0

Softplay Success!

Finding a new place that Dylan thoroughly enjoys and caters to his needs is always a bit of a struggle and a huge success when we do. Recently we found a place that ticks all of the boxes and I hope that it will be a place your children can enjoy too if you live or are visiting the area.

When Ad is off work and able to go places with us I like to go somewhere new. It means that there are two sets of hands in case things don’t go our way and another set of eyes to keep a close watch while Dylan explores! It also means that if things don’t go the right way it is someone to talk to while I bundle him up to leave, help me ignore the judging eyes and grab the bags.

We headed to a soft play called Indiana Land and we couldn’t have found a better place to spend some time together! We paid £2.50 to get in, which is a bargain for soft play. There was only a few other children there, so nice and quiet for Dylan’s first time exploring.

IMG_3960

He was settled from the moment we got in and couldn’t wait to get exploring. It has a nice amount of empty space which gave lots of room for running around and some great slides, rope bridges, obstacles and a ball pit. Dylan really enjoys open space because when you go to a soft play or even a park he finds it very overwhelming trying to decide what to go on. He loved just being able to running without having to make any decisions immediately. He then took my hand and wanted me to go exploring with him. Which many soft play places don’t like, so I was really pleased that they didn’t mind me going on with him to help him familiarise and get used to everything there was to offer.

After a while it was obvious that he was getting overstimulated from all the running, jumping, sliding and just having a good time. Ad then spotted a sensory room!
It had a passcode on the door so we asked the lovely workers at the reception if we could go in and they happily opened it. Inside it was amazing, big bean bags to relax on, ear defenders, several different light features that you could change the colour on, timers and a fiddle board.

 

I really liked that it had a passcode because it meant that others couldn’t just come in and out while he was having his chill out time before heading out to run around again.
I’ve never seen a sensory room at a soft play before so this really is such an inclusive place.

Highly recommend here if you live around or are visiting the area especially for parents with ones on the spectrum/sensory needs etc as it’s a struggle to find places that cater to them and this place is perfect!

The only thing that would worry me about going on the weekends would be that the freefall may be open. It was locked when we were there as it was during the terrific tots time which was a big relief if it was open and Dylan took a notion to go down it we would have probably had to leave as once Dylan gets an idea in his head it is pretty impossible to distract him.

-WeeOhana

 

 

2

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.

B2CF467F-5FF3-4094-8A6D-9D9BBEA41B7D

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.

img_7949

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!

 

4

Sensory park!

We are always on the look out for new and exciting places to take the kids and especially ones that Dylan will enjoy and be able to roam around with as little danger present as possible. When we heard about a new soft play opening and accessible park with sensory garden we could not wait to try it out!

IMG_3622

I took him one day after school while we were waiting to pick up Amellia and thought we would be able to fit in some time at the soft play and the park. We headed into the “big house” as Dylan decided it was and went through to the soft play.
I’d heard a lot about the soft play so maybe my expectations were just set to high, but as soon as we went through the doors to the soft play Dylan did not want to be in it. His problem was that one side of the room was a big window and out of this window you could see the park. He just kept running to the window and the door which was alarmed and looked very easy to set off so I didn’t want to risk that. He was getting wound up pretty quickly that he couldn’t get out and a meltdown was just a few minutes away, so I decided scrap the soft play lets just head to the park.

IMG_3637

Now the park I hadn’t heard much about, but oh my goodness, it was absolutely amazing. It had a great climbing frame which was wide enough for wheelchairs to go up and had a rocking boat that they could go into and you rock, some big long slides that Dylan absolutely loved because he is a huge thrill seeker! A bouncy floor, swings, wheelchair swing, hopscotch, drums, giant xylophone, giant spiders web and I’m sure some other bits that have slipped my mind.

Dylan really loved the sensory garden which had all the musical things in and really enjoyed playing them and having a little dance while I played them.

We really enjoyed the park and will be making a regular trip here, I loved how brightly coloured it was because it made it all so eye catching to Dylan and I really loved how inclusive this park was for everyone. I’ve never seen a park like this before!
If you live in the area or further afield and are looking for an inclusive park I highly recommended giving this park a visit!

-WeeOhana

2

Week 1 of medication!

They decided the best medication to try Amellia on first is Equasym XL.
It is a modified release stimulant, it starts to work within 30 mins of taking it and is then out of the system in approximately 8 hours. The reason I like this medication is that she can go without at the weekends as it does not need to be built up in the system over a course of days or weeks etc.

Amellia has started off on 10mg for the first week, will be going up to 20mg for the 2nd week and then up to 30mg to see if she gets any side effects and what helps her best. At the review in 6/8 weeks we will then discuss how these past few weeks have gone and how Amellia has felt about it all.

I know I have sang there praises here before but her new school is absolutely incredible. I really hope that her P4 teacher is as supportive and amazing as her current one. she is more than willing to give all the help, advice and everything in between that she can. I think that half the battle is getting the right teacher, especially when going through the process trying to get the right dose/medicine etc.

The first week Amellia was convinced that I had got her tablets mixed up with vitamins as she saw no difference in herself which is a positive. The only side effect that seems to be here at the moment is that her sleep has been effected, she has always struggled with getting off to sleep but this has made it a lot harder.
We didn’t notice any differences at home, but it only really works for a short period of time which is when she is in school. Her teacher though came out on the first day amazed! Said that for the first time since Amellia started the school she sat and wrote her spellings out all my herself without being prompted continuously to keep going and it was legible! They certainly were making some difference, and her personality was exactly the same!

Now we are up to 20mg to see if this helps her further and if it can help her interaction with peers and to sit for that little longer to be able to do worksheets etc in school.
Fingers crossed we continue on such a positive note with this journey!

-WeeOhana

 

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

img_1615

 

 

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