Update on the neurodevelopmental therapy.

I thought I should write an update on the 'brushing' therapy.

In case you're not up to speed, my oldest son Dominik (PDA, SPD etc) had been receiving neurodevelopmental therapy since June 2015. We have been visiting Bob Allen in Windsor roughly every 6-8 weeks. Dominik has been slowly releasing his retained infant reflexes (please see Bobs website or Sue Hyland's blog for an excellent synopsis of what these are) and today we found out that we are on to the next stage in this process. We no longer have to brush twice daily (on various different body areas for a varying amount of strokes), but now Dominik has to take charge and complete one exercise per day which consists of getting in and out of one position. I think Bob called it the 'baby' position. The process will integrate Dominik's left and right hemispheres (brain and body) whilst also improving the communication between his upper and lower body parts. Dominik was confident that he could do this and I think he is even looking forward to it.

He was also excited to see Bob today! Bob is funny, charming, trustworthy and calming. He has a positive effect on Dominik and I think he might even care what Bob says to him!

Dominik is very proud of his progress and has even seen an osteopath (suggested by Bob) after being discharged from his successful physiotherapy sessions!

Dominik and I have been massaging his scars, brushing twice a day and doing exercises recommended by both the physiotherapist and the osteopath. As those of you with PDA children (partners/friends/parents etc) already know, placing any demand on them is difficult and could result in a huge meltdown depending on various factors, but for a boy like Dominik (who basically lives with no demands placed upon him at all), I was worried that this would be a particularly big deal!

When we left the osteopath with a list of 8 new exercises to do every day, I wanted to cry.

I'll be honest, my anxiety went through the roof and I felt so overwhelmed that I thought I was actually going to vomit.

Domink has been amazing when it comes to cooperating with all of these interventions but that does not mean that he will always be able to be that cooperative! I am hyper-vigilantly searching out the next source of 'too much' for him all the time. I am constantly anxious that the next request could be one request too many. It can be exhausting doing mental gymnastics at this pace. Kudos to all my fellow warrior mums.

Well, guess what? I'm proud (and more than a tad relieved), to say that he has been consistent in his cooperation and on the occasions where I have been reluctant/and or felt too tired or busy, he has requested his therapy and I have done it.

When something has true importance these children, (and adults) with PDA pull out all the stops.

PDA children value the truth.
They value quality.
They value authenticity.
External rewards are, in the main, disposable and transient and our children seem to instinctively know this.

When it is important to them (and they are intrinsically motivated), they will do it and they will do it to the absolute best of their ability and with the same degree of enthusiasm with which they undertake everything else that they choose to do! (I know...I wish he wanted to wash/change/brush his teeth/sleep too!)

The very qualities that make them so vulnerable and anxious and the very same qualities that will cause them to soar.
Tenacity.
Wit.
Intelligence.
Empathy.
Passion.
Knowledge.

I could go on all day but I won't. I'm sure you get the idea.

Dominik has started to find himself. I have evolved in my role in his life too. Perhaps I'm even finding myself.

Felicity Evans told me recently that these children (our children) are here to help us heal ourselves and our family trees through their energy. I have no doubt that she is right. Please do visit her website and especially take a look at the Resources page. It if fantastic.

Dominik is surging forward and he is pulling us all along in his wake. I am so proud of him.

There is one final thing I wanted to say:

I am currently looking for a family to volunteer some of their time to me so that I can develop my support and advocacy skills with a view to establishing a family support and advocacy business aimed at families living with PDA (perhaps this will expand with time but I dont know yet). I would love to meet a new family and see if I can help facilitate some positive changes in their lives.

Please do email me if you'd like to participate.

N x

An explosion of new learning.

I am astounded by the capacity my children have for learning new skills and developing their personalities.

Dominik has tonight told me how he recently advocated for a friend in need. He described himself using, 'intellectual language' and said that although he had been nervous and had lisped, he felt as if he had communicated his points really well. He felt that the person to whom he had spoken had heard him and was considering his/his friends position.

