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
Saturday, 7 January 2017
Friday, 30 December 2016
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?
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?
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 -
Thursday, 8 December 2016
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.
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
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'
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
Friday, 21 October 2016
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
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
Wednesday, 17 August 2016
Pretty much terrified at all times!
So, I definitely owe myself (and you) a blog post.
For me, time is a little harder to come by these days because Harriet is exploring and generally being an 18 month old!
She is into everything. If you turn around for one second she is into something or, more often than not, on to something! Her ability to climb continues unabated even with the odd tumble.
The garden table, the kitchen table, the kitchen worktops, the bunk beds, the freezer, the chest of drawers, and last but not by no means least, the side of the bath! Nowhere is safe.
These experiences are all equally horrifying and inspiring. Not a single time do I not panic but, barring two occasions that spring to mind, she very rarely slips/falls. She is an adept climber.
Harriet isn't saying any words yet which I am grateful for in some ways but, surprise, surprise, in others, I'm not.
I swear that being a parent is basically being equal parts impressed and terrified at pretty much all times.
Hannon is collaborating on a few games with a new friend. They are beta testing one another's games, they are creating artwork for one another and Hannon has even begun to experiment with voice acting, inserting 'easter eggs', making cut scenes and is just today working on soundtracks! It is so impressive, and yet utterly terrifying at the same time.
Lily is asking very grown up questions all of a sudden. She is still growing at a rate of knots. She has been poorly too and a bit clumsy and in the wars. It seems many of her changes are to do with her physical person and her level of maturity right now.
But, that is not to say that she isn't taking part in some activities! We walked the whole of Bedford, and learnt some of its history doing a treasure hunt from Treasure Trails (highly recommend), she was boosted over the barrier around our local 'music in the park' event by my mum (!!!) so she could see what it looked like inside and to hear one of her favourite songs played live and she has also managed a full 3 hours at a science event this month.
Her capacity for 'life' is improving all the time and Lily has far fewer meltdowns right now. It is such a relief for us both really and a well-deserved break from her usual level of stress.
On to Dominik! His is perhaps the most surprising of tales! We have now been therapeutically brushing for a fair while. The biggest difference on the surface is the amount of time he is spending actively playing games compared to doing other things. The balance is heavily in favour of editing, dubbing and drawing comics. He got through his birthday without much incidence this year but it was the most low key it has ever been. Not sure he would choose for it to be that low key again, but we might have found a balance for next year!
Dominik has also experienced his first breakup with his American girlfriend, He was definitely thrown by it but recovered quickly. His emotional state in general has been superb. He is still developmentally behind his peer group, but he has gained some ground for sure.
Dominik is also far more able to express himself. He is achieving a level of clarity (and honesty) never before seen. This alone has made a huge difference to his self-esteem and to his level of active co-operation.
He has a date for his operation (yes, we have been advised by several different professionals that we cannot avoid the tendon surgery for his tiptoe walking now) and whilst he is scared, he is also managing well. He is willing to talk about it and he is helping to plan what we will do/what he will want to do during his recovery. It was at this point during the appointment with the surgeon, when he realised that he would have a legitimate reason to stay in bed and literally do nothing! That was when he accepted the operation without a fuss! I must admit, I heaved a huge sigh of relief that he was not a more active, outdoorsy type boy, or else my house would be like living with a time bomb right now!
Dominik has also taken his relative successes in the voice acting and comic dubbing world to a whole new level! He was stressed yesterday about something (and the reason I could tell was because he was being particularly controlling and rude to me) and so I asked him what was wrong (during our evening brushing session). He said that he had taken on several projects and was struggling to manage them. He told me that one of them involved 20 different voice actors! I laughed out loud! My PDA son was trying to project manage 20 people! I have pretty much always known that he works best when he is in charge...but did I ever imagine that he would be voluntarily managing 20 people from all over the world by the age of 12?! Never! He himself has now realised that this is a mammoth task! He has learnt from it and I think he will be more careful what he takes on from now on.
His personality is equal parts terrifying and utterly impressive.
I am sure there is more to say but I am going to go to bed now. I am exhausted and Dominik and I are going to Windsor for our second appointment tomorrow and I simply hate driving there so I must sleep.
Thanks for reading. I hope your summer is as lovely as ours.
N x
For me, time is a little harder to come by these days because Harriet is exploring and generally being an 18 month old!
She is into everything. If you turn around for one second she is into something or, more often than not, on to something! Her ability to climb continues unabated even with the odd tumble.
The garden table, the kitchen table, the kitchen worktops, the bunk beds, the freezer, the chest of drawers, and last but not by no means least, the side of the bath! Nowhere is safe.
These experiences are all equally horrifying and inspiring. Not a single time do I not panic but, barring two occasions that spring to mind, she very rarely slips/falls. She is an adept climber.
Harriet isn't saying any words yet which I am grateful for in some ways but, surprise, surprise, in others, I'm not.
