Why buying Christmas gifts for my Autistic child is hard

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We love Christmas in the Blooming household. The smell of the tree and the dinner cooking, twinkling decorations all over the house and cheeky cats trying to nab baubles off the tree. Being swamped in wrapping paper and wishing you had purchased something square shaped because you are about to throw a gift out of the window because wrapping it is impossible. It really is a wonderful time. Like a lot of parents, I over shop and especially present wise. In fact for the last 6 years running I have had presents put away for birthdays the following year because I get so carried away. You think I would know better by now? Thing is, when you find something your autistic child is in to you automatically overdo it because it is so hard to shop for them at times. Eliza can have rigid and limited interests for months at a time and then all of a sudden she is in to something in a huge way and it is exciting for both her and the family. So yes, once I know what it is that has caught her attention I hit Google and search for everything to do with it and dish out the present requests accordingly and voila, one happy and contented Eliza at Christmas and a sigh of relief from all who struggle to buy for her. (I will add that this is now ‘the norm’ as family wait for me to suggest what to buy than get a present that isn’t suitable or will just sit in a cupboard for years). 

Before Eliza’s diagnosis I would go out and get toys and gifts that were suitable for her age. That’s what we all do yes? We look at the boxes and see the necessary ‘Suitable for….’ and statements that suggest this would be good for her learning the alphabet or that would be great for fine motor skills…..and then buy a bunch of age appropriate toys that would then go sit in a dark lonely wardrobe for months, sometimes years because she doesn’t understand how to use them or simply can’t because her fine motor skills are so poor. 

These ‘age appropriate’ toys were far from appropriate for my daughter.

After diagnosis (Eliza was diagnosed weeks before Christmas when she was 3) I still went out and got age appropriate toys as usual because at this point I still had no idea what I was doing. It wasn’t until we stated speaking to other parents with Special Needs children that we realised we needed to rethink a lot of things. Everything was a learning curve but we quickly realised that we needed to put a lot more thought in to Christmas and Birthdays. I had expensive toys just sitting there in boxes because she wasn’t interested. Eliza would rather play with the shiny bows from the wrapping or the bubble wrap it came in. Instead of picking up her shapes games and number learning toys she would flip her dolly pram over and spin the wheels for entertainment. These ‘age appropriate’ toys were far from appropriate for my daughter.

It’s not easy to buy gifts for an autistic child. It can actually be quite heart breaking to stand in an aisle full of beautiful dolls, tea sets, teddy bears and realise you may not see that kind of happiness and excitement in your daughter. You feel a little robbed of memories you have not yet had and may never have and then you worry that your child is missing out on such wonderful experiences. It’s a roller coaster of emotions as you battle against ‘the expected norm’ and what your child actually needs/wants/understands. So you go shopping and you pick up a few toys to take to the counter and pay. They are all for younger children and you can guarantee the cashier will ask you that one question you don’t want to answer… “Gosh how lovely are these toys, how old is your ‘little’ one?” and you take a deep breath and say “She’s almost 8” which leads to awkward silence and then explaining of why you chose them in the hope of spreading a little autism awareness so that when the next parent they meet is doing similar they wont look so disgusted or horrified. 

What you need to remember.

  • They are YOUR children and you know their needs, understanding and any limit to abilities
  • ‘Age appropriate’ does NOT mean it may be appropriate for any child in that age range. All kids develop differently so don’t be so hard on yourself because it’s the expected ‘norm’.
  • Every child is different and for some autistic children, age appropriate might be fine so go with what you feel best that suits them.  