He followed that up with throwing around the bottom halves of his crutches (that have only previously been used as weapons!) in the manner of a juggler/baton twirler. He was surprisingly good! He could do a lot of stunts all of which he had taught himself. Now in search of juggling pins!

I think that perhaps the most beautiful thing he told me was that he actively tries to make me laugh! He said I have a very serious face and that it transforms instantly when I laugh. I told him I thought of myself as a fun person...and he laughed! We are all going to have more fun and laugh even more in 2017, I know it.

Since the year began, Harriet has said; bed, poo, boo, up and hot! Incredible changes happening for her too, Her self-awareness, empathy (yes, she really is empathetic at 23 months old so it must be possible), joy and love, know no bounds. She can crack any silence with a 'yeah' and she can soothe any tears with her small hug and gentle pat on the back.

Lily is now actively learning to skate backwards and she was joined today at the roller skating disco by her two cousins (and step-cousin?!) which meant the world to her. She was patient, kind and fun even when confronted with the fact that she was now effectively a lone skater, because I wanted to spend time with the (as yet) non-skaters. Cheer leading reconvened today too and given that Lily has been under weather and not sleeping, she met and exceeded her own expectations with her management of the whole day. So happy for her.

Hannon, I am finally going to submit, is Autistic too. He has been stimming a lot. He has been very insular and hyper-focused too. I have always known he has an ASD but right now, it is challenging for him to manage. I think that having acknowledged it is there, he is going to manage better though...as we all will I'm sure. Bless him. So emotional and confused. He is currently dreading returning to Cubs due to an incident and series of events that I have yet to share here so that is undoubtedly contributing to his sensitive state. He also still does not know what he would like to try this term...argh! Oh, and he is very focused on food.

And finally me! So far this year, I have begun adopting a paleo eating style, I've picked a yoga class to attend at last! I've begun my first cross stitch. I've picked up my Spanish. I've started having counselling, I am also researching the following subjects - 'screen time', violent and fantasy based play and cooperations vs competition.

Oh, and the children and I have started to plan some trips! A new soft-play, a climbing taster session, a shooting taster and a potential weekly Spanish meet with a Peruvian lady are all in the planning.

We've had a quiet couple of months, which we definitely needed after the whirlwind that was 2016, but now that is done, we're good to go.

N x

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

The operation and its aftermath

Dominik had his Achilles tendon lengthening surgery on Monday.

Time has flown by and I cannot believe it's finally done.

Dominik has also been to see Bob Allen for a third time to check on his neurodevelopmental progress.

So, Bob Allen...well, we learned that Dominik has developed (?) his Moro reflex a significant percentage already. The difference is clear to see for those of us who know him well. Some changes to note: he has spent very little time gaming, he has spent a lot of time making new friends and communicating with his peers, he has been experiencing friendships and is being exposed to many variants of family life for the first time ever, he is speaking more slowly, he is more attentive and, perhaps, most importantly for those of us who live with him, he is communicating his needs far more clearly thereby avoiding most meltdown situations.

Other than being slightly edgy, he did not have any significant difficulties in the lead up to the operation. His pre-op appointment was uneventful although it did highlight his Autism. During the appointment, we saw the play therapy lady and a Jr Dr. He spoke in a mumble. He answered all their questions whilst looking only at me. He stimmed. He span on the spinning chair almost continuously. He fiddled with everything in sight. He didn't have any questions and declared that I had told him everything already! He loved the teenage gaming room in the ward and was almost excited to have some time away from home.

I think it is worth mentioning that his siblings have been very gentle with him. They understand how scary all this is and they want to make his days as simple as possible. Last week, for the first time in months, Hannon played with him for the whole afternoon. Earlier last week he spent a significant portion of the day with Lily and Harriet and I spent some of last Friday with him. Dominik has been mostly nocturnal again though so we must take that into account I guess. Lily and Hannon wrote him an adorable card and I know he appreciated their care and concern.

We are now day four post-op and I am so thrilled with how things have gone.

