6

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

9

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!

6

Airplane Bags!

This time next week we are going to be in Disney World! I cannot wait, its a big secret from little miss and she hasn’t got a clue. She is in for the most amazing shock! She is always asking to go down and spend time with my parents so we are going to tell her that we are going down to spend 2 weeks with them and then let my dad tell her that we are all going away to Disney, she is literally going to lose it!
I’m pretty nervous about the 9 hour flight.. Dylan should be ok once he has got used to the noise as he will happily sit and watch his Ipad, Amellia doesn’t like staying still for more than five minutes. It’s going to be an experience.. Ad made a joke about buying everyone on the flight a pair of ear plugs and handing them out at the start, I’m thinking maybe he actually should, lol!
I thought I’d share a little post of what I have in there bags for on the airplane, maybe give you some ideas for if you go traveling with little people!

Fully charged IPads with movies and YouTube videos that they know and love downloaded, new apps put on but also the ones that they use already, especially for Dylan. He is happier doing things that he is used to and knows how to do. I’ll do another post shortly with the apps he uses now, but here is the apps he loved last year and the majority of these are still played regularly. To go with the IPads I have also got two power packs so that we can recharge them when the kids hopefully sleep on the flight..

Colourings books with twistable crayons have been added too, if you haven’t seen the twistable crayons before they are amazing! We love them, so much easier than having to sharpen crayons etc. Amellia has got one of the Top Model books, they are full of outlines of people who you then draw clothes/hair etc onto them and Dylan has one full of Thomas the Tank engines!

Stickers, stickers and more stickers. Both of the kiddies love stickers so I have got a selection of different ones and have done that awesome mum hack of peeling off the outsides of them so the stickers come off easily without the kids getting angry at them and ending up ripping the stickers which then ends in tears. I have got them a book of blank pages each to stick them onto and to draw pictures on too.

Reading books, more for Dylan than Amellia as he loves reading and looking at books. I have got him an alphabet book, number one, shapes & colours. He has lots of alphabet toys but I didn’t want to bring them on the plane with us because if he gets mad and throws it then we will have to get everyone to hunt to find the letters to calm him, which would be pretty awkward! Amellia has got a reading book about Tinkerbell to keep her going.

I got a little set of play doh for Amellia to have on the plane, but not one for Dylan because he really enjoys eating and licking play doh.. yep he wont eat food but he just loves that horrible play doh taste. Typical. I have also got Amellia a Disney 3DS game so will be putting my DS in her bag for her to use and hopefully keep her entertained for a little while.

Finally i have put a few blind bags in as these bring a lot of excitement to little ones and entertainment while they play with them, oh and also headphones and noise cancelling headphones. Dylan currently wont wear noise cancelling headphones but I am thinking that if we are on the plane and the noise is really annoying him and wont just go away hopefully he will realise they help, along with favourite teddies for comfort!

What do you take with you on the plane? Any other things you think would keep my pair entertained?!

-WeeOhana

8

Autism Assessment – Stage 2

Stage 1 of the autism assessment is where you are seen by a pediatrician who then refers you on to the next stage if they agree with the concerns and think that an autism diagnosis is necessary.
We got referred to stage two the third week of December which was when Dylan turned three. Unfortunately they cannot refer you to stage two until the child is three, which has made this a very long and drawn out process for us because Dylan’s autism has been so obvious since a very young age. Thankfully though for the stage two we only had to wait a few weeks.
I had heard about the stage two assessment from other people who had already done it and I was very nervous, I was expecting to leave in tears.
Basically its a parent only interview to get as much information about your child from birth to now. All the milestones they hit and which ones they struggled to reach or have yet to reach.

When we went in and as we were sitting waiting I was getting so anxious, and was really worrying about Dylan. When you go to this appointment you are not allowed to bring your child with you so I really struggled leaving Dylan. I can count on one hand the amount of times I have left him with someone bar my husband.
After a few comments made after we got back, I wont be leaving him with them again.

A lady then came to get us from the waiting room and she was very friendly and calming. She told us all about what would be happening and why we were there etc and asked us if we were happy to start and away we went.
At the start she asked us a lot about how Dylan was as a baby, how was the pregnancy, birth, what was he like, did he sleep well, did he hit his milestones for walking, smiling, laughing and what was he like when we weaned him. As I was answering them I was thinking to myself how obvious it was even from such a young age that Dylan was autistic, he smiled & laughed very late, weaning was hell food it still a huge issue with Dylan, I can’t remember how he slept.. but I think it was ok..I can’t remember being too exhausted? (haha!)
She then went on to ask us about how he is now, how he communicates, copes with change, diet, behaviour, friendships, understanding, dislikes and all that type of thing and after all the questions about his struggles etc. and then to end the bit about his development she then asked about his strengths too and his like.
I’ll not answer these all for you.. otherwise this blog post will end up extremely long.
Obviously it isn’t easy at all especially on the mind and your mental state to be constantly thinking about all of the negative things, what your child cannot do and what they really struggle with but I think that I now know that you have to give all this information and think about it that I have grown a little harder shell when being asked and I just answer it the best I can because I know I have too to ensure that he gets the help and care he requires and deserves.

She then asks about your mental health and if anyone in your family has any mental health issues, diagnosis etc and then after that she just has a little chat.
She told us that usually they ask how you will feel if your child does not get a diagnosis but she said that she wouldn’t bother asking us that questions because it is very obvious that he is autistic. She asked us how we think we will feel when we do get the official diagnosis and I think I am going to struggle.

