Ups and Downs.

As is becoming my way, I wrote this in response to a message from a friend and it sums up where we are at nicely.

So, I honestly cannot think of anything that we have been doing in particular that is noteworthy but I do know that I am utterly EXHAUSTED!

Half-term turned out to be quite busy I guess with a couple of trips to woods (mushroom hunting and tracking and then making wands and pixie dust), some shopping with mum for my birthday (Fly boots rock!) and then some friends visiting here and there (one day I had 8 children in the house...arghhhhh!).

I guess I am doing ok but I am still a little lonely. It sucks not having anyone to pick up the slack when I'm tired or stressed out. At the end of a bad day what I would not give to have someone to chat to about what happened. What I would not give to have someone bring me a coffee in the morning, just sometimes. I do begin to go a little crazy inside my own mind some days.

This especially applies after Dominik or Lily meltdown and I've used up all my energy (which is usually at a pretty high level!) sorting them out and then there are still Harriet and Hannon to support in the aftermath.

Yesterday in particular was bad. Dominik has been having serious trouble sleeping again (we're talking between 4 and 6 am to fall asleep) so yesterday, when we had to get to parkour for 1pm, he was shattered and not in any fit state to get through it. I was dreading it before we got out of the door as he insisted on wearing his new trainers despite not having even worn them in the house yet! Yup, setting himself up for the inevitable fall.

He had the most massive public meltdown he has had in a very long time (so long in fact that I can't recall the last time) and it was spectacular. 

Swearing, kicking, shouting, punching and crying all at the top of his very loud voice in a very small gym.

It was all because he could not agree with the other children where his place in the line was and then, because they all disagreed with him, he felt that they were bullying him. It was heartbreaking trying to explain to him that it wasn't bullying and that it really wasn't that important. But, as those of you with Autistic children already know, this is a fruitless endeavour because it was not as he needed it to be in order to manage.

They all said his spot was somewhere different (because he had left the line to speak to me and change his shoes) to where he had begun and he just could not manage at all with that yesterday. This has never happened before and Dominik has been going to parkour since September so that is an indicator of just how bad he was feeling. It has highlighted to me just how massive his needs are when we are not in 'optimum state'. It has also been kind of a 'blessing' as I have the dreaded DLA paperwork sat in my kitchen waiting to be completed. Sigh. What a soul destroying job that is.

On to Lily then. She is pretty dire too right now. She is having trouble sleeping also. Not quite as bad as Dominik, but about 2 am. She is grumpy, argumentative and easily stressed most of the time if things are not kept calm, predictable and as she likes them to be. This is perhaps even more tiring than Domink if I'm honest. She will not be rushed, she will not be told what to do and she will not participate in anything aside from riding lessons.

I think before Harriet arrived this was fine because when they were up all night, I would be too! We would do all the things we would usually do during the day, at night instead so I felt ok about everything.

But now, obviously, Harriet gets up at around 7 am and I need to be up then too. I have to get to sleep before midnight or I cannot function at all and I start becoming more Aspie by the day and meltdown left right and centre over things that are just not that important (like a crumb on the worktop or a shoe on the floor) . This does not happen when I am doing well! Having the two of them going through a rough patch at the same time is pushing me to my very limit that is for sure.

Hannon however is AMAZING (thank goodness). He is excelling at parkour. Loving his running machine. Utterly focussed on becoming strong, fit and healthy. He is still programming his games with aplomb. He is now learning how to do some video editing and working on improving his spelling, grammar and punctuation (although he doesn't know that!) through his video uploading and responding to peoples comments.

Harriet too is AMAZING! She is above the 75%ile and growing beautifully. She is cruising, landing on her bum, kneeling up, clapping, waving, blowing kisses, almost standing alone and generally enjoying her new found communication skills. She is happy and content, loves being read to and enjoys playing with her big brothers and sister more than me! She also loves to eat although still prefers the breast!

I have just taught myself some basic crochet skills so have made Harriet some leggings and am making her a matching bonnet now. Feeling proud of that!

