Wednesday, 7 December 2016

Slugs & Snails Tights & Sensory Processing Disorder

It's been a long while since I came on and posted! But I wanted to come and talk about something that could help other parents of children with Autism/Sensory Processing Disorder.

As you will know if you've followed our journey, my youngest son Bee was diagnosed with ASD is August and within that diagnosis he also struggles quite badly with sensory processing disorder.

How SPD can affect people can vary widely but for Bee it means he is quite hands on and likes being squeezed, touched and thrown around a lot. He loves giving tight cuddles and squeezing hands but dislikes light pressure or his hair being touched.

One thing we have discovered recently is he loves wearing his Slugs and Snails tights - I'm guessing it's because he feels like he is being hugged by them and they also leave no gap under clothes where socks usually would do they avoid rough edges (something that doesn't feel rough to us can to someone with SPD)

I would recommend anyone with a littlen with sensory issues similar to Bees to try Slugs & Snails tights to see if it would help them.

Slugs & Snails are made of organic cotton and are flexable, soft and durable! 

We love using ours, especially when we go out and about (Bee stays in his pushchair) they keep him feeling warm and safe.

You can view the wonderful range of fun and colourful designs HERE

Wednesday, 10 August 2016

Autism Spectrum Disorder - Diagnosis!

Today was a big day for all of us. The biggest of this year so far - bee had his final assessment (of 3 long weeks) at the child development centre.

It was a year ago we first raised concerns that developmentally he wasn't where he should have been and the ball started rolling - although we had an inkling from very young that things weren't quite right.

This year has been full of frustration, anger, confusion, doubt and a real struggle for us as a family. Not everyone saw what we did and a lot of the time we were dismissed with 'he's only young, he's just 2, he will grow out of it etc' which made my head full of self doubt and questioned if I was going crazy.

Today my beautiful little man was diagnosed with Autism spectrum disorder with high sensory processing issues (inclusive of the ASD). It wasn't a shock or anything, it was fully what we were expecting and after watching him through the assessment sessions we could see that the professionals were seeing what we were, so when they came out and said it it was a big relief. We had been listened to.

Bee has many struggles from sensory issues to fine and gross motor skills, he's clumsy, he struggles with communication and he's very on his own terms , he has zero danger awareness or stranger danger and I know we have a long journey ahead of us with 1-2-1 speech therapy, more physio assessments , OT workshop, setting his support up through nursery and the decision if we want to apply for the SEN nursery or not. But we are ready as a family to face this all.

Now that's all said, let me tell you about the positives of my incredible whirlwind boy!

He loves everyone.
He has an amazing memory.
He can work out how things work in seconds!
He has the most infectious smile.
Everyone who spends time with him, loves him!
He's a goober and can make you laugh.
He can be very gentle and loving.
He LOVES hugs and being squeezed!
He makes my heart melt every night as he falls asleep next to me.

There's so so much more I could write!

I'm so incredibly blessed to have him in my life and even though life has taken us the back roads with him, it's makes every little corner so much more meaningful.

I love you Bee!

Sunday, 24 July 2016

Primula Cheese! Summer Ideas!

We have always been Primula cheese fans in this household - I love how versatile it is for the kiddies and we regularly stir it into pasta or eat it on toast!

This summer we were given the challenge to come up with more ideas on how to make yummy recipies using a variety of delicious Primula flavours!

After really thinking about our favourite foods, and how we could make a plate of different snacks but still incorporating the cheesy goodness of Primula, we came up with the following!

First off we bought japanese style rice crackers (lightly salted) and used the Smoked Salmon Primula, on top of that we added some fresh smoked salmon and a sprinkle of spring onions. I was really impressed as they looked like something I could serve at a party and they tasted excellent too, I really enjoyed them.

We are all fans of crispy bacon so next we simply broke some rashers into small pieces and put a small blob of Original Primula on top of them for an extra punch of flavour - these went down really well!

My favourite creation of them all has to be my oozy Primula pastry balls!! So easy to make - I bought some pastry pre rolled and made a ball with a hole to squeeze the cheese in then baked with some grated cheese on top. These went down a treat for kids and adults alike!

