Supporting the sibling of a special needs child

When you have a child with special needs, they can quite quickly and easily become the focus of your attention.

They need extra support to keep up with daily life, they need extra understanding because sometimes they’re not able to keep up with daily life and they need extra energy because sometimes life can be tough and challenging.

As a parent you dig deep and find that extra support, understanding and energy. You invest everything you can because you want them to be the best that they can be.

While all this is going on, there is your other child, the one without the special needs, without the need for extra support, understanding and energy…but actually that’s not true, they really do need that additional support too!

I’ve realised recently that maybe Mops needs that bit of extra support – after all he’s contending with a lot more than his peers. Maybe he needs a bit more time. Maybe he needs a bit of additional understanding. I’ve always done my best to give him the time that he needs but as he’s got older his needs have changed and I need to change my approach.  

I don’t have the answers, I don’t think I ever will but we’ll work through it, meanwhile, Mops, know that I think you are beyond amazing! You make me smile every day and are the best little brother EVER.

Love you to the moon and back and back again x

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Receiving a high functioning autism diagnosis

I walked into the doctor’s surgery feeling a bit nervous. I didn’t know what to expect, I just knew we would be there for two hours and that they were going to do two types of assessment. I didn’t know what the assessments would involve, I hadn’t prepared myself for the emotional impact either – It’s hard to discuss your son’s behaviours in so much detail with a stranger.

Bam was taken to a different room to be assessed by a speech therapist and a psychologist. I hadn’t prepared myself for him to be on his own…I wanted to be there to support him. It was a very long hour sat in the waiting room, wondering if he was ok, wondering what he was thinking. The second hour, the three of us sat and spoke to the doctor. We discussed Bam’s behaviour in detail.

Then towards the end of the hour, literally five minutes from the end of our appointment, Bam was diagnosed with high functioning autism.  It wasn’t a total surprise so why did I feel so shocked when the doctor announced he was in no doubt that Bam was autistic. Maybe it was hearing it out loud, maybe it was because it was now confirmed, maybe it was because he was so confident in his diagnosis.

We left the doctor’s surgery and I felt numb…my brain was busy processing this new piece of information. What did it mean, how would it help? Would it help at all? How would we explain it to Bam and Mops. Had we done the right thing seeking the diagnosis?

At that point in time, when the doctor tells you your child has autism, you just feel totally overwhelmed. There’s so many questions, so many things you want to know but the doctor hasn’t got the time to answer the questions. Also, I didn’t want to ask lots of questions in front of Bam because I wanted to tell him in a way that he would understand, in an environment that he felt comfortable in.

So you walk out the doctors surgery feeling numb….feeling overwhelmed….feeling emotional….

Act of kindness at the top of a lighthouse

Living with a child with ADHD inevitably brings the odd challenge along the way…When those challenges arise the behaviour and reactions of those around you can make a difficult situation better or worse

Yesterday I was lucky to be in the company of a very lovely Nan! Here’s what happened.

We were in Plymouth visiting the beautiful lighthouse. The boys wanted to climb to the top – so did I! Hubby decided to stay at the bottom while we trekked up the 93 steps.

I spoke to Bam about how it was important he was sensible and listened while we climbed the tower. ‘Yes Mum, I promise, I’ll listen’

So we started our journey up the lighthouse. Side note – it’s really beautiful and very interesting. The beds they used to sleep in were really tiny and Mops was very intrigued about how they managed to get the beds up the tower! Sorry no photo as I was too busy chasing Bam up the tower!

We reached the top of the tower – the lantern. It was enclosed with windows. Bam was very excited and he started climbing. So I asked him to stop quite a few times but he just wasn’t able to take my instructions on board. So I felt that it wasn’t safe for him to go onto the outdoor viewing gallery. I was worried about him climbing.

I explained to Bam that I didn’t feel comfortable with him going outside. This of course caused a meltdown with tears and attempted escapes to the outdoor viewing gallery. It was frightening! At this point Mops had wandered out on to the outdoor viewing terrace.

