter and the room decorated with streamers and bunting,  all hand made of course.    Yes, before Billy was even born I was excitedly planning his birthday parties, but in reality they couldn't be any more different from the calm, pretty, handmade events I was busy imagining.  Billy's first birthday mainly involved us trying to convince him to stay downstairs with all of our guests whilst he continuously pointed at the stairs, desperate to be by himself.

Back in the summer Billy started asking for a party for his next birthday and all of a sudden birthday season is upon us again, Jo has just turned 2 and Billy will be 4 in a few weeks. For the past four months I've been trying to figure out how we're going to put on a party that is free from dairy, soya, wheat, egg, fish, fruit, vegetables and nuts, whilst taking into account Billy's sensory issues (children's parties and difficulties processing noise don't tend to mix!) and the fact that his poor immune system means he is usually poorly for most of autumn/winter. In my head I had all these ideals of how a party should be verses the reality of things that just won't be possible.

A huge sense of relief came when I read about someone buying their child a shop bought birthday cake because despite their best efforts homemade cakes just weren't working and weren't worth the stress they were causing on their child's birthday.  Reading this was like being given permission to stop setting the bar so high, to stop worrying about my ideal of how parties should be and just try and enjoy throwing a party that will be safe and fun for my boys and their friends.  With so many special requirments and things to consider there are some things that will take time and are bound to cause a little bit of stress/panic so I will compromise with something else - I can't just buy all the food from a shop, so because of this I will make all the decorations with the boys during the day and anything that can't be done then won't get done, they won't look perfect but we will have lots of fun making them.

We have decided on the following things to make the party less stressful and more enjoyable for us all:

• The party will be a joint party for the boys so if it gets 'too much' for Billy, it doesn't matter because Jo will still be there.
• We have hired our church hall so there is more space than if we were having it at home. 
• The main birthday cake will be a dummy cake made from polystyrene (the type they use for wedding fair displays).
• We will let Billy know the order of all of the activities and games and have a quiet area with ssensory equipment. 

I'm really looking forward to the party now and will blog about the details afterwards.  In the meantime I hope this gives other parents the 'permission' to relax that I needed. 

We have an unusual problem and Nom-Nom kids pouches might just be part of a solution.

This week I ordered a pack of three Nom-Nom Kids pouches, and they arrived today (super speedy!). There are two reasons why I ordered the pouches:

1. Like most toddlers there are some fruit and vegetables that our two year old son Jo will only eat in puree form from a pouch. Using reusable pouches (£6.95 for three plus the cost of ingredients) is obviously more economic than purchasing shop bought pouches (£1-£2 each) over time. 
2. I can give Jo fruit and vegetables without teasing Billy. We have an unusual problem in that as well as a long list of protein allergies, our nearly four year old son Billy is fructose intolerant. Whilst most parents are trying to convince their children to eat fruit and vegetables, we are trying to explain to ours why he can't. Out of the really long list of things that Billy can't eat, fructose has been the one he has got the most upset about. There is increasing hype over teaching healthy eating, encouraging children to eat fruit and vegetables and replace sugary flavourings with fructose, and this is fantastic but when your three years old's health issues rule out fruit and most vegetables this is all very confusing!  Until Billy can get his head around this a bit more, the best way for Jo to eat his 'snacky' or 'treat fruit and vege' is in a pouch.

I wasn't convinced that the pouches would be that easy to fill up, but a zip lock (freezer bag style) side provides plenty of space to spoon ingredients into the bag before easily zipping it back up again. The pouches have space to write the name of your child, the contents of the pouch, the date the pouch was filled and a tick box for preparation instructions, (along with a reminder to take the pouch home!).  The pouches are freezer and dishwasher safe which will make incorporating them into the busyness of every day life easy. Like shop bought pouches these can't be microwaved but can be warmed in hot water. Extra caps (I'm sure I'll need some of these before too long!) and a pen to write on the pouches are also available to purchase from the website.

