1

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

7

Regression :(

Dylan has had a rather large & pretty upsetting regression recently.
He is finding anything outside of the security of his home a huge challenge.
Things Dylan used to really enjoy have become nearly impossible for him, and the hard thing is we have no idea what started this regression and what has made him so scared of being outside of the home.

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Parks have always been a little bit of a struggle for Dylan, but he used to be able to last about 15 minutes before he would start showing signs of distress and the need to leave, and this was ok. We could generally distract him and get him to stay for about 20 minutes which then meant Amellia got a nice amount of time to play too, but now its as soon as you even go into the car park.
You pull into the car park and he can see the park and this is a park that he has been to many times before so it isn’t a new environment that is setting him off and he just starts screaming and lashing around in his car seat. When you then take him out and set him down he is inconsolable, and because he doesn’t have any understanding to what you are saying to him it feels like an impossible task to help him understand that the park is fun, safe and you can enjoy it.
I can understand how this must sound crazy to most parents, I mean a child not enjoying a park it even seems crazy too me, how can my child not enjoy the park?
I have to teach my child that the park is a fun and safe place, that i itsn’t somewhere to be feared.
What makes it really hard for me to understand and to see is that if you walk to a park when he is in his pram he is trying to clamber out of his pram as is desperate to get out and play but as soon as his feet touch the ground when you get him out he just crumbles and cannot handle it.

Somewhere else that Dylan used to really enjoy going to is a little Mums & Tots that I go to that is just for children with additional needs. He used to love it, would run in most times sometimes he would have a little fuss but then would head straight to the ball pool and would spend the time happily pottering about doing whatever he fancied.
As of recent this is not the case at all. As soon as you pull into the car park he is screaming in the car and is not happy. I settle him down by letting him into the front of the car and he then pushes all the buttons and we head in.. as soon as the doors open he is straight on the floor screaming and giving off.. you would think I had taken him to a torture chamber and not a place he used to love.
Fortunately I don’t feel just as judged here as I would anywhere else. Many here understand and are very supportive, and I really think key to this all is making friends and chatting to people who are in the same situation as it really is an extremely hard one to understand unless you are in it too.

His favourite place to go used to be up to the horse where he loved getting involved with mucking out, making up the feed and just being around the horses, now he will just lay on the floor screaming and it is really horrible to watch, somewhere he used to really love and is so eager to get out of the car but as soon as he does something just stops him from being able to enjoy it.

I just wish he could tell me in some way what is going on, what is stopping him from enjoying these things and how to help because right now I feel pretty useless.

-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

 

 

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

3

Lentil Sensory Play!

Dylan’s regression in food has made me want to do a lot of sensory play with him. We do sensory play rather regularly but I want to try to do a little more and hopefully this will aid in helping him get back to at least eating the few things he used too.

Sensory play in our house always has to be with dry items, I’m hoping that if I find something dry that he really enjoys playing with I can then start to cook a few bits of it at a time and he wont notice the change. Then he will accept the change naturally without even noticing it!
Recently we did some sensory play with red split lentils. I chose these because the orange went with it being Halloween and they were bright and colourful. I added in a few objects with simple names so that I could name them to Dylan, I am going to use the same objects in all the sensory play that we do to hopefully help him learn these words.
Repetition is key!

He really enjoyed burying the objects and finding them again, his sister really enjoyed doing his sensory play with him and it really helped them to connect a little and have fun together.

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She was burying her hand and he was finding it then she was helping him to bury his hand and finding it again. I love seeing them play together, it’s a rare occurrence but a simply magical once when it happens.

-WeeOhana

17

Regression where we can’t afford one!

I thought we were getting somewhere with Dylan and his eating.
He had added pancakes and pork mince to his very short list of foods that he would actually eat happily and enjoy, though over the past few weeks slowly but surely foods what he will eat are being eliminated.

Rice Krispies are thankfully still being eaten for his breakfast unfortunately he eats his breakfast slower than a snail, but as long as he is eating something I am more than happy.
For lunch he used to enjoy some lightly buttered toast, but as of recent he just won’t eat it. I can leave it in front of him all day and he just wouldn’t touch it. I try to encourage him by taking a bite myself and making all the positives noises, I show it to him, everything… but he just won’t eat it anymore. Thankfully he will eat just plain dry bread sometimes, so his lunch has now been changed to dry bread when he will eat it.
Dinner, now this is where we are really struggling. He used to eat plain mince every dinner time and would really enjoy it, we then got able to add in pork mince and the occasional chips too! Now though… we are really struggling to get him to eat anything at all for his dinner. He has stopped eating his mince and will only eat a few chips.
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For snacks there really isn’t a great deal either. He really enjoys spicy Doritos… odd choice yes but he does really enjoy them, quavers, mini caramel squares, fruit flakes… which we have been told not to give him anymore and to cut out of his diet as they are high in sugar, I thought I was being good giving him them as they are fruit but nope. Though I will not be cutting these out of his diet or making any effort to do so, I feel that at the moment trying to cut anything out of his diet would be a really stupid thing to do seeing as it is so minimal already.  The squishy fruit pouches which we have also been told to cut out because of sugar but that also won’t be happening and then his most favourite snack and anyone that knows Dylan is sure to have seen him with one of these tightly held in his hand is a digestive biscuit! He would live off these if he could, we make sure that everywhere we go we have some with us as they really do help him settle sometimes, magic buiscuits!