I was then blessed with a random act of kindness from a lovely family – a Nan and Grandad with their grandson.

The Nan went to get Mops from the outdoor viewing terrace which left me able to deal with Bam knowing Mops was safe.

I managed to get Bam back down the stairs…it wasn’t pretty. Most of the stairs were ladders, I had a skirt on and protecting my dignity wasn’t top of mind! My bag then fell open and my mobile phone fell to the floor. The lovely grandad of the fore mentioned family picked up my phone – no cracked screen!

We made it down, all 3 of us safe and sound. I explained to the Nan that Bam has ADHD and thanked her for her help. She said ‘well you handled that really well and remained calm in a scary situation’ then she grabbed my arms in a friendly, well done type of way!

Her kindness brought a tear to my eye. I can’t tell you how much difference it makes to have kind and helpful people around you. I actually came away from the situation feeling positive rather than sad and judged!

Thank you lovely family…I saw this quote this morning ‘A simple act of kindness can make a tremendous impact on somebody’s day’

BAM’S LOVELY LIFE !!! ;)

I’m very proud and honoured to have a very special guest blogger write for me – My son, Bam. You inspire me every single day.  Bam, over to you….

I have ADHD and epilepsy so I don’t always do that well in school, but fortunately for me I have two lovely teachers and one lovely LSA. Even if I have Epilepsy and ADHD I still carry on in school and persevere thanks to everyone in my school and also my lovely Mum.

I got bullied once in school but I don’t know why it might be because of my Epilepsy or maybe because of my ADHD. I have a friend who also has ADHD and he knows he gets bullied for it I wish I could stop it but I can’t because they might be nasty to me as well and I don’t want to be bullied again of course. I banged my head once and I was dizzy for the whole entire day.

My life has been made much better by my Mum, who has now set up a charity called Braain which is made for children with ADHD AND Autism which is very kind of her ;). I have lots of friends and I play with them every day so I think I am pretty lucky.

 Special thanks to my mum who inspired me to do this wonderful blog

And my Mum’s friends Helen and Emma

 

Bam is 10!

Warning to pregnant Mummas – contains detail of a difficult birth

Wow, how does a decade go so fast….Bam is 10 today and I’m looking back wondering how we arrived at today so quickly!

This morning he said to me ‘ Mum, you can have a glass of wine tonight. I’m impressed you have kept me alive for 10 years!’

Cheers matey, don’t mind if I do!

Bam made a dramatic entrance into the world. I had contractions on and off for 5 days before the birth. He wasn’t in the right position for birth, his back was against my back. This was making the whole process very painful. Not that I had anything to compare it to but let’s just say it was beyond my pain threshold!

I had the drip thingy to try and speed up the labour but nothing really happened, just a lot more pain but no dilation. This went on for hours and hours, I was absolutely shattered!

Bam was getting distressed and his heart rate was dropping every time I had a contraction. Before I knew it the alarms were going off and I had what felt like hundreds of doctors standing around the bed!

Following some tests I was told that there was a lack of oxygen getting to his brain. The doctors advised me that they needed to get him out via C-section within 8 minutes.

It was horrible, really frightening. I lost a lot of blood and was feeling quite unwell. I wondered if we would both be ok.

We were, but I was always worried that Bam would have some form of brain damage due to the lack of oxygen reaching his brain. It was always there nagging at me.

Bam met all of his milestones and happily went off to school. I actually remember thinking, he’s going to be ok, he’s at school and he’s learning so everything must be ok.

In the first Christmas holidays of Bam’s school life, he began having seizures. This was the start of his diagnosis of cortical dysplasia (brain damage -in his case very mild but enough to cause him a few challenges along the way)

10 years later, we are still learning how the cortical dysplasia affects Bam and probably will for a good few years yet…

The last 10 years have been amazing, I wouldn’t change one thing about my boy, because he’s perfect in every way!

Happy 10th birthday Bam Bam! xxx

 

You didn’t glance back?

