Friday, 24 June 2016

Holiday & Pain Update

I finally got to go see my pain consultant again yesterday after a mix up - my last appointment was 7 months ago so this was well overneeded!

My pain has been through the roof! mostly my fibro pain but i've also injured my lower back and am struggling even walking through the pain.

My doctor has given me Lidocaine patches and is sending me for an MRI on my lower back then we will talk about if I want steriod injections into my back or not (sounds scary to me!)

This weekend is our holiday, i'm so excited to take the boys and to spend the weekend together with my parents too - I even have the spa booked for me and my mum for tomorrow night!!

Tactics are in place to help minimise Bee's distress, we have plans how to get him into swimming etc and we are taking the baby gates for the bedroom.

I'l be using a mobility scooter so I don't have to panic about pain and I'm hoping being in the water will give my back some relief - sad I won't be doing the water ride though!

So yes, thats whats happening and where we shall be, i'l be back next week to tell you how it went!

Have a great weekend!

Thursday, 16 June 2016

Nursery Update - June 2016

Today I went and had a meeting at bees nursery to start his IEP. 

After all the worry surrounding nursery he seems to be settling in really well which makes me feel so much happier! He has the occasional wobble when I leave him but I've never been called back because of upset.

One thing that concerns me is that they haven't experienced all of his unpredictable behaviours (which in some ways is good - no one likes being bitten!) but it's a bit like a time bomb sitting there and every week I'm waiting for her to tell me that he's hurt someone! 

It took a good 5 weeks before our Homestart lady saw his behaviours but now it's frequent , maybe he's like that more when he feels safe or familiar.. Is that a thing?

At the moment he is only doing one morning a week but come September he shall be doing 3 days there. He needs it, I need it. He needs to learn to be away from me but that I will return for him because right now he's a bit too much of a cling on, sometimes I can't even stand up without him getting upset.

His speech is coming on loads in the past couple of weeks but he's still unable to talk back to you properly - he is trying to ask for things now though and asks 'where daddy gone?' Whilst he is at work.

We continue to use the visual prompt cards (which is part of the IEP) and they seem to be working well, he is most definitely a visual child!

So all in all I feel happy at the setting he is in and the steps they are taking to make him feel comfortable - now it's just the waiting for the MDA and the genetic blood test results!

Sunday, 12 June 2016

The Grey Area.

The grey area.

The time between when your health visitor fills out the red flags questionnaire and tells you your child has communication difficulties and the journey starts to when you finally get a diagnosis.

That's where we are stuck!

Although it's not long until our assessment now, we have been struggling along since around September last year. We knew something was wrong very early on and the health visitors knew too but between the paediatricians and the psychologists and the physio and the health visitors we don't seem to get the real help that we so desperately need.

Bee is a funny, lovable , very clever little boy with the ability to talk (the last few months) but can't answer you back other than 'yes' or learnt speech - he also has the most epic violent meltdowns involving teeth which is not easy.

We have been told once he has a diagnosis we can go on courses or get help from the charities but now.. The grey area.. There is nothing. Things have not been properly explained and the wait for the assessment feels like a million years at the moment.

I wish that back at the time we were told he wasn't developmentally where he should have been that the HV gave us a pack of information of who can help, where to go for advice or support etc because we were just left to find out most things for ourselves and it was a very confusing and lonely time. 

Now he is getting older things are definitely getting harder - amongst the communication issues is a stubborn Scorpio little 2 year old! I do fear for my sanity!

I'm just sad that more could be done to support families during this time so people like me wouldn't feel so alone.

Perception & Maclaren Major Elite

Things have been getting harder physically for a while and the biggest cause of meltdowns right now are sensory overload (when we are leaving places and going to the car) Bee doesn't realise he is leaving until he sees the car , that's when we struggle with the violent meltdowns.

Our buggy we were using was the beautiful but bulky Stokke Xplory, which we thoroughly loved and had used for the past 6 years ever since Luke was born! But because of Bee's size, the meltdowns and my own hypermobility syndrome I was really struggling and we were both ending up in tears exhausted.

I'd heard of the Maclaren major elite special needs pushchair, the children's development center specialist health visitor had mentioned it and I loved the fact it was an umbrella fold buggy (Bee no longer fits in regular pushchairs that are umbrella fold!)

The only thing hovering above me was the fact it was a special needs buggy (it's not that I can't admit that my little man has issues or needs it for his own safety) I was worried about presenting it to the world and being stared at - I'm happy to say that wasn't the experience though, we test drove it to tesco and it was amazing. Bee liked it, was comfortable, felt safe - we had less anxiety from him and no meltdowns that trip! No one stared or even batted an eyelid and I'm so happy that we decided to get one as it will give us more freedom to get out and know he is safe.

My attitude is slowly changing now, things are how they are and we need to make the best of the good things. This buggy is one of them!

It's now been a couple of months using the buggy but has given us more freedom and less stress - he still has meltdowns outside but it has helped my HMS no end. The only downside is the length and the fact it doesnt fit in my boot! We have to have it along the floor of the back seats which isn't ideal!

Wednesday, 8 June 2016

To blog or not to blog?!

Ahhh where do I even begin?

To be honest I didn't think I would openly blog my feelings for a few reasons but one was worrying about people I know read it but to be honest if they are going to take pleasure over the difficulties we are going through then they really aren't worth worrying about.

2016 has been one of the hardest years for us to date, my dad discovered he had Cancer and needed a major op last month (which was successful but we are still waiting for the all clear) and Bee is currently awaiting a Multidisciplinary Assessment with suspected Autism Spectrum Disorder so it has certainly not been smooth sailing.

Everything I knew about parenting has changed and we are learning to adapt to help Bee in the best way possible for him - but that is another post!

So for now I'll leave this here and I'll be back to explain some more of whats going on soon.