Our pouches are filled up ready for tomorrow and I'm looking forward to using them and thinking of all the combinations of food I can fill them with. 

Craft with my boys - twig heart

Whenever Billy is having an 'off' day I always feel guilty that Jo didn't get out of the house much (if at all), so I'm always on the look out for things that we can do together. I saw a twig heart for sale online one evening and decided that it would be great fun to try and make one with the boys on one of our 'stuck in the house days'. Over the summer we started clearing our very overgrown garden so we have lots of twigs left where there were some trees, and I knew that I still had lots of different coloured garden wire left that belonged to my Grandad. I made the frame one evening, Jo and I then collected the twigs the next day and weaved them into the frame whilst Billy watched and told us where he thought each one should go.  Here is our step by step guide...

You will need

• Garden wire (available from Garden Centre's or even supermarkets during summer)
• Wire cutters
• Twigs
• String 
• Ribbon (Ribbons from packets or clothes loops are always handy to keep)
• Elastic band 

How to make it

1. Decide roughly how big you want the heart to be and cut your wire accordingly.

2. Using half of the length of the wire mould the it into a heart shape. Don't cut off the excess wire.

3. Using the rest of the wire make loops around the heart outline. (See step 3 photo.)

4. Collect twigs, wash them and leave them to dry.

5. Weave the twigs into the frame using and elastic band to hold them in place at the top.

6. Wrap the string around the heart hiding any wire and elastic band that is showing through.

7. Tie the ribbon to the top of the heart making a loop so that it can be hung up.

Step 2

Step 3

Steps 5 and 6

Step 7 

Back to pre-school...What's in the bag?

Billy is due to start pre-school again next week after 7 months off (his immune system couldn't cope with all the bugs that were going around at the start of the year) and I've had lots of time to search for things that will help his return go as smoothly as possible. Here are some of the items that I will be packing in his bag...

Ear protectors
Billy is really sensitive to sound and when he tried pre-school at the beginning of the year he got very anxious about how loud it was, especially the noise of the hand dryer that is in the toilets. I bought him some ear defenders from Amazon (Find them here.) and explained to him that I'll leave them in his bag so if it gets too noisy he can go and get them. Giving him this sense of control seems to have taken away some of the worries he's had about the noise when he goes back.


Allergy stickers
I got 'BEWARE I have allergies' stickers for trips or if the pre-school get any support staff in. I got these from Allergy Buddies (Find them here) who do a fantastic range of allergy alert clothing and accessories.  I was really impressed with how quickly these arrived, I thought I'd left it too late to order them before the start of pre-school but they arrived the day after my order was processed.


Pants
I bought some of the day time pants from the ERIC website (Find them here.) which are specifically designed for daytime accidents so that Billy wouldn't feel self conscious about wearing nappies. I was slightly concerned about the fit as the sizes go straight from 3-4 to 5-6, I chose age 5-6 and although they're slightly on the big side I'm glad I went with the bigger size.

Wipes and handgel
I'll provide pre-school with lots of wipes and handgel that is safe for Billy to use but they also know that his hands need washing regularly as it's obviously the best way to get rid of proteins and germs.


Snacks and drink
As Billy can't even eat fruit anymore I will put some homemade sweet and savoury biscuits in his bag and a flask of water.  (See earlier post for the sweet biscuit recipe).

Here's hoping everthing goes okay this time!

Easypeasy Biscuits!

Baking snacks that both boys can enjoy making and eating takes some thought due to the them being on different elimination diets. Billy is allergic to dairy,  soya, wheat, egg, oats, coconut and pea protein and is intolerant to fructose (which rules out all fruit and most vegetables),  and Jo is allergic to dairy, soya wheat and fish. When the boys are helping me bake it's obviously much easier and more enjoyable if the method is simple. As Billy is really sensitive to noise we mix everything by hand too.   I've come up with a really simple biscuit recipe which they can both help make and eat.

