3

Amazing & almost unbelievable progress!

This medication is seriously a life changer and for all the positive reasons!

So for the first week in school they noticed improvements but since going up to the 20mg we are being blown away by the changes. She is sitting to do her spellings, numeracy and literature work with only needing a few reminders to keep on task rather than constant ones. She is actually enjoying doing her work and is coming home really proud and eager to show me what she has done and how neat her writing is, which has come on leaps and bounds! Before her writing was pretty unreadable, now you can actually read what she has wrote and I am sure that in a few more weeks time with practice her writing will get even better.

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The even huger thing is that she was seen by her physio and she has discharged her! They thought possible dyspraxia when we first went to see her paediatrician as she couldn’t do simple things like stand on one leg for any length of time or walk along a line of tape, but now she can do it all so well the physio says she is actually ahead of peers for her gross motor skills!

Her physio is just lovely and said that she was so happy to be discharging her but also didn’t want too as Amellia is such a pleasure to work with and is full of character and love. She said that she has never seen such an improvement in a child from taking the medicine and that Amellia’s ADHD must have been affecting her immensely.

The only side effect that is currently around for her is problems with getting to sleep. This is something she struggled with before but it has got worse. We have bought some relaxation tapes and she has been prescribed melatonin but I’m only going to give this to her on school nights after she has tried to get over to sleep by herself first.

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She is still 100% herself, outgoing, chatty and full of love for life but able to focus now to have a proper conversation with you. It is simply amazing and to think when the idea of ADHD was first floated I wasn’t sure about medicating due to the worry of it changing her personality, that when I said to people I was going to give it a try and they thought I was crazy.

These changes are amazing and going to help her achieve her best in life that she can! This girl is going to do big things, I can just feel it!

 

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

 

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

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. 💝 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.

7

Dietician Disappointment.

Last week we had our first appointment with the dietician. I was very excited for this appointment and couldn’t wait for some new ideas on how to encourage Dylan to eat or at least even try more things!
At the moment his diet is extremely limited  and we have tried everything that we can think of possible ways to encourage him to try other things also to drink things such as milk to ensure he is getting all the goodness he needs to grow up strong and healthy!
We haven’t had much luck at all, and he is now starting to go off things that he used to eat.

We had to weigh out and write down what he had eaten in the past three days and when it was all wrote down it hit me with how little he really did eat. Every day breakfast, lunch and dinner is exactly the same with a variation on snacks and what he has after.. but by variation I mean three different things.
We are lucky because he does drink pure orange juice and apple juice, though he wont drink anything apart from them.

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Going in with high hopes and expectations for ideas of how to encourage him to eat more, drink more and live a little healthier and coming out with no new ideas at all on anything was rather disappointing.

She told us that his diet was extremely limited and that we had to try to encourage him to eat other things. (What did she think we had been doing!?) When I asked her how we could encourage him to eat new foods she just said to keep trying what we were already trying. This was without even asking what we were trying.

Something that she did do though was prescribe him a multi-vitamin powder type idea that has all the essential vitamins and goodness in! Though she did say in her next breath that she doesn’t think he will take it, so yeah. I have my fingers crossed that he will, but her lack of confidence wasn’t the greatest.

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We learnt something that we weren’t aware of too, bread has calcium in it! Well, the Hovis best of both contains calcium! If your little one isn’t calcium this is a great way to up the intake in their diet! =]

Fingers crossed we can come up with some new ideas ourselves to try to encourage him to widen his diet a bit!
If you have any tips please let me know!! =D

-WeeOhana

 

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