I swear that being a parent is basically being equal parts impressed and terrified at pretty much all times.
Hannon is collaborating on a few games with a new friend. They are beta testing one another's games, they are creating artwork for one another and Hannon has even begun to experiment with voice acting, inserting 'easter eggs', making cut scenes and is just today working on soundtracks! It is so impressive, and yet utterly terrifying at the same time.
Lily is asking very grown up questions all of a sudden. She is still growing at a rate of knots. She has been poorly too and a bit clumsy and in the wars. It seems many of her changes are to do with her physical person and her level of maturity right now.
But, that is not to say that she isn't taking part in some activities! We walked the whole of Bedford, and learnt some of its history doing a treasure hunt from Treasure Trails (highly recommend), she was boosted over the barrier around our local 'music in the park' event by my mum (!!!) so she could see what it looked like inside and to hear one of her favourite songs played live and she has also managed a full 3 hours at a science event this month.
Her capacity for 'life' is improving all the time and Lily has far fewer meltdowns right now. It is such a relief for us both really and a well-deserved break from her usual level of stress.
On to Dominik! His is perhaps the most surprising of tales! We have now been therapeutically brushing for a fair while. The biggest difference on the surface is the amount of time he is spending actively playing games compared to doing other things. The balance is heavily in favour of editing, dubbing and drawing comics. He got through his birthday without much incidence this year but it was the most low key it has ever been. Not sure he would choose for it to be that low key again, but we might have found a balance for next year!
Dominik has also experienced his first breakup with his American girlfriend, He was definitely thrown by it but recovered quickly. His emotional state in general has been superb. He is still developmentally behind his peer group, but he has gained some ground for sure.
Dominik is also far more able to express himself. He is achieving a level of clarity (and honesty) never before seen. This alone has made a huge difference to his self-esteem and to his level of active co-operation.
He has a date for his operation (yes, we have been advised by several different professionals that we cannot avoid the tendon surgery for his tiptoe walking now) and whilst he is scared, he is also managing well. He is willing to talk about it and he is helping to plan what we will do/what he will want to do during his recovery. It was at this point during the appointment with the surgeon, when he realised that he would have a legitimate reason to stay in bed and literally do nothing! That was when he accepted the operation without a fuss! I must admit, I heaved a huge sigh of relief that he was not a more active, outdoorsy type boy, or else my house would be like living with a time bomb right now!
Dominik has also taken his relative successes in the voice acting and comic dubbing world to a whole new level! He was stressed yesterday about something (and the reason I could tell was because he was being particularly controlling and rude to me) and so I asked him what was wrong (during our evening brushing session). He said that he had taken on several projects and was struggling to manage them. He told me that one of them involved 20 different voice actors! I laughed out loud! My PDA son was trying to project manage 20 people! I have pretty much always known that he works best when he is in charge...but did I ever imagine that he would be voluntarily managing 20 people from all over the world by the age of 12?! Never! He himself has now realised that this is a mammoth task! He has learnt from it and I think he will be more careful what he takes on from now on.
His personality is equal parts terrifying and utterly impressive.
I am sure there is more to say but I am going to go to bed now. I am exhausted and Dominik and I are going to Windsor for our second appointment tomorrow and I simply hate driving there so I must sleep.
Thanks for reading. I hope your summer is as lovely as ours.
N x
Wednesday, 22 June 2016
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
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
Friday, 13 May 2016
Such good times!
It is important to write about the good times.
The past weeks have been so full of good times that I've not really had much time to take stock.
Tonight I did though.
I realised we have such a roll going right now that it is heart-warming and inspirational.
We have what I can only describe as a 'circle of happiness'. It works very simply....always be kind. That's it. If we are kinder to each other, we genuinely and actively live in a way that is kinder to ourselves. Happy people are kind people...don't you think? Are you more or less likely to do kind deeds if you are happy: or sad: or angry: or simply disinterested? You see my point.
Happiness breeds happiness if we all act on it. Easy.
Here's some happy for you!
Dominik has had an unprecedented number of hits on his YouTube channel and he is simply happier than I have EVER seen him before. He has over 100 subscribers now. He has had over 35,000 views of one particular video (which is not even a gaming video!).
It is lovely to see his joy, ease, calm, and more joy!
He now has two people collaborating with him too! They both lives overseas so collaboration presents some challenges. Plus, his collaboration tool kit is non existent. However, Dominik has just completed his first ever international collaboration. At 11 years old! He did it all with masses of support. He is so proud of himself. He is loving what he is doing. He is genuinely feeling inspired and motivated. He even began drawing on the pc today and made his first ever animation. It was excellent. I'll see if he wants to upload it I think. :-)
He has also -
joined us on holiday
been to a Vintage Gaming Fair
been for two picnics
been to the cinema
been to a local fete on a sweltering day
been to Legoland
and finally met up with friends at a COUNTRY PARK!!!!
