First off, sorry it has been so long since I have blogged. We have had a lot going on and I kinda fell off the blogging band wagon, but here we go with an update and trying to get back on the band wagon.
Dylan currently does not have a school place, due to no school suitable having a place. This means that we are having to home school him for now until a place does come up but no one seems to be able to give us any clue of when a space may come up or offering us advice on what we should be doing with him while he is at home.
Mainly I have been trying to work on his self-help skills and eating. Encouraging him to learn how to turn the tap on, put soap on his hands and wash them properly, we attempted potty training again for a good few weeks and he just couldn’t get the whole needing to go thing so we have put that on the back burner for a while until he is ready and notices more of the signs. Making food a little fun with trying to encourage sensory play with food, just touching a new food before having one of his safe foods and getting out and about in the world.
He is starting to put weight back on instead of losing it so we are celebrating that greatly, even though it took 4 months to put 0.2kg on it is a plus instead of a loss. He now has the majority of his safe foods back, minus the mince but I am not giving up hope on that and have my fingers crossed it will be back shortly, or maybe some other form of meat and goodness!
Verbally he has came on, and it is incredible to watch him as when he was first seen we were told to not expect him to talk. His favourite thing to do is walk around counting, Dylan is at his happiest when numbers are involved. Encouraging his numbers in everyday situations and trying to do things that involve numbers but aren’t just counting or adding is something I have been trying to do. Sensory play but with numbers in that his has to get out, colouring in numberblocks, dot to dot to make a numberblock.. basically anything that I can put numbers into to encourage him to do it I am.
He has also have seen an OT recently which I wont go into here but will do another post about along with all the other things that have been going on with him and expanding on what I’ve already mentioned.
Amellia has started P4 and it is not going anywhere near as good as P3 went. She used to wish the weekends away so that she could hurry back to school to see her teacher and now she wants the weekends to never end. Neither are ideal, I mean I would much rather she enjoyed her weekends and her time in school so a happy medium of the two would have been perfect. Maybe one day she will find that, but for now I am reminding her I am here to chat to no matter how she feels and that if she keeps persevering it may start to get better sooner than she expects.
We have been enjoying a lot of family time and getting out and about together. I am hoping that the winter isn’t too wet so that we can keep exploring and enjoying these times together as indoor places are not Dylan’s favourite. Indoor places tend to be busy and noisy making it very hard to go as a family as what often happens is one of us ends up leaving early while one stays in with Amellia. This in turn causes upset to everyone as Amellia wants us to spend time together, Dylan ends in meltdown and as parents you feel guilty at having to go separate ways and defeated.
Here is to a winter where we can still go out in the open without getting too wet or cold and being back on the blogging band wagon as it is something I really enjoy!
We have had a big win recently on something that we have been working on with Dylan for a very long time. I knew when he learnt that they could help and would aid us in getting out and about in the world that they would help.
When Dylan started school we told them that we had been encouraging him too try and wear ear defenders to help when out and about as Dylan finds noises very distressing. If we go outside and it is windy he is covering his ears and trying to escape, if he was outside in the garden and a truck, motorbike or an airplane goes overhead is running in and slamming the door. That just isn’t fair for him, he was desperate to play outside but just couldn’t stand the noise. They told me that they weren’t a good idea, wouldn’t make any difference to him and many other things.
I chose to simply ignore them. I knew they would help, I know my child far better than they think and I understand autism far more than they can appreciate.
We started with just 10 seconds on and it took a long time for them to even last that long, months in fact. Once he managed to keep them on for a few minutes you could see him starting to experiment with them, pulling them slightly away from his ears and then putting them over properly. Then when he was putting his hands over his ears I was putting his ear defenders on and he then started to realise that they helped a little.
After he was confident in the house with them and out in the garden I started taking them out with us and when he got overwhelmed and was asking to go home I would pop them on him and they would help him last a little longer.
He made me realise though this was the wrong way to do it.
The other day before we went into Soft play for the first time he requested “headphones” as he calls them, so I popped them on for him. My goodness what a difference it made having them on from the start.
For the first time I had to say to Dylan after two hours it was time to go because Amellia was asking to go. While there he was so much more relaxed, wasn’t running to the toilet to hide, no closing himself in the changing room, he actually enjoyed his whole time at soft play!
These have been a game changer for us, I cannot wait to get out and about more and am hopeful that using his ear defenders will enable us to enjoy more family days together. They will help to prevent him from getting overstimulated which can lead to meltdowns and self injurious behaviour.
Here is too more adventures together as a family!
We see the dietician regularly and have done for about a year or so now. Unfortunately it hasn’t proved to be very helpful and now we are at crisis point and that’s when she starts to panic and trying to desperately help. Reaching out to the other professionals she knows for advice.
When we first went to see her Dylan was on the 75th centile. Even though he didn’t have a very varied diet he had one thing from most food groups and what he was eating he was eating in large quantities. At this stage I asked for advice on how to encourage him to try new things and was told to just keep offering it to him, do lots of sensory play but to not be too concerned as he was getting most of his food groups and she provided us with a powder to put in his drinks to provide him with his vitamins and minerals.
