11

Speech & Occupational Therapy.

Recently we attended Dylan’s appointment with his speech therapist and his occupational therapist! We learnt a lot of new things, got lots advice and some more referrals to get Dylan the help he needs!

First off I’ll tell you about the occupational therapist who was very positive. She said that he has good fine motor skills for his age, but to keep working on using his fingers etc for being able to do buttons, zips and little things! To do this, I am going to continue using his posting toys, his ring stack and other toys like those to encourage his fine motor skills to grow! We have also been told to encourage him to have some tummy time, which is going to be a lot harder than it sounds to implement! I am going to try to get him to colour while lying on the floor, and to do his pop up toy etc while on the floor too! This is to try and encourage him to accept pressure and weight on his tummy and this will also help to build up his neck muscles which are essential for life! While doing this I also need to encourage him to sit at the table when he is doing things as well! This will help to build up his concentration and get him used to sitting still for a period of time in preparation for school! While he is sitting playing with a toy at the table I need to ensure that he gets used to changing toys, and doesn’t get so fixated on the one that he enjoys.

The speech therapist was very pleased with his improvements on making eye contact and that he made a very big indication of communication with me when he came over to me and took my hand and walked me to the door to indicate he wanted to leave. She has  said that I need to try to find things that are very motivating for him so that he will start to learn that through communication he can get what he wants and it is a positive thing! I am going to start to put only a few mouthfuls of juice in his cup and encourage him to bring his cup to me when it is empty rather than going and sitting in the kitchen and screaming, and putting toys up that he really likes so he can see them but has to take me over to where they are so that I can pass them down rather than him just screaming. It will be hard, and take a long time for him to pick up on what he has to do to get what he desires but we will get there!
She said that when we are setting targets for him to achieve we need to set ones that are very small and are in reach, and that we are not to add speech to any of our targets for him. She was very positive, but said that it may be some time before he speaks as there are a lot more stepping-stones to go across before he gets to the speech. She said that he is making progress but it is all very slow and tiny, tiny baby steps! I am starting to get used to the baby steps, and celebrating the mile stones as we get there rather than being disheartened by the ones that we aren’t or haven’t met yet.

They are also referring him on to a dietician due to his very limited diet, though have said that the best way to encourage him to eat a few more things is through messy play. Once he accepts different feelings on his hands and arms then he is one step closer to accepting it in his mouth! I have lots of messy play plans, with very slow stepping-stones to getting them messier and messier.. first we are starting off with a box of pasta with only 2 or 3 cooked bits in, and then adding another 2 or 3 cooked bits in after a few weeks of accepting the first few bits of cooked pasta!
She has also refereed him to go on a DIS (Developmental Intervention Service). This will be a 5 week course where he goes for 1 hour a week for five weeks! He will be in a small group with several other children where they will try to encourage them to interact, and many other things! She started off and told me “unfortunately there is a waiting list.. its 12-13” When I heard that I sighed, thinking that she meant months.. another big wait, but then she finished it by saying “weeks” I nearly jumped out of my chair with excitement! That isn’t long at all!
The speech therapist and occupational therapist also want to see him on a regular basis, but not to regular, every 2-3 months. They said that there would be no point seeing him every week as it just wouldn’t be beneficial for him as it is all such baby steps, and if we are seeing them that much and he isn’t making great bounds of progress each week it is also harder on the parents. I really like Dylan’s speech therapist she is very caring, and seems to really understand how hard this is for the parents as well as the child.

We have his CDC review appointment the end of next month, where they will be referring him on if they think it is necessary and doing his education plan… I know that he is going to be refereed, but I know that it wont make this appointment any easier. I know that hearing it from a professional will be really tough. I am already worrying and stressing about it, when in reality; I can’t change the inevitable, nobody can.

-WeeOhana
x

9

Sensory play outside! =]

It has been simply wonderful weather here for the past few days and we have spent lots of time out in the back garden relaxing and enjoying the safe space we have.

