Problems of an Autist!

Today, Dominik saw the physiotherapist for a progress report and he has been discharged! 

This is as a direct result of his dedication and resolve. The improvement seen by us (and confirmed by Sebastian) is remarkable. He has a normal bend at his ankle already (the surgeon was worried that he would not even be able to get it to 90 degrees, let alone exceed it!). I am so thrilled for him. He is elated. Genuinely happy with a real world achievement. Properly proud of himself. For a person with PDA this is a massive accomplishment. 

He has finally dedicated himself to something and it has PAID OFF! No begging. No bribing. No threatening. Not even any nagging! 

He is finally seeing what I have known was there all along...huge potential. He told me himself that he has had a massive confidence boost. 

This operation was a catalyst for him even though I was so angry with myself for letting it happen. Ultimately it seems that it was for the best. 

It has provided the ideal test for Dominik. His well-being and quality of life were truly on the line and he rose to the challenge in a super-human way.

Keep the faith lovelies. <3

And now, on to Autist problems!

Because Dominik has now recovered (and exceeded expectations!), I need to book our rifle shooting classes! 

(I am sure I can almost hear the hysterical laughter coming from fellow PDA warriors!)

In writing the email (because I don't do phone calls) I became acutely aware of the reality of Dominik and people and ammunition all in the same place in real life. I'll be honest here, I'd have chosen pretty much any other sport/hobby/activity first. 

I intended to write a standard enquiry email but it became what I am sharing below. It includes some pertinent points and I'm proud of my advocacy...I think. 

And therein lies the Autist problem...was I too honest? 

Is writing an email like this a good idea? 

Have I prejudiced them from the outset? 

Should I have let him try? 

Urgh. This is so confusing for me and I have no idea if it would be confusing for a neurotypical parent! 

Here's the email

"Hi, 

My names Natasha.

I would like to bring my 12 year old son along to have a taster session with a view to both of us taking beginner classes.

I think it would be £60 each (plus the £5 each for safety and taster?) is this right?

My son has special needs (ASD) so I am joining him as his carer. I do not however envisage any problems outside of over-enthusiasm and possibly over-confidence!

He has just had an operation on both of his Achilles Tendons and as a result, can now stand properly. on his flat feet for the first time since he was around 8 year old. 

His amazing management of the surgery and his recovery are the main reason we are coming. It is the only hobby he is willing to try and I’d love for this to be a success.

He is home educated so is used to being self-directed. His only other 'class' has been parkour (free-running) and he was forced to stop that due to his shortened Achilles tendons which meant he could not balance well enough to progress.

He is a massive fan of weapons in general as a result of his love for COD games and other first person shooters.

To give you an idea of his dedication to the subject, one of his last full days out was to Wrest Park for a St George’s Day event. He was able to identify pretty much every weapon he saw in each 'zone'. It was so much fun and he impressed those who bothered to actually listen to what he was saying/asking.

Please confirm that it would be ok for us to come along, or if you think there may be a different way to give him (us) a taster, I’m happy to hear any suggestions?

Finally, would you please confirm/suggest dates as soon as possible so I can plan things accordingly.

I look forward to hearing from you,

Happy New Year,

Natasha"

Did I over share? Did I advocate? I don't know but I'm looking forward to finding out.

In other news, Harriet is still a climber and will be visiting a local climbing centre this month, Hannon cannot decide on any new classes this term and has refused climbing, kayaking (because of the day of the week) and archery. Lily is devoted to roller skating and is improving fast. We have a bet on now that if she can beat me in a race before Easter she can have a new pair of skates of her choice. I cannot wait to see her skills develop. Lily is also learning Spanish and will continue with Beavers and Cheer-leading. 

As for me, I'm itching to begin a career. I just cannot decide which area I want to focus on. I am torn between gaining a TEFL qualification (so we can travel again) and following my heart towards working with families and children and young people. Such a big choice...could I manage both?!

Enough from me. There is a sleep-over here tonight and as you can imagine, there is not going to be any sleep happening!

Happy New Year. 

May 2017 being you joy, health and love.

N x

PS - 

It's here again!

In what seems like the blink of an eye, it's Christmas time again. This is my third Christmas as a blogger! Where did that time go?

So, this year, dare I say it, it almost feels calm!

None of my children have asked for very much this year and I think this has had a large part to play in alleviating the usual stresses! We are all very excited and have even agreed that we will put up our decorations a tad earlier than usual. Cannot wait til the weekend!

Dominik, of course, has had his main present already and given that he hasn't asked for anything else, the rest will be sure to be a pleasant surprise.

I should probably fill you in on life after surgery! Dominik had his casts removed last week after what felt the longest six weeks of our lives! He hated using the commode almost as much as I hated him using it to be honest! So glad that is behind us now.