Next time we went to see her his diet was starting to be a bit more restrictive, he hadn’t gained weight but also hadn’t lost any so she said not too worry to much. She gave the same advice as previous and couldn’t give any other advice on how to encourage him to eat or offer any other support.
This time he had dropped to the 50th centile and she wasn’t happy and said that if he was to drop more it would be serious. I voiced my concerns about him possibly having an allergy and this may be stopping him from wanting to eat. If he relates food to pain and only has these select few as safe and knows they don’t hurt then maybe that was why he was so selective. She said that may be true but at this stage didn’t do any tests etc. Despite saying that she still couldn’t offer us any help, workshops or get us referred to anything else to try and help him.
Now he has dropped to the 25th centile and is malnourished. His height is dropping too and this is a huge concern as is now showing that his restrictive diet is effecting his bones and everything too. His diet has got worse and worse, he now eats around 5 things. She has prescribed these smoothie shake things to try and aid him to put on weight, but to put on weight from these he needs to be drinking 6 of them a day. We are finding it rather a struggle to just get one in, but I am so glad he will actually drink it if we trick him. If he doesn’t start to put on weight quickly he will need to go down the medical route, which is obviously a very scary prospect for anyone.
She is now thinking we need to start looking at how his gut is, his throat and all that linked to his digestive system. Also that we need to try these shakes for a few more days and if they still keep having an effect like they are at the moment that they think he may be lactose intolerant.
It is an extremely stressful time for us. I am like a wound up cog, constantly on edge. Having to calorie count everything he eats each day, worrying that he wont put on weight and what if. .
Hopefully next time I can report back that he is putting on weight. Fingers Crossed!
I can’t wait for the good weather to start being a bit more constant… hopefully. I love nothing more than getting out and about exploring places around us with the kiddos, hubby and pup. Something about being out in the fresh air, enjoying each other’s company, throwing stones, building towers, climbing trees and just ignoring everyone else around us and forgetting everything that is going on just makes me feel so refreshed and like a weight has been lifted for a while.
My pair are both full to the brim with energy and love running free, Dylan has started to be a bit more adventurous when we go to places he is familiar with now and often heads off the path so I’m glad that we have many walks around us that are away from the roads and that he is safe when he does charge off in a random direction. Not so great for me because I’m then having to chase after him dodging tree stumps and everything because he doesn’t respond to his name or have danger awareness but also it is so amazing to see him actually enjoying something and looking forward to it when you tell him where we are going.
I have looked into those things that you tie around the child’s waste and then around yours, but I’m really not sure Dylan would tolerate it at all and we would end up going opposite directions around tree or clothes lining some other innocent person out on the walk. I’m hoping that over the summer we will be able to help him learn to respond to his name by doing lots of fun games but for now we are just over the moon that he is actually enjoying being outside.
Another favourite place for us all is the beach, if you get up nice and early like my pair do then the beach is empty so they get the run of the place without having to keep a close eye on them as they all go different directions. Lilo charges off to smell every single bit of seaweed, Amellia normally hightails it straight for the sea no matter the weather or how cold it is and discards her shoes and socks while running down the beach and Dylan plonks himself down on the sand right by the step to dig holes and draw in the sand. Sometimes Dylan will then run to the water to wash the sand off his feet but quickly comes back out to start his drawing in the sand again.
The beach always reminds me of my childhood, growing up with the sea as my back garden was incredible. We would always be out climbing on the rocks, hunting in the rockpools and seeing who could find the biggest crab; then as I got older, I started to really appreciate the beauty of the sea and taking in the view. When times get tough, I always go and sit by the sea, it’s my happy place.
I’m really looking forward to this summer and spending quality time with my kids and as a family, I live for the holidays from school.
We welcomed a new little addition to our family last week!
Every Lilo needs a Stitch and our Lilo is no exception, so everyone meet Stitch! =]
The cutest little bundle of fluff I have ever laid eyes on, she is a Cavachon which is a Cavalier King Charles x Bichon Frise. Toilet training is in the bag and she mastered it so quickly. I’m not sure if having an older dog here made it easier for her to pick up on but I was all ready for cleaning up puddles but have been extremely fortunate and not had to clean up many at all!
She has already mastered sit and down, one smart little pup at 9 weeks old. Lilo and her are getting on well too, it took a little while before they were pals but they enjoying licking each others faces now and cuddling up together on the sofa on the odd occasion. It will be great once Stitch has had her second injection to get them both out and about as I feel bad leaving Stitch behind when we head out.
Amellia totally loves her and keeps asking when she can have a sleepover in her bedroom, but evil mummy keeps telling her no. She is really excited to be able to take her out on walks and to the beach for her first time.
Dylan is completely besotted by her. Every morning he is charging downstairs to check she is ok, when he gets in from school he is checking on her and is always wanting to cuddle with her. It took a few days of being pretty stern with him on the lifting front, but he got it alright and every now and then he does try to lift her but he knows he is doing wrong as gives you that cheeky little grin. When she first arrived he always wanted to put a blanket over her to play but after repetition of showing him how we play appropriately with her with her toys he quickly picked it up and what really helped with this was taking him to pets at home and getting him to choose her some toys to play with with him.
