The little things.

A few little things made me smile today and oh man, did I need to!

I just tucked everyone into bed and I wanted to share my joy at our achievement in this area! I'm sure all parents can empathise with traumatic bedtimes.

I used to sleep with Hannon and Lily in my bedroom. They used to have no set bedtime. They used to be awake until I could not be nice any longer! They seriously used to test my patience in the truest sense of the phrase and it was tough for me. I was a newly single mother of three, with two high needs children, trying to 'traditionally' home school a PDA child (!!!!) and getting used to a new-ish life living in Bedford, alone, dependent upon social security benefits.

So, I had to find a solution for bedtime before I lost my marbles!

Between us, we negotiated a new routine. Everyone in their own bedrooms. No electronics after 10pm. Read/play until they were tired if needed.

I set a new limit on food at bedtime too. I simply refused to make anything else after 9pm. That was when I 'clocked off' from the kitchen.

I think that because we came to this arrangement together, I was hopeful that it would work for everyone and give me back some of my much needed mental powers!

There were a few blips. Hannon and Lily shared a room for a while and then Hannon decided he wanted his privacy. Fair enough. We transitioned Lily into her own room over a week, reminding her every day it was happening and we hoped for the best! Then she used to sneak in her tablet for a bit (until Hannon caught her) but I think that was to ease in the change in her own way! No big deal.

Well, she doesn't even think about doing that now and she did so great!

They now both sleep in their own rooms and are in bed by 10pm.
No electronics.
No food.
No fighting.
No exhausted, grumpy mum!
Yay!

All consensual. All peaceful. All happy.

Hannon is now reading his sixth manga series (don't even ask how much this is costing because it is worth every penny) and has probably read them all several times over.

Lily is reading whatever she can get her hands on but mostly manga, rhyming stories and poems that are familiar.

Harriet goes to sleep whenever she damn well pleases!!! Hahahaha! Yup, the baby has no idea that she needs to sleep. She is learning so much (and loving doing so) that she simply thinks that she has no time to sleep! Sigh. It is tiring but so worth it. Today she spotted a bumble bee in a book and screamed because she clearly recognised that she had seen one earlier in the day. We had chased one through the flowers in the garden. She can now sign 'milk', 'dog', 'finished' and 'monkey'. She is confident, beautiful, smart and completely charming! But, I'm biased of course.

And last but by no means least, Dominik.

Dominik has found new life since we began brushing (to release all of his retained infant reflexes). He is currently focused on his comic dubbing (and some singing) and is even auditioning for parts in other people's comic dubs.

He has wowed me with his ability to learn new skills. He has learnt to use programmes such as: Audacity, Synthesia, Movie Maker, Paint Tool Psi (sp?), Dropbox and probably some more I've forgotten, in a little over a month!

He is researching information about microphones and sound proofing and is asking for equipment for his not-too-distant birthday. He is truly happy and satisfied. He is drawing on a graphics tablet that Lily let him have (she really did!) and improving so fast. He is barely gaming at all. He is making new friends daily, He has stopped obsessing over how many views his videos are getting on YouTube. He is asking about punctuation! He is also teaching himself how to play the keyboard! He is just enjoying life so much. I am not sure I ever thought I would see him like this. Melts me.

And what about me I hear you ask!

Well, I've been shit! I know!! How is that possible?

I think what happened is that life got a bit 'quieter' (with all the kids doing so well) and then my world came into focus for the first time in a very long while.

I've struggled to reconcile being alone if I'm being completely honest with myself. I am angry and disappointed that those who undertook this journey with me are no longer there beside me.

I am bereft at the reality that my own mother is not offering me some extra support right now given that she was with me during two recent Dr's appointments where they both said that ideally, I should be in hospital.

However, I've started to feel a little better and am slowly leaving the fog behind. That is mostly because of my smashing friends and my growing support network.

Ok, I know these groups can't do anything practical on the kind of scale that I actually desperately need and want (a few days off), but they can listen, console, empathise, advise and perhaps most importantly, make me laugh. And that is what they have all done in their own ways.

It really is the little things that cumulatively make the most difference in normal, daily life.

No, my mum has not offered to give me a few nights off (shame really given that I have had only 7 in 12 years) but, my days have become less dark because there really are people out there who do care about me.

I know there are, because they tell me so.

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