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Fell off the wagon, back now.. Sorry!

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!

-WeeOhana

 

 

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Sensory Screening Cinema Experience

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!

 

 

 

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Everyone is a little bit autistic ..

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.

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Christmas time changes

Christmas time is upon us and I am so excited this year. Last year I just wanted Christmas to be over and done with and couldn’t wait to get the decorations away which is so unlike me. I’m so glad this year I am back to full Christmas love & excitement.

Christmas decorating and Christmas time in general is a little different in our house than it would be in most households. Dylan doesn’t cope well with change, for example I took one thing out of the living room to make room for a bit of Christmas and he has dragged it back in very single day since. We decorate slowly and the tree goes up last. This year we will be putting the tree up on the 16th, plenty of time to enjoy it before Christmas but not too long that all the decorations being taken off and lined up and sorted into colour several times a day wont drive me so mad that I want to take it down.

After Dylans birthday on the 9th I’m going to slowly start to add little Christmas bits around the house so that it is slowly changing rather than all of a sudden his safe space is completely different. I know he is going to love all the lights on the tree, but his love for collecting and lining up things that are the same he will just be in overdrive all the time.

We have a lovely little Elf in our house called Max, Amellia totally adores him. We have a pretty lovely elf in our house who doesn’t do all that much to be honest. He moves around and leaves little notes of encouragement. On the weekends he will leave some small gifts which are generally arts & crafts related to Christmas like paint your own decorations, santa letter kits and things like that. Dylan does not understand the Elf malarkey but it is loads of fun for Amellia.

Advent calendars are done different in our house as well, because lets face it give a number obsessed kiddo something with numbers all jumbled up on, he’s gonna open all the doors in the right order in one day and get very distressed if he cant. I open his for him and then give him the item from the advent calendar, this year we got him a playmobil 123 one as he is loving it at the moment! Every morning when I have given him a piece that has come in the calendar though he looks at me like I’m mad and goes and puts it away in the box with the rest of the playmobil and then carries on with his morning. I think when the 25th comes and I don’t give him a bit of playmobil to put away he is going be so confused about why this new morning ritual has changed but we couldn’t let him go without an advent calendar!

Both the kiddos Christmas plays are coming up and I really can’t wait to see them both. Amellia is all bizz because she is singing at the very start of hers and has been singing the song constantly for the past few weeks, I must say she does have a simply wonderful singing voice. Dylans will be adorable just seeing them all together and hopefully taking part in a little sing a long to a few good old Christmas songs. Amellia is really excited as she is coming along to see his too, it’s on her last day of school so she wont miss anything at all as we all know that is a day just full of chaos!

Hope you are all enjoying getting in the Christmas spirit and your kids are enjoying it too, even if it is in a different way to how you used to enjoy Christmas.

-WeeOhana

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2018 has gone too fast!

I hope 2019 goes slower than 2018, This year seems to have just flown by at an alarming rate and I’m not sure how I feel about it!
Adrian and myself have been married 5 years this January, Amellia is now 7 and Dylan is 4 next week!

They say time flies when your having fun, I think our time had flown because we have been so stressed and had so much going on! This year especially I feel like I haven’t had a moment to think or process anything that has been going on.

Amellia has changed to a new school which is absolutely incredible, and in a completely different league to her old one.

Dylan has started nursery with a very rough start but seems to be enjoying the morning class a lot more so is sorted for a little while.

Amellia got referred to a paediatrician who we will be seeing in February, and has been seeing lots of therapists throughout the year.

Dylan got his official diagnosis and is now starting to say words! This time last year he didn’t even attempt to say or make any meaningful noises so it is absolutely incredible. Never give up hope.

We added two little guinea pig buddies to our family who are totally adored by us all and have the quirkiest little personalities and enjoy squeaking at us every time the fridge is open.

Adrian & myself got out for one night together without the kids, drank too much and ended up forgetting half of the evening. What we can remember was a great time though and we thoroughly enjoyed.. next year if we get out together we will try and be more controlled with the drink. lol!

Amellia has shown us just how incredible she is at spelling and is making us super proud by achieving top marks every single week.

Dylan now has a huge love for Duplo and is constantly building towers bigger than himself and knocking them down.

To round it up, its been a very stressful year full with many high highs, and low lows. Hopefully 2019 will have a few more level moments for us to catch our breaths and we will be able to continue to do what is best for our kids and maybe if we are really lucky get two nights out together!