So, there you have it! Not a bed of roses but still ticking along.

On a final note, I am going to be doing some informal chats at The Avenue support group next week which is from 12.30-2.30 pm on Tuesday, November 17th at The Pentecostal Church, Crab Lane, Biggleswade, Beds, SG18 0LN. If you would like to come along and have a chat please book by sending an email to - theavenuesupport@outlook.com

Thanks for reading,

N x

Controversial (or not) Christmas ideas. First published 2014.

I thought I would write a few words about Christmas and how it's going for us this year (and it is an excuse to post a picture of my tree which is, honestly, the best bit for me)!

So, for those of you with little ones who are at school, I imagine this time of year must be particularly challenging not least because of the following;

• Mufti-days
• Carol Services
• Timetable changes
• Nativity Plays
• Decorations
• Staff absence 

to  name but a few of the school based changes. 

But what about if we include;

• School holidays
• Visiting relatives
• Christmas Trees and decorations
• Furniture being relocated
• Presents (and the accompanying anxiety)
• All predictability vanished
• Extra people everywhere

And perhaps even;

• Parties
• Father Christmas himself
• Family events
• Photo ops
• Different foods
• Different clothes
• An abundance of chocolate/sweets and treats everywhere
• Anxiety at its maximum surrounding the idea of being 'good/well behaved/deserving'

This is perhaps the most challenging time of year for us families with children (and adults) on the Autistic Spectrum so I thought I would share with you a few of my ideas designed to make life a little less stressful.

It is my hope that they will help things to  run more smoothly (and joyously), in your home too during this Christmas Season.

Preparation, Preparation, Preparation.

This cannot be said enough! Prepare to the nth degree!

Let your child create their own special visual timetable (in the form of an advent calendar maybe) so that they can anticipate all the events at school and at home. Let them talk to you about everything that they remember about the changes and how that makes them feel and what they feel they can and cannot cope with.

Enable them to choose, to as large an extent as possible, what they want to participate in and what they don't in the school calendar and respect their wishes. Be the best advocate for child that you can be and ensure that they get the Christmas they want too. Struggling is not a nice way to live at any time but at Christmas, when everyone else is smiling and happy, it must be even worse.

Bribery & Coercion

I think it is all too common that parents begin using Santa (and presents) as a 'carrot/stick' once Christmastime comes around. Children all over the Western world are worrying themselves half to death about their behaviour and whether or not they have been 'good' enough to deserve presents.

It is my firm belief that children will do well if given the environment in which they can do well.

Our special children are already doing their best all the time to manage without breaking down, so at Christmas, when there is so much more at stake, perhaps we should avoid pairing their behaviour with the promise of presents?

A lady told my daughter only the other day that if she 'screamed like that' Santa would hear her and she wouldn't get any presents. Not only was this extremely distressing for my daughter but it was horrible for me too! I do not use this kind of carrot and stick system in my house as a rule (I'm not perfect) and I have to say that to hear it come from a complete stranger was horrifying.

My daughter had been having a difficult (and busy) day and she was getting to the end of her ability to cope (several different shops, in and out of the car, hungry and over-stimulated) and this lady simply made things 100% worse. Sigh.

So, yes, try your hardest to not equate their behaviour with good/bad....they are trying their best.

Shopping/Trips

Please, please, please, unless you have absolutely no choice (or alternatively, they want to come along), let them stay at home! The world is a crappy place for those of us who shun noise, smells, lights, people, being touched and garishness right now! Unless your little one wants to plan a trip (and gets complete autonomy over what happens on that trip, including when to call it quits), don't make them come along.

Visitors

Keep the number of visiting friends and relations to an minimum, or, at the very least, let your child hide out in their room (or in the room that is most comfortable for them) and do not force them to socialise if they don't want to.

As an Aspie adult I can tell you, being made to kiss, hug and chat to people who are basically a load of strangers, is traumatic and exhausting and certainly not 'fun'!