All in all, we had a great time experimenting with flavours, there are so many things you can create with Primula, why don't you give it a try and see what YOU can come up with!

If you need some recipe inspiration then look no further! Just click HERE.

We were sent some Primula to come up with our yummy snacks!

Photos by Aaron Weight.

Tuesday, 19 July 2016

SquarePeg Clothing Review

We were recently sent some Tshirts from Squarepeg clothing to review - perfect for my little man going through autism assessments this month!

Squarepeg was started by Lauren, whose children were diagnosed with Autism.

It is a charitable organisation through which you can donate to fund sensory sessions for disabled children and adults. To find out more about the sensory bus click HERE.

They have a range of clothing and accessories with unique slogans on to celebrate the fact that everyone is a square peg!

We chose Tshirts as its lovely and sunny - the tshirt that most stuck out for me was:

'The wheels on the bus go in nice straight lines' - this couldn't be more perfect for Bee! He sings this all the time and one of his ASD quirks is lining up toys!! I find it fun and it celebrates him!

Luke has a tee that says 'the A team #AutismAware to support his little brother.

 The tshirts are good sizes and wash well - we will be back to get some hoodies as summer comes to an end!

If you'd like to visit Squarepeg and purchase some awesome unique clothes for your square peg click HERE.

This is a review, we were sent 2 tshirts.

Center Parcs Elveden Forest Day! - July 2016

A couple of weeks ago we went to Center Parcs with my parents and we had been so excited for months only to be stuck in the villa banned from swimming and activities as Luke came out in chicken pox! (Of all the blooming weekends it could have happened!)

Today we went back just for the day to allow Luke to experience all the things he missed and it was amazing!

We got there close to 10:30 and the first thing we did after parking up was head up to the Pancake House for a brunch meal. Upon arrival I told the waitress about bees additional needs and she happily sat us in a quiet corner away from others (mostly for their benefit! ;-) ) and of course he screeched and played up a bit (he sees balloons and has to have them) but he downed his shake and ate about quarter of his cheesy ranger pancake. Luke had a chocolate milkshake and a cheesy ranger too (ham and cheese).

We then left with happy full tummies and made our way to the Sports Plaza so I could ask about the kids club and if it was possible to let Bee into a session WITH me so he wasn't stuck in his buggy all day.. The baby sensory session was just about to start and one baby had been booked on but the staff were fabulous and asked the family that booked if they minded Bee coming in and they didn't mind , we just waited for about 10 minutes so the baby girl could have the quiet chill and song part of the session first.

Inside the room was set up beautifully, the sensory equipment was brilliant, from the fibre optics to the slow chilled disco lights. Bee was a little apprehensive at first as the room was darker but soon was playing with the balls, glitter tube, tractors and fibre optics - he didn't want to leave and we were sad that it had to end so quick but very thankful to have been allowed in!

After seeing how well he enjoyed himself , I booked him into the afternoon crèche session - this was a difficult decision for me but a gamble that paid off as he LOVED it! He settled immediately and I kept going back to ask how he was and they had fallen in love with him and he had them wrapped round his little finger, especially manager Nick!

We seriously couldn't praise all the staff any more for their care and consideration - the kids club is perfect for children with additional needs (it's best to call ahead and let them know you would like to come then they can assign a 1-2-1 if needed) we will definitely not hesitate to let Bee play there next year!

The big boys had gone off swimming to gets some GoPro footage and burn some energy off! Whilst mum, dad and I sat quietly for a bit and got drinks.

When Aaron and Luke came out of swimming we took Luke for an ice cream and then to the park - it was so hot outside!!

By 4pm we had done all we wanted to and we're all pretty shattered so started to make our way back to the car (guest services arranged mobility transport van for mum, dad and I as we couldn't walk that far back) and both kids fell asleep pretty immediately in the car!

So Thankyou Center Parcs for an awesome experience - I rate them exceptional for disability awareness and care and always look forward to going back!

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.