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Understanding is impossible unless you have walked it yourself.

Having an autistic child is something that is impossible to understand unless you have walked it yourself.

The sleepless nights because they don’t sleep, and when they do your mind is going at maximum speed thinking of how to help them better tomorrow, what you can do that won’t cause a meltdown, if they will ever get a job, be able to live independently, cook, dress appropriately independently, tell you how they are, ask for what they want, say where hurts, if they will ever have a partner.. and many, many other things.

The worry when they won’t eat and have an extremely restrictive diet if they will be able to keep healthy on the select few things they eat. When they stop eating a certain food and you are left with even fewer foods, and they are losing weight and no one has ideas or provides you with help to get them eating more.

When they go into school in floods of tears clinging to you and you worry and stress through the day if they have settled, are they ok, will the school be honest with how they were, will they forgive and are they happy.

Buying new clothes entails turning the items inside out to see how they will feel to them and having to hunt out clothes that don’t have seams, and when they decide they like something and will wear it happily bulk buying them in every size to ensure that your child will go out with clothes and shoes on.

When you go somewhere they have enjoyed having your fingers tightly crossed so that nothing has changed and hoping it will be really quiet so that they can enjoy it and it won’t start a meltdown.

Will they ever make friends and have a proper friendship with even just one person. Be able to go to the cinema together, out for a walk, lunch, or even just have a conversation together.

How are you going to be able to cope with meltdowns when they are older if they are still lashing out, head butting, and how will I prevent them from self harming when they head butt the walls, hit themselves, scrab at their body, pull thier face..

Would someone else be looking after them better and providing them with better chances and helping them more than you are.

What happens if you end up in hospital and have to spend time there, how will they cope, who will look after them because no one knows them like you do and an even bigger worry.. what happens when you die, who will care for them like you do, love them and understand them like you.

The constant fight for help from services which are meant to want to help but show you the exact opposite.

The need to cuddle and protect them when they are sad, overloaded, having a meltdown but infact it just makes them worse and the only thing you can do is watch and ensure that they are safe and are not harming themselves.

Ignoring the stares, tuts and comments made when out in public and your child is having a meltdown and you can’t do anything to help them or stop it.

And the over whelming feeling of continuous guilt.

-WeeOhana

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Leaps & Bounds of progress!

These past few months Dylan has been slowly progressing, but over the past month it seems to all be coming together. We have many words now which is absolutely incredible seeing as every time he has been seen by his pediatrican we kept getting reminded that not all autistic children talk and not to get our hopes up. He can request things like his iPad, juice etc, it’s amazing to see and I have got a lot of hope for the future now and I’m sure his language skills will continue to develop and maybe one day we will be able to have a conversation with us! It gives us a lot of hope and really lifts spirits.

In school they have started to use pecs to help him move from one place to the next, his anxiety is brought down a lot with these pictures and I am now running about like crazy taking pictures of everywhere we go so that I can use them at home with him too. I am hoping it will help when out and about with him so that we can keep him calm and hopefully enjoying what we are doing rather than worrying about what is to come next.

He is starting to try new foods, well he has licked a yogurt and they are trying to encourage him to try new things in school via pictures and are going to get me some to try at home with him, which is a really exciting prospect. Dylan’s eating has always been a worry for me, as much as the dietician says it is fine because he isn’t losing weight it cannot be healthy for him and is not ideal. I would love to be able to just pick him up something when out and about but unfortunately at this moment in time that isn’t really attainable as he doesn’t eat very much at all especially for dinners and lunch. Maybe one day he will eat a sandwich, now that would be incredible!

He has also started to interact a lot more with Amellia and the other children he knows. He will ask them for races using his makaton that he is starting to pick up and what is even more amazing is that the kids around us are so great too him. They understand him really well and it is so great to see them running around together and enjoying each other’s company. Something again I wasn’t sure I would ever get to experience with him.

Something he has started to really enjoy also is playing mario, he is learning how to control him and enjoys walking him around the map. Before he just used to hold the button and laugh as he fell off the edge, which is funny.. but finding something he really enjoys doing and playing is great!

Obviously he still has his hard times, but I totally adore him and he is simply wonderful. I will continue to encourage his growth and I truly believe give a child the tools and encouragement they need and they will progress in there own time!