Please be an advocate for your child and warn any visitors, that if they are bringing presents, to expect them to be unwrapped on sight if they are seen by said children! If they do not wish for this to happen then should wait for the opportunity to 'sneak' them in unseen when they can be safely hidden and not add to the anticipation that our children are already feeling with regard to unopened presents.

Also, tell these same visitors what treats/sweets/foods are acceptable in advance so you don't have repeated meltdowns over food.

If you can, decline any invitations that are non-essential. Visiting lots of different homes is stress-inducing due to the amount of unpredictability.

If you do over-do it our little ones will soon unravel and will not have a chance to regroup and recover, and will therefore end up not enjoying the best bits that Christmas has to offer.

Decorating

Allow your child/children to take whatever role they wish in decorating the house and tree (or not). If they are anxious about decorations perhaps put them up as late as you can in family areas and allow any other children to decorate their rooms so that they don't miss out.


I guess you may be curious as to how things are going with my brood in the run up to Christmas this year...well, let me tell you!

• I let them choose when to put up the tree and allowed them to dress it with me (spiking my OCD to the max let me tell you!).
• They are able to make a Christmas List the whole year through and add to it and take things away from it right up until December 1st ,when their lists are officially 'closed'. This is the same every year and it seems to work well and helps to avoid any anxiety associated with 'choosing' and being 'rushed' into decisions. (They also know that once December 1st arrives, there are no more 'incidental' treats as all my 'spare' money goes towards making Christmas awesome).
•  This year, once Dominik had decided what he wanted, I went and bought it for him straight away and gave it to him. He knows he will only have stocking gifts on Christmas Day now (and any presents that people have managed to sneak past him) and this has enabled Dominik to focus on everyday...the here and now...and not on the 'what might or might not be coming' in x number of days. It is the anticipation for him that is the hardest part of present receiving occasions, particularly Christmas, with the Advent Calendar, people constantly asking about his list, people coming to drop off presents and being offended when he wants to open them in the instant he sees them, and of course, people reminding him to be 'good'. So, as much as I get lots of 'tutting' and 'sighing' from friends and relations, I don't care. He is not spoilt. He is happy and calm. This makes for a happier and calmer time for us all but especially for him. Phew. 

I have implemented all of what I have listed above and, touch wood, so far, this has been by far and away the most amazing build up to Christmas there has ever been in my house.

It is a magical time of year so here's hoping it is for all of your families too.

Merry Christmas!

N x

Holiday Review

So, back in January, after a year of hard saving, my mum and I finally booked a holiday to Portugal. Albufeira to be exact. For me, the three little ones and her.

Now, those of you who have been blessed with the challenges of having special needs kiddos will understand when I say that finding a holiday that met all of our needs was not easy! Firstly we needed to fly from a local airport (Luton for us), at reasonable flight times (no red eye flights), with a shortish flight, at a quiet time of year, to a secluded, secure resort with no horrendously long transfers.

Long gone are the days when I can just walk into a travel agent, ask what they have available within a certain price range and just go with it! Oh no! Now it is a military style operation! However, all that being said, it worked out almost perfectly!

We booked with Thompson in the end. We chose a private villa with a pool (not too deep and not too big), a short walk from a beach, close to amenities, with enough room for 8 people across 4 bedrooms! We also booked a hire car. This is not the cheapest way to go on holiday and it is the first time that I have ever been on a villa break but I was not disappointed.


Before I tell you about the holiday, let me tell you about some of the things I did to prepare the children.

We went swimming a lot!
We looked at pictures of the villa and aeroplanes (toilets and all) a lot!
We did dummy runs of the airport procedures.
We bought chewing gum.
We bought tablet computers.
We bought ear defenders.
We bought comfortable slippers for Dominik as he refuses to wear shoes.
We bought headphones.
We bought boiled sweets.
We bought travel games.
We agreed who would sit near the windows in advance.
We agreed who would sit in the front of the hire car in advance.
We took drinks and snacks.
We checked in online.
We visited our homoeopath for calming remedies.
And finally we booked disability assistance.

Ok, the holiday!