Ingredients:
Safe flour (we buy from the Dove's farm range which are available from most supermarkets)
Carbonated water
Table sugar

Method:
1. Put a chosen amount of flour into mixing bowl. (I usually put enough in so that the bowl is one third full).
2. Pour carbonated water into the flour mixing as you go. When the mixture becomes a sticky dough-like consistancy that is easy to form you have added enough water.
3. Add as little sugar as you can get away with!
4. Form into shapes with your hands or flatten with your fist and use shape cutters.
5. Bake in a pre-heated over at 180 degrees for around 10 minutes (until they start to go abit golden).  The biscuits will still be soft when you get them out but once left to cool they will harden.

Variations:
If your children are able to eat fruit you could flavour with puréed fruit instead of sugar but add this before the carbonated water as it will change the consistency of the mix.  You could also use flavoured carbonated water.

Craft for my boys - writing board

For a month or so Billy has been enjoyed trying to guess what letter of the alphabet things begin with (names of toys, objects around the house and friend's names etc), which has started a real interest in the alphabet and trying to write different letters.

During a big sort out one morning I came across an old notice board which I had in my room at uni, it's one that is half pin board, half white board and it was still covered in all my old scribbles and post-it notes. As I was wiping the white board clean I thought it would be great fun for billy to use and practice writing on, then I had the idea of putting the alphabet on the other side. I decided to turn it into a writing board and here's how I made it...

Materials
> Pin and whiteboard combi
> Alphabet Card Sticker Flipbook http://www.theworks.co.uk/p/sticker-books/alphabet-card-sticker-flipbook/5052089140790
> Paint
> Paint brush
> Decorative craft tape http://www.theworks.co.uk/p/card-making-supplies/patterned-craft-tape/5055170151507
> Scissors

Method
1. Paint the cork side of the notice board and leave to dry.
2. Stick on the alphabet letters
3. Make a border with decorative tape.

When all the eyes in the world are staring at you

There a lots of brilliant blogs and open letters about children with special needs having meltdowns in public and how the surrounding people in said public place have reacted to these mammoth meltdowns.  These posts have saved my sanity.  I don't excuse everything that my son does but each day I'm gaining more of an understanding into some of the things he does, and the more understanding I gain the more protective I get.  I love and take great comfort in reading the accounts of parents who are feeling the same.  The way that parents protect their children in these situations is a real insight into how it is when we venture out with children for who even popping to the shop down the road can be a traumatic experience.

My elder son Billy (3) has sensory and behavioural issues and ever since he was a newborn baby leaving the house with him in tow has never been easy, but coping with it is getting easier.  Like many other parents I often feel the need to explain his behaviour even to strangers in shops, which can then lead to questioning how you're supposed to cope with leaving the house. Here are my top tips...

1. Practice makes perfect. There are many places where I have ruled out going to with Billy - visiting certain shops, certain parks, and  even walking down certain streets just isn't worth the stress or risk of danger that a potential meltdown will bring.  There does however have to be a line. It would be far too easy to rule out going anywhere, but as well as being impractical it would be unfair - unfair on Billy, unfair on me and definitely unfair on his one year old brother.  Billy has very poor immunity, so if we find ourself on a 'well day' we have to seize the opportunity to leave the house. And even though it may be difficult, even if he draws attention our way and it seems like all the eyes in the world are staring at us, I remind myself now that as long as we all got home safely it was always worth it.  Practice makes perfect.

2. Be prepared and stay calm.  Any parent will recall how leaving the house was much simpler before they had children,  this is true for all parents but even more so when you had a child with additional needs.  As well as being practically prepared with all of the extra equipment, food, clothes and medicine that is needed when you leave the house, I've found it is also good to be mentally prepared.  There have been times when I've over done this and aiming to be prepared has turned into stressing out,  but when the balance is right, when I've given it some pre-thought but not too much, it has always been beneficial.  At the beginning of the week we took the children to a local country park which has a fantastic play park in it,  I considered some of the things that may be problematic and it definitely paid off -  Billy got stressed with some boys who were standing close to him behind a slide, and as I was running over to the slide he pushed one of the boys, causing his mum to fly off the handle and stand there yelling at Billy.  I had given this scenario a lot of thought on the previous day, so I was prepared with how to deal with it.  I was able to calmly speak to the mum explaining that shouting will cause Billy to go into sensory overload and will only make the situation worse.  The mum calmed down at once,  I was able to talk to Billy after which we apologised to both the boy and his mum and it all worked out okay.

