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Parenting win #448

I took the kids shopping last week when usually its Dad who takes them. 

Dylan made me turn back down the beer aisle and pick up a 4 pack. I had to take this pic and ask Dad “Do you usually buy these? Dylan has picked them up and put them in the trolley”. 

Turns out he does indeed buy that brand of beer. Parenting win for Dad! Go Dylan!! 😂😂

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Holiday Prep

Travelling can be stressful at the best of times. Add on the possibility of delays, an unusual environment and lots of queuing  (see previous post) on an annual daily holiday could be an autism recipe for disaster.

Dylan has always travelled. Even from his toddler years pre diagnosis we would pack him and all of his necessities and have a yearly holiday abroad. Sometimes it was good. Sometimes not so. But we would persevere.

‘Preparation is key’ is a mantra I have learnt to live by over the years. The holiday preparation begins about 4 weeks before we leave and isn’t anything too involved but is just enough to help Dylan get through it. In recent weeks I have had messages asking for advice from others with young children with autism. Its taken me years to gather these nuggets of advice and I’m more than happy to share.

Holiday countdown– We have a laminated A5 sheet which has a grid on it. Like a calender; it has the weeks leading up to holiday, the time we have away and a few days after our return. Everyday, often prompted we get Dylan to tick off the day with a permanent marker. 

We do this everyday right up to the day we leave. The grid is something that we take away with us and continue to tick off the days. The day we depart and come home are highlighted on the grid to help give Dylan a concept of time for before, during and after our holiday. We had a hard year a few years ago where Dylan would spontaneously burst into tears. His communication was much more difficult then and we really had to guess what was wrong or how we could help. We guessed that the whole situation was just too much; one day being hauled out of bed, put on a plane to a hot country and not knowing when or if you would ever go home. We also used to refer to the holiday apartment as home whilst we were out and about abroad “Right Dylan we’ve finished at the beach now so we’re going to go home” before we would go back to the apartment. To have this described as home when it’s not the UK home must be really confusing so we refer to where we sleep on holiday as ‘the hotel’ or ‘the room’ to make a clearer definition between the two places.

Swimming aids– Dylan still can’t swim but lives on holiday to be in the pool. Josh and Grace are both proficient swimmers and so will jump and dive into deeper waters. Dylan loves to follow suit which poses a real risk. Swimming aids can be really tough to find as Dylan gets older. Kids armbands pinch his arms and he has so little stability or strength in his arms the he struggles to keep up with them as they float. A year or two ago we brought him a swimming vest which goes up to age 14. It’s a snug fit this year and we will have to find a replacement for the next holiday. He knows he has to wear this to swim, so after a gentle reminder he will go and pop it on before swimming. It’s an obvious sign as well to those unfamiliar with Dylan that he can’t swim and despite his size he may not be appropriate for the usual boisterous water games played by boys of his age.

Marmite, ryvitas and random foods – At home we naturally stockpile items, usually food, y’know in case of a manufacturing delay or some sort of freak weather that means there may be a national shortage of steak McCoy crisps.

Its not the end if the world if there’s no ryvitas at our holiday destination but it sure makes things easier for Dylan to start the day the right way with as close as possible to his usual breakfast of cherry tomatoes, ryvitas, marmite and a large cup of tea. 

Taking extra foods can be difficult if you are not taking hold luggage. Containers must be under 100mls to go through customs in hand luggage. Marmite seems to come in 125mg jars in Uk stores and so won’t be accepted in hand luggage. I even argued with the man that Marmite is not a fluid but the customs officer wasn’t having any of it and I had to get rid.

If traveling from a large airport you can usually buy larger items in the shops once through security. We found a 100ml jar of Marmite in Boots of all places at Gatwick airport. A great find after that sinking feeling of watchng your child’s planned meal’s for the week be considered contraband.

Laminated iPad– Dylans main mode of communication is his iPad and although there’s a lot of waterproof iPad covers available i don’t really want to risk breaking it by having it in the pool. So to overcome this we have screenshots of Dylan’s main pages which are laminated and can then either go in the pool with him or stay on the poolside within the area that would be the danger zone for the ipad. 

This is the first year we have done this, I saw it on a speech and language forum as an option for facilitating communication during those time of sharing moments or making requests in a highly motivating situation.

In addition to this we have produced extra vocabulary on the iPad to help with the new words that will become more useful over the next couple of weeks. Words like beach, suncream and cocktails are not usually required in our leafy hometown so we have these words ready to support Dylan’s transition into his new environment. 

Social stories – In new situations or on holiday the usual reassurance of rules and routines is lost; everyone stays up later, we eat at different times and although enjoyable for most it can be a little unsettling if you rely on routine for familiarity. There are also rules which may not be broken, road safety and pool safety are important and need to be adhered to and a social story can support the verbal message being given. Dylan has an app on his iPad ‘Pictello’ which is really simple to use and Dylan can rewatch the stories to reaffirm the message if he needs to. But social stories don’t have to be hi-tech. Social stories can be made on paper and as the information within them as involved or simple as you or your child needs. Last year we made a social story to help Dylan understand why he couldn’t go swimming straight after eating. We are using it again this year.

