Don’t forget about you! 2016-09-24


As a parent of any child it is easy to throw everything into being a parent and looking after your child, you run around getting them where they need to be and doing what they need to do, you do the shopping, you do the cleaning, and you probably work as well.

It is important that within all of that that you take some time for you!

You are your child’s number one carer, you are the one that they look up to and trust to look after them, if you don’t look after yourself you will not be able to look after anyone else and that includes your child.

Take a break, have that coffee, go for that walk, see your friends, recharge your batteries, you will feel better for it and you will be able focus on your child 100 times better because of it.

Looking after yourself is not being selfish, looking after yourself should be a priority.

I swim to take my time out and to reset my brain, it makes me feel better, gives me a chance to mix with other people, and because I can’t take my phone I am away for all distractions, including texts from my teenager or husband about random stuff.

Find your thing, find what  makes you happy and helps you to become you and do it, do it regularly, and don’t feel guilty, remember you work so hard the rest of the time you deserve it, and so does your family, a Happy Mummy or Daddy is always going to be better then a miserable one.

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What is making you smile today? 2016-09-23


Its a simple question?

Its so easy to let life pass you by, concentrate on the negatives, concentrate on the things that might have gone wrong and forget about the things that make you smile.

Try and think of something positive that has happened today, even something really small, something that to others may seem really insignificant.

Did someone make you a drink, did someone actually ask you how you are and meant it, they cared. Did a stranger say hello in the street when you have been alone all day and starting to feel the world had forgotten about you?

For me it was when my son ran downstairs this morning, shouting ‘mum mum mum mum mum’ and then ran up to and gave me the biggest hug while I was trying to dash about and get ready for work.

I always have 5 minutes to give my boy a lovely cuddle in the morning.

 

Is it worth getting a diagnosis of Autism? 2016-09-22


Is it worth getting a diagnosis of Autism, is it worth all the stress all of the assessments all of the appointments, the waiting the, well, the everything that comes with it?

Its a question as a parent or as an individual that you need to ask yourself, what benefit will having a diagnosis have to you as a family?

It is important to remember that labels are sticky and once you have a diagnosis you have a label and that label is going to be there forever.

Autism doesn’t go away, its a condition not a illness, once you have a diagnosis of Autism, once you are told you or your child has autism that is it. I personally felt like I mourned for the child that I thought I was going to have while still loving the one that I did have while going through the whole process.

But what will it mean for you and your family?

It gives you an answer to the question of why am I different, or why is my child different, why do they flap/spin/squeak/sqawk? Why don’t they like clothes with seams, why don’t they like change/ noise/ busy places?

It means that you have an explanation for it, when you are trying to get help and support for him a diagnosis means that you have something tangible to prove that your child has this condition, its no longer suspected autism its now confirmed.

I know people will say that schools shouldn’t have to have a diagnosis to provide support, but it does help as it means that all of the proving that they need support has been done, you don’t need to wait for the school to see your child and make a decision on what they need.

For us as a family I didn’t think that it would make much difference to us, we knew that he was autistic, we knew that he had challenges, and that he is going to need a lot of support at school and at home as he grows.

When we finally got the diagnosis it was a relief it meant that someone had listened to what we had been saying, it felt like we could finally draw a line under it and start living again, it meant that we were referred to other services that could help him, it meant that the people at school that had doubts no longer had those doubts, it meant that he started to get the support that he needs.

That diagnosis will stay with him now forever, he will take it with him to senior school and they will then be able to use that information to provide him with the support he needs, he can go on to further education knowing that he can take it with him and that they will understand his needs and support him, I am not saying that we won’t have to fight but that label means that some of the fight has been done.

 

He Doesn’t Look Autistic 2016-09-20


This is something that I have been told many many times by people

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and I know in many ways he doesn’t look any different to any other child of his age. If you look closely there are some subtle differences in the way that he acts, his mannerisms and the way that he makes eye contact (or doesn’t make eye contact).

Autism isn’t a physical disability, the vast majority of people with it won’t look any different to those without it, and many are able to mask the many signs very well so you would never know.

So please stop telling me my child looks normal, I know he does, but honestly you spend a day with him, or even an hour, and you will soon see what difficulties he has.

With that in mind I would like to share this image from Tumblr, the original link is below.

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http://defyingdoomsday.tumblr.com/post/128040073856/grumpylittles-not-every-disability-is

Reactions from other parents… 2016-09-20


When I tell them about my son’s issues

I know it is human nature to want to try and fix things but believe me I would be very rich if I had a pound for every time one of these questions was asked.

When I say he is non verbal

  1. Have you tried reading to him, usually followed by some preachy story about how they read to their child all the time.
    No I never thought of that.. but really though, we read to him all the time, usually the same book over and over and over.  
  2. What about nursery rhymes and things have you tried doing that with him?
    Yes we have tried this with him, no it didn’t help, we even did 6 months of talk time at the children’s centre which was basically this, he hates it, he won’t join in, in fact he gets very upset by it, especially if you try and get him to do actions. 
  3. Do you use sign language then? Why not?
    Nope, basically its because he doesn’t need to learn another language, he doesn’t see the need to communicate, its not that he can’t speak its that he doesn’t understand why you need to speak, teaching him another method of communicating won’t help him understand why we need to communicate, if anything it will cause more confusion. 
  4. What you mean he doesn’t talk at all? That must be nice my kid just rabbits on all day and night, can’t shut them up, sometimes I wish they would just be quiet.
    Really? Yes people really do say this, its just insulting really, you wouldn’t want this, you have no idea what you are talking about, go away. Actually he can speak, its not very clear and usually very quiet but he can talk. He just doesn’t understand why you would need to chatter. 
  5. He will just start talking one day, you watch it will all come at once
    Well he is 6 now and I think that if this was really the case that it would have happened by now, no he won’t suddenly start talking, believe me, I have had experts tell me as such, he has daily speech therapy, its coming, its slow but its coming.

