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!
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!
Everyone is a little bit autistic, right? Wrong!
This seems to be a saying lots of people throw around when you are going through diagnosis or you are chatting to them about autism when they really aren’t all that clued in. Many people said it to me, and let me tell you it doesn’t bring comfort to anyone in fact it just wound me up greatly.
If your going to make such a big statement think it through properly. Here is an easier one for people to understand because autism is still a very confusing thing for many people, myself included and I have an autistic son.
Your friend tells you that they have had some back pain, are feeling moody and a headache. Would you tell them that maybe they are just a little bit pregnant? No you wouldn’t, because you are either pregnant or not. A bit like autism you are either autistic or not.
Autism isn’t just meeting a few of the diagnostic criteria its meeting them all.
To get a diagnosis of autism you have to be seen by many different professionals over a period of time who will then refer you on to the autism clinic if they all agree that you or your child has delays and struggles in all of the areas, not just one or two.
If you were to spend a week, even a day with someone who has autism you will be able to witness the struggles that they face with day-to-day tasks and activities.
Autism is a life long condition, it will have affected the person since a very young age and will do for the rest of their life.
So NO, not everyone is a ‘little bit autistic’ just like not everyone is a little bit pregnant when they experience a few of the symptoms once in a blue moon.
We started this year off with a rather big and unexpected thing.
Amellia had an appointment with a pediatrician to see what they thought and how to best help her in day-to-day life. Seeing as this was her first appointment I assumed that it was just going to be a chat with the paediatrician about our concerns, getting a first impression on Amellia and referring her on to a long waiting list if she thought necessary.
No referring on, no come back in a few months, no we want to get in touch with the school and see what they say, we walked away with a diagnosis, a prescription and a review in 6/8 week to see how it is going.
Amellia got diagnosed with ADHD.
The pediatrician said that it clearly affects her every second of every day and that she needs the help as soon as possible to help her achieve all that she has. I was also told that they think she has dyspraxia, a social disorder, sensory issues and a learning difficulty. Though we are going to get her medication right and let her get adjusted to this before they investigate the others as this is the one effecting her the most at the moment.
It was a tough day for me as I said before I thought it was just for a chat. I suppose in reality we were expcting the diagnosis at some stage, but not that day and not along with the other things too. My mind is all over the show at the moment and sometimes I want to just cry and others im just so glad we have got her the help she needs and hopefully now once we have the medication sorted she will be able to achieve all she is capable at school and in life.
One thing that I am adiment on and that I made very clear to the pediatrican is that if I feel the medication is changing her personality I will be stopping it. I want it to help her settle etc but I do not want her bubbly and fun loving personality to go. She reassured me that we would find the right medication for her to keep her personality.
What I found incredibly amazing from Amellia and showed just how self aware she is was when the pediatrican asked her how she coped in school and Amellia said she wished she could sit still longer to learn and that she got annoyed at always having to move.
Amellia is aware about her diagnosis and about the tablets that will help. I have also made her very aware that it may take a while to get the right dose. We have also started a diary that we are doing together each night to keep a check on how it is making her feel and how she feels about it all.
Over the next few weeks I’ll share more as I come to terms with it and how the medcine etc works for her, how she feels about it all etc to help anyone else who is in or goes through the same thing.
I’ve learnt how to view the world differently
To see it how you do
And through your eyes it’s a very scary place.
I will keep helping you to see the good
And promise to always do things at your pace.
I will always go with what I whole heartily feel is in your best interest
Not what others want me to believe is best
I won’t let them push me to do what they think is best.
You are my child
I have your best interest at heart, not them.
You amaze me everyday with your quirky little ways
Lining up your toys
Spinning in circles.
Blinking your eyes like crazy to some strange sounds
Watching the same 10 seconds of a video over & over again.
You repeat words and phrases until I repeat them back to you.
You can find letters in all sorts of things
Often leaving me puzzled looking at what you were staring at.
When we go out I hear you reciting the alphabet or counting random objects
It’s adorable, and helps you to regulate.
You are absolutely incredible
Everyday you amaze me
You try so hard to succeed
I am so proud of you
My handsome little boy