3. Vent.  It can take a while to find a group of people who are in a similar situation to you, but it definitely helps having someone to talk and vent to.  For me it is my mum.  I now have some wonderful friends who have children with additional needs and will understand my musings of day to day life, but before these friendships formed it was my mum who used to share my puzzlement with the way that Billy was developing, laugh at the embarrassing scenarios we found ourselves in when out in public with him, and share in the frustration when the help he deserves hasn't been available.

4. Be proud. There will always be some days that have gone better than others, there will always be things we can improve on, that is life. I always find something to be proud of, even if it is just sitting with the boys in front of the TV or a book once we've eventually made it home after a disastrous trip out, after all we made it home.

Bubbles bubbles bubbles!

The fantastic charity Family Fund recently awarded Billy with a grant for some sensory equipment.  We were so excited as we read the letter telling us that the grant had been awarded, as we carefully chose the equipment that we thought would be the most useful, and then waited with anticipation for it all to arrive.  Both of the boys have thoroughly enjoyed exploring everything as we have unpacked it all, set it up and incorporated it into daily life, but the big hit is definitely the bubble tube.  When we ordered and then set up the bubble tube I had originally envisaged it being used in our family room for quiet times, however this week I have moved it up to the boys' bedroom and it has proved to be invaluable during 'settling down time'.

After umming and ahhing over where to put the bubble tube (I had visions of walking into their room to find the fish and balls all over the floor with everything soaking wet and Jo trying to drink the water), I finally found a safe corner to wedge the base into so it can't be knocked over. The tube we have is 105cm tall and comes with plastic fish and balls to place inside. When the tube is switched on it makes quite a loud humming noise which I thought would drive Billy mad but actually seems to add to the calm atmosphere that the lamp creates.  Many of the bubble tubes that we have seen in sensory rooms seem to go through colour sequences rather quickly,  and this one is quite slow in comparison making it perfect for use in the evenings.  As well as obviously having the bubbles to watch, there are little plastic balls of various sizes and colours, and plastic fish with tails that move as if they are swimming.  It's mesmerising.

One of the main things I like about the boys sharing a bedroom is that we get them ready for bed together,  and even if the day has been full of meltdowns and squabbles they (most of the time!) end the day together and now, thanks to the bubble tube, very calmly.

http://www.learningspaceuk.co.uk/additional-special-needs-c1/visual-impairment-c86/bubble-tube-105cm-new-model-special-comes-with-fish-and-balls-p3682

Just a stay at home mum?

When I gave up work two years ago (I just had to re-count, it really doesn't seem that long ago), I would often find myself answering the "What are you going to do next?" questions with "I'm just going to be a stay at home mum".  Fast forward to now and my list of 'roles' seems five times as long and fifty times more fun than I could have imagined.

I am Mum to Billy who is my nearly four year old train enthusiast, and Jo my mischievous nearly two year old sleep striker.  I am also a carer for Billy who has a super long list of allergies and intolerances, very poor immunity and sensory and behavioural issues.  I never ever imagined that when I became a stay at home mum I would be taking up that role so literally - life with my little germ magnet can for many weeks mean just that, we stay at home and I am learning to love it.

At around the same time that we began to realise that Billy's poor immunity wasn't just another phase my husband and I had bought our first home - a 1930s semi complete with rotten floors, woodworm, asbestos,  rat and damp damage, no heating, very poor water flow and basic electrics.  We have worked hard to make this house our home, and after countless 'what on earth have we done?!' moments it is gradually becoming an enjoyable and cosey place to be confined to.