Being a sibling to an ASD child

Being a sibling can be tough. All the sharing and compromising! (Although being an only child myself I would argue that growing up on your own can be tough at times too!) I can only imagine what it is like for Jasmine to be the sibling to an older sister who has severe learning difficulties, Autism and challenging behaviour. I think she does a damn good job!

Being the sibling of a child with these challenges takes compromise to whole different level. We regularly say “sorry we can’t do that/go there … we’ve got Holly. ” luckily we have some very supportive friends and relatives who will help us out and take Jasmine places or fetch her whilst we are often outside waiting in the car. Friends who let Jasmine sleepover or include her in their activities.

We do our best to make sure Jasmine has various activities and hobbies to go to. But it is other little things that suffer like being able to sit down and talk through problems, checking how her day has been. Often when we are at home we are following Holly around the house making sure she’s not destroying something, hurting someone or self-harming. Jasmine rarely gets our full attention.

When the girls were younger Holly used to pinch, scratch and pull Jasmine and she just put up with it. Until of course she learnt how to read Hollys mood and stay out of her way or stop her. She’s grown up with having to lock her things away or Holly might destroy them – sometimes learning this the hard way! She had to grow up quick and be independent from a young age. But to Jasmine and us this is normal everyday life. We are now used to it. It’s exhausting at times but it’s our way of life.

The girls have moments where they love each other and will hug and do things together. Jasmine likes brushing Hollys hair for her. Holly likes having her hair styled but it doesn’t stay in long – Holly soon pulls out bobbles and slides etc. We all like to watch Strictly Come Dancing on a Saturday evening. (Holly can sing the theme tune) Holly watching bits and skipping round the room.

I’m not sure what the future holds, it’s something I worry about all the time, but I know that Jasmine loves Holly and will be there for her. Even though she’s had a lot to put up with it’s also taught her to be caring and understanding especially of children with any additional needs. Jasmine will always stick up for the underdog or the child who is a bit different. She is resilient, knows her own mind and will stick up for what she believes is right. I’m so proud of her for that.

Thanks to https://www.facebook.com/ginagphotography.co.uk/ for this last photo

The 3 sounds I dread to hear when my child has disappeared from view!

Picture the scene … I’m making dinner in the kitchen. Holly is sat flicking through YouTube clips (5-10 seconds of each one!) on her “iPad”! It goes quiet. I turn to see she has disappeared from the kitchen and is somewhere else – hopefully not anywhere as we are prepared with locks on most of our doors so she cannot go and destroy things in other peoples bedrooms. That’s if we’ve all remembered to lock the doors!!…

I stop and listen to try and work out where she is… If all doors are locked then she can only be in her bedroom or her calm space. But…. this is not always the case. There are 3 sounds which make me drop everything and run… sometimes mid sentence or mid chop!

1. The sound of ripping.

I’ve written a blog post on this before. Holly is a shredder! She rips her clothes but she may also rip curtains, bedding, toys, cushions, coats … anything!

Here is a link to my previous post on shredding https://mummy-jet.home.blog/2018/11/19/the-master-shredder/

2. The Mmmmm eating sound!

We now have magnetic locks on our food cupboards in the kitchen to stop Holly taking food and constantly eating. So if I hear the Mmmmmm food eating noise I know she’s taken food from the fridge, someone’s bag or found it somewhere. It may also mean that she is eating something that is not actually edible!!!

Here is a link to a previous blog about eating https://mummy-jet.home.blog/2018/11/28/really-not-a-fussy-eater/

3. The sound of running water!

There are locks on the bathroom and en-suite doors but we sometimes forget to lock them! Holly likes water! So if I hear running water it means she’s either switched a tap on full blast or switched on the shower – usually she is also fully clothed, stood in the shower getting soaking wet and flooding the room!!

Luckily, over the years, we have learned to anticipate that this might happen! So we try to prevent them by restricting access to certain areas and luckily I have very good hearing! 😆😆😆

One of our greatest discoveries… Holly loves horses

**Happy proud mummy post**

Holly has had an interest in horses for a few years now. A friend once brought her horses round to our house to show Holly and she loved it!

She wasn’t scared or phased and liked to stroke the horse. We are lucky to live in a beautiful village where there are lots of places to walk – through countryside, along the canal and up the old pit top. On one route we pass a horse. Holly loves to go and see Millie the horse and give her a carrot.

We do this a lot. So much that Holly got a Christmas card one year from Millie the horse. Which made me cry! Such a thoughtful lovely thing to do. I was overwhelmed that someone had taken the time and effort to make a special card just for Holly.