It’s not easy buying gifts for an autistic child

One of the hardest things I did was to explain to friends and family that were buying things for Eliza that were never going to be used and to kindly stop. I felt so awful that they were spending hard earned money on beautiful toys but really it was being wasted. Not because Eliza was rude, not because she is picky or spoilt but because she simply wasn’t ready for that kind of gift at that time. So it was a learning curve for all of us but everyone understood. In our house we have two sides to gift buying and they are so very different. On one side you have Eliza who can be very limited in her likes and age appropriate doesn’t work for her but when she finds something she is in to you are on to a winner. On the other side you have Noah, her 2 year old NT brother, who wants every single toy he see’s on every advert or poster and age appropriate toys are quite good for him and his milestones. So yeah, buy for YOUR kids what you know they want/need and don’t worry about ages, brands etc. Most of all, enjoy Christmas together. 

 

 

The biggest thing that worries me is a thought no parent wants to have

Every single parent goes through moments of wondering what the future holds for our children. For some it is about college, University or employment and for others it could be wondering if they will get married, have children of their own. Those are daydream moments you get that leave a smile on your face. I have a child that has Autism, her learning disabilities classed as ‘moderate-severe’. As much as she improves on a daily basis with her social skills, understanding, communication; it’s unlikely she will live alone and always need some level of support and supervision. It worries me all the time, the future. For the time being she spends most of her days at school, loving being with friends and learning what she can. There will one day come a moment that scares me, the day she becomes classed as an adult. Long before then I will do my best to plan with her what she wants in the future but things change all the time.

“They finish school and do what…”

Services for adults with autism in the UK seem to be a postcode lottery with some areas having great resources and support, others having none. I have friends with older children who have now left school and have nothing in place because respite spaces are tight, funds constantly reduced and generally all services being cut or restricted. So the young adult ends up at home, with parents trying to fight a system that gets harder every year. What does the government expect the parents to do? Leave employment and take care of our children/adults relying on the pittance carers allowance they pay (£62/$81 a week for full time around the clock care). I know there are other benefits and financial help out there but the point being these children will one day grow up in to adults. Autism doesn’t go away, it is a lifelong condition. They finish school and do what? End up at home because of cuts to services, placements and support. It worries me, a lot. Eliza is only 7 years old so a lot can change in the years before she is legally an adult. I sincerely hope there will be more services in place by then.

“What happens when I die…”

The biggest thing that worries me is a thought no parent wants to have. What happens when I die? Who will take care of her? Will she manage without me? Who will understand her like I do? I could go on and fill this entire blog with questions that have gone through my head. She has a wonderful bond with her younger brother already and I know he will always be a part of her life but he will have his own life to lead. I would never expect him to take over her care in the future, even though I am sure he would. Sometimes I can’t sleep because of this question, what really will happen….. I have seen other bloggers write about similar thoughts so I know it isn’t just me thinking these things. We all worry for all of our children regardless if they have Special Needs or not but for those that are extra vulnerable, it sits at the back of your mind all the time.

“I push her comfort zones because she needs it”

 

Friends often comment about how much I do with Eliza, how we have tried so many different things already – ballet, gymnastics, cooking club and horse therapy to be a few. Why? Because she doesn’t willingly offer me information on what she wants or needs sometimes so all I can do is try things with her and expose her to new experiences. I test her boundaries and I push her comfort zones because she needs it, she needs to learn that the world will do this to her for the rest of her life. As much as we try and maintain a great routine, I often break it in the hope to show her that it’s OK when things do not go to plan because, let’s face it, life doesn’t always go to plan. If she can learn coping techniques and how to be a little more flexible, these will be great for the future for her. I will always try and show her new things, to keep teaching her about life. I read something on a Facebook page last year that has stuck with me ever since. It was a picture of a young lad and the words read something like “The greatest gift I can give him is to teach him how to live without me”. It hurts to read and type that because it hits home. One day we won’t be here for them, they will go on to face this world without us. We can hope services and employment opportunities will be there and that somehow a support network will guide them through what they need. So for now, I test Eliza’s flexibility and I try and expose her to new things. I help her come to terms with change, learn to cope with it. I push her boundaries so that she becomes used to different scenarios, situations and problems even now at the young age of 7. I hope to keep giving her the support and courage to try new things and live life to the fullest. This is all I can do as a parent because, like that post om Facebook said, she needs to learn to one day live without me.