I’ll be sure to keep you posted on how she is getting on, how her first walks go and what things she enjoys. I’ll also do a more in depth post soon about how we helped Dylan learn how to interact appropriately with her so that if you are in the same position as us it can hopefully help you too.
Amellia and Dylan are now forming such a strong bond and it has been incredible to watch it form. For such a long time Amellia was always really striving for a bond or even just some recognition from Dylan and now she is finally getting it.
Dylan will now look for Amellia when she isn’t here and will hunt through the house for her. It is amazing to see as until very recently he really wasn’t bothered to much at all about if she was here or not, as long as I was about and strangers weren’t in the house he was happy. He will now run up to her and shout “sissy” and then they embrace each other in a little hug, my heart melts each and every time.
They will sit beside each other and watch clips on the ipad together, Amellia really enjoys reading books to Dylan and the majority of the time he enjoys sitting beside her pointing out the letters and shapes that he recognises and when they are both feeling very compliant they can even manage sharing a bag of crisps!
Amellias understanding has always amazed me too, many people struggle to understand autism and accept it but she has just taken it all in her stride. When talking to Dylan she simplifies everything she says to try and help him understand, if he is getting wound up she is trying to find out what he wants and offering him things she hopes will help him calm down or distract him and when he lands on top of her from the top of the sofa trying to get her to play most of the time she will then get up and start a game with him.
The other day we were upstairs getting ready to go out and it suddenly got very quiet, I looked at the hubby not sure if to enjoy the silence for a few minutes longer or go investigate. I snuck round the corner to see what mischief was happening and was greeted by something absolutely adorable. It was such an act of kindness, love and understanding. Amellia was stood brushing Dylans teeth. Dylan loves getting his teeth brushed and when he goes into the bathroom often will just pass you his toothbrush and wait for you to put toothpaste on it and brush his teeth for him.
Seeing this just made my hear melt, we have been working on getting Dylan to realise that Amellia can help and be fun and this just showed me that the hard work has been paying off.
The last weekend of the Easter break for the kids from school and the rain started to pour. I didn’t want to spend the weekend stuck in the house so while pondering what to do I thought I might take Amellia to the cinema if anything was on. While I was having a nosey I noticed a movie that looked like she would enjoy and my heart ached a little as Dylan had never experienced the cinema before, when I came across a sensory screening of the movie. I had a quick chat with the hubby and we decided to go for it, and if Dylan really couldn’t stand it one of us could stay with Amellia and the other head home.
With it being a rainy day I was then worried that others who didn’t really need to go to a sensory screening may go to this as something to do with the kids in the rain but the cinema had it perfect. This one started at 12 and a regular viewing of the movie started at 12:10, great! Whoever was in the sensory screening was going to be people who needed it and would hopefully be understanding if Dylan wasn’t best impressed, this gave me enough courage to book the tickets and get everyone ready to head out to the cinema!
With a bag full of Dylan & Amellias favourite snacks to keep them occupied we headed in to get some popcorn. With a bit of a queue forming behind us I was worrying that it was going to be a bit of a busy screening, but once we headed into the screen we were the only ones there and it stayed that way. Who doesn’t love being the only ones in the cinema!
What a sensory screening means is that they turn the volume down and have the lights on. Unfortunately though the adverts before hand didn’t follow suit and were still full volume and Dylan found this extremely distressing. He was shouting for home and banging his ears and head. He then took my hands and put them over his ears and seemed to relax a little. Thankfully we were the only ones in this screening because by the time the adverts had finished Dylan was adamant we were going home but I wanted to try and get him to stay until the movie started with the bright colours and quieter sound to see if he would enjoy it.
With him pressing my hands tightly over his ears by his request he started to relax as the volume went down and the bright colours and sing song ways of kids movies started. He shouted home a few more times and I decided next time he asked I would take him. After a few more minutes he got off my knee and looked like he was going to make a bolt for the exit, I’m pretty sure he was until he spotted the numbers on the chairs.
Thankfully with it being an empty cinema we left him to his own devices walking up and down the chairs looking at the numbers and bouncing the chairs as he counted.
He lasted the whole movie!!
This was such a positive experience for us all; Amellia totally loved the movie, complained that it wasn’t long enough and sitting still really isn’t her thing and even though she could have wandered while watching she sat perfectly still the whole way through. Dylan enjoyed his first trip to the cinema, maybe not in the expected way but he enjoyed it in the end and we all got to have a family afternoon out doing something we haven’t done before.
Thank you Omniplex for making these sensory screenings so that people who struggle with full volume and darkness can enjoy something that others do on a regular basis. We will be back in the near future, so many kids movies coming out this year that me & the hubby had long discussions over who was getting to see it in the cinema with Amellia but now we all can!
I also highly recommended the movie Wonder Park, it was amazing and one we will be buying once it is released on to DVD we enjoyed it that much!