Now, with this keen interest in horses, we were given an opportunity to go to some special horse riding sessions with a special sports group we attended (Holly already went to the swimming sessions – more on that another time!) On the first session the children could groom some of the ponies. Holly stroked, hugged, leaned on and even tried to lick the pony. We were stunned how interested she was and how long she did this (concentration span usually about 10 seconds!) THEN came Hollys turn to ride! I remember turning to one of the adults and saying… “she might not do this part!” “Oh we’ll see. You’ll be surprised!” was the reply. And oh my… we were!

Holly not only got on (with help) but stayed on for the whole 30 minute trek. And she obviously enjoyed it as you can see from this short clip. She waved to everyone and all the other horses in the field.

Since that first pony ride, over 18months ago, Holly has continued to go riding most weeks and sometimes twice a week. She has her favourite horse, Flynn, but she has riden others too, all of them so calm and placid. They are amazing. The staff are brilliant too. Hollys challenging behaviour can cause issues and be difficult but they always make us feel welcome and are very understanding. We feel very lucky to have found such a warm welcoming center and something Holly can take part in.

I have read several times that horses can be therapeutic. I honestly believe that now. Holly changes when she’s riding. She’s calmer and it is probably the only time Holly sits still for half an hour! She has made small steps but to us it is massive progress. She now doesn’t need someone to hold her legs. She can get on the horse almost herself – just needs help putting first foot in the stirrup. She still doesn’t hold on most of the time but her balance is fantastic. Most of all, she is calm and happy – most of the time!

It is one of the highlights of our week, 30minutes watching Holly actually doing something she enjoys. But it’s not absolutely stress- free as there is always that possibility that Holly may just decide to get off mid-ride! Which she has done a couple of times!!! Ha ha ha. We did manage to get her back on a few times but one time she just skipped back to the stables alongside the horse – she was happy!

Thank you to my friend Tracey for taking the time to bring her horses to our house and introducing us to the idea of horse riding. Thank you to the SANDS group that we attended for giving us our first try at horse riding. And Thank you to Sharon, Gail and the team at the Coloured Cob Equestrian Center for everything. And most of all the lovely horses & ponies who are the stars! They are all so lovely.

If you are interested in horse riding in this area we highly recommend https://www.colouredcob.co.uk/

The Medication Minefield! One of the most difficult decisions we’ve ever had to make!

To medicate or not? This has to be one of most difficult decisions we have ever had to make! I recently read something where a father said that parents chose medication because it was “the easy option rather than putting in the work .” Really?! We would be willing to try anything for our daughter and we have! There is nothing “easy” about deciding if you are going to give your child any medication whatever their condition!

Medication was suggested by our paediatrician when Holly was very little. At first we said no but as she got older and her behaviour got more challenging, her concentration span was almost nothing and her safety became a grave concern we decided to try it. Not a decision we made lightly! We were running out of ideas. As Holly only says a few words and communication is extremely limited she couldn’t tell us about the effects it had or any side effects she was experiencing. We had to be vigilant and observe changes in her behaviour, appetite and general well being. Still not easy!

Over the years we have tried different medication, some didn’t seem to have any effect and some a slight change in behaviour and concentration. Holly also struggles with anxiety and does self-harm. We recently tried medication for this and at last there is a positive effect. The anxiety and self harm hasn’t disappeared but it’s better. This week we have to make big decisions again about medication. We are tackling the aggressive, violent behaviour. Again not an easy decision but we have to do what we think is best for Holly and her safety and the safety of others around her.

As always we will be seeking advice from different professionals and taking this on board when we make any decision. We have been very lucky to have worked with some superb people who have helped and offered valuable advice along the way. Always good as I find I have many questions popping into my head – anytime of day or night!

All the appointments and decision making can be exhausting. Every child is different and so their needs are different. Every parent has difficult decisions to make and sometimes we have to trust our instincts and do what we believe is best for our child. Yes I will be constantly monitoring, questioning if this is the best decision and all the time worrying!

But if you have to make any difficult decision that involves your child it’s always good to remember… a parent knows their child best!

The Joy of online shopping or … “What the… that’s not what I ordered!”

Who loves online shopping? I do! Holly struggles in busy shops so finding the time to go shopping is difficult. To be able to order shopping online is brilliant.

Sometimes what arrives can be a little surprising or maybe even disappointing and I’m sure this does not just happen to me! Measurements are not my strong point. I once got a lampshade that was so small it would only look ok in a children’s play house!

This week a parcel arrived. We are working on helping Holly to feed herself independently. So I was expecting some adapted cutlery and cups.

This is not what I was expecting…

Not a fork in sight! Where is the fork? It’s just a strap! And when I put the strap on our forks even I couldn’t use it!

Not my best purchase! Should have read the description better! Ha ha ha! But… I also thought I had ordered a special sippy cup and when it came there was in fact 2! Bonus! I’m sure it said pink OR orange?

