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 😦

0

My favourite humans < 3

We headed out on a little walk around a really quiet area a short drive from our house.
It is somewhere we go quite often as it is very quiet, lots of space for the kids to explore and waste energy and even better is that after the walk around the forest, climbing on the trees and running through the leaves there is a lovely little park with all that you could want in it, complete with gates so Dylan can’t just dart away.
While there this time I captured some pictures which I think are some of my favourite ones that I have. I have recently bought a beautiful big photo album so I am going to make sure to print out pictures to fill it with happy memories for us all to look back on.
Something I wish I had started a long time ago but never the less, on wards and upwards with my picture printing and memory making fun!

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These three humans really have no idea how much they mean to me, they are my favourites. I would do absolutely anything for them all and can’t believe my luck ❀

 

0

Holiday!

I’ve been rather quiet on here as of recent, so here is a quick and short update as to why! I was off on the most amazing holiday in Disney World!! It was the most incredible holiday I have ever been on, and I am going to do a few posts for others who are heading over to have a bit of insight of the things there, how to get the disability pass they do and lots of others bits of advice.

What made it even more exciting was that we didn’t tell Amellia about the holiday until the day we were going. We went with my parents so we headed to there house and I told her we were just staying with them for a week so that she could get some quality time. Once we arrived I got Amellia to ask my dad what he had planned for us and he told her, she could not believe it. She asked me about 20 times “are we really?” Then my mum took her to see her and my dads suitcases and she went crazy! It was a really magical moment. They then took her over to the park while Dylan was happy pottering around the house to waste some energy before a crazy long flight!

I can’t thank my parents enough for making this holiday possible and so incredible. It was the break that I needed, seeing everyone happy, smiling, laughing and having the best time ever. Memories that we are all going to cherish forever.

Family are amazing. My family mean the world to me and I’d be lost without them.

-WeeOhana

7

Honest & Open

Something I have always found important Is being honest and open with my children at a level appropriate to there understanding.

Recently Amellia asked me where she lived when she was a baby, and I told her that we used to live with nanny & grampy when she was first born, she then went on to ask who came to the hospital with me and I told her that nanny did. She looked at me a little confused and said that daddy came with me to the hospital for Dylan.

I then told her that we met daddy when she was only a few months old and that we moved in to his house after she had turned one.

She looked up at me very seriously and I was wondering how I would answer all the questions she might have but she just said one simple sentence that just summed it all up perfectly. “Well that makes my daddy an extra special daddy then because he chose me and wanted to be my daddy”

My heart melted, she couldn’t have got it more right. πŸ’ Ad loves her and treats her just like his own, as do his wonderful parents. She has an incredible bond with them all and is totally spoilt rotten.

22

CDC Take #2

I’m really not sure how I feel right now, what thoughts are going through my head or how I’m even expected to feel. I just can’t pin it down to one feeling.. in all honesty, I’m feeling a lot of them all at once and it isn’t doing my head and heart any good at all.

We arrived 10 minutes before the appointment hoping that it would help to get Dylan settled before the appointment.. but boy was I wrong. He screamed the place down and continued to do so for the 15 minutes late that our appointment was too. The lady then came to get us and said she had heard him from when we had come in. (thanks for making us wait then!) We then went into the room with the other therapists and it all started to become very real.
When we went in Dylan was not a happy bunny, pulling us by the hand to signal he wanted to leave, screaming and standing by the door. Thankfully the speech therapist remembered that he loved pop-up toys so she brought this out to see if it would settle him. He settled for a little while then she tried to remove this to encourage him to try something else with another of the therapists there.. but he just wasn’t playing ball. He settled after a while with some coloring and posting games, typically he was very happy when it was time to leave.

As all this was going on, I was having questions thrown at me left, right and center. Well no, they were very good at making sure they didn’t talk over anyone or myself, but I think it’s because I was the one in the firing range it just felt far too much. She was asking if this was how he got on when he goes into new places, how he had improved and I told her with a smile all the improvements I had felt he had made and she half smiled and told me they were great. Unfortunately though they all veer down a very obvious path and not the path that you want your child to travel.

The first thing that we got ticked off her list of things to get sorted was an education plan. She said that she didn’t think he would cope in a mainstream school even with a 1:1. She said that she would worry about his safety and that it just wouldn’t suit him at all. So all the information for this has been sent off and we are just to await an appointment of when to go and see them for them to write-up a report.
If I was being honest with myself, I knew this was going to be the outcome. Though I was living in hope, denial and wishful thinking.

The next part did shock me, I knew in my heart and my head that he was autistic, it was blatantly obvious. She had told us at the previous appointment that what she suspected was autism but he was too young to say for sure; but she told us at this appointment that; yes it is autism and that he is severely autistic. She said that he ticks every box for classic autism. It was a shock how she described him as severe, but when you look at it from a realistic point of view, he really is. Everyday life is a real struggle for him, and clearly something he doesn’t particularly enjoy when you are taking him out of his safe spaces.

My emotions are everywhere, I have written this post still feeling numb, unsure and disconnected from my emotions, because right now I’m really not sure where they are.
Friends & family keep asking how do I feel, honestly, I really don’t know right now.
I’m trying to make it to the next day with a smile, trying to stop it from sinking in. I don’t know when it will sink it, it may be in a matter of days or months but I know when it does I wont be someone you want to be around. Well, more I wont want to be around anyone. I will hide away and more than likely my hubby will need to take time off work to help me through this.
It’s not a simple path that we are going to walk, I’m going to fall off the wagon and right now; it could be any moment.

It’s a huge thing, it’s life changing not just for Dylan, but for the whole family.

-WeeOhana