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We recently purchased them that wonderful little Smoby activity car that you can see, it is wonderful! Has a great sized slide on it, a wheel you can turn and it has a horn with several different noises, a key to turn and to make it even more wonderful the bonnet opens and you can put whatever you want in it! It also then comes away from the car for if you want to wash it or empty out whatever you have put in it! The reason we went for this activity car is because Dylan can get in and out of it himself and climb up and go down the slide by himself too!

Today I decided instead of putting the expected of sand into it, to put some soil that I had from planting my pepper plants into it to see what he would make of it!

He got stuck right in and really enjoyed it! He was shovelling it up and filling the plant pots up and then emptying them! He was having lots of fun and played with it for a long time!

He wasn’t keen on it getting on his hands and when emptying out the plant pots was very careful not to touch it with his hand and was always using the shovel when moving the soil about! He had lots of fun though and was happy doing this for a long time so I am hoping with a few more days of sun and playing with the soil he will start to touch it with his hands!

My precious little man, who means the world to me ❤
WeeOhana x

11

Guilt.

Something horrible has been taking control of me recently, and its guilt. An over load of guilt.

I can’t help but think of what has caused all this for Dylan.
Did my body mess up his growing?
Did I hold him too much?
Did I not hold him enough?
Was it the co-codamol I took when pregnant because I couldn’t walk?
Is it because he was formula fed?
Should I have tried breastfeeding?
Did I not stimulate him enough as a baby?
.. there is such a long list and I could go on forever.
I keep going over everything in my head, every single little thing.

In reality there is no single thing known to cause Autism, but I think it is natural as a parent to think over and over again what you could have done different that may have changed the outcome.
I’m trying to overcome this guilt as quickly as I can, but as soon as I think I am taking a step forward, I seem to fall backwards into this silly way of thinking.

Baby steps though, I don’t want to force myself to get over this and then it hit me like a ton of bricks in the future when I think it is gone..

Anyway.. small little post today about guilt!
Is there anything you feel guilty about?

WeeOhana x

 

 

1

Learning Curve to friendship <3

Amellia has been working really hard on building up her relationship with Dylan. She understands that he is a little different to others and that he doesn’t enjoy touching, close contact or really playing with her. Though I’m sure you can see how this is very difficult for a five year old to have to understand, and to follow through with. This is especially hard for her as she is basically the polar opposite of Dylan!

She wants to shower him with love and care. She wants to play with him 24/7, kiss and cuddle him and have in-depth conversations about what they are building with the Duplo blocks.. but she has slowly learnt that this isn’t going to get her very high up in Dylans popularity list. When he was building she used to go over and try and help and he would get frustrated at her and hit out, I always found this very hard to watch and explain to her over and over again. She wasn’t doing it out of badness, she just wanted to play and engage with her brother like she would other children. Whenever she then came anywhere near him he would hit out, try to bite her, scream etc at her.. and he still does now but not to anywhere near the same extent. They are both learning how each other work. She knows that if she goes and does something he can’t explain to her he is happy by himself so he will shout or do something else to show her, he has also learnt that not every time she walks past him or sits near that she is going to interrupt what he is doing.

I have seen huge progress between them recently, like all of a sudden they have clicked. They understand each other that little better and she understands why he is a little different and has accepted that she needs to treat him a little differently. Friday, was a huge moment for them. We came down in the morning when they had both awoken and Dylan was pottering about and Amellia was waking up and doing some drawing on her ipad.. when Dylan tottered over to her and sat up beside her all of his own accord. She then handed him her Ipad by choice and showed him what she was doing. She knows he really enjoys drawing so straight away he started to draw, he then took his little hand and placed it on hers. The squeal of delight out of Amellia was just magical. She didn’t want to move and declared this day to me as “The best day in her whole life” This is something that she has been waiting for, for a very long time!
img_4845They then sat like this for the next ten-fifteen minutes swapping whoevers hand was on top, while I melted with happiness for my little girl. This is the connection that she has been dying to get from her little brother since he was born and finally her dreams were coming true ❤
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I had seen that the friendship was growing rather steadily recently, like something had just clicked. She seemed to know when he didn’t want fussed over but was very quick to jump in when he was in a playful mood or was doing something she could do along side him! She did a lot of running about the house beside him before he would even acknowledge that she was there, but now he is looking for her when he starts running about, its magical.

