1

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

0

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!

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!

5

My child, my choice.

With Dylan starting school recently I have had a lot of people giving me their opinions on something which I feel strongly about and tell them before they even start with the back and forth.

My child, my choice.

I don’t agree with putting my child on a bus to and from schools. He’s three ffs. I wouldn’t put a neurotypical child on a bus even if it was a specific one for the school so I’m defiantly not putting my neurodivergent child on one.

People argue that it gives me more time, but I would rather do what is best for my child than what is best for me. I’m pretty sure that’s normal for parents.

I hear things like oh but everyone else does it.. I’m not a sheep thanks very much, I think for myself and what benefits my family the best. Also, just because everyone else does it does not mean it is right. Many things are questionable that “everyone’s does.

Not long till he starts nursery now, where did the time go!? They grow up far too fast and with them both in school now I know the years will fly by even faster 😦

13

Final Diagnosis Appointment.

When I got the letter through the door with the date for Dylan’s final part of his diagnosis I was overwhelmed with emotions. I cried instantly, with happiness that we finally had got a date after waiting all this time, with dread about it being final and what ifs. Thankfully it was for the next week so I didn’t have too long to wait with all these emotions flying around in my head.

I had asked on a local autism group on Facebook about what I should expect as I was pretty clueless to what would happen and wanted to at least be a little bit prepared, and I’m so glad I did ask. I was told what to expect and that the place I was going to was pretty run down and when we pulled up to it I couldn’t believe quite how run down it was. We managed to get parked in the car park which had very few spaces with the majority full and had a little pep talk about how it would be OK whatever happened.

Before we got into the building Dylan was already pretty unsettled and I was worried as had heard from a few friends that if your child isn’t compliant they will rearrange another date for you to come up and get them seen again, which obviously I really didn’t want to happen.
We were met by two lovely ladies who showed us to a waiting room which had a few toys in, typically all the ones Dylan picked up or showed a little interest in didn’t have working batteries in so this annoyed him more and me. I thought they would have ensured that the majority did have batteries considering that they are fully aware of the children who come to the clinic sometimes have a low-level of understanding. Anyway..

After waiting for about 5 minutes they came and got us and told us they would take Dylan into a room which we could see into through a 2 way mirror but that if he wouldn’t settle for them they would get me to come into the room with them and see if it helped. While we sat and watched they tried to get Dylan to engage in play with a shape sorter and some sensory toys but he just kept putting them back where they came from and was getting more and more wound up, until they got a pop up toy out. He loves pop up toys so this settled him a little bit until they tried to take it away and he just kept hugging it close to himself  and throwing away any other toys they offered him. They then asked me to come in to see if this would help settle him after having him in for 5 minutes, I looked at Ad and said I think we will have to come back..

I went in and he climbed onto my lap and was still pretty distressed by everything that was going on, one of the ladies even tried to tempt him with Play-Doh which is usually one of his favourite things but he just got madder. I had been in the room less than ten minutes and she said, “we have enough evidence now, if you want to go back out and wait” I was shocked but also super pleased that despite him not playing ball they managed to get all the information they needed and in such a short amount of time.

He was not for settling after all that had just happened and being pushed to try to settle, but the ladies came back in quickly enough and told us that they had enough evidence today to give Dylan an autism diagnosis, after this Ad took Dylan out of the room to try and calm him and so that I could chat to her and hear all the information she had to offer.

They offered for us to come back to chat without Dylan but we decided it was best if they told me then pass the information on because let’s be honest the place was a 45 min drive away, I don’t know anyone I could leave Dylan with for that length of time.

They have referred us to get support from others, are going to provide us with a few courses to go on so that we can learn as much as possible about everything that is going on and will send the report out with all the information about what they had found today in approx 6 weeks.
We then headed back to the car and Dylan calmed down when he was back in a familiar place safe in his car seat.

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2

Music Therapy!

Recently Dylan started music therapy and it is amazing, before he had his first one I wasn’t really sure what to expect as I hadn’t really heard much about it. I am always keen to try new things, especially when I really think he will enjoy it. Dylan has always loved music, if a fast song is on he will go crazy and shake himself really fast and if it’s a slow song he will move slowly, it’s really funny and adorable to watch!

He has now had 3 weeks of music therapy and has really enjoyed it, I am learning a lot of new things to do with him to help encourage his speech and interaction which is obviously  amazing and not something I really expected to come from music therapy.

 

She brings along a whole bag full of instruments, and starts by playing a hello song on her guitar, then she asks if he would like to play a certain instrument and generally he jumps about really excitedly. Then when he is playing the instrument she then sings another song to try to get him to play when she stops and she will also then go at his speed, for example if he is to play fast, she will play fast on the guitar and so forth.
Then after doing that for a while she then gets Dylan to choose another instrument and she will play a beat and encourage Dylan to copy this beat and then copy the beat he does. It is all about give and take, if he copies you then you copy him.
Other things that she also does is sing songs that he knows and stopping at random unexpected words to try to encourage him to join in and say the missing word, sing consonant sounds together to try and get him to copy and again then copying what he says as well.

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While playing these instruments Dylan is also feeling a lot of different textures, Dylan really struggles with many sensory things in his day-to-day life; for example he cannot wear jeans, certain t-shirts and is extremely fussy with his foods. She is also going to add more textures and things into the music therapy like cooked pasta for example to encourage him to touch it when he is having lots of fun and then hopefully after a few times he will touch it in other situations too

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It is a costly therapy but it is one he is really getting a lot out of so we will obviously continue with it, I cannot wait to see what other ideas she gives me to use outside of music therapy and to watch Dylan progress week after week.

-WeeOhana