We got both. At the moment she uses a sports bottle and does try a normal cup but she tends to stick her tongue in it and tries to suck out the squash and then struggles putting it down without spilling. So we are going to try these!

Another ‘unexpected arrival’ was when I thought I’d ordered denim jeggings. I was surprised when the pair of Lycra leggings with denim jeans printing on them arrived. First thought… ‘eurghhh! they’ll last about 5 minutes before Holly shreds them!’ But we’ve had them about 10 months and not a rip! How they’ve survived… I’ve no idea??? She must like them?

So what is your online shopping surprise or disaster? Dare you share?

Trying to hold it together

WARNING: Serious honest post!

This is me. Trying to stay strong for others. I have good days. I have bad days. I have days where I just want to hide in a dark room and cry! Or it‘s usually when I’m alone in my car! Today was not a good day. Lots of aggressive challenging behaviour! Lots of destruction of things in our home. By the afternoon I was exhausted and me bursting into tears in the pharmacy was … maybe NOT my finest hour!

Our life is so unpredictable and so not what I expected it to be.

When I became a mother no-one told me that I could be changing my child’s nappies for 13+years!

No-one told me that my child might never have any sense of danger and we would have to watch her every minute of the day or she may harm herself or others.

No-one told me that I could struggle to communicate with my child and my child would struggle to communicate verbally with anyone.

No-one said that my child may never learn to play like other children. Unless you count posting random objects behind radiators, threading anything with a hole on to anything else or seeing how many pairs of pants you can put on your arms and legs?!

No-one warned me that my child could have extreme challenging behaviour and attack me or others – pinching, pulling, scratching, biting on a daily basis!

I thought we would have nice things in a nice house but we live in what could be described as ‘The Alcatraz of North Notts!’ But in reverse! We have locks on most of our doors – not to lock people in but to lock our destructive daughter out and to protect the rooms from trashing or her damaging other people’s property!

No-one told me I may always need to support my child eating as she would never be able to do this independently.

No-one told me I could sometimes feel trapped in my own home because going out anywhere with my child could be too stressful or impossible due to her challenging behaviour! We don’t even go to the supermarket with her any more never mind on holiday!

Then… throw in a younger sibling, who wants to do all the normal stuff – go to the cinema, go shopping, go to the theme park etc…. well…. we hardly do anything as a family anymore!

Yes this is us. This is our lives. It’s not what we were expecting. Maybe that’s something to do with awareness but a whole new issue on its own! We cope! We cope because we have some fabulous supportive family and friends. We have some fabulous supportive professionals fighting our corner.

We survive because when it happens and is working we have carers who give us some respite… a desperately needed break! Because even though we live with all these things that we were not expecting to still be doing with a teenage daughter, we love her and would do anything for her. BUT it is bloody exhausting! And without that break… without that time to rest and regroup … without that time to rescue our home from the constant trashing that it gets … well … then things fall apart!

And the scariest thing is that I can’t see this ever changing! At the moment… I don’t see any light at the end of the tunnel! Most worrying thing is… I don’t know how long I can keep up this pace!

“Poppy dog” – one year on

Wow it’s exactly a year that this furry bundle of fun joined our family! “Poppy dog” as Holly calls her or also known as “Pops” and the “furry food hoover” has been with us for a whole year!

We thought about it for a long time – whether to get a dog! Jasmine, our youngest daughter, was desperate for a dog. The previous year we had gone from 4 pets to one old cat – the rabbit died then the day after our old 19 year old cat who we adored and then the hamster a week later!

Holly loves horses. When we go for a walk in the village we have to go and see Millie the horse. We also discovered horse riding about 18months ago – it’s the only time Holly sits still for half an hour! (That’s a whole new blog post!) But the garden isn’t big enough so we weren’t going to get a horse! 😆😆

So after a lot of persuading… we did it. Like any puppy there was a lot of nipping and chewing at first and we thought she would never wee outside!! But she did eventually get the toilet training.

The whole point of getting a dog was a companion for the girls and there was a hope that it would be therapy for Holly. We attended the ‘Dogs for Good’ family dog training – which was superb and we highly recommend it! It gave us an insight into looking after and training a dog and it was here we realised that in some ways the dog is similar to Holly ie filling up the slots in the brain with over stimulating things and the need to empty the slots with lots of walking etc. Holly loves walking and being outside like the dog. We are still working on taking both out together and as yet we need at least 2 adults to support this! We also did a puppy class and Poppy was quick to master ‘sit’, ‘down’ and ‘leave’ – not so much recall but there is promise.

But there is bond being built between Holly and Poppy. She likes Poppy sitting near or even on her which is our aim for next year – some deep pressure to calm Holly down – just need the dog to sit still. Our training goal for next year.