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The other day they had lots of fun out on the trampoline together and Dylan got very upset when she got off, so she then got back on and bounced with him again! Then before she left she handed him a bit of chalk to draw with a zipped the trampoline up so he couldn’t get off by himself! This showed to me that she understood his cry was for her to come back, she then found something to distract him before she left and she also made sure her little brother was safe and couldn’t get hurt.

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This was on Thursday, she had gotten into the car beside him, and as you can see by her face, she is being careful not to touch him too much with her arm! He stayed a minute or two longer then was ready to depart and go back to the trampoline. His most favorite thing in the garden!

They are slowly working each other out, but today has been a big step in the right direction. I couldn’t be more proud of them both. When you have your sibling who understands you and supports you, it can really help you along.  ❤

WeeOhana xx

3

Sensory & Sleep Fail…

I decided that Dylan was doing so great with new feelings that I would jump right in and try something.. half cooked pasta.

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Poor little blighter dived right in, grabbed a handful then quickly threw it away in complete disgust ran out of the room and sat on the bottom step screaming until I moved it.. Bad mummy! I’ll not try that again for a while.. Think I’ll have to do it with dry pasta and adding in a bit of cooked pasta at a time!

I think this day though was always going to be a failure seeing as he had me up since 2:30am.. wide awake and dancing to the gummy bear song. If you have ever heard that song.. you will understand my pain. I was slowly losing the will.
I got through the day with a tin of monster providing me with the caffeine that I desperately needed to function!

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Thank you monster for getting me through this..

WeeOhana xx

1

Questions!

With it  being Autism Awareness month I decided to ask on a page on Facebook that has many bloggers on it if they had any questions about Autism. Here are the questions I was asked and my answer! =]

Sophie from mamamei.co.uk has a little brother who has Aspergers and asks
are people still struggling to get a quick enough diagnosis? “
We are currently going through the diagnosis process and it is a very long and infuriating thing. When Dylan got seen at the CDC clinic we got told that it is autism but we have to wait till he is 2 1/2 before he can even be referred across to the autism clinic and then he will be put on another waiting list before he is seen, which is a very long list. The annoying thing about this is that if they had referred him when we were first there he wouldn’t have been seen until he was over 2 1/2 anyway.  It will then be a push to try to get him into a nursery that will be able to deal with his level of needs without a diagnosis. I know a few other parents who are going through a similar thing and are having to wait for an unacceptable amount of time. One lady had her child referred to the autism clinic at 2 1/2 and he is 3 1/2 now and she still hasn’t had a letter to start the process. So; I’m not getting my hopes up for a speedy one myself.
It is very irritating because they say early intervention is key to helping, but they don’t seem so keen to provide much help until they are over a certain age etc!

Claire from Http://lifeloveanddirtydishes.com asked; What did you notice about your child that made you seek a diagnosis?
There was several things with Dylan that made me want to seek a diagnosis. One of the main things was that he was talking for a while well he said 2/3 words then about a month later he lost them and all the word sounds that he made. He tip toe walked and still does the majority of the time. He also has very poor eye contact and will not respond to his name no matter how loud you shout it! I had worries about him for a while before anyone else would accept that I was in-fact right to be worried and that he needed to be checked out by the health visitor. Even when he was a young baby I raised a few concerns with my HV, like he didn’t smile or giggle for a very long time. I also as a mum remember feeling very upset because we didn’t seem to have that automatic bond people talk about. When you were feeding him his bottle he wouldn’t look at you lovingly etc! There are lots of things about Dylan that increase my worrying about him that I spot as the times go on. Mainly though I am very eager to try to get him talking or communicating in some way so that he can let me know what is upsetting him, what he wants or what is going on in his head! This would then in turn hopefully lessen the amount of melt downs we have in a day-to-day occurrence as he could then communicate.