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If stripping were an Olympic sport….

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Are you watching the Olympics? I love it and often sit here making remarks like “If Eliza were in that contest…..”

If stripping was an Olympic sport, Eliza would win Gold every single time. In under twenty seconds she can undress and sit back on the couch, remote control in hand and Mickey Mouse on TV yet this is the child that simply can not undress herself for bed, PE at school…..

Flapping!!! Another Gold, she seriously looks like she would take off sometimes. Flappy when happy though, beautiful smile she has and when she is laughing she has a dimple that is super cute. I wonder if she could flap through high jump, she definitely has the long legs. We tried Gymnastics before with her, she told me how bored she was after only 2 sessions.

Sprinting, well I think we would all have gold medalists on our hands. Someone opens a bag of crisps and whoosh, she is off like a highly trained sniffer dog! Don’t ever forget how fast they go from ‘dead weight laying on the floor refusing to move’ to someone that would give Usain Bolt a run for his money at the blink of an eye.

Shot Put is another. Wow, how I have seen iPad’s and juice cups fly. Not to mention shoes, DS consoles, remote controls, siblings….

A judo/wrestling combo is something that happens daily in our house between Eliza and Noah. That grabbing of clothes, linking legs and throwing each other on the floor. Usually to decide who gets the TV remote or the last pack of crisps. Oh or a toy that neither of them played with for months yet one of them found and it’s suddenly like treasure!

Weightlifting I think belongs to us parents. Lifting that ‘dead weight’ child from the middle of roads, car parks, parks and bundling them safely in the car. Carrying them up the stairs or removing them from the top of a sibling they are sat on. I should have muscles like Popeye by now.

I love to reflect and I have learnt many things from what I have just written above…

– I watch too much Olympics
– A lot of issues are caused by crisps
– I need to get out more

Enjoy your Tuesday and the Olympics xxx

You can follow us on Facebook www.facebook.com/BloomingAutism/

Five awesome cheap activities to do with the kids

 

 

cropped-822524745o4tleq2tie5zril.jpgAlthough we do a variety of things during the weekends and school holidays, these are probably the five that are most enjoyed by my children and have led to hours of fun. They are all also relatively cheap to do and set up as well as easy to store away for another day (other that the gingerbread, please eat and enjoy that).

 

Play-Doh

Fairly cheap to buy and many accessories to add to make it fun and also great for helping with social stories. We have the clown and his hair grows so you can cut it. You can make pies to balance in his hands. This really helped my daughter conquer her fear of having her hair trimmed and she found it fun. Play-Doh is really good to learn cutting skills, rolling, shaping and great at improving the hand muscles which in turn help fine motor skills. It’s also amazing for letting imagination run wild. We have made Play-Doh cakes, animals, flower garden, faces….. you can make anything you want. It is also fairly easy to clean up afterwards and put away for another day.

Decorating Gingerbread

Another fairly cheap activity and even more fun if you make and bake the gingerbread yourself. Of course they don’t have to be shaped like a person. On the few times we baked in the past we have made gingerbread flowers, houses, stars, trees (apart from summer, this is also a fab winter activity. At Christmas get the kids to decorate festive shaped gingerbread and pop in a jar or tub, add a bow and you have a lovely home made gift for someone). Any shape you wish really, the kids love decorating them. We use a variety of things to decorate – icing in different colours, smarties, jelly beans, hundreds & thousands. Can help coordination, fine motor skills and encourage choice as well as the added bonus of testing touch, taste, smell. It is a great activity for creativity and imagination and of course quite a tasty one!

