This is what communication is all about.
Following this week’s aac advice we have changed the set up of Dylans IPad.
From this..To this….
Although the second screen looks busier and more complex this change actually makes the art of sentence building easier by having all relevant icons to hand or only a click or two away. This is turn will promote more conversation, descriptions and generally options for communicating compared to his original set up.
Its been scary stuff trialling it but we are finding the more that the rest of the family model talking with the icons the quicker we are getting using it and then less anxious Dylan appears with it.
So far so good!
I recently saw a post on The Huffpost that reported about one mothers difficulty in going out and the feeling of having to hide away due to the social difficulties of going out with her child with autism. The article was hard to read but also brave and discusses a feeling that I remember well. The post was met with a frosty reception and attracted comments outraged at the ‘child abuse’ of not wanting to take your child out. The ‘if you just make them work through it they’ll get over it’ mentality of parenting a child with Special needs.
Why do we do that to each other as parents? Judge, be unkind or unsympathetic to others difficulties? This parent shaming needs to stop and we need to support each other and our kids.
We’re all in this together.
Here is the article and below is one of my responses to the many blaming and unsupportive comments the article received.
What might appear negative to one is the reality for another. That in itself requires an element of acceptance does it not?
Acceptance isn’t only from society. What if the professionals don’t accept the needs, especially sensory based needs?
My son will chase others to push them. Not to hurt them intentionally; But he will if he catches them.
The screaming. The fear in the faces of others in public when he screams because of a sensory trigger. I know what is going on for him, I know he won’t attack them but others don’t.
And some days I am tired of explaining. Of trying to catch others eyes at the right time to explain. After they have noticed that something is different but before their interest shuts off and they want to move away, the opportunity to educate lost because he startled them.
If professionals don’t support children with these needs then it is down to the parents.
Parent who are already tired. Frustrated. Grieving at times.
Parents who are trying to navigate a profession which people take years to study. To pick out relevant bits to their child to be able to relieve this sensory hell for him. So he can move forward, feel able to go out and then seek acceptance.
All that work, that dedication and that belief in her child makes that mother the example she wants to see from the world.
Raising a child with additional needs is financially expensive. Theres no getting away from it.
Be it the additonal laundry costs, equipment, adaptations, loss of earnings, the costs keep increasing.
Although the day to day running costs are increased there are a number of charities which can help with one off larger items. Family Fund have provided Dylan with his IPad twice.
This is not greedy having 2 ipads.
Due to their delicate technological nature and Dylans sensory seeking rough handling we are currently on our 6th Ipad.
It’s true that the rate at which we are getting through them has slowed significantly as the years have gone by and Dylans matured but that’s still A LOT of technology!
IPads have paid a large part of Dylans development. He naturally picked one up and found it easy to use. He has struggled with puzzles, blocks and other preschool toys but with the IPad he is a whizz!
Dylan has a statement of educational need. A legal document which means that Dylans additional needs to be able to access education have been acknowleged and legally assistance has to be provided to meet this need.
In real life those assessing the need provide the provision so if they don’t provide it as standard they won’t assess for it. ABA isn’t provided by our local authority so they don’t provide it, no matter how well it works!
ABA isn’t expensive in the grand scale of special ed.
It IS expensive however for a family with 3 children and only 1 adult working full time!
Caudwell Children help Dylan once a year with a grant to go towards his ABA consultancy fees. This means tested assistance is paid directly to Dylans consultant which reduces the pressure on us to provide his education AND pay for it fully.
We are very grateful for the charities and the help they give Dylan.
It was Dylans birthday last week. I am finally coming to terms with having a teenager in the house!
It’s generally been a good week. The first week of the summer holiday is often filled with excitement, plans all scuppered by lots of rainy days but this week’s weather hasn’t been so bad. The children have had plenty of time for the pool, alfresco eating and generally letting their hair down.
Dylans IPad has had a bit of a revamp. I was trying to arrange the icons with no clear plan, just kind of taking snippets of ideas from other people. I have been shown the error of my ways by a lady met totally through Google, who is involved with an aac charity. We’ve been chatting by email for the last couple of weeks and after explaining how we have no professional direction with the path that Dylans communication is going she kindly offered to meet us this week.
As.suspected the fundamental elements of aac; knowing where the buttons are and expanding the range of language used were lost on me and as a result lost on Dylan too. We now have a clear structure and are planning a lot more than the standard requests for ‘biscuit’, ‘drink’ and the like.
It seems that the combination of aac, language development and social integration are a lot more complex than I initially realised.
Who knew! 😉
Happy birthday Dylan!
Wow; now a teenager in what feels like a blink of the eye!
Because of you, my life is enriched and filled with purpose.
I tried to pick out some special pictures to share but there are too many.
So many happy memories. Fun times. Experiences. Sharing and growth.
I just couldn’t choose so I have shared them all.
I love you so so much.
Two days to go and we are none the wiser with regard to ideas for Dylans birthday.
He listens to our music a lot in his room. It’s like a sanctuary for him away from the rest of the house. He has some cds but doesn’t have a favourite artist or song that we know of.
As far as we can see he selects the cd he wants by sight and then selects the song by the track number on the cd player. However it was worth exploring.
After the success with the pizza ordering at the weekend Dylans Dad set up the computer and I suggested we encourage Dylan to play around with Youtube. Hopefully this would generate some individuality around topics he could choose to explore and to help him stay interested in the task.
With high levels of support and prompting Dylan was able to search for Youtube and successfully bring the page up.
‘Dylan what music do you like? What do you like to listen to?
Dylan immediately types in ‘Tom’ to the search bar.