The kids were obviously very excited and they are all old enough now that I can't bluff about when an exciting event is going to occur so I was prepared for them to have trouble sleeping the night before our 8.20am flight. We left the house at 5.45am with bleary eyes and butterflies in our tummies (mine were obviously for totally different reasons than theirs). They were sleepy in the taxi so were quiet and calm but as soon as we arrived at Luton they woke up! The fresh air, the noisy planes, the busy airport brought them all to attention!

We went straight to baggage drop to request our disability assistance. Well, there arises our first 'bump'. There was no record of the request! The lady at baggage drop tried her best and did manage to give us priority boarding which was something, it did not however help us navigate security!

Security was by far the most stressful part of the Luton portion of our journey. The queues were long, hot, slow and boring! My eldest child, Dominik (aged 10) could not bear the proximity of all those people and to make matters worse, he was asked to remove his ear defenders. :-( He did comply but it was incredibly stressful for him and he needed to sit down quietly and catch his breath before we could move forward through to the departure lounge.

I guess thankfully, the security process was so slow, we had no time to do anything apart from grab a quick snack (Krispy Kreme doughnuts) and head to our gate. The gate was a fair walk away but the promise of the aeroplane kept us all moving.

We did get our priority boarding...well, kind of....if you class it as being put on the bus first and then having to wait for it to fill up and then moving to the plane with everyone else!

We boarded the plane and found our seats (no problems there), we settled in for take off (no problems there) and we enjoyed a completely stress free flight. Yay! :-)

Once we arrived at Faro, things started well. No queues at Passport Control and straight through to baggage collection. Hmmm, well, baggage collection was a 40 minute wait. It is now 11.15am and hot! We don't have any more snacks and we have run out of juice. There is nowhere to buy any so my mum and I are wishing the bags through quickly! They eventually arrive and we move through to Arrivals looking for our rep.

We find her and discover that we need to get a bus to the hire car shop. This was unexpected. We were expecting to just go to a desk, pick up the keys and away we go! Nope. The mini bus can only hold 8 people and there is only one running. We can't get on the first one so we wait approximately 30 minutes for the next. Sigh. Hot, hungry, tired, thirsty children abound. No distraction is working now as their tablets are all out of batteries and they are simply too excited to be calmed. They run up and down, scream at each other, play in the wheel chairs (oops) and generally annoy everyone.

So, we arrive at the hire car venue and the wait is another 40 minutes (and a ridiculous amount of  hidden costs) before we get our car.

We get in our car after the children have let off some more steam (playing hide and seek, shouting through traffic cones, chatting to random strangers and screaming about how long it is taking) and we're on our way.

And you guessed it, we get lost. :-( A journey which should take 30 minutes takes closer to 1 hour and 30 minutes.

We're all still hungry, hot, thirsty and tired but we do make it to the villa at about 3.45pm. That is ten hours travelling. Exhausting to say the least!

But so worthwhile once the kids threw themselves into the cool pool and started their holiday!

The first afternoon was trouble free but by the time it was dinner time things were a bit fractious! I guess the exhaustion set in and everyone had a short fuse. Needless to say, we all had an early night!

Rather than  ramble on about each day, I am just going to talk about notable events.

1 - Day three was tough. Dominik had realised that there was no internet in the villa, that he was miles away from all that was familiar, that mosquito bites are annoying and that it was warm in the sunshine! He went to bed after lunch and did not wake up until it was dinner time. This is his was of coping with large amounts of stress and sensory overload. I first noticed this defence mechanism when we travelled home from Peru. As soon as we got on the plane for the 13 hour flight, he went to sleep and slept the entire time! The trauma of leaving our home, his dad, the first, internal flight and the 24 hour delay in our leaving (a whole other story!) sent him over the edge...the same happened in Portugal. He simply needed to recharge and regroup. Such an important and valuable skill for all children, not just those with special needs.

2 - We did not force Dominik to come out for dinner with us every night and my mum and I took it in turns taking the little ones out for dinner. We allowed them to choose where and what we ate at all times.

