4

Don’t dwell…

Must Not Dwell.. (1)

I have started 2018 with a bang and completed my online course that I singed up too to extended my knowledge on autism with a pretty impressive 100% on all modules.
I am pretty chuffed and it sure has given me a nice little boost of pride and self-confidence to start the year with.

The course I completed was compiled of these modules;

  • Understanding autism
  • Autism and communication
  • Autism and sensory experience
  • Autism, stress and anxiety
  • Autism: supporting families

I found out some facts from doing this course that I wasn’t aware of, but the majority of it I knew from living daily with an autistic child.
I think this course would be beneficial for people with very minimal knowledge on autism, but if like me you live with autism in your life daily then it probably wont provide you with much extra.

I learnt some facts that really shocked me and admittedly scared me too.
Did you know that only 15% of autistic people are in full-time employment? 75% of the population are in full time employment.
I mean.. how crazy is that, and how does that give me any hope for Dylan. It seems absolutely bizarre that the percentage is so low and really unsettling for parents of autistic children.

At least 1 in 3 autistic adults are dealing with severe mental health struggles due to lack of support. 70% of autistic adults believe they are not getting the help from social services that they require and they also said that would feel a lot less isolated if they were given the support they need and what I believe to rightfully deserve.

It’s crazy, it really is.
The future scares me, it really does. Its something I try to not think about too often because it worries me, really worries me.
What does it hold for us, how well will we cope, how we can get the best for Dylan possible and all while keeping the balance of family life right too… it’s a lot to think of and far too much to dwell on.

-WeeOhana-

2

3rd Birthday!

On Saturday Dylan turned three.
I mean how fast was that? It feels like he was only just a tiny little newborn, though in other ways it feels like it has gone so slow with all the constant waiting for appointments.

Dylan spent his day doing exactly what he wanted too do, what better way to spend your birthday?
Amellia was awake first and came and lay in our bed with us until Dylan was awake and ready to go downstairs. Thankfully we didn’t have to wait too long before he woke up but it gave me enough time to try and explain to Amellia that he wouldn’t be eager to unwrap his presents like she is and to let him look at them in his own time.

We weren’t really sure what to expect with the unwrapping thing and how he would even react to the whole day. We only wrapped a few of his presents to try and help him not get too overwhelmed,. With it being impossible to explain to him that it was his birthday or what a birthday was we couldn’t prepare him for what to expect which is the same for everything that we do with him and one of the reasons why he struggles so much.
With it being his birthday and him having no clue and no excitement its a pretty tough hit to take as a parent. You always think of your children loving there birthdays and having the best day ever, but to Dylan this was just like any other day with a few new toys.

When we got downstairs he headed straight for the Elmo and cookie monster teddies that we had got him as he totally adores sesame street at the moment and he has always loves teddies of programs that he loves. He would have played with these all day but Amellia was desperate for him to open his presents from family over in Wales, thankfully I was able to distract her for a little while so that Dylan could have a little play, but she was so excited that it didn’t last too long.

With a little bit of encouragement and a helping hand from Amellia he got his presents unwrapped and had lots of fun looking at what he had got.


After we had had breakfast I then took Amellia out to play in the snow so that Dylan could have a look at his presents by himself and enjoy them slowly while she wasted some of her never ending energy racing about in the snow and getting some quality time with myself too.

After we had defrosted a little inside it was time for grandparents to come over. We enjoyed some cake, more presents and chat. Amellia then took her grampy back outside to throw snowballs and go sledding. She really loves the snow. It also meant that the house was quieter again for Dylan to help him regulate himself.

After everyone then had left we had treated the kiddies to McDonalds for Dylans birthday dinner as this is something that he actually eats. Madness right, but apparently no one makes chips like McDonalds.
Amellia & Adrian headed back outside for a last play in the snow before bed and then as if by some miracle Dylan took my hand and stood by the door. Now if you read my recent post you will understand why this was a huge step, so I very quickly got his shoes & coat on and mine then opened the door. I expected him to slam the door right away but wanted to be prepared just in-case.
He took my hand and marched off down the street!!
I was over the moon, I mean what he has been like recently about going outside and then he does this it was incredible! He wanted to stay outside all evening though, so we let him walk round the block a few times and I headed in while Adrian did another lap so that I could make inside even more exciting that out!
After a little fuss he came inside happily and watched Storybots while playing with some goo.