Kinetic Sand

Prices have come down recently for this so once you have your basic quantities it is quite a good deal money wise. Many packs come with a box to store the sand in a few moulds, rollers, mini spades. We purchased a couple of inflatable trays to use the sand in (as in photo below) and this helps keep the sand in one area and keeps it easy to tidy (and if you have more than one child, stops the fighting if they have a tray each). It’s a good sensory activity and leads to much creativity and imaginative ideas. It is available in a variety of colours and is a perfect activity for indoors if you find yourselves stuck indoors on a rainy day.

Painting 

Most kids enjoy making a mess!! Paints are quite cheap to buy, as are a few brushes and rollers, sponges, rags. You can even paint with hands, fingers, feet! Paper is the cheapest choice but you can pick up some lovely blank canvas in the sales which make beautiful gifts for friends and family once decorated by your children. We have recently painted wooden bird houses, money boxes, little wooden treasure boxes, canvas, paper masks, balloons, plain white tiles, pasta (uncooked, in case you wondered 🙂 and you can then thread them on string and make pretty jewellery). Just be aware that if you have a stimmer like Eliza, a lot of other stuff gets painted when the ‘flappy when happy’ arms start – hair, tables, floors, cats, noses…… You really can paint anything you like and it can lead to a lot of messy fun. Throw in some glitters, stickers….. whatever your imagination fancies.

Bubbles

Probably the cheapest activity and can be used in so many ways. You have your normal tub of bubbles and a small wand that the child blows through. Simple and fun. Also highly effective for super anxious and upset children/adults to do as it encourages steady breathing in and out. Calming themselves and they don’t even know it. It’s a sneaky weapon I use when Eliza is anxious, I send her outside with bubbles. She thinks she is going to blow fun bubbles, a distraction as such and she has no idea that what she is doing is quite soothing and calming. Don’t forget you can get large bubble wands that can be waved in the air (perfect for the child or adult that can’t control breathing yet or needs a sturdier, larger wand), bubble guns of all shapes and sizes.

Thanks for reading. If you try any that you never did before then I hope you all really enjoy the activities. You can follow Eliza’s journey over at….

https://www.facebook.com/BloomingAutism/

It’s all about the P’s…..

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Our summer holidays just started here in England, six weeks off for the kids. I envy the families that can just enjoy each day as it comes, those that just do whatever they please and whenever they please. For us, yes we generally have a good time off but it comes at a cost – endless work to make sure we get it right. Choosing what to do, where to go, is it safe, can the kids escape, is water involved….. We risk assess everything! We have to or a simple day out can end in disaster. I have friends that can sit their kids in the car at a seconds thought and off they go to a theme park, a zoo or the beach. We do these things but they are rarely spontaneous. Routine is key with Eliza but she can, at times, be flexible if a small change suddenly happens and in particular if it is something that catches her attention and interest. For a day out I have visual planning to do, checking out locations of all toilet facilities, all exits and how to get to them, areas that she can bolt and escape. Looking up places she will eat at, packing a bag full of essentials – pull ups, wipes, juice cup, iPad, spare clothes. Creating, printing, laminating and sticking up visuals as needed and working on social stories and making sure she fully understands what is happening and when. Before we even leave the house I am sure I have worked towards this day out at least half a day.

We live a life surrounded by P’s…… PLANNING (so that all should run smoothly and nothing is missed), PREPARATION (visual aids for Eliza, social stories, explanations) and PRAYING (that it all goes well and the first two P’s were worth it). Without it we would end up with a highly anxious, super stressed Eliza as well as a miserable Noah who will be upset because his sister is. We would also have parents with the headache from hell that have most likely wrestled at least one child in to the car for their own safety and attempted to calm the situation and stop the child running in to danger. It’s bloody hard work, you never get to switch off because you can’t. You have a child that NEEDS this planning and preparation so anxiety stays low, they stay safe and have a great day. You have a child that has NO DANGER AWARENESS whatsoever, so all this extra work is a must to ensure that everyone has a great time and everyone leaves together happy and well. You have a child that somehow manages to blend in among other children whilst you hold your breath hoping she is coping because she seems to be smiling and enjoys herself in the situation she hates the most, BEING SOCIAL. The funniest thing is she normally has a blast and loves the day whilst as a parent you feel you just performed a military style operation just so she can have that day and you are exhausted.