He has had painkillers on three occasions since he came home. He has been having fun trying to navigate the house in his wheelchair (even thought it is not self-propelling). He has come to the table for meals. He is mindful of how long he is sitting for and happily asks for help to elevate his legs when he feels it is necessary. He is dealing with the 'pee pot' and his commode with dignity and maturity. He is excited by the thought of being able to walk 'properly' when the time comes.

We had an emotional morning before the operation as there was obviously some waiting involved before he was called down to theatre. He finally went down at midday. He walked there without issue and let them insert the cannula and wire him up without complaint, although he HATED the blood pressure cuff! He went under quickly and smoothly.

He was a little longer in recovery than I was expecting which was very scary! I was expecting him back at 1.30pm and was finally allowed to collect him at 4pm! Not the nicest experience that's for sure.

He decided that he was confident to stay overnight in the hospital by himself which was astounding to me. In fact, truth be told, he was far more confident of his ability to manage than I was! He didn't even flinch at the thought and when I arrived early the next morning, he was beaming and very ready to leave!

We saw the Dr and received our instructions for care of his cast and were ready to come home by 11am. We did hit a snag here when I couldn't get him in the car. It was the only time he panicked and shed a few tears.

I ended up leaving him there and going to collect the wheelchair and commode from the Red Cross and ordering a wheelchair accessible taxi to collect him.

Once we were home, well, it has been plain sailing.

All in all, my young man has exceeded all expectations (even his own) and has his gaze fixed firmly on the end result.

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

And 2016 gets off to a flying start!

Where to begin?

Happy New Year to you all. What a whirlwind this year has been so far. It's like someone opened a door way or something. 'Stuff' (for want of a better word) is just flying into our lives,.

It is breathtaking in its speed.

But first a few thoughts on Christmas this time around.

Aside from one event, it was brilliant. I can honestly say it was all about the things that truly matter. No one was that fussed about presents (although they all love their tablets), it was about spending time together and having fun.

We had very few visitors but the ones there were made the event all the more special. I do wish visitors would have a little more time for everyone when they came though, but at least they care enough to come and see us. I love you all and we appreciate your time,

One small request on behalf of the kids before I move on,. Please try to to show a little interest in what they've been up to! I know its not the same as asking a child who goes to school, but try anyway! I know they bombard you with lots of information and that its mostly about things you've never hear of or things you have no interest in, but, well, ABC's  and mental arithmetic don't count as interesting either really if we're honest. What I am trying to say is that we should simply celebrate enthusiasm and happiness whatever the cause! My four would love to show you what they've been doing. They LOVE what they all do. Please, try to reserve judgement and witness what they are all achieving, even if it isn't something 'mainstream'. I think it is all the more impressive because it isn't! The 'mainstream' is exactly that...it is what most people can learn during the course of their everyday lives. It is the majority, the ;normal', the (dare I say it) mundane. Listen and watch what kids have to show or tell you, whoever they are. Listen even more carefully if they are passionate about it. This is where the true learning experience happens. Especially if they are passionate about. It is important to them. We ask children to pay heed to what is important for us (and society in general I guess) a lot  of the time but sometimes perhaps, we should spend some more time listening to them.

So, yes, where was I...The New Year!

Here's some of what has been going on. Obviously keeping a positive slant on it all. I don't find focussing on the bad bits helpful because they would then over shadow the progress and I don't want that! There have been some tough moments, of course, but what follows could not have happened as it did/does, without them. Every experience is a potential learning experience.

 # Lily!

Lily is pretty much reading fluently, and she is reading words that she doesn't know and they rarely pose a significant problem. She took to the 'hoverboard' like a duck to water. (No, it hasn't caught fire.) She was an amazing hostess at her own Birthday Party. She took to ice-skating like she was born to do it. She is a born 'mover'. Not sure where that will take her but I am sure it will be far. Her innate talent and the ease with which she learns new skills is inspiring. Her vocabulary and maturity also continue to amaze me. For example. we had our 11 year old dog, Tia, put to sleep in December and Lily chose to stay with her until the end (with my mum). Just incredible. The vet tried very hard to guilt me into removing her but I gave Lily the choice and respected her decision. She was amazingly pragmatic throughout. She was a little sad, but, she was also completely accepting and full of love. I am so proud of her. What an amazing human being. She has only spoken positively about Tia since she died and seems to be happy with the desicion she made. (As are Hannon, Dominik and I and we chose to leave.) Love you Lily.

