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Little rays of light

This morning Soldier lit up my world. Such small things to most families but such major communication for Soldier.

We have been away for a few days and since coming home Soldier had been getting up early.. so I have been telling him if it is still dark when you wake up go back to sleep…

So this morning he gets up and when I go through and tell him ‘it’s not morning yet’, he smiles at me, pulls his blind back and points to a crack in his shutters where sure enough it is brighter than his bedroom and he smiles….. I can’t help brimming with pride, super communication and yes, he was right ☀️

He is an iPad addict so the first thing he wants a in the morning is his iPad but he doesn’t get it until later in the day or as all of you with autistic kids know, he’d be lost to the world of his iPad and him….

We store the iPad on top of the wardrobe in our bedroom so it is out of reach. He has in the last few weeks worked out how to stand on the dining chairs. He knows no iPad in the morning so after getting dressed he comes into bed for a wee snuggle, we are still on holiday so no rush.. I head in for a shower and he pushes a dining chair through the house into our bedroom to the wardrobe, stands on the chair to reach the the iPad, and helps himself… sneaky! But great problem solving 😍 He may not be able to speak but boy can he communicate, love your Soldier 💕

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not such a happy birthday..

Here we are heading back from what should have been a bit of family fun to celebrate soldier’s 9th birthday but in true ASN family style it never worked out that way….

we should have left home yesterday morning all excited for our night away at our favourite hotel  instead Soldier was in serious pain his body trying to kick start clearing chronic constipation 

We should have been in the car heading North to our destination instead we were running a deep bath at home to help soldier deal with the terrible cramps he was experiencing and calming angel who can’t cope when her brother is upset

We should have been checking in to our hotel ready to go for a swim in the beautiful pool instead we were comforting our son as his body started a poo explosion 

We should have been relaxed, happy and getting ready for dinner where we had arranged a birthday cake for Soldier to make a fuss of him instead we were in the car unsure whether it was a good idea to still go away, hoping Soldier’s situation would clear and let him enjoy his actual birthday today, giving Soldier lots of cuddles 

We should have been eating a lovely meal together as a family instead we were checking in our room and running baths for Soldier to help with his situation 

We should have been having a nightcap reminding Soldier we have one more sleep before his birthday instead we are having room service deadly quietly as Soldier is so shattered he has fallen asleep on the bed 

We should have had a fab night’s sleep in big comfy beds instead we were up and down showering Soldier as his body did what it needed to do to clear what it had been storing, so sad for our boy and hoping it would stop and give him peace soon

We should have been having a slap up Birthday breakfast making a fuss of our boy instead he was totally shattered and needed some rest, his cramps slowing down leaving him wiped out

We should have been down in the outdoor spa that he loves so much singing happy birthday to our boy instead we decided to head home as he was still suffering and clearing…

So I write this my boy is beside me in the back of the car upset leaving one of his favourite places in between being upset from cramps… and it is his 9th birthday. It makes me so sad that with his genetic disorder comes chronic constipation.. we have tried many medications under gastro consultants and yet every now and then this awful, distressing situation still happens that I can only liken to watching him go through birthing type painful cramps 😞

So this year we will be delaying Soldier’s Birthday and making a big fuss of our brave boy on Saturday, love you Soldier, life is shit (pardon the pun) and you don’t deserve this……

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Sometimes it just hits home so hard!

Today has been a toughy! We said goodbye to our gorgeous little pup Cookie. It really brought home to me the impact that our kids limitations has on their and our lives. I don’t mind admitting it has been a day of tears.

Yes, she is only a dog BUT she was a little addition to our family that we thought we could have. She was a bundle of fun, love, companionship that was going to bring a new dimension to all our lives. Angel wanted to feed her and look after her and Soldier wanted to stroke her and play chase.

Sadly Soldier has asthma as well as his NALCN breathing difficulty and whilst our first week was great the last few nights have been awful for Soldier. Culminating in him being unable to breath last night by about 2am and him and I going and lying out in the car where the dog hadn’t been, he was still a mess. So Cookie has gone to a new (and very lovely) home. If I am honest I feel robbed, robbed of that little bit of happiness.

It brought home how much we have been robbed of…

Robbed of 2 healthy children….

Robbed of being able to do many everyday things never mind our dreams of great achievements for our kids.

Robbed  of more children healthy children ourself as we have such a high chance of another child having the same genetic issues – NALCN and TRAPPC9.

Robbed of the chance of grandchildren given our kids situation or unless someone takes advantage of Angel which is a very real fear.

A pet surely isn’t too much to ask….  alas it seems it is….

Life can be cruel, how is it decided who will be robbed of what really matters in life??  Continue reading

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It was only a night in a hotel room but a little miracle to us…

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So what’s the big deal? Lots of families check into a hotel for the night and all stay in the same room….