Dearest Bam,

I know you didn’t glance back today after I kissed you goodbye. Why would you? You were full to the brim with excitement for your residential trip with the school. Chatting to your mates about Pokémon cards and which activities you were going to do. I heard you say ‘I’m going to do everything!’

I also heard you tell everybody that you had only had an hour’s sleep last night. Yes, that’s true, every hour waking me up to tell me the time and how many hours there were left until you head off on your adventure. I tried to calm you down but nothing worked. By 4.30am, I gave up and suggested you watched TV. Self preservation for sleep was beginning to kick in!

This morning you literally bounced around the house, causing great excitement in your brother too. I was silently wishing the time away, I was tired and a little sad that you were heading off on your own.

However, your enthusiasm for life makes me smile. I know you will put everything you have into enjoying your time outside climbing, swimming etc and return home absolutely exhausted at the end of the week.

I’m pleased that you go without a care in the world. I’m pleased I have done all the worrying for you. I’ve met with the teacher about your special needs – we discussed your medication and your specific requirements. I’ve googled how far away the hospital is just in case you have a seizure. I’ve worried about the fact you’ll be kayaking in the sea and I’ve worried that you won’t eat at lunchtime because of your ADHD medication. (The lovely teacher is taking some breakfast biscuits for you to munch on should you get peckish)

Off you go precious boy, have a blast! I’ll never stop worrying about you although I am looking forward to some sleep tonight. Oh and thanks for the letting me give you a kiss goodbye, even though ‘that’s embarrassing!’

I’ll miss you…

Love Mum xxxx

 

 

Family on tour

It’s the Easter holidays, time for a mini break with the darling children.

The sun is shining, we pack up the car and head down to the lovely county of Devon. Kids have electronic devices to entertain them on our journey. All goes pretty smoothly, apart from the frequent occurrence of bottom odour from one of the males in the car – nobody ever admits it though! Cue my constant lowering of the window to prevent suffocation.

Mum had been ultra organised and was feeling a little smug as we pulled into the local Tesco store to collect our shopping requirements for the week….no trawling round the shops with grumpy boys for me. I didn’t stay smug for long when the guy giving us our shopping pulled out the most gigantic pizza you have ever seen – boys began chuckling, I was wondering whether a small lodge oven would cope with oversized pizza.

First day we head to the beach, the sun is still shining, yes two days in a row in the UK! When the sun shines in the UK it seems rude not to indulge in an ice cream! When asked which flavour the boys would like Mops very matter of fact says ‘salted caramel please’ Salted caramel….!! How does he even know about such flavours! Unfortunately, salted caramel wasn’t on the menu so he had to settle for bubble-gum and mint choc chip – yes, together!

We were lucky enough to have a hot tub at our lodge….lovely relaxing, bubbly hot tub, over looking the lake – could it get any more relaxing? According to hubby, the answer is most definitely ‘yes’. In fact he commented that it was like sharing a bath with three idiots! Hmmm, not quite so relaxing with the kids in tow.

Next day trip, Dartmoor forest. A lovely spot for a picnic, the sun is STILL shining and we head for an afternoon of exploration. There are two different routes around the falls and the forest, both advertised as taking about 40 minutes. Of course, this doesn’t take into account Bam’s ability to effortlessly climb up hills without even so much as a glance back. I will never tire of watching him – sadly I do tire from trying to keep up with him. Anyway, with Bam on board we complete both trails in about 40mins. Oh and this was whilst they completed an Easter quiz which resulted in Bam receiving a prize of 20 Easter eggs!! Yay, as if we didn’t have enough chocolate form the very generous Easter bunny!

Final day was spent at an adventure park. Loads for the kids (including the hubby!) from a toboggan run, dinosaur trail and the biggest soft play I have ever seen. Even a beautiful bluebell wood – boys weren’t impressed with me pouring over how beautiful the bluebells were.

Time for the family on tour to return home ….exhausted (well, all of us apart from Bam!) and full of lovely happy memories! Back to school for a rest…