After this real emotional high for us and thinking the day had gone pretty well Dylan then quickly changed. After getting his pjs on he had a huge meltdown. Amellia was trying so hard giving him his favourite toys and everything she could think he would like but every time he was just lashing out at her, so Adrian took her upstairs before she ended up hurt and we could see how hard she was trying to help him and was getting frustrated that she couldn’t help.
He wanted me to stand up, but not touch him or be near him so I sat on the sofa and he was pulling me back up. I tried everything I could think of and in the end I just kept putting him back on the matt we have so to prevent him from hurting himself when he was head banging.
It was getting to the stage where I was hoping the snow would disappear so I could take him for a drive as I just had no idea what else to try. I ended up just sorting the room out around him so he could still see me and I was stood up because me sitting for some reason was really annoying him and then the next thing I knew he had passed out he had screamed so much.

Poor boy, it was horrible.
The day had just caught up with him and was too much.
-WeeOhana

0

DIS – Week 6 – Last 1

I went along with a little sadness to Dylan’s final DIS appointment, the past six weeks seem to have flown by and with this being the last one it brought along many feelings.

I was feeling pretty annoyed that they now don’t offer two sets of this and only do the one, I wish they would still do two because Dylan really showed lots of progress while attending this and I think if it was for a longer course I would then also see the benefits, progress and advancements outside of the DIS room too.
I was also upset because Dylan had really enjoyed this and had really started to enjoy going into the children’s centre and I know next time we go in he will lose the plot.
Full of happiness and being proud of Dylan too because he has coped so well, grown to love going and had came so far with her.

The speech therapist came along too see him at the last one as she is the one who had referred us on to the DIS but had told us not too expect too much. After the second one I was thinking that she was right and he wouldn’t get too far along the course before we deemed it a waste of time. She came in about 5 minutes after we had got started and she said she just couldn’t believe the difference and that it was like she was with a completely different child in the room. Because she has seen that routine is really key for Dylan she is going to try and get a regular speech and language slot for him which would be fantastic as I think this would really help him.

DIS was great and I would advise you if you have been offered it to give it a shot no matter how you expect it to go. We really didn’t think Dylan was going to be ready for it at all, but he showed us that routine really is key to everything he does.

(Sorry this post is coming to you pretty long after we went to our last DIS, but we have had lots of appointments recently and I haven’t really been coping to well either, but will update you on everything in the next few blog posts.)

What is DIS?
DIS Week 1
DIS Week 2
DIS Week 3
DIS Week 4
DIS Week 5

-WeeOhana

 

 

46

ToddleBike2 Review, Discount Code & Giveaway!

Many autistic children have poor motor skills and this makes many things challenging that you wouldn’t necessarily think about unless you were in the situation.
When I was offered the chance to try out the ToddleBike2 for Dylan I was really excited to see what he would make of it. The ToddleBike2 is really like a step before the very popular balance bikes you can get, it has four wheels and teaches the very basics of using a bike before having to worry about keeping the bike upright too.

The ToddleBike2 is aimed at children aged 18-36 months but can really be used by a lot large range of ages, Amellia loves Dylans ToddleBike2 and she is six years old! It has been tested up the weight of 100kg so your older ones can enjoy it too, without having to worry that it will break and it also has a 3 year guarantee just in case something is to happen.

IMG_0727.jpgThe ToddleBike2 is also extremely light and Dylan really enjoyed carrying it about for the first while and inspecting it. It took a little while of him carrying it about and playing with the wheels before he tried to sit on it.
With it only weighing 0.8kg it is really light to carry and would be perfect for taking out on walks and then when little one has had enough it is easily carrier for a parent!
We are going to keep to using it inside for longer for Dylan to grow his confidence on it but I know that it will be used a lot next summer when Amellia is out on her bike too!

IMG_1082Dylan started of sitting on it sideways and trying to shuffle along on the ToddleBike2 and really wasn’t sure how he was meant to make it move.

After some demonstration from his beloved Elmo and pushing Elmo about he then hoped on board himself and followed suit!

Look at that wonderful smile! Once he had is sussed he absolutely loved it, was on it all day and every time I put it into the kitchen he is bringing it back into the living room.
I really can’t wait to head out when Dylan is a bit more aware of his surroundings and the ToddleBike2 will go on many different surfaces with its lovely smooth wheels.