Vicki from Www.tippytupps.com wanted to know;  “if you have other children, how do you balance out their needs so neither feel left out?”
This is something that I am really conscious about as I have a little girl who is five years old. I am always worried about her missing out on things because of his dislike for many things. Though me and my husband work hard to ensure that she gets to do the majority of things that she wants to do and that she gets days out just by herself so that she doesn’t have to worry about having to leave if he gets upset and that she gets all the attention. We take turns once a month where we will take her out for a full day and do whatever she wants to do, be it swimming, shopping, eating, going for a walk or anything that she thinks of! During the month if there is something that she wants to do that only takes a few hours for example swimming and my husband is off work, he will take her swimming while I go for a walk with Dylan or do something that he enjoys!

If you have any questions you would like answered drop them in the comments below and I will surely answer them for you on this blog =]

If you enjoy my blog and reading about what we are going through with Dylan and would like to read some other blogs similar here are a few;

Danielle Duggins – “I  write about experiences mostly – https://someonesmum.co.uk/category/autism/”

Ann Hickman- “I blog about how our family experiences the world.. often a differently to others http://www.rainbowsaretoobeautiful.com”

Victoria Hatton- “I write about autism too, my daughter has Asperger’s and I’m an Autism specialist teacher. I write both from a teacher and a mummy perspective: Teacher: https://www.mummytimestwo.com/…/navigating-autism-from…/ Mummy: https://www.mummytimestwo.com/…/moment-knew-daughter…/”

3

Go with the flow!

Recently with Dylan I have learned that you really have to go with whatever is working for him that day. If it isn’t something that desperately needs done that day, isn’t important, or I can wait until my husband is home then I simply won’t do it if its something that he won’t cope with. Some people may see this as a little odd, that I’m letting my son control a lot of my life, but in reality; why would I take him to do the grocery shopping when hes having a bad day, just for him to have a meltdown in the middle of the shop. Which means he is very distressed, people stare so I get upset, he gets more upset as I get worked up trying to calm him so we leave. So; why would I put either of us through that? This is why most of my shopping is done online, or when my husband is home!

Today a friend of mine had a go with the flow light-bulb moment! She is a hairdresser and has been meaning to come over to cut my little mans hair for a while, his hair is a very precious thing to him and like a lot of autistic children he finds it very difficult when it comes to haircut time! So, when I went to the yard today she was there too sorting out her horse and was chatting away to me while Dylan very happily played with the shavings when she had a brain wave.

We decided why not have a go at cutting Dylans hair while he is really happy and relaxed in a place that he loves! She headed of to her car to get her hairdressing scissors, water spray and comb! He loved the water spray and played with this for a while to get his fringe wet and get him used to her! After doing this for a while I sat him on my knee to make sure hands and fingers didn’t get in the way! She snipped away and he was happy enough for the first few snips then he started to notice what was going on! With a quick few more snips it was done and after a few minutes he was happy to restart playing in the shavings like nothing had happened! It was over so quickly and he didn’t get too worked up which lead to him happily enjoying being at the yard again in a very short space of time!

He then went on to eat some of the horses food (which to me is bizzare seeing as it is nearly impossible to get him to eat any other human food than what he has already accepted into his very small selection of food he will eat), help me fill the hay nets and empty the wheel barrow!

All in all it was a very successful day! Fringe Trim, feeling lots of different textures and a happy little soul spending time outside in the fresh air! =]

It all boils down to.. pick your battles! Pick what is worth battling over and if it isn’t and its going to make everyone unhappy. simply do it when you get a chance! =]img_4144

WeeOhana x