Yes I envy those that can just do things without a second thought, no care in the world but we can do the same and it just means a little extra work but if it makes sure we all have a great (safe) day out then so be it. We just need those P’s. We must plan and prepare and I am pretty sure most of us end up praying. Perhaps there should be a fourth ‘P’ involved – PROUD (because it’s worth celebrating when all that hard work pays off).

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It’s not us, It’s you

I have lost count of how many times I have accidentally stopped a conversation dead, how many new friends I have lost before I even had them and how many times I have managed lose invites to things because of Eliza. You know that awkward feeling when you meet new people whether it be a friend of a friend you bump in to, a new toddler group you are trying out or just chatting in the queue at the supermarket. Somehow, don’t ask me why, but if you are a woman you always get asked that question….. “You got any kids?”. Naturally I reply yes and it ALWAYS leads to the next one “So what school are they at?” and that right there is the question that gets me in trouble if you like. As soon I say the name of Eliza’s school it is the biggest conversation killer ever. (She attends a special school because she is unable to cope in mainstream). The odd person will politely nod and accept what you just said but so many drop to full on silence. Her school is great and has an impressive reputation so please  don’t get me wrong,  It’s not the school being mentioned that stops them dead, its the fact that she is ‘special’.

It saddens and shocks me how people fear special needs and how misunderstood Eliza is simply because she is autistic. A lot of people drop to silence because they don’t know what to say, how to reply. In some ways I prefer that because its miles better than hearing stuff like “Oh yeah I read about that, she just needs some good discipline and she will grow out of that phase”…….. Ahh yes, thanks for that (said no parent of an autistic child ever!!). It’s a shame really as you are missing out on me and I am pretty awesome as a friend, even if I do say so myself lol. You are also missing out on getting to know Eliza because behind the autistic diagnosis is a cheeky, feisty, independent diva who is a top notch negotiator where having time on the iPad is concerned. A girl with such a strong personality she has tried to charm the keys off staff many a time at school so she can get outside on the slide. She has the most infectious cheeky giggle and smile. A proper tom boy in personality yet when the mood takes her can be a delicate princess or a super hero taking on the world. Yes, she attends a special school. It doesn’t make her less of a person and it certainly shouldn’t stop you getting to know us. She is special, in fact she is blooming amazing and she is mine. Your loss people, your loss.

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When Two Teams Become One Again

oijlknmOver the last six weeks my husband and I have mainly been apart. We have spent less than 4 hrs a week together. Our conversations have been brief and mainly done via text or Facebook message. The only time we spoke on the phone was for urgent messages or when the kids were asleep so they could not hear the conversation. Don’t worry, this is not a marriage breakup but it was a separation that was unexpected and split the family in to two ‘teams’.  Our son, Noah, was 2 in January and recently became very ill and very quickly leading to a lot of time in hospital (Team Noah) meaning Eliza was at home with one parent through all of this whilst also working her way through a few incidents at school that caused her injury so her anxiety rocketed (Team Eliza). Hubby and I became a Tag Team so we could care for both children and their needs with me staying in hospital Mon-Fri and returning home for weekends and hubs doing the opposite. It was the best we could do between us as it meant he could work from home in the week when Eliza was at school. We saw each other briefly at ‘hand over’ which was a mere ten mins here and there as the hospital Noah was in was over an hour away from home and we didn’t like leaving Eliza without one of us for too long. Family  were great at helping and enjoyed her company whilst the travelling took place for hubby and I but I think it has been an eye opener for them about the anxiety she often hides so well.