We are really struggling with food at the moment and many people don’t understand how distressing this is. We often get told that well he isn’t wasting away so he is doing ok, and several things along those lines… I mean obviously he isn’t wasting away and if it ever gets to that stage we would have to seriously consider our options and do what was best for him and it is something that has crossed my mind recently with how quickly he is phasing out foods that he seemed to really enjoy.

To drink he really loves pure orange juice and thankfully doesn’t notice the supplement that we now put in it to make sure that he is getting all the vitamins that he needs, though again the dietician told us to try and water this down and phase it out because it is again high in sugar and we thought we were doing great with him drinking that and getting some fruit… doh!
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We have an appointment with the dietician next week, and what I really want to gain from this is a repeat prescription for his supplements as I know that she won’t have any ideas for encouraging him to eat because last time she told us that it was up to the occupational therapist to offer advice as it is a sensory issue with Dylan. I am then hoping that I can then request an appointment just with the Occupational therapist as currently we only see her with the speech therapist so if we can see her more often hopefully we can get on the road to Dylan enjoying food as much as his sister does!

Do you have any tips, ideas or pointers?! Help!
-WeeOhana

6

Optometrist

It was Dylan’s first appointment at the optometrist yesterday, and yes when the letter arrived I looked at it a little confused and had to google what an optometrist was. Basically, put it is someone who examines your eyes to make sure they are healthy and well.
It is a hard question to answer whenever we are asked if we think there are any problems with Dylan’s vision. There are several things that Dylan does that makes us concerned about his vision, but it is very difficult to tell if this is due to an eyesight problem or if it is sensory based.
For example, when he is using his iPad sometimes he will hold it up really close, this may be because he is finding it hard to see, or simply because he really enjoys the colours that close and it helps him to zone out. When we are out he will also watch everything that is happening around him on his iPad camera rather than just looking about, this may be because if he has poor eyesight his eyes strain to concentrate on things and this helps, but it may also be that he finds it a little less overwhelming when out when he can focus on the screen rather than the whole thing in front of him. (Does that make sense?)
Also Astigmatism is common in my family, this is basically where the cornea or lens of your eyes isn’t the perfect curved shape it is meant to be, this will then cause your vision to be slightly blurred or distorted. So, we want to check to see if he has this too.
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I went in expecting it to turn out to be a horrible appointment considering that I had taken Amellia to get her eyes checked recently and was thinking he would have to get eye drops and someone up very close and personal. (his least favourite thing)
Thankfully though this was just the first part of the test, which is to ensure that his eyes are moving together nicely, to see that he can track something with his vision while it is getting moved around and a few other things like that.
He was able to follow a variety of objects around and the lovely optometrist was pleased with how he did in all in her test, but wants him to go on to get a further examination to find out if the worries are all sensory based or if there is some eye problems that are also causing him to do the things that raised this concern.

This appointment was a really successful one, the lady told us that she had read his information before we got there so she knew what to expect and wouldn’t push boundaries. She was extremely understanding and just wonderful, she ensured that she didn’t annoy Dylan and when she got too close to his pram he quickly alerted her by shouting at her and trying to push her away and she immediately did this when he showed any tiny sign of being distressed. She said that there is no point getting him worked up as this will then just mean that she won’t be able to get any part of the test done and will just put him in a bad mood for the rest of the day so wouldn’t be beneficial for anyone.

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The next appointment which unfortunately has an approx. three month waiting list has me worrying already though. This is with a different optometrist but she has told me she will pass on all her notes and with how she dealt with him today so that hopefully she will be well informed and just as understanding too!
What makes me worry about the next appointment is that he has to have eye drops in so that they can inspect his eye the best they can. She offered for us to bring them home so that we could put them in before the appointment or told us that we could get them done at the hospital just before the appointment. I went for the second option… I do not fancy having to battle him to get eye drops in, especially if Adrian is working. Though I think even if Adrian was off it will still be a pretty hard task to get eye drops in.
Fingers crossed Adrian can get the day off work and then it means there will be three of us to hopefully help it go as smoothly as possible.

I will let you know how it goes!

-WeeOhana