3 - The middle of the week was by far the best section of the holiday. They were all confident in the pool by now and were able to swim a few lengths no problem. They understood the sun cream drill! They had their water toys (dive sticks, snorkels, lilos, goggles, etc) and were enjoying playing all the different challenge games we could come up with (running across the lilos, swimming under the lilos, standing up on the lilos, forward rolls, backward rolls, hand stands, how many people could fit on a lilo and the list goes on).

4 - Dominik had one major meltdown on the Saturday afternoon. I think by now he was tired and ready to go home (we left early Sunday am) as he knew it was close. I think this is down to the idea of transitioning again. He had just gotten used to it and now it was time to leave. He was very emotional after the meltdown had ended and he was cursing his Aspieness openly (which he rarely does). We talked about it for a while and he eventually agreed to come out to dinner and we all had a brilliant last night. I am SO proud of his self-control, his stamina and his willingness to try again.

The journey home was completely incident free and quite nice really! We were all ready to leave and we were looking forward to getting home!

Now we are home, life has been nice. :-) The children are loving having their rooms and toys and consoles back. Dominik is loving having the internet at his fingertips once more! And I am glad to be back in my own bed.

So, if you're thinking of taking your special kiddos on holiday....go for it! It was totally worth it and I cannot wait to do it again!

Just remember: preparation, patience and praise!

Thanks for reading.

N x

Welcome to my first blog as an Avenue Mum!

So, how did I come to be writing a public blog?!

At the beginning of 2014 I was introduced to a (somewhat) local charity which focussed on providing parenting courses and offering support services for families with children on the Autistic Spectrum and with a diagnosis of ADHD. I was excited to go along and meet the team and I was very much hoping to be able to lend a hand in some small way.

Well, as it turned out, the charity and I were not a great fit (my Aspieness being partly to blame!) and the relationship did not last long.

As time passed, I became desperate to share some of my knowledge with those who most needed fresh ideas so I began looking around to see what else was out there.

And then, through a completely unrelated contact, I discovered the amazing Sarah P at The Avenue (based in Biggleswade, Central Bedfordshire) and everything fell into place. She is dedicated, thorough, hard-working, caring and determined and she was the one I wanted to give my time to. It was serendipity in action!

Sarah asked me to become an official volunteer and here I am! I agreed to work on The Avenue's already bulging information folders (adding what I know about alternative therapies/approaches, filling in any gaps in the home education information and providing an overview of PDAs (Pathological Demand Avoidance Syndrome)). I have also agreed to administer our growing yahoo group (ASPEE - Autism Support for Parents, Professionals and Educators) and of course, write a blog!

So, a little about me and my family.

My name is Natasha. I am an almost 37 year old Aspie single mother of 3 (soon to be 4) little ones. We live in Bedford, Beds with our cat (Sonic), dog (Tia), hamster (Cherry) and brand new snake (Strawberry).

My little ones are as follows:

Dominik, aged 10, ADHD, High Functioning Autism (PDAs), Dyspraxia, Sensory Processing Disorder, Central Auditory Processing Disorder, Giftedness and Misophonia.
Hannon, aged 7, NT across the board.

Lily, aged 5, High Functioning Autism, Auditory Processing Disorder, Sensory Processing Disorder.

Bump, 19 weeks. :-)

We have travelled extensively with two of my children having been born abroad (Valle, Gran Ray, La Gomera and Los Organos, Peru). We have been living back in England since 2010 due to a family breakdown.

My working background is in youth work, childcare and teaching and ever since I can remember, I have wanted to inspire little people to find themselves and to be the best that they can be. I completed a degree in Law and Criminology from the University of Sheffield in 2000. I have also lived in America and South Korea prior to becoming a mum.

We have always been an unschooling family! I never intended to send any of my children to school (and it turns out that that was an instinctive and profoundly massive decision on my part). We have a simple structure with a set bedtime routine. The rest of the days we work around our challenges and work on our strengths.

Over the course of time I will be sharing with you our highs and lows, and hopefully helping all you sceptics to see just how well life can work for those on the Spectrum if you are able to let go a little and trust in their ability to find themselves.

It's gonna be fun!

N x