The first day he was incredibly nervous...refusing to put his feet down and insisting on using the wheelchair after a week of not using it at all! We had booked to go and see Fantastic Beasts that night and I optimistically, didn't expect to be using the chair but we had to in the end!

The second day he hobbled around with his crutches mostly using them as weapons, which was a bit trying.

But, on the third day, he put them down and began to walk unaided! He is waddling (a little like a penguin) and refusing to bend his knees but the surgeon assured us that within three months he would be much more confident and competent. I guess the irony is that he is point blank refusing to stand up on his toes! He simply will not do it. Hope that's a good sign.

We saw the neurodevelopmental therapist after the casts were off too to check on the progress of his retained reflexes and that was also great news. His pupils are showing almost no stress response now and he was able to do the exercises far more easily than ever before. His back has now loosened up which makes every single movement easier and far less stressful for his entire body. We have been advised to seek a physiotherapist (not provided by the hospital, urgh) and a cranial osteopath so the pathway to wellness continues.

Back to Christmas!

Three years ago when I first began writing this blog, I wrote a long and detailed post about all the things I put into place around this time of year to make life less stressful and anxiety inducing for Dominik but here we are, three years on, and those measures, whilst still being on stand by, are no longer essential.

I am going to copy and paste some of my tips here from the original article in case they are of use to any new readers.

"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?) 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 your 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 is even worse.

Bribery & Coercion

I think it is all too common that parents begin using Santa (and presents) as a 'carrot/stick' once Christmas time 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. A trip such as this can take days to wind down from even if it goes well. If it goes badly the guilt and shame and self-reproach from us perfectionists is almost too much to bare.

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, and the pressure to like them.

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 and frequent transitions.

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 have added a few tips and tweaked this a little but it is basically the same as it was in 2014.

I'd like to take this opportunity to wish you all a happy, fun and joyful Christmas.

Much Love, thanks for reading,

N x

Responsibility.

I've been composing and erasing this blog post for about two weeks now and it just hasn't really come together at all so, I'm just going to type and see what happens.

The second and third month of this year were shockingly stressful. I don't like to write about my life when it is going off course because I try to be positive and uplifting. I cannot write about anything other than what is actually going on in our real life either so consequently, when I don't write, it's because things are shit.

Here's a brief synopsis of what happened -

 - My car died a death.
 - My daughter was refused DLA because our incompetent Dr lost the form he was meant to complete and return on our behalf.
 - My son has seen a private podiatrist who recommended an urgent referral to an orthopaedic surgeon with regard to his tip-toe walking. This has still not happened as I type.
 - The stress of the potential surgery has sent my son into anxiety overdrive.
 - My daughter has been without her usual activities due to a complete lack of funds so has been equally as anxious.
  - Baby has started walking and is getting 8 (yes, at once) new teeth so is not sleeping...at all. Ever. (Well, obviously not, but you know what I mean.)

I think that is about it but it was more than my Aspie self could manage.

It got me thinking about responsibility.

Sometimes it all just overwhelms me.

The very idea (reality) that I have four little people who rely solely on me for everything in their lives is just staggering and terrifying. When life takes unplanned turns I feel so out of control and panicked that I simply freeze. I just cannot function with any real fluidity. I am normally organised, present, confident, open, engaged and happy. But when I feel out of control, I am distracted, confused, sad, angry, impatient and detached.

The kids and I have a very open relationship so they are aware of all the things that are going wrong but that probably doesn't help when I am once again answering the question, "What's for dinner?", with "I don't know. I can't think about it right now."

As it stands, the DLA for my daughter has been reinstated. Phew.
The car has been scrapped and replaced. Phew.
The baby is beginning to calm down and isn't quite so keen to be on her feet 24/7 exploring her new world of freedom. Phew.

So, that just leaves the potential surgery for Dominik. Well, I took a step back, thanks once again to my guardian angel friend, Felicity, and I don't think surgery is in Dominik's best interests after all.

Felicity's timing is nothing short of miraculous. We don't speak that often and we see each other even less, but when we do make contact, the Earth moves and my life, and the lives of my children, change for the better.

I spoke to Felicity this weekend and began to tell her about the nightmare that has been trying to get seen by said surgeon and she immediately said, "Stop. No." I was relieved when she did because I knew that meant she had a plan! Thank the universe!!! This responsibility was going to be shared. Hallelujah!

I was so nervous about the surgery route anyway (because it goes against everything I believe in in terms of health and well being) and if anyone would know of a better alternative solution (permanent solution, not temporary, surface level, band aid), it was Felicity.

Now, back in 2012, I know she talked to me about what we came to discuss on Saturday, but it had slipped from my mind. It happens. I'm not perfect. It is back in there now though and I'm ready to tackle it! As is Dominik for that matter (which is something else Felicity and I discussed at length).