Extra straws and comforters – Dylan has hierarchy of straw and their acceptable standards. The straw should be new and barely used. McDonald’s do the best gold standard straws. Other straws are acceptable but the is a fine line between a really used worn McDonald’s straw and one which is in better condition but from a different vendor and only Dylan can make that decision. When these decisions are too difficult we go to McDonald’s and get a new straw. We can’t do that while we are away so we gather a stock of them over time to take away with us which can be brought out one by one as Dylan needs them. Never be caught short without a comforter!

Packing list and discussion about clothes. – Josh and Grace pack for themselves whereas Dylan needs to have his bag packed for him. Dylan is involved in this but often picks up a hoody or tracky bottoms when asked what he would like to wear. Options are given but unwise choices are gently overruled for more tropical-friendly alternatives. 

We talk about how the weather may be different and what we need to take. Holiday shopping such as aftersun and snacks are brought together to help Dylan visualise the future coming event we are talking about. It takes time but doing these things together in the weeks leading make the idea of holiday (which is a really abstract concept) into more of a concrete reality.

Letter of diagnosis – I always take a dog eared old copy of a letter confirming Dylan’s diagnosis just in case. In case of what? In case he melts down, in case of disruptive or socially unacceptable behaviours, in case we find ourselves in a situation where autism can explain it but I need to prove it. Dylan looks totally normal. When I hold his hand in a busy airport, he’s nearly as tall as me and he’s telling me ‘non’ as he wants to go running off to stim at the disappearing steps at the bottom of a packed escalator. It would be totally acceptable for a well meaning member of the public to intercept to ask me what I’m doing holding onto him so tight. Why don’t I let go like he’s telling me to.  That he’s old enough to know what he wants to do and I should respect that. 

This has never happened. But it could and I could need to prove that I am not being abusive but trying to protect Dylan. A high anxiety area such as an airport could exacerbate Dylan’s behaviours or our responses to them. Dylan letter of diagnosis is our only proof.

Airport assistance – Larger UK airports Gatwick, Manchester and Glasgow have all changed practices to offer support to those with autism travelling with them. It’s worth checking with both the airport and the airline to see what assistance they can offer. Gatwick have a lanyard with small sunflowers on it that can be collected from their assistance desk and it is instantly recognisable to all staff yet discreet enough to not be noticed by anyone else. Its use certainly made a difference to our journey this time and it’s worth looking into. I would thoroughly recommend it. 

Preparation is a necessity and it can make travelling with autism possible and great fun. Parental relaxation, switching off and reduced anxiety is not guaranteed but at least you have a change of scenery.

Think of it as a busmans holiday 🙂

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Let battle commence!

Today is EHCP day. 

An EHCP or Education, Health and Care Plan is a wondrous affair where a person with special needs has all of their difficulties and challenges outlined in one easy to read document. This document is then shared to all three specialties; education, health and social care who professionally argue to be allowed to demonstrate that they can best help meet these young person’s needs, allowing the young person to achieve their full potential and develop skills to be able to have a full and meaningful life.

Sounds wonderful; sadly far from the truth.

EHCP day is the culmination of the last 3 months of assessments from various, previously unmet professionals. The professional comes to the house, stays for no more than two hours to observe or question both Dylan and ourselves and then they leave. Following this brief encounter a report is produced and sent to the special educational needs (SEN) department. If we are lucky then as parents we are copied into this correspondence. If not, then the leg work of chasing this up begins.

The document itself is made up of various elements which should work in a reactive chain. The first part of the document outlines needs. This part is complied by the SEN officer who reads the various assessments and ‘cuts and pastes’ these into a document. 

The ehcp is a new document and a new process which involves the young person and the families more than the previous ‘statement of educational needs’ document that it supersedes. 

The truth is that Dylan’s new EHCP draft document is his previous statement with small more recent elements added. It still refers to when he was at school. HE LEFT FIVE YEARS AGO?

Anyhoo. 

This first part of the document outlining needs is then used to construct some targets for the following year. These targets should be SMART and individualised to Dylan’s needs, like little building blocks, these targets can be used to work towards a bigger target over the coming years.

Then the next section is the provision section. What extra help is it that Dylan needs to be able to meet the targets and who’s going to provide them? So it’s a clear flowing process where Dylan’s needs are key and the document flows to devise a plan of support with these. 

A fundamental flaw to this process is that the inital compiling of the information and identification of Dylan’s needs is completed by a SEN officer from the local council; the same council which provides or commissions the support. As a legally binding document it must match support to identified needs. However if the department doesn’t have the funds or the provision to be provided in the third section chances are those needs will be over looked, tweakef or omitted in the first section to make it look like a worthy document. 

If they don’t mention the need then they can’t be expected to provide for it. Well that’s not fair! 