I worked in a special needs school with many kids who have autism when I was younger and many who I have encountered think that this will make it very easy for me to accept and to just carry on with. They seem to forget that these children I worked with, they weren’t my own. I went home at the end of the day and so did they, I wasn’t emotionally connected to them like I am Dylan, my own son. Personally, I think it makes it a lot harder for me. I have experienced how autism affects children as they grow up, I know the struggles and what the future may bring.

We now have another 6-9 month wait for when they will see Dylan and give us an official diagnosis and get it over and done with then onto the next hurdle.
The lady wrote at the top of our one that we will take any cancellations and we just want to get the official diagnosis over and done with so that we can move onto the next part of the greving process.

-WeeOhana

 

3

Acceptance & Denial.

Coming to

I think it is a very common thing to do, to doubt what you have been told about your children. Especially when you are trying to come to terms with it.
I go through phases where I think to myself that there is no way that Dylan is Autistic. I mean, he is my perfect, handsome wonderful, clever little boy who I totally adore, obviously. This is something that will never change and I will always feel all of these feelings and many, many more about him. He is my son, my little buddy who I will always love with all of my heart.
It is hard to accept that your child has anything wrong with them, something that changes how they view the world and how the world will view them. Something that you as their parent can’t fix with love, medicine, therapy, or anything at all. Yes you can help make it all a little more bearable for them and show them how they can ‘fit’ into the world and the supposed things they are meant to feel, enjoy and like but is that really helping them when you are then trying to make them conform to what we view as ‘normality’?
I have always been one for trying to join Dylan in his world, copying him in things he enjoys, if I enter his world then he may want to join me in mine for a bit too, but I am not for forcing him to conform. It’s all about give and take. Even in a relationship with my husband; I don’t force him to like everything that I do, and likewise I don’t like all that he does but we compromise so that everyone is happy and I’m sure that is the same for you, right? So now explain why should I try to force my son to like all these expected things rather than letting him enjoy what makes him happy and his own little self?
IMG_1947.jpgAfter doubting it all I generally very quickly get a wake up call and brought back from my safe haven. Sometimes this happens so abruptly that it can take me weeks and months to recover emotionally from.
I always feel that I am very in denial about how much Dylan’s autism actually affects him. I am with him 24/7 so Dylan’s quirks and ways are all that I know now. We have all got used to this and the how Dylan is, but when you see other children his age it surely gives you a huge wake up call to just how much it does affect him.
Its made much more obvious about how much it has effected his development when around other children his age. You see them chatting away, running to mummy and daddy to ask them for help or to show them what they are doing, showing off their new toys to their friends, playing together and so many more things that I don’t process as things that Dylan struggles with until they are right in front of me and made so blatantly obvious that these are things he should be doing too.
Amellia finds it very difficult to process when we are around children his age and she has been made aware they are the same age. When we get home there will be lots of questions of when will Dylan talk, when will he want to have a sleep over in her room, when will he want to play Lego with her and not just knock the tower over and many, many more questions. I answer them as truthfully as I can, Amellia is incredible with Dylan and totally adores him but sometimes people forget that she is only six and obviously this is very hard for her to process and understand too.
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I think the going back and forth between thinking that he clearly is fine and then to realisation that no he obviously is autistic is just a way of my head trying to get round it, my head trying to accept it all and come to terms.

-WeeOhana

1

Growing my Knowledge

Soon I am going to sign-up to do some online-training and I’m rather excited for it!
I have been hunting online for a course that will help to extend my knowledge and understanding on Autism, and I have finally found one that sounds fantastic!
What I really like about this course is that is has been made and written by people who are on the autism spectrum.  This too me means that it will have an even better insight into autism than the courses written by someone who isn’t on the autistic spectrum.

The course is complied of five modules which are:

  • Understanding autism
  • Autism and communication
  • Autism and sensory experience
  • Autism, stress and anxiety
  • Autism: supporting families

I’m hoping to learn many things from this course that will enable me to understand Dylan a lot more and ensure that I provide him with the best opportunities that I can.

Once I have completed this course I will receive a Continued Professional Development certificate which will be a great addition to my qualifications!
I can’t wait to share with you how I get on with this course and to help broaden your knowledge about autism while I broaden my own!

This course was founded by The National Autistic Society! It is also a great website to pop along too to find out lots of information out about Autism!

3

A Voice! <3

Super Proud, emotional, over-joyed, amazed, the list goes on!
Today I have heard my little mans voice for the first time! He is starting to learn his colours and loves the alphabet. He knows the sounds of nearly all of the letters in the alphabet, but today he started to say some colours! Its the first glimpse we have heard of his voice forming words.

This sort of thing really makes the hard times seem a little less tough. This isn’t easy, infact; this is the toughest thing I have ever done in my life.

 I don’t know how I am doing it and keeping a smile on my face. Often people say to me “I don’t know how you are doing this?” I’m never quite sure how to reply to that.. because I’m not sure how I’m doing it. Honestly, I’m going with the flow, doing my best I can for him to help him and encourage him, I try to enter his world rather than forcing him to join ours. I do it, because I am his mum and if I didn’t, then who else would, I do it because I love him, because he is my son, because he deserves a happy life as much as you and I do, because he is clever, funny, handsome, adorable and perfect in every way to me.

-WeeOhana x