Whilst Lily and I were making paper craft snowflakes this evening loads of things occurred that I felt compelled to share!
Firstly, it was unanimous, amoung our little family at least, that the 6 pointed snowflakes looked amazing when compared with the 4 pointed snowflakes.
We asked eachother why and had a nice discussion about nature, Fibonacci numbers, symmetry, tessellation, fractions and probably a couple of other things too! Win, win with a spontaneous and cool Christmas craft!
The snowflakes also brought to light a few other things unrelated to the snowflakes themselves.
Lily found it really hard. Overall. Not just one part. She could not imagine the completed snowflake in her head and even after she had cut one, she had to refold it and study what she had done in order to draw another. She also could not follow a pattern. Whilst she was designing her snowflake, she constantly unfolded and refolded, indicating again that she was unable to imagine what it may look like in the end (when unfolded). She point blank (read - after a huge meltdown), refused to use the second method we found for folding the paper (the one that created the 6 pointed snowflakes) because she thought the first method was easier. And finally, she found the cutting really stressful. She was breathing hard and then holding her breathe. She was groaning and gnarling with frustration. She was terrified she would cut her design too far and ruin it. She did actually do this a couple of times and both were snowflakes were violently screwed up and thrown across the table.
However, she is now happily sat making her snowflakes, her way and she is improving fast! Oh, and they are being stuck all over the house! :-)
During the snowflake making, Dominik came into the kitchen with his office chair, tablet, hat and headphones so that I could do his daily neurodevelopmental exercises. Amazing. I didn't even ask him to come. He wandered in and was ready to get started.
Well, that didn't last long. It really was too good to be true.
Let me explain why I think Dominik then had a huge meltdown (larger than he's experienced in a fair few weeks).
On Wednesday, we're going to see Hamilton in London. I cannot recall if I have ever mentioned his obsession with the musical in this blog, but, it's been there, for probably around 9 months now. He knows all the words to a large chunk of the songs. He has researched it's performers and writer, read parts of the Benjamin Franklin papers, learned some American History, spent hours singing the songs and has generally been very Autistic about it!
It's heavily on his mind and is basically replacing Christmas as his 'event' this year. Everything in his life revolves around 7.30pm Wednesday night. He is excited, terrified, nervous, angry, thankful and anxious all the time.
So, back to the kitchen, the reason he was unable to even start his therapy is because he started talking to me about his sleep pattern. It is all over the place and he has been trying to 'correct it' (his words, not mine). As he sat on his chair he asked me what I thought he could do to try and ensure he does not feel tired during our evening out to see Hamilton (which is in fact a late afternoon to an early morning in reality) and I answered him.
That was my mistake. He did not actually want to hear my suggestions (turn everything off, have a warm milk, put on the fan for white noise and stay in bed to relax and, hopefully at the very least, help his body understand that it is bed time now), what he wanted was a big hug and some empathy.
Soooooo, mine were not helpful suggestions in the circumstances. They were stupid, useless, a waste of time and obviously not going to work for him (his words). Sigh. He stomped off. Slammed his chair against the kitchen cupboards and slammed his bedroom door for good measure.
I probably should have seen it coming when I noticed that his actions were literally, 'too good to be true' but I didn't. I was worn out from calming and coaching Lily for half an hour. I was brain numb from talking about Fibonacci and geometry. I was excited that Dominik was doing something VOLUNTARILY that I have literally had to beg him to do every. single. day. since September. I missed the clues!
But, here I am now, analyzing what happened and seeing it all more clearly.
I think that's why I write this blog. Having no partner to reflect with means that I have to get the thoughts out somewhere! Ta-da! :-)
Dominik will be ok. I will go downstairs now and give him that hug and tell him that of course he won't feel tired and that of course he WILL NOT fall asleep on Wednesday! And that it is going to be perfect.
Thanks for reading!
N x
PS - Snowflakes also made me think of a friend who lost a loved one this week and send her a little extra prayer. Life is just so precious and fleeting, much like snowflakes themselves, so love each other and be kind. <3
PPS - Lily is writing her first manga! Just giving it a mention because otherwise I will never remember when she wrote it!
Showing posts with label neurodevelopmental brushing. Show all posts
Showing posts with label neurodevelopmental brushing. Show all posts
Monday, 18 December 2017
Monday, 30 January 2017
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
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
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
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