I totally love this ToddleBike2, when it arrived I was surprised at how small it was but do not let its size put you off. In fact, the size & how light it is really adds to just how brilliant this ToddleBike2 is. Another thing which I cannot believe is the little price tag to go along with how wonderful this bike is! It costs £23.95 and has free shipping to the UK & Ireland. Though if you aren’t lucky enough to win the giveaway I also have a 10% discount code to use here, the code is BLOG17!

Here is your chance to win a ToddleBike2 for your little one or a little one that you may know! You have to be in UK & Ireland to enter and you will have the choice of pink, red or blue. This will run until the 29th of November, Good Luck!!

 a Rafflecopter giveaway

3

DIS – Week 5

Unfortunately after the week break for Halloween Dylan wasn’t as cooperative at his 5th DIS as he had grown to be in the previous ones.
He went in great, but he found it very difficult moving from the sand table which is what he always does first. After a little fussing and lashing out he then moved on to the next task which was puzzles and a shape shorter which is something that he really enjoys doing. He completed them all and after a gentle reminder to put them in the done box he did this successfully after every one he completed. He enjoyed doing the tasks at this table so much he tried to get the ones out from underneath for the next child. It was then time for the water tray.

IMG_0564.jpgAfter a very enjoyable time playing in the water tray it was then time to move onto the next table. This time thankfully he moved over great and took the object with him to match with the other object,he sat down nicely as he knew that he got to play in the lentils here and he really enjoys that. First of all she got him to do some letter matching and was very surprised that he could do this, though I had told her from the first one that numbers and letters were his up most favourite thing and he really enjoys. He then got very distressed when having to move on from matching letters but we managed to get him settled again by playing with a balloon and he then completed all the tasks at this table.

IMG_0687.jpgIt was then over to the carpet to play with the trains before heading home. I then chatted with the lovely lady while he was playing for a short while, we both agreed that the weeks have gone so fast and she said that she agrees with everything that they have said during the CDC clinics. She said we will discuss things further next week and hopes to have her report written up by then which would be great.

Lets hope the last ones goes smoothly and the speech therapist gets a chance to pop along and see how much he has improved with once a week so that she will then hopefully see him more often.

What is DIS?
DIS- Week 1
DIS- Week 2
DIS- Week 3
DIS- Week 4
– WeeOhana

6

Think about you.

Trying to keep on top of your own mental health is really vital in life.
I feel that it is really essential to try to keep a check on yourself whenever you have a child with additional needs.
It does completely take over on all of your thinking, planning, time and very quickly you can get very worn down.

You need to stop, breath and think about you.
How are you feeling?
– If you aren’t sure, talk to someone. A friend, partner, someone who understands. If you regularly feel low, that you can’t take much more contact your GP for a chat.

When is the last time you did something for you?
– Have you managed to have some time to yourself or with other adults to actually relax?
I don’t mean just tidying when the kids have gone to bed, having a coffee, I mean something properly for you. Make sure to visit your friends, get out of the house and go for a walk, go to the shops and only look at things for you, do something that you enjoy and try to make it a regular thing!

Are you just holding on, or are you standing up tall? 
– 
Standing up tall? Fantastic! Though if you are just holding on, feel like you are at the edge, stretched too your limit, at the edge. Seek help. With kids with additional needs you never know what is around the corner and you don’t want it to be the thing to tip you over.
Your child/ren need you. More so than others, if you won’t fight to get them what they need, who will? GPs are very understanding and supportive. Don’t make an appointment for a few weeks down the line, take the emergency appointment and get seen that day. You need it.

Yes, you may have been here before and got back on your feet, and forgotten it for a while, but it will come back when you least expect it.
Please don’t feel embarrassed, scared, afraid, just make that phone call.
Your family and friends may tell you that it will all be ok and that you are ok, but you have to feel it too, and I’m sure if you are in this position you do not feel it.
Them shrugging off what you tell them, ignoring it, or just replying with the generic “you will be ok.” That is not enough.
Go to the doctor, talk it through with a professional and then tell your family and friends you are getting help and you would like their support.

Sometimes family and friends are so used to seeing your strong exterior, your fight, your smile and get up and go that they can’t see how much you really are struggling deep down.

You can do this.
Support is out there.
Don’t be fobbed off.
Your family need you.