The alternative to surgery is something that goes by several names, but the most common I have found is, retained infant/neonatal reflex therapy.

It is a lot of information to take in so I am now going to link you to (and quote from) what I found to be the most helpful webpages.

First, a visual, for any Aspie mums like me who need a good visual synopsis before they begin!

Here is the Wikipedia page.

"Primitive reflexes are reflex actions originating in the central nervous system that are exhibited by normal infants, but not neurologically intact adults, in response to particular stimuli. These reflexes are absent due to the development of the frontal lobes as a child transitions normally into child development. These primitive reflexes are also called infantile, infant or newborn reflexes."

So, that is what they are.

Here is an amazing summary from a lady called Sue Hyland. I honestly did not find a better summary than this after many hours of research. 

I am going to simply copy and paste the sections that are most relevant to us. Please do visit her website linked above for the full text. It is brilliant. 

"Moro Reflex

Sudden head movements on a vertical plane, that is forward and backward, will initiate the Moro reaction. This reaction is a rapid extension of the limbs, with a big inhalation of breath, followed by contraction of the limbs and a cry. This reaction is initiated by the Moro reflex and is perfectly normal from about 9 weeks after conception to about 12 weeks after birth. It is a reaction to potential danger and occurs as a result of both nerve/muscle stimulation and chemical release."

...

"Should this reflex reaction be retained after it’s normal time of inhibition then not only willunwanted muscular reactions occur but so will the release of the chemicals, every time the head is jerked backwards or there is a sudden visual stimuli or unexpected loud noise. Obviously these will sometimes auger danger, when a full blown flight or fight response is required, but frequently they do not. "

...

"3 or more of the following are the kinds of behaviour which suggest a retained Moro:

Mood swings

Unexpected sudden changes of behaviour

Aggressive outbursts

Withdrawn timidity (either of the last two can exist as major characteristics or they can alternate)

Tendency to observe others rather than join in play

Craving for sweet things

Snacking, inability to eat a whole meal

Dislike of rough and tumble

Dislike of fairground rides

Dislike of bright lights, headaches

Dislike of wind in face, water in face

Panic attacks

Distractibility

Copying difficulties

Perceptual difficulties both visual and auditory

Nervousness

Need to be in control

Dislike of change

Dislike of loud noise

Over sensitivity to particular frequencies of sounds

Over sensitivity to textures, labels etc

Sensitivity to a range of high frequencies normally outside human hearing (so that cars can be heard miles away, lift mechanics emitting a high pitch whistle)"

So, that is just the first reflex in the list and as I continued to read them, light bulbs were switching on all over my head.

Here is just one more, perhaps the most relevant for us.

"The Grasping Reflexes

The Grasping Reflexes develop and inhibit at about the same time as the Moro, which in itself is really a grasping reflex, and can be divided into the Palmar, Plantar, Rooting and Infantile Suck Reflexes. They are therefore frequently found if the Moro is retained, usually all being present."

...

"3 or more of the following would lead you to suspect retention of these reflexes:

Poor pincer grip between thumb and forefinger
Immature pencil grip
Over sensitivity on the palms and bottom of feet, very ticklish
Poor knife and fork grasp and control
Difficulty with cup handles
Poor running skills
Complaints that shoes hurt especially over toes
Tripping, falling
Poor saliva control, dribbling, frothing at mouth corners, spitting whilst speaking
Over sensitivity around and in the mouth
Messy eating
Dislike of certain textures of foods
Tendency to suck rather than chew
Noisy eating
Inability to close mouth on eating
Narrow high arch to Palate
Poor tooth alignment and the need for orthodontic work
Poor control of mouth for speech
Poor co-ordination of breathing and speech
Retained thumb, jumper, pencil, hair sucking
Poor bladder control
Possible reflux from the stomach"

As you can see, there is much food for thought here. Domink has at the very least retained these two, but I suspect he has retained more.

Felicity recommended someone who is an expert in this field, and whilst we may not be able to go to him for the therapy itself, we will be going to see him for the initial assessment. It takes on average, a year to eighteen months of therapy to release these reflexes, but by all accounts, once they are released, the progress and improvement in the individual is life-changing.

I just cannot imagine how much happier Dominik would be if he could fully participate in his life. He is often so timid, afraid, cautious and in pain to even begin to think about taking part in the activities he would like to, but this might just change all that. 

And with it, his heels might actually feel the Earth. How great would that be? 

I'm going to sign off now and hope that what I have written is coherent and helpful.

And, to all of you out there feeling the weight of your responsibility; don't worry, you're doing a great job, you're not alone and remember, it is only temporary and it will get better.

Best,

N x