 # Hannon

Hannon it seems is a GAME MAKER. He spends significant periods of time creating and refining various different game ideas. He researches his options. He learns from other people. He experiments with different ideas. He and Lily do 'voice-acting' for their own characters too! He also never. gives. up. His tenacity is awe-inspiring. He is so determined to succeed. It makes me so proud. He tampered a bit with magic over the holidays (and engineering) but has left those behind for the time being. He has also found the time to read at least 12 books since November and it is staring to get expensive!!! But, I obviously cannot complain.. It is simply a running joke.  I even went and bought him his own bookshelves and he is actually using them! Yay Hannon. I love you.

 # Dominik

Dominik has made some massive strides too. He has completed over a month of daily exercises designed to lengthen and strengthen the muscles etc in his lower legs. These can be painful and the demand from me is a daily one so I would never have guessed he would have this much staying power. He is giving this his all. I think a physiotherapist would be able to support him now he knows he can do it. Great progress.  He has also showered twice on the same day that I have asked him to do so! (A miracle for a child with PDA and SPD.) He has also been letting me brush his teeth...not everyday, but more than ever before! He continues to improve his sketching skills (with a new rubber and pencil sharpener) and practices almost daily. He has rediscovered his love of music and all things rhythm based. He seems to be 'pitch perfect'. He can whistle the tune his tablet whistles when he gets a notification and there is no discernible difference. He almost beat me at Just Dance too!!! (Unheard of!!! Along with Mario Kart, Just Dance is about the only other game at which I can do well!) He found something called a Lauchpad and is desperate to try one out. We discussed it and after having talked about the benefits of him having one of these, we actually discovered that he needs (and would prefer) an electric drum kit into which he can programme all the sounds he likes! And, the boon, we don't all have to listen to his creativity. (This will build on all the times we spent playing with Synthesia and a couple of other rhythm/music based visual games (DJ Hero being another)). I cannot begin to imagine what he will create but we are both itching to find out. I also think that the drum kit will have many more benefits...not least of which will be to further strengthen his legs and improve his physical health. His motor skills will also surely take another leap forward as will his proprioceptive skills I should think. This is just brilliant! Alongside his parkour and his rekindled love of creating his own smoothies really bodes well for the future! So proud Dominik, so proud of you. Mwah. Love you.

See, I told you 2016 hit the ground running!

And now for Harriet...well, that would be an essay! She's the best! You'd have to meet her to truly appreciate her awesomeness though. Suffice it to say, she LOVES to climb, point, bite and smile. :-P

And finally, here's my favourite (of favourite ever) picture of our Christmas 2015.

Too. Funny.

And no, Hannon was not like that all the time.

And a dear friend made all the hats for us. Thank you Cara!

Oh, and, the photo was taken by a lovely friend who spent Christmas Day with us. She also brought her beautiful shitzu -yorkie cross. We had such a lovely time.

It was certainly a Christmas that we will remember as being full of smiles and love.

Oh, and we did buy a few family games but by far our favourite is Sushi Go! Lots of fun. Deceptively simple, tactical card game that is hilarious and sneeky (think Uno I guess)!

Happy New Year!

N x

Christmastime!

Just wanted to drop a quick note to you all to wish you a peaceful and love filled Christmas.

This year the build up in our house has been unusual to say the least.

I opened their lists as usual, after Halloween, and closed them at the beginning of December. I had one request from Hannon and that was it!

It seems that this year, my kids achieved the ultimate goal of being satisfied with what they already have.

If someone had ever even suggested to me that my children would have empty Christmas lists I would never have believed them. But, this year, they did and it has made me very happy.

Domink, who usually struggles to hold it together at all at this time of year is positively chipper! He tried ice-skating this week (!!!), has been fully participating in his parkour classes and even having an extra half an hour, one-to-one tuition every week (and loving it)! He has been exercising AT HOME DAILY!!! (Those of you who have less than athletic children will understand the enormity of that one thing alone!) He is not fighting it. He has not refused to do them once in over a week! He is even beginning to notice his appearance changing as he slims down, livens up and feels more positive about his self-image for the first time since he was a small boy.