I love this next picture. Holly thought it was hilarious – “iPad” in one ear and doggy bum in the other!

So a year on… we may not have mastered the complete support/therapy dog yet for Holly, that’s ongoing, but Poppy is definitely therapy for the rest of us and we are looking forward to more success next year. She’s lovely, gentle, so excited to see us all the time and we love her!

(And sometimes she’s a good excuse to get out of the house for a walk! 😆)

Thank you to Dogs for Good https://www.dogsforgood.org/how-we-help/family-dog/

And Pawsitively Trained pets https://www.facebook.com/Pawsitivelypetservices/

The 12 Joys of an ASD Christmas #8 Father Christmas

I’m not sure Holly totally gets Father Christmas or Santa as she calls him. She recognises the imagine and has been known to say “Santa” or “Ho Ho Ho!” But is not that bothered.

We have visited FC on a number of occasions but Holly didn’t appear that interested as you see by the expression on her face in this photo.

That is of course UNLESS it’s Grandad!Grandad is a volunteer for the local Lions Club and so for most of December he is Santa. Even as an 18month old toddler Holly knew that Santa was grandad.

She recognised his voice straight away. She has also recognised him when she was about 7 when he came round on the Lions sleigh.

Since then Holly enjoys going to see Santa on his yearly visit to the village on his sleigh even though it hasn’t been grandad … mostly because she knows that there is a sweet or lollipop involved not because she’s interested in Santa at all! This year she was so quick to go and get a lollipop I didn’t even get a decent photo! This is it…

Well we will see what happens next year?

The 12 Joys of an ASD Christmas #7 THE Day

We have learned over the years that a gradual approach to Christmas is best. Holly does actually like to see the outside lights and she’s ok with the tree. We also leave out the mince pie and wine for Santa and carrot for the reindeer. We used to do this with Holly but she didn’t get it so now we put them out when she has gone to bed! (Jas poured the wine!) This year Poppy dog had her eye on them too!

So the big buildup and then the day arrives – it could all explode or just be an anti-climax! We find the actual day very difficult. Luckily Holly is a good sleeper (at home when we are both there and there is the usual routine!) so only a few times have we had the really early start. Then it’s all about the balance and keeping everyone happy. We have to keep up with some traditions for our youngest daughter but also keep some daily routines and calm for Holly. We have stockings outside the bedroom doors which Santa fills – were all ok with that.

Then downstairs presents have to be in different rooms so Holly doesn’t open them all! (See my other blog on presents.) Then dinner prep begins. One adult preparing dinner whilst the other is watching Holly. . This usually includes a calm down walk – required as the wind up has already started!

This year Holly got highly stressed when guests started arriving – resulting in aggressive behaviour including pinching, scratching and grabbing. A ride in grandads car worked to calm her down at this point and when she returned dinner was on the table.

Holly did eat this year in previous years when her anxiety levels were so high she refused to eat anything all day! After dinner another walk to calm down again before opening more presents. Hollys favourite thing at the moment are different shaped pastry cutters and my fabulous friend made her an amazing present which involved threading opening, closing, unlocking etc.

Holly started to get wound up again as our guests started leaving but a bath as always calms her down. After a stressful day Holly is often tired and asks to go to bed. So at 8 she was in bed and the rest of us just flopped on the settee for a rest with the tv on!

Another Christmas Day over and we survived- aided by walking, car rides and a couple of bottles of fizz!

The 12 Joys of an ASD Christmas #6 Presents!

I think there may be present confusion! Whenever Holly sees a present she says “Happy Birthday”. Not sure if it’s because she associates all presents with this phrase or it could just be because she can’t say “Merry Christmas” ??? Who knows.

Added to the confusion is the fact that it is Grandads birthday on Christmas Day – so we do sing Happy Birthday on Christmas Day with a Christmasy birthday cake!

Our biggest issue with Christmas presents is that if Holly sees a present she wants to open it there and then! There is no waiting and she doesn’t care who it is for! So if we get presents early we have to hide them in locked cupboards before she sees them! She’s not always bothered what’s inside – unless it’s chocolate of course – she can smell that through any number of layers of wrapping paper from a different room!

If there’s lots of presents she will part open one and then go on to the next. At Christmas we have to put Hollys presents in one room and Jasmines presents in another room that we can lock just so Holly doesn’t get to them all!

Once opened we may think the presents are safe. Oh no! Holly has been known to open boxes and chew or break things. So everything has to be transferred to locked bedrooms. Some presents don’t make it to New Year unfortunately. I remember one year we bought a lovely playmobil fairy castle. I spent the whole of Boxing Day building it. The next day Holly tripped and fell on it… destroyed it in less than 10 seconds! We’ve never bought playmobil again!

So Merry Christmas everyone. Hope Santa brings you what you wish for.