10

The start of a new journey!

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.

-WeeOhana

 

7

My handsome little chap.

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

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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!

6

I hope it gets easier..

Thursday was the first day for both my kiddies and they couldn’t have had more opposite experiences to the whole school thing.
Amellia absolutely loves her new school, on Friday morning she was dancing in my car with excitement before going in (which you may have seen on my insta story) and she has said that she wishes the weekend was only one day so she didn’t have to wait to go back to school. I just hope she continues to love her new school, they are offering her so much support and that is bound to help her settle and enjoy school more.

Dylans experience was the complete opposite. When we were walking down the hallway to his classroom he was fine and waited for his friend to catch up with him and I was starting to think it was going to go really well and he was going to love it, but as soon as we turned to walk through the door he would not go through and climbed up me as quick as possible while spontaneously exploding.
I carried him in and tried showing him some of the fun things they had out to play; sand, colouring, paint but nothing would settle him so they suggested putting him outside into the playground to see what he made of that. While they hurried him outside they told me to go. . as heart-breaking and as much as I really didn’t want to leave I couldn’t just ignore what they told me because in reality they have done this before and know what usually works best.
The parents then had a wee meeting to get to know some of the staff in the school and what they could do and provide for the children. After 45 minutes one of the classroom assistants came along to tell me that Dylan was settling for 5 minutes, remembering and looking for me and then settling again. After another 15 minutes they then brought the kids back to us and it was time to go home. As soon as he saw me he just kept repeating “mummys car” over and over again, he was more than ready to go home.

The next morning I woke up too carnage. Dylan had decided that doing a bit of poo art was the right thing to do, normally he shouts in the morning which wakes me up but he decided not to alert me and have a bit of a dirty protest and wake me with the smell. It was absolutely vile. I had my fingers crossed that the smell was going to be linked to something secured in his nappy but no such luck. I’m still scrubbing at the stains that refuse to budge! As soon as he saw me he started shouting “no school” over and over and over again.
I got him cleaned up, brought him downstairs and calmed him down. Amellia went to school dancing and singing then it was time to take him to school. After getting part of his uniform on I gave up, imagine wrestling with a alligator to put clothes on, Yeahh.. that’s why I gave up after he was decent.
The whole drive to the school he was going crazy in the back of the car, trying to undress, banging his head, hitting his legs etc.. I was waiting for him to fall asleep he was getting that worked up, but he didn’t.
Pulling into the carpark, walking to the class he was just going absolutely berserk. I had given myself a pep talk that it would be ok, they know what they are doing.. but it didn’t work.
They more or less had to remove him from me finger by finger. He was clinging on for dear life. It was absolutely horrendous. I just wanted to scoop him up and run away and never look back. I ended up in tears as they took him from me, it was such a horrible experience.
They came down to the room where we were meeting other members of staff after 40ish mins and said that he was doing the same as last time settling and then remembering again. This time at least when they brought him back to me he didn’t seem quiet as distressed but was busy shouting bye to everyone because he just wanted to be gone. He fell asleep as soon as he got into my car, which is only something he does when he is really worked up so that sort of summed up the day for me.

On Monday they are going to see how he gets on and have said that they will text/call me when they need me to pick him up. I’ll be sure to let you know how the next week goes.. at least on Monday I can sing to them “It’s my birthday, I can cry if I want too” so I wont look quite so bizarre crumbling into a heap on the ground in tears.. maybe that will make me look crazier actually.. oh well.

Wish me luck!