He has only asked one question about what Christmas presents he is going to get and I answered it. He has yet to ask any more. This is bordering on the twilight zone right now!! He hasn't even been opening his Advent Calendar!! Incredible.

I had no idea that this was possible for Dominik. To see him happy, content, cheerfully optimistic, participating and enjoying life is the greatest feeling ever!

Although, one other thing does come close! Some of you may remember that last year he drew me a Toothless (from 'How to Train Your Dragon'), well, this year, he bought me one!!! He didn't even make me wait until Christmas to have it!! He bought it for me with his own money and at his own suggestion. What a feeling this is.

So, I guess I just wanted to say that working with your children, allowing them their space and thinking time, really can elicit great changes. I have truly practiced gentle parenting this year with great success. Harriet I think has been largely responsible for that blessing. And, as a result, my son (in particular and only highlighted because of this particular blog post) is growing into a delightful young man. He is always searching for ways to better manage himself and identify his own needs and he more often than not, does the right thing what given the chance to do so. What a little star.

Merry Christmas & Happy New Year everyone.

On to 2016!

N x

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

Building the New.

This encapsulates my life philosophy. I genuinely believe that my efforts are best placed in creating new 'stuff'. Be it thoughts, people, ideas, relationships, habits etc etc. I have never described myself as creative, but it turns out that I am! I only want to create new 'systems'. It thrills me. I think that is why the complex and completely meaningful relationships in my house fascinate me so much.

Anyway, during a conversation about school choices, I had these thoughts and things to say about what is going with us 5 at the moment.

Here is what I wrote. I wrote this to a friend, before I decided it would be a blog post so it is as honest as it gets!

Enjoy!

"Hey, So, which one did they choose? I'm dying to know! I used to work in all of them many moons ago.

They made a really big decision and it sounds like they have been empowered by the experience. It reminds me of me! When I was that age I had the choice of going to Bedford Academy (John Bunyan as it was) or Dame Alice (now merged with Bedford Modern but still a private school). I chose Dame Alice because even thought there was an exam and I would be going completely alone, it was still a safer, more predictable, more academic choice.

If I had gone to John Bunyan with my 'friends' I cannot even begin to imagine the different route my life would have taken.

It still wasn't easy and there were still mornings when my mum would have to sit in the car with me outside school and wait for me to stop crying and calm down enough to actually go in! But, go in I did, most of the time.

I switched again for my 'A' Levels to go to Sharnbrook. Now that transition was far from easy. I was back among all the kind of people who bullied me in my middle school!

{I edited out two paragraphs for privacy.}
We seem to be pretty busy. I'm not coping well with it but we are doing it! We have never had so many organised activities (4 per week) and trying to fit in 'quality' time is more difficult because I have so much more to do. Trying to get them all to comply and enjoy is hard going!

Dominik has a wobble every week at parkour. He has a meltdown within the first hour every week guaranteed. It is heartbreaking but he hasn't given up yet and is just beginning to see an improvement so I honeslty hope he decides to keep it up after half term. Feels like a test!

Hannon is coding his own video games which improve by the day! It is incredible to watch and he surpassed what I had learned in less than 24 hours!! He has taken to it like a duck to water. He has about 5 different pieces of game making software on his pc but this is the first one that has really worked for his learning style. So, after about 4 months of trial and error (and money!) he has finally found his niche...and it was free! lol [ETA - He is even drawing all of his own pictures which is a first as he doesn't even voluntarily write with a pencil. Whilst the rest are drawing, he has always resolutely refused. Until now! He is experimenting with drawing on the computer and even 3D drawing like he never could in real life. I think he has overcome a big fear in doing this. He even said he thinks he might start trying with a pencil in the future. I am so proud of him taking charge of what works for him. Lily has even let him borrow her graphics tablet in case he wants to try with a pen.]