Tom? Tom Jones? No. Don’t know any other Toms that Dylan may know about. The pair of them search for a while for videos on YouTube, none of them satisfying Dylans explanation of Tom.
‘Anything else Dylan?’
Dylan types ‘Tom Tec’
Now Dylans dad’s really confused. ‘Who??’
He Google searches Tom Tec which comes up as a business name; theres no singers or bands with that name.
Dad’s confused, Dylans now bored and gone for a dip in the pool. As I was out working I ring Dylans Dad to see how the birthday quest went and was filled in on the story.
I am also very confused, it’s only when he mentions Tom Tec that it occurs to me.
‘Have a look at his music system, what’s the brand?’
I am amazed at Dylans ability to understand and recall information that we often deem as useless.
I feel proud at the patience that Dylan showed his Dad when he had clearly answered the question but was sill being misunderstood.
I am hopeful that despite the mixture of misinterpretation from Dylan to us and us to Dylan that we are able to have chinks of understanding and insight.
Still no blooming idea for his birthday though! 🙂
This week we’ve been trying to teach the concept of time. A tricky concept at best but Dylans ABA consultant has a handle on it!
We’ve brought Dylan a watch. Not digital but with hands. Specification was with a large face, clear of pictures or decoration. Oh and no second hand.
We found a watch. It has a second hand but otherwise meeting spec. Now to see if Dylan will tolerate wearing it.
Right. It’s on 🙂
Dylan had a programme learning the time about a year ago which has been maintained and reviewed since it was originally taught. It was pictures of clock faces and the written words for ‘o’clock’ ‘quarter-past’ ‘half past’ and ‘quarter to’ for Dylan to match to the clock faces. Dylan found this difficult as a matching programme so we took the steps back further by using a real clock with no batteries so that Dylan could see the hands moving to make the different hand positions more obvious. This was also difficult so we stripped the skill back even further by removing the second hand and just having the hour and minute hand. Totally distraction free. Only then was Dylan able to report the correct time on the clock face. From there we built onto the skill, layer by layer. Slowly replacing the second hand and giving more choice options for Dylan to answer from. The ehole porcrss from initially introducing the paper clock faces to mastering the 4 time matches took about 7 months in total.
But this is different. This is the concept of time.
Dylans day typically appears to run from mealtime to mealtime. Once he has eaten his breakfast he is asking for lunch.
Dylan requires reassuring countless times throughout the morning about what he will have for his lunch. Then (at lunchtime) he finally eats his lunch before he is then bang on it planning his dinner and so on. This appears to be Dylans current model of time. So to open up Dylans concept of time to a less anxious routine we are throughout the week- every hour through the waking day, approx 7am through to 6pm, having an alarm going off every hour on the hour and we ask Dylan
‘What time is it? What are you doing?’
Dylan then verbally approximates the time (which is difficult but not impossible to understand) and then with his Ipad he selects an activity or statement for what he is currently doing. Dylan then copies the text from the Ipad to a purpose made paper schedule for him to record his day. The idea is that he develops awareness of sections of time in the day.
Here are a selection of his diary sheets.
It’s an interesting programme and Dylan is certainly developing the habit of checking the time when prompted. However, for us it’s a long day when you’re governed every hour by an alarm.
And Dylan still asks for lunch at 9.30am
Still, it’s work in progress 🙂
Dylans just ordered his own lunch. He has an osper card which is like a prepayment card for youngsters. Dylan doesn’t spend his money often and so the £5 a week we load on there has grown to a whopping 45 quid.
He was asking for pizza for lunch so I thought; you want it, you get it.
We used the online ordering facility and it was good practice for him to go over and over the postcode and other required details and although he enjoyed picking the pizza and sides (which were actually totally different to what we usually order, so that will be interesting!) He found the rest of the process tiresome.
Dylan entered his address details which is something we’ve been practicing as part of the life skills programme and his payment card details. I kept on reassuring him he was doing fine and he needed a lot of reminding to slow down as his rushing meant he was skipping sections and mistyping and that would have left the whole thing a mess. It was only once we had completed and checked out that I realised the whole process had taken over 40 minutes! He did it though and was motivated at points. It was lovely to see him so proud when he opened the door and all his food that he had asked for arrived.
**please excuse the potty mouth**
This is crap. Parenthood is stressful. Kids are stressful. Does Dylan cause me stress? Does his Autism cause me stress? No. The shitty care system causes me stress, sub-standard good for nothing education causes me stress, shoddy therapists cause me stress. That’s the only comparison to combat in my life- the frigging system. Jeez.
This was my Facebook post 1 year ago.
Every year June through to August is statement review time.
It sucks. It’s a time when you have to argue how bad everything is all the time to people who judge if you are justified to access resources based on how bad your circumstances are. Resources I may add that the assessors provide. So if your needs outweigh the resources available then that particular need is overlooked. Its not assessed. Not discussed. And you get: No help.
Now I work in health care. Hence the comparison. Now if I have a patient who has cancer and they present in chemo suite with a broken leg it would not be acceptable to send them on their way without acknowledging the leg.
‘You have cancer. We will treat the cancer but not the leg. The leg isn’t as important as the cancer. And especially if the leg break is anything you do with the cancer then it must be seen as a byproduct of the cancer. Either way. Have your chemo or go home.’
Can you imagine the uproar? You would ask to see another Doctor. Go to another hospital and ask for a second opinion. You almost certainly would have your leg treated elsewhere with a big fat apology for the first departments negligence and lack of care.
Now I hate comparing anything like this with cancer but its a scenario that most cam understand and relate to.
There is no apology. Not with education. There is no other department. No other professional. No second opinion. If your leg/need/disability can’t/won’t be treated/acknowleged/met then that’s it. Tough.
And that’s where the combat starts.