For instance in Dylan’s needs assessment the use of the iPad for him to communicate is mentioned a total of four times within the needs descriptor along with how impossible it is to understand him verbally. Scan through to the provision section and speech therapy support this year is being reduced from 15 hours a year to three visits with no mention of the iPad. Not only is this a huge drop in support but the provision is being outlined before the needs section has even been discussed. The EHCP, like the statement before it, is a provision led exercise rather than needs led support system.

When the prepopulated document is produced it is circulated to all who  contributed with a meeting invite. This meeting is supposed to be to discuss a representation of needs and for the the provision to be agreed. 

The reality is that Dad and I go to meet with 1-2 of the professionals who have contributed to the assessment process (as most of them don’t turn up anyway). We then disagree with the needs section as its out of date but have to use the piles of dogeared highlighted documents that were produced in the assessment process to demonstrate why Dylan’s documented needs should be changed. Its not just a simple request. 

Sometimes you can convince the SEN officer to change or amend the needs section. Others not. After all, she wrote the needs section in the first place! 

Dylan’s aba consultant and Miss E are not allowed to have reports considered for this as they do not provide county provision, even though they do provide provision for Dylan. Again, this is a provision led rather than Dylan led process.

And so it goes on. Once the needs section is completed we continue to move onto the targets and each speciality worker should contribute to how their assessment demonstrates the support Dylan needs to access learning and achieve some targets. But with only a handful of professionals present it falls to Dad and I to fight Dylan’s corner to have some decent targets for the coming year. 

Before when I wasn’t as informed about this process as I am now, we weren’t even invited to the meetings and it was all held within the school. A favourite yearly target of mine from the statement document when Dylan was about 7 was ‘to be able to mix cooking ingredients with his hands’. We removed him from school soon afterwards….

So my mission for this morning.

  • To have the iPad documented in the provision section so if it breaks or needs replacing this should be covered by his ehcp and not down to us to replace. Dylan needd his iPad to communicate. Dylan also needs access to an AAC environment where he can have specialist support on developing his communication skills and feel that he belongs to a community of AAC users. 

  • Dylan can’t communicate so he cannot have his speech provision reduced. Absolutely not. Even though the 15 hours from last year only actually materialised into 4 hours (which is illegal) and the standard of therapy is so low that we privately source Miss E. It must be recorded that Dylan has these needs and this is the provision required to meet them; regardless of who provides it.

  • Dylan needs more social opportunities. We want a college place for him. After a wonderful visit to the college yesterday which Dylan thoroughly enjoyed he needs to be able to access a specialist educational placement. Only a day a week to be able to get used to a new setting to then be able to go full time by 2019.

The only difference between the statement and the EHCP is that Dylan is asked to contribute to it. We took full advantage of this. The bank of questions used once again shows how unindividualised the whole process is.

I love the ‘glorified babysitting’ line on our family statement that they have to accept as part of our evidence. Not a truer word.

Well I’ve got my big pants on; wish us luck!

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The next generation

A couple of weeks ago Grace had some friends round.

We don’t often have people over, historically it has been overwhelming for Dylan and secretly Dad and I have always felt a bit vulnerable about the sometimes innocent cruelty of kids to one another, especially to those who are different or misunderstood.

Don’t get me wrong; we have never had any issues. Josh and Graces friends have grown up with Dylan. They see him in the playground at pick up and drop off times and will often innocently ask valid questions to the younger two about Dylan. 

Children are naturally inquisitive and its important to ask about things you don’t know or understand. Ultimately its how people learn and I fully encourage this. However I am also aware of the burden to the little ones being Dylan’s advocate to the big wide world. Home should be that little bit of sanctuary where they don’t have to protect or defend him.

But the wee ones are growing up and have needs themselves too so before the half term break we agreed and had a small gaggle of Graces friends over for a picnic and a play.

Well, what a beautiful set of young souls. They played both with and around Dylan; involving him when he wished and accepting when he didn’t. Communication was no issue and his flicking, flapping and straw knawing was totally overlooked. He sat in the garden and ate with them as pleased as punch.

Faith in humanity and hope for the future restored. 

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Namaste 

Thankfully Dylan has always been relatively easy going and as a family we live our lives straddling the fine line between trying to expand Dylan’s experiences out of his comfort zone whilst simulatiously picking our battles to maintain some family harmony.

Dylan has always been highly anxious with anything to do with his body; physical examinations, people looking at or asking questions about his body or if he is required to imitate others can send him quickly into an anxious state. We have attributed this to his sensory processing difficulties which appear to be highlighted to him when his attention is drawn to his constantly flailing limbs and stiff posture. 

So when Dylan’s ABA consultant suggested yoga as a keeping fit activity we nearly choked on our digestive biscuits and almost certainly knew that wasn’t ever gonna happen.

However a few weeks ago I found a special needs yoga club and we decided to give it a try. The reason for this was less from the perspective of keeping fit but more for the purpose if learning a lesson of compliance, of fulfilling a task request or activity because of external necessity rather than all of Dylan’s activities being self directed. 

Initially he hated it and would grizzle and request ‘cola’ throughout but over time and gentle consistency he’s actually getting quite good at it. 

Okay some days are better than others but we’re persevering!