This is just the last three weeks. It is stunning in it's incessantness (is that a word...don't think so). Just exhilarating to be a part of.
Hannon, in addition to the above, has just been to his first ever camp. I honestly never thought this would happen. He has never spent one night away from me voluntarily. Not even to my mum's house which is less that 5 minutes away. This is a major achievement for Hannon. And he loved it. Bonus! He cannot wait to do one next month. He is happy and motivated like Dominik. What more can you ask?
Lily has also done all of the above, and stayed at my mum's house for two nights in a row (one was a sleepover with her two younger cousins) so as Dominik, Harriet and I could be alone (because it basically never happens). How thoughtful and kind of my incredibly sensitive, intuitive little girl. Her moods have wobbled at the extreme ends of the spectrum as a result of how intensely she has been pushing herself but I know she happier now than she was at the start of the week so that's what counts. She is happier. She is loving having her own laptop so she can play pc Minecraft. She has been using scratch to make animations which are really funny and so well drawn. I should ask Lily to upload too I think. That will make her happier too.
Happiness is simply contagious. There is a caveat though...you just have to actually be happy for it to work. If you are not being honest with yourself about what you want and how best to achieve it, you can't be truly happy and therefore the happiness will not spread as easily.
Harriet is just happy. (She is also still a mountaineer.) She graduated to climbing ladders in parks this week! She is calling me now. She is loving learning how to sign. We are doing animals this week and we've found that dolphins are easily signed and remembered after she saw a video of them. She is so independent and headstrong (yup, another one) and so much fun. She receives so much love from her siblings and I think she brings it to herself simply by just 'being'. We can learn a lot from babies. They are so pure. She is just one tiny bundle of love.
Thanks for reading.
N x
The past weeks have been so full of good times that I've not really had much time to take stock.
Tonight I did though.
I realised we have such a roll going right now that it is heart-warming and inspirational.
We have what I can only describe as a 'circle of happiness'. It works very simply....always be kind. That's it. If we are kinder to each other, we genuinely and actively live in a way that is kinder to ourselves. Happy people are kind people...don't you think? Are you more or less likely to do kind deeds if you are happy: or sad: or angry: or simply disinterested? You see my point.
Happiness breeds happiness if we all act on it. Easy.
Here's some happy for you!
Dominik has had an unprecedented number of hits on his YouTube channel and he is simply happier than I have EVER seen him before. He has over 100 subscribers now. He has had over 35,000 views of one particular video (which is not even a gaming video!).
It is lovely to see his joy, ease, calm, and more joy!
He now has two people collaborating with him too! They both lives overseas so collaboration presents some challenges. Plus, his collaboration tool kit is non existent. However, Dominik has just completed his first ever international collaboration. At 11 years old! He did it all with masses of support. He is so proud of himself. He is loving what he is doing. He is genuinely feeling inspired and motivated. He even began drawing on the pc today and made his first ever animation. It was excellent. I'll see if he wants to upload it I think. :-)
He has also -
joined us on holiday
been to a Vintage Gaming Fair
been for two picnics
been to the cinema
been to a local fete on a sweltering day
been to Legoland
and finally met up with friends at a COUNTRY PARK!!!!
This is just the last three weeks. It is stunning in it's incessantness (is that a word...don't think so). Just exhilarating to be a part of.
Hannon, in addition to the above, has just been to his first ever camp. I honestly never thought this would happen. He has never spent one night away from me voluntarily. Not even to my mum's house which is less that 5 minutes away. This is a major achievement for Hannon. And he loved it. Bonus! He cannot wait to do one next month. He is happy and motivated like Dominik. What more can you ask?
Lily has also done all of the above, and stayed at my mum's house for two nights in a row (one was a sleepover with her two younger cousins) so as Dominik, Harriet and I could be alone (because it basically never happens). How thoughtful and kind of my incredibly sensitive, intuitive little girl. Her moods have wobbled at the extreme ends of the spectrum as a result of how intensely she has been pushing herself but I know she happier now than she was at the start of the week so that's what counts. She is happier. She is loving having her own laptop so she can play pc Minecraft. She has been using scratch to make animations which are really funny and so well drawn. I should ask Lily to upload too I think. That will make her happier too.
Happiness is simply contagious. There is a caveat though...you just have to actually be happy for it to work. If you are not being honest with yourself about what you want and how best to achieve it, you can't be truly happy and therefore the happiness will not spread as easily.
Harriet is just happy. (She is also still a mountaineer.) She graduated to climbing ladders in parks this week! She is calling me now. She is loving learning how to sign. We are doing animals this week and we've found that dolphins are easily signed and remembered after she saw a video of them. She is so independent and headstrong (yup, another one) and so much fun. She receives so much love from her siblings and I think she brings it to herself simply by just 'being'. We can learn a lot from babies. They are so pure. She is just one tiny bundle of love.
Thanks for reading.
N x
Subscribe to:
Posts (Atom)