Lily is reading like a pro! She is just flying through it now and she is even asking to learn Spanish! We wrote down all the ways I could think of to say 'I love you' in different languages last night. It was great fun, 

Although, to coincide with Lily's rapid developmental spurt, we have also had a complete regression to the aggression and violence.

I have come to accept that it is the price we pay for big leaps. It puts a lot of stress on her system and she falls apart a little at the seams. We're all doing our best to support her..well, except Hannon who mostly wants to torment her a little more. Grrr.

And Harriet! She is awesome. Teeth 9 and 10 on their way. Crawling brilliantly (although more of a drag than a crawl...think legless zombie!) and she has just started cruising the furniture! I had forgotten how scary this bit is but she is doing marvellously and takes the odd tumble with grace and humour! She can almost stand unaided and she is learning fast how to fall onto her bum! She is also loving any food you give her to try. Thanks goodness! I do not have time to cook yet another meal! She loves being wrapped and even tolerates my failures and re-wrappings with fun (that is, if you call having your ears bitten at all 'fun').

Me, well, I'm exhausted and was on the edge for a few days. My mum stepped in and gave me an afternoon last week which was my first one since Harriet was born. That is 8 months! So, well, it was great and I am ok now.

Well, now I've bored you with an essay (sorry) I'm going to blog it in an adapted form if that is ok with you? I won't mention you by name but I will say how the blog came about.

PS - Thanks for asking how we are. You'd be amazed how few people actually do and I sometimes forget that great things are going on here, even when I am too exhausted to fully appreciate it all. Being able to write it down really helps.

Big hugs xxxxx" So, there you have it. That's a short summary of how we are all building and creating in my house! Sorry I haven't blogged sooner. It's been a bit busy! I'm glad a friend helped me to make the time to blog today.

N x PS - I did my hair!

Summer so far.

Summer so far, aside from being a bit of a wash out, has been interesting!

Hannon, Lily, Harriet and I have made more than a few trips to Houghton House after discovering that it is brilliant for role playing games. The kids have really let loose and played Batman, Avatar and countless other chase games/shooting games/hiding games/mystery games and ghost hunting games. They have played for hours on end in the beautiful surroundings of Central Bedfordshire.

To be honest, I'm a bit worried that the local residents might think we are 'casing the joint' for some big job as we have been there so often, mostly at sunset!

But, wow, to have them voluntarily leaving the house and running around outside regardless of the weather has been magical and it is a nice reminder of why we love the Summer so much.

In other news, Dominik called the police to come to our house. Not so great. No.

He told the dispatch lady that I had 'tried to strangle his face' and that he was being assaulted. Sigh. I am more than willing to confess that yes, I did lunge at him (but that I lunged at him due to tripping over the end of his bed) whilst trying to take away his controller and headset in order to stop him playing a game which was causing him so much anxiety that he could no longer distinguish reality from fiction. Shit.

About half way through the call he realised what he had done and began back-tracking at a remarkable rate, but obviously this was to no avail. The dispatch lady explained to him that she had a duty to send an officer to our house.

Lily went into instant meltdown imaging the worst and fearing that I would be arrested and Dominik was almost suicidal thinking about the potential consequences.

The male officer arrived within ten minutes of Dominik making the call and he was professional, courteous and friendly to us all.

He listened to what we all had to say and took the time to explain to Dominik that what he had actually done was waste police time for what was essentially a fight with his mum over his computer game.

Domink was embarrassed and upset but handled it well overall. I was embarrassed and upset but also grateful at the speedy response and the understanding shown by the officer.

All's well that ends well I guess. I think Dominik would hesitate before doing it again and I do think he learned this lesson. It has always been one of my greatest fears if I'm honest so I'm glad it is out of the way now!

I should add though, that the officer did tell Domink that he should call again if he felt genuinely threatened by anyone (including me).

Ummm, what else? Well, we bought a little tent for our back garden and have had some great fun sleeping out and playing games in it during the rainy days. Hannon has discovered that he can read Harry Potter by himself. Lily has just had her first ever day out without me (or anyone else she is related to) and it went really well overall. She did hide in the toilet on two occasions during the day and she had a massive meltdown once she was home but that is to be expected I think. I'm just so proud of her for wanting to do it and managing to too!