Well for our gorgeous little family that just hasn’t been a possibility

  • both Angel and soldier wake to a crisp bag opening so doors, bathrooms etc that you hear in a hotel is like an alarm clock to them – ping! Wide awake 😟
  • Angel takes hours to settle at night and there is no guarantee she will stay asleep
  • there are nights Angel is a hurricane and up most of the night..
  • we’ve always needed our own kitchen as Soldier finds busy restaurants too hard and gets really upset and tries to leave
  • I could go on…so we always stay in apartments or resorts with apartments

We are just back from having been asked along to a very special celebration and we though it’s 1 night, let’s be brave and stay in the hotel of the party.  Half of me thought it was a stupid idea we would regret, the other half wanted to give it a try coz you just never know do you, and it’s only one night if it’s a disaster!

So often your kids surprise you, what a great adventure all sleeping together. So we bunked up, 2 double beds, Soldier and daddy in one, Mummy and Angel in the other. Late to bed after a hectic evening and within half an hour we were all asleep, a few ‘what’s that noise?’ From Angel and even though they both woke during the night they were happy to go back to sleep 😄

Angel told us she wanted to stay in the hotel not come home and Soldier cried when he had to go to sleep himself tonight 😴 Our little adventure paid off… I doubt we could ever do more than one or two nights but it’s great to know we can at least do that now after nearly 9 years.

Lesson to me, keep on trying, it will come good!

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It’s been a year….

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Since I last blogged….

I’ve taken to the iPad again tonight as it has been a week of real highs and lows. When you walk the path we walk alongside Angel and Soldier it’s anything but ‘the norm’ and you see the absolute best and worst in people and situations.

This week we have experienced really wonderful kindness and giving for kids like Angel and Soldier when our local taxi drivers took 100 kids including Angel and Soldier to the seaside. These cabbies give up their day (and many the day before to decorate their taxis) as do police outriders to escort the parade to the seaside. The councils close the street route and the public take to the streets to be soaked by water guns and water bombs as the kids have a day money can’t buy. Parents and carers can relax and be amongst families just like us, no one turns a hair at meltdowns, nappies on older kids, behavioural traits, you name it… It is normal to us… And the cabbies treat your kids like the special little angels they are… It’s exhausting as they pack so much into one day but truly magical.

This week has also broken my heart watching a fellow SWAN family facing into an impossible decision for their brave boy. This SWAN mummy is absolutely amazing, she writes beautifully in her blog. https://areyoukiddingney.wordpress.com/2016/06/18/quiet-storms/.
She is fun to be around, stunningly elegant, has a successful career, most of all she is filled with love for her gorgeous family.

We have talked a few times of how her son and Soldier look really alike and have similar mannerisms. We’ve watched each other’s boys grow up in our SWAN network. I can’t begin to imagine how surreal and emotional her current journey is…. I think how I would feel if it was Soldier but it’s just not possible to imagine…

Life is precious, enjoy every moment you have with those you love and give yourself a kick up the backside when you are stressing or arguing about nonsense… Save your energy for when life throws the really big challenges at you 😪

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When it hits you like a train…..

So you’re on the railway, it’s been a tough journey and you’ve finally got there then you see the lights coming towards you at the rate of naughts and ‘bang’ you’re hit….. Reality has just slapped you across the face….

Your child (Angel), that you have sought mainstream interaction for has just reinforced her difference! She doesn’t want to go to Rainbows for about the 4th week running. She doesn’t want to see her ‘friends’. She’s too tired. She doesn’t want to have fun….

Yes, I thought it would be great for her to have mainstream engagement with little girls (as it’s mainly boys in her class). All started well then she began to struggle and her behaviour became more hyper.. Now she’s refusing to go.

It defeats my purpose to push her to go after all it’s for her. Such a shame as she started off so well.

When your child has medical issues sleeping at night, when she’s up at 3am frozen as she can’t control her body temperature so she’s shattered in the morning, when she’s anxious as she’s not as able as other kids and she takes more time to process information and instruction, when she feels safe around her direct carers and adults because they are predictable imageI suppose I can understand….

I so wanted her to go along and make a little friend or 2 her age but seems that was a bit of a pipe dream.

I wish we were merrily travelling along the same train line as everyone else but instead we are stuck on the sidings watching the happy passengers whizz by accepting we will never be on that journey……

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Heartbreaking loneliness no more – for the kindness of a friend…

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Was not so long ago I posted about how heartbreaking it is for Angel who would love friends to be in an environment where that wasn’t possible.

A friend I made since coming across to Edinburgh messaged me on the back of that post and offered a play date with her daughter who is the same age as Angel, in mainstream with high performing autism. Oh yes please! But of course it’s down to the girls if they want to spend time together.

What a success (and thank you to the wonderful mummy for making it happen!).

The girls started with music dates at our house and progressed to girly play dates with nail polish and make up and yesterday baked together at Angel’s new friend’s house. It’s beautiful, they are so undemanding of each other. If one wants time out the other just carries on, it’s so normal in their world. The smiles on their faces say it all 🙂

I can’t tell you how happy this makes me. My Angel enjoying time with a little friend, the friendship that she has sought for so long.

I know this makes me sound like a dating matchmaker but I’m constantly on the look out for other little friendships for Angel. She’s pretty unique, more verbal than most of the kids in her school, very few girls in school as well, but way less able than mainstream kids. Finding her play date matches is not so easy. Long may this lovely little friendship last! Xx