When I say that he has a limited diet

  1. Have you tried offering alternative things?Nope, never thought of it, come on, really? You’re asking me this, yes I have tried all sorts with him, its a sensory thing, he likes soft food, that’s a certain colour, he isn’t being a picky eater.

     

  2. Have you tried leaving him until he is hungry, if he was hungry he would eat it
    No he wouldn’t, he doesn’t get hungry, he has to be told to eat, he has to be told to drink, he wouldn’t do either of these things if we didn’t tell him to. Leaving him until he gets hungry would more than likely just make him poorly.
     
  3. Just keep giving him it, he will get the message and eat it eventually
    No he wouldn’t, as above really, he doesn’t get hungry so he wouldn’t give in and eat anything, if he doesn’t want it he won’t eat it.
     
  4. Just put a little bit on his plate of what you are having he might try it
    We do this every night, some nights he tolerates it being on his plate other nights he screams until it is taken away, either way he never eats it.
     
  5. Does he eat XYZ?This really does my head in, more than anything else, when people start listing foods and asking whether or not he will eat them. Honestly there is no need for this.

When I say that he has poor Gross Motor Skills

  1. Do you take him to park and stuff
    When he will leave the house (some days he refuses) then yes we take him to park and things, he generally hates it, doesn’t play and gets upset when other children try and play with him. I take him to more appropriate things such as soft play sessions for children with ASD, at those sessions he plays and enjoys himself, he is just some what delayed in the way he plays.
     
  2. Have you tried getting him a scooter or something, its really helped my son/daughter
    He has had just about every scooter on the market, he has had balance bikes and bikes that you peddle, the only thing he liked was his space hopper which he used to sit on to watch telly.
     
  3. Maybe if you played with him more…
    OK this might seem hard to believe but he doesn’t like playing, it is incredibly hard to engage him any sort of play, he likes to do certain things in a certain way, he will sometimes play ball but only for very short bursts of time and always on his terms.  

So there it is the questions I always get asked, maybe I should just print this out as a hand out for those people.

Do you have a child with difficulties, maybe you are the one with difficulties? what questions do you get asked? Do they annoy you as much as they do me?

Leave a comment below and let me know, I would love to hear other people’s thoughts on this.

It Gets Better.. 2016-09-20


A message to all of those parents out there that are currently fighting for a diagnosis.

It gets better

It really does, I remember the stress, the sleepless nights, the worry, the feeling like nobody believed you, nobody was listening to what you were saying.

Its hard, its really hard

I remember taking my lad out and the stares from people as he flapped and spun around in a shop, or worse lay down on the floor and screamed.

You learn to cope, you stop seeing the judging faces, you develop strategies that work for you both

I remember trying to explain to my Mum and Dad what was going on that that they seemed to think at first that he would get over it, he would grow out of it. I remember those conversations

They will come round, they will start to understand, they will see it in the end, share the reports, keep talking to each other, sit down have the chat, cry it out if you need to, they will understand in the end. 

I remember the endless amounts of people telling me that he will just wake up one day and talk, it will all come overnight, he’s just a slow developer

These sorts of conversations hurt, they hurt because they are trying to make you feel better but you know deep down that what they are saying is not true, stay strong, they mean well, they don’t mean to hurt you, they just don’t understand.

I remember the 1st day of school being terrified that he wouldn’t cope that they wouldn’t understand him

I was right, it wasn’t easy for him, it wasn’t easy for me and it wasn’t easy for the school, it takes time, they need to develop a relationship with your child, they need to learn about him and learn strategies that work, its terrifying for both of you, Talk to them, go in, explain what works and what doesn’t work, work with them not against them even when it feels really hard to do so. Your child will benefit from it in the end. 

I remember being told he wasn’t Autistic, that he was just different and that he would be ok, he isn’t Autistic he looks like a normal child, he isn’t Autistic he’s just a late developer.

You know your child better than anyone else, you know all his/ her quirks, you know why you believe that he has these issues, you are the expert, collect evidence, take photographs, take video’s of behaviours, document things, you are the expert and the professionals should be listening to you.

I remember the long long wait for that final assessment

Its hard for everyone, remember everyone is going through the same thing, they don’t triage these referrals as it would mean that some kids would just never get seen, believe it or not waiting times are coming down nationally as the focus on Autism increases. Sit tight, keep collecting the evidence and your assessment will happen. 

There is information about the assessment process on the NAS website

Autism Friendly Clothing 2016-09-17


Marks and Sparks (M&S, Marks and Spencer) what ever it is that you like to call them, has recently launched a range of autism friendly school uniform, the idea being that they are easy for children to get on and off.

This went on sale on the 01/08/2016 and although most people will have sorted their school uniform for the year by now, if you were not aware and need to replace anything that your child is not coping with then it may well be worth taking a look and giving it a try.

10% of all sales are currently being donated to the NAS as if you needed another excuse to get your hands on it.

The range includes things like pull on trousers without buttons and zips that they may struggle with and shirts where the top buttons are replaced by a discreet velcro strip so that the top can be pulled over the head to be removed. Reduced seams and soft fabrics also help those with sensory issues where these things can irritate and cause discomfort.

There is a more detailed description and some images on the NAS website and can be found here