We've already been on our holiday to Scratby as well. That was a beautiful five days away. We did lots of swimming (Lily can now swim on her back) and we went to the beach and Great Yarmouth Pleasure Beach too. It all went by without incident but that is mostly because Dominik did not come with us. He chose to stay at home with my mum and the animals.

He told me that whilst we were away he did not have a single meltdown nor did he lose his temper or swear (my mum agreed) and he made a point of telling me that he should have been an only child. Oops.

Dominik just likes to be left alone and he loves the quiet.

I do feel awful when I hear this from him because I just feel so guilty that we can't do more. I obviously cannot make the house silent at all times and I obviously cannot vanish my other children but I wish I could, just for him. I'd make him a giant soundproof bubble if I could.

Although, he is very lucky I guess because he does get so much down time. He does not have to contend with school, shopping trips, visits to relatives, day trips etc etc if he does not want to and I suppose it must be helping.

This week he and I focussed on his self-esteem. He admitted to me that he does not often like himself and that he is completely unsure of how it feels to be truly, intrinsically happy. We talked about dopamine and what it does and we discussed how his computer creates that hormone for him and therefore ensures his 'happiness'.

Dominik knows that he needs to learn how to be happy in himself and without any external stimulation but he also knows that at this time, it is not possible. He knows that he is at increased risk of becoming a lifelong 'addict' in some way and he is conscious that he does not want this for himself.

He is also aware that he missing out on so much, this year particularly. He has missed countless trips to visit good friends and two short breaks. It makes me as sad as it makes him happy.

Together we can work this out. I know we can. But, like most things, it's just going to take a little time, patience and practice.

N x

Our latest experiment!

It occurred to me today that it might be worth mentioning our latest (somewhat unusual) project.

For a long time now my oldest son, Domink (PDA, ASD, SPD, APD, dyspriaxia, ADHD, misophonia, urgh, and the list goes on but basically simply adds up to 'hypersensitive in all areas of perception' and 'n'th degree human being! Perhaps an evolutionary step?! Who knows, but these young people are coming through loud and clear and telling us that society is breaking down...they can't live in it any more!!! But ask yourself this, is the world they would prefer worse than the status quo?

Woah, massive sidetrack, sorry.

So, yes, Dominik has been asking for a room of his own. Specifically, the front room in our house. Traditionally, the living room I guess.

I have resisted and resisted and have kept telling myself that it would make life far, far worse as he would then have to self regulate his computer usage, his space and his time alone. Massive changes. Big gulp.

So, back in May, I finally agreed, on the proviso that he gave me his months allowance toward the furniture, bed and mattress and that he helped me moving his things into his new room. He agreed and we bought what we needed.

We then came to a hurdle. I did not have anyone who would be able to help me move the big sofa upstairs to what has now become our sitting room/living room/Hannon (and oftentimes, Lily's) bedroom.

I soon bit the bullet (amidst all the nagging from Dominik) at the beginning of June and paid someone. He did a few other jobs that had been depressing me too so overall, I guess it made us all feel much better!

Dominik moved downstairs just over two weeks ago.

The first few days were very rocky!!! I was stupid enough to push my luck and unfortunately, Dominik had a massive meltdown in public, which he hasn't done in an extremely long time.

I'd forgotten what they were like to be honest and I don't miss them one bit!

So, yes, I encouraged him to come out with us on 'moving day', even though he had already struggled to hold it together all morning and had been particularly dictatorial. Sigh, When will I learn?

He really wanted to please me (as a thank you for getting his room done) so he made himself come.

Well, yup, we learnt a valuable lesson at the same moment that day and it has changed our relationship in a big way and for the better. We both now know to be more mindful and to not try to be 'normal' even when it appears to be the right thing to do. We knew we had tried too hard and we failed.

Right moving on. Since that first day, life has changed.