Noah had the symptoms of a Urinary Tract Infection and was treated with antibiotics (two different lots in fact over 2 weeks) but started to become quite unwell. I took him to A&E and he was admitted with what they thought was a kidney infection so he went on to IV meds and fluids and a catheter was put in as he could not pass urine without it. He had an ultrasound that showed a very infected kidney (plus kidney stones) so stronger antibiotics were given via IV and he often needed morphine for the pain. A repeat scan was done 3 days later and the expected outcome was that the infection would be clearing. After all, at this point he had done 2 weeks oral meds and almost 5 days of IV meds. The scan was shocking, the kidney was getting worse instead of better so we were transferred to the children’s hospital where the specialists were that could look in to why. Long story short – After a failed stent to kidney, failed drain in to kidney, numerous scans including a special dye scan to determine function of kidney (there was pretty much none!) we were lucky to fall under the care of the senior specialist who simply had a gut feeling that he knew the cause and it turned out he was right. From what they told us, Noah is only the 4th case in that hospital in 15 years or more to have this rare condition and he is certainly the youngest they have seen. Noah had his kidney removed and has to return in the near future for removal of some stones and many check up scans and bloods. He is recovering well considering what he has been through. We have been put under the ‘Rare Disease/conditions’ team also.

(For those that may be interested in it, this is it – Xanthogranulomatous pyelonephritis (XGP). XGP occurs in approximately 1% of all renal infections. It is 4 times more common in women than in men and is usually noted in the fifth and sixth decades of life. XGP affects both kidneys with equal frequency. Although XGP is rare in the pediatric population, it is found in approximately 16% of pediatric nephrectomy specimens. In children, XGP is more common in boys and usually affects those younger than 8 years. Ref http://emedicine.medscape.com/article/2050430-overview)

Whilst all of this was going on Eliza was doing her best to understand why we were not all together, why Noah was ‘missing’ which is how she described it. Sadly she had also been injured at school a few times by other children during this and ended up with a black eye and teeth marks on her arm. Her anxiety was through the roof and we have has many meltdowns which we have not had for a while but they are expected after everything. The Easter Holidays happened at the time Noah was heading for surgery so she was already out of routine with no school so her entire world fell apart for a while. Considering what she went through, she coped so much better than I expected. After all, there was no time to plan for something none of us expected to happen. It took a few days to encourage her back to school last week, she kept saying “School is dangerous”. If I had been given a black eye and bitten, I would feel the same too!! She has settled back in and slowly the routine is getting back to ‘normal’. Noah is home recovering from surgery (although you would not know he has had anything done the way he is dashing through the house as usual).

It’s funny how kids recover fairly fast to things yet I am nowhere near over any of this. My heart and head are still in pieces. Every moment I was in hospital with Noah I felt guilty that I was not home with Eliza. Stupid things went through my head every minute. Was she ok? Did hubby remember she had swimming today? Does Nanny know Eliza can’t drink orange drinks? Was she ok at School? Does Daddy know where the uniforms are, where the timetable is, did he put pull ups in her bag, does he know what she has for lunch……..???????? Yet the minute we switched and I went home I felt guilty at leaving Noah. As much as I loved spending time with Eliza and she very much needed mummy time, at the back of my head was fear. What if he became worse? I would be an hour away at best through traffic and that is after I find someone to stay with Eliza. I am not ashamed to say that many times in my head I panicked “What if he dies and I am not there!” and I am pretty sure hubby felt the same when he was home. I have never felt like such a useless mother than I did during all of this yet deep down I know I did my best. It really hits home how hard it is when you have more than one child and one becomes so poorly they are in hospital yet the child at home, autistic and struggling with anxiety needs you too.  My heart aches for what both children have been through but it’s healing slowly as I watch them together, reunited in chaos and cheekiness. The look on Eliza’s face when she walked in the lounge and saw he was home was a look I will never forget. Neither will I forget the look on his face when he saw his sister “Eye-za” coming towards him with a hug. We are all (for now) back together. Team Blooming!!!