Dominik is spending more time out of his 'room' than ever before! He even sat in our new living room and watched a WHOLE MOVIE with us! Without freaking out and spoiling it for everyone (do your kids who are on the spectrum do that, or is it peculiar to just mine)? He did meltdown as soon as I left to get everyone a drink but, nevertheless, it was a massive improvement.

He is choosing how he spends his time really well. Yes, he is still playing a lot, but it is different now. With the constant threat of it being taken away gone, he is clinging to it far less ferociously.

He will eat with me.
He will come and chat with me in the kitchen.
He came out for TWO picnics over the last week.
He played a game with me!!
He is a godsend when it comes to helping me with Harriet. He is by far the most amazing with her....she always laughs for him! She adores her biggest brother and he her.

Hmmm, he did have a meltdown yesterday though.
He desperately wanted to see 'Minions' and I said yes without hesitating and booked us tickets Thursday and we went Friday.

Well, he lost the plot before we left because we wore minion glasses and Lily went one step further and face painted herself yellow!!!

I thought it was brilliant and encouraged her. Well, Dominik went crazy saying he would be embarrassed and that it was "****ing stupid". He ranted and raved and demanded to be able to punch Lily or else he couldn't go. He was being completely outrageous. He ran off with the car keys at one point!!! How did he get those I hear you ask? Well, I had given them to him so he could go and get in the car first to try to avoid a fight! Yes, that was stupid!!! Hannon even told me so! Hahaahahahah! He insisted he wasn't going and I said fine, my mum was with us, so he could stay with her.

So, I get the keys back from him and he swipes at Lily, I escort her out to the car and belt her into the front seat. Dominik decides he wants to be in the third row (exactly why I need one, DLA, do you hear me) and I put down the seats and get him in sharpish.

Harriet and Hannon get in the middle. We're all set! Deep breath.

As we pull away, Dominik is in floods of tears.
He could not apologise enough.
He was devastated and hyperventilating.
I told him how much I loved him.
Hannon told him that it was ok and that he understood that it was just a part of his Apsergers.
Lily said she forgave him.
I told him it was in the past. That we got it, that we were really proud of him for coming with us, that we knew he could do it and that it was time to go and enjoy the film together.

It was plain sailing from there, with the three big kids behaving impeccably from there until we got back to the car. Harriet was excellent the whole time.
Lily proceeded to fall apart once back at the car.
Hey ho, we talked her down and laughed about how Dominik is more like to freak before we go out, Hannon is most likely to do it while we are out, and Lily, without fail, will do it as soon as we are leaving and she lets her guard down! So strange! I tend to do on the way out and on the way in! Not my best moment and definitely the times when I am most likely to lose my temper and need to take a time out!

So yeah, I think giving him what he wanted is paying off. My house is a happier place.

Lily loves being able to stay with Hannon (and even though he says he hates it, he keeps letting her come back even though I back him 100% if he doesn't want her stay with him).

Hannon loves that I can go and sit with him lots more during the day :-)
He can read for me now too in a quiet, comfortable space, and that is excellent. Massive hurdle jumped. He even read the promise at his Cubs going up ceremony better than the other three boys going up with him. So proud because when he started Beavers he was one of the only ones who did not read at all. Look at what he's done! He read a page to me a few days ago from "Soul Eater" and the only words on the page that he could not read were 'Pharaoh' and 'tornado'.

(NB an article I came across today adds to the idea of self-teaching in general.)

Dominik is so happy now he controls his own space.
He is even putting washing away, emptying his bin and bringing out plates and cups. Having ownership has helped in a big way.
His self-awareness with regard to his meltdown Friday was inspirational. I love him so much. I cannot believe how far he has come.
He was complimented by his hairdresser this week too for being able to sit so still and being so polite.
He has been going to the shop confidently by himself.
He has sworn less.
He has been quieter.
He has been sleeping more.
He has been nicer to live with.

But still, and most importantly, he really is so much happier.

The gamble is paying off ... for the time being at least.

Sending out progressive vibes for you all.

Thanks for reading.

N x

Some cool moments from the past two weeks.

On our way to see 'Minions'.

Lily and Hannon out with their Dad.

Dominik photo bombing me and Harriet!