Sorry couldn't resist the title opportunity. Nothing explicit going on here folks, just battle story number 3, on how we conquered our daughters palm sensitivity.
I've mentioned in previous posts about my daughters stimming. Most of her stims are entirely harmless, she twists her fingers into weird shapes, twirls her hair, pulls on her clothing etc. Some of her stims are quite distressing, she will pinch her leg repeatedly and she scratches in her hair line, the back of her neck and shoulders, and she will do this until she's bleeding regardless of how short her nails are kept. ( we won't get into nail trimming trauma here) I can tell a fair bit about how she's doing, by what she is doing, with her hands. For example hand splaying.
Hand splaying is what clued her therapy team and I into her palm sensitivity. I was having a devil of a time getting Tiger to participate in any sort of art play. Anytime she got things on her hands she would splay and scream until her hands were washed off. I completely misinterpreted this as an OCD cleaning issue, blaming myself for having always kept her spotless, washing her face and hands instantly should she get them dirty, ( the ocd one is me eh). Anyways the RT was trying to get Tiger to make shapes in some sand and getting nowhere when she saw the stimming and called the OT in to observe. Sure enough when we brought my Tigers hands up to the bin she would splay and pull back.
Sometimes I tell ya, I can be so dense. The palm sensitivity diagnosis instantly answered a lot of questions for us, like why she wouldn't use utensils, hold the crayons, why she wanted papertowel wrapped around her popsicle stick etc. Seriously the fact that it took almost 2 and half years to clue into this is ridiculous, but live and learn. I won't beat myself up too much as I've also previously stated Tigers behaviour changes day to day, so maybe it was the inconsistency of her responses that kept us from figuring it out sooner. But as you can tell the palm sensitivity spilled into a lot of areas.
Self care, feeding, playing, creative outlets etc. It was a big deal.
Anyways back to the battle plan. The cure for palm sensitivity is patience. Well maybe not cure but tool for dealing with, reducing or mitigating might be better terms.
Patience, is a virtue I do not possess in quantity, but for my daughter I will do anything. That meant spending days introducing new textures to her little hands and trying out all different sizes, shapes and even different materials for her cutlery.
Guess what, Ikea makes some heavy rounded stainless steel cutlery that is HEAVY. Tiger still uses it.
Coloured rice was a killer it took days before I could get her to try it out. But we persevered and kept at it, I let her have a cloth by her Rubbermaid so she could wipe her hands as much as needed. I took full advantage of her love of dump and fill and gave her water to mix with whatever new material I had in the bin. Her RT also joined in the act using different materials to make shapes, letters and numbers. At night I would ham it up for Tiger creating stories that included texture descriptions and samples of dragon scales, unicorn horn and troll hair. I have a whole series of stories I made up for her about Ruby The Red Dragon.
Slowly but surely the need to wipe her hands and the splaying subsided.
Tigerlily still prefers to keep her hands clean but she will get fantastically dirty now and boy does she ever love sand and mud.
I'm calling the battle won.
The High Functioning Life, where not washing your hands can make a mama proud.
HFL Mama
Monday, March 28, 2016
Battle Story #2 Engagement
No this isn't a love story, this is the second story in my battle series. This is the tale of how Tigerlily came to be so very spoiled but very present in this world.
This is Tigerlily, a few years ago.
Its at her Birthday Party, notice the blank expression.
This is her checked out face. Those of you new to the lifestyle may not yet recognize this face but those who've been around are probably very familiar with the zoned out expression.
One of the battles we've won, is against this expression. She would retreat into her world for varying lengths of time, facing us with this expression, not hearing us, not responding, just there blank faced. This wasn't a constant but it was a daily. I am so very lucky to have albums full of happy Tigerlily pictures. However, this expression haunts my dreams, for she was absent from us, when this face was present and to me that face represented a failing on my part.
I would love to be able to explore the inner workings of my child's mind. Where was she, where did she go to, when this world was too painful, too loud, bright, tactile or scary. I believe the term for this is disengaged, she would still move about and be doing things, but not interacting with anything outside her own little world. When this photo was taken she had just recently been diagnosed as HFA. I was just beginning to understand what her diagnosis meant. I was devouring books on the subject and researching into the darkest hours of the night. Eventually I read a book about floor time therapy. I was exhausted at the time and the technical and medical jargon were unfamiliar, so I may have completely misinterpreted it, and have no wish to anger the author by misrepresenting it. So instead of linking it here, what I'll tell you is what I took from it.
In a nutshell the zoned out expression meant that this world currently sucked and her own felt much better to her.
My frazzled, exhausted and depressed brain came up with a ridiculously simple solution.
Make this world better than hers then.
I know, but keep in mind I was averaging 3-4 hours of broken sleep each night at this point. So simple was good for me. So that was my goal. To make this world better. So to get Tiger to stay with me, I set out to make her life awesome, give her everything she needed and wanted, be the best friend and playmate ever. Tiger was already in speech and physio, RT and OT and just I just rolled the better world plan right into it. I tried to turn all of her therapy into fun games. I bought all sorts of specialty toys and therapy equipment (see post Buying A Cure). I turned the sun room into a very special playroom for us. I made Tigerlily therapy my full time job. This led to all sorts of interesting discoveries, a lot of Tigers issues are with sensory inputs. I learned that she really hated artificial light, so I started leaving the lights in the house off unless they were really necessary and playing outside as much as possible.
I learned that feeling too warm was a real issue, so I kept our place cool and stopped trying to layer the kid up when she was outside.
I learned to pay very close attention to every little nuance of her behaviour and to watch her hands, for her hands told the story, when she could not. Twisting fingers, splayed hands, pinching and scratching the different stims indicated the different levels of discomfort, all depending on what was going on. By watching her hands I could intervene, remove or change what was happening, and when the hands stopped, we could move on again.
Slowly but surely this naïve and oversimplified approach combined with all the therapies and supplements, the routine and structure she needed, helped to make that expression a seldom seen affair. The greatest side effect being her increased happiness and her smiles.
I'm happy to say that Tiger hasn't checked out on me in quite a while, and I'll call that a win.
The High Functioning Life, where we can celebrate any win we want to.
HFL Mama
This is Tigerlily, a few years ago.
Its at her Birthday Party, notice the blank expression.
This is her checked out face. Those of you new to the lifestyle may not yet recognize this face but those who've been around are probably very familiar with the zoned out expression.
One of the battles we've won, is against this expression. She would retreat into her world for varying lengths of time, facing us with this expression, not hearing us, not responding, just there blank faced. This wasn't a constant but it was a daily. I am so very lucky to have albums full of happy Tigerlily pictures. However, this expression haunts my dreams, for she was absent from us, when this face was present and to me that face represented a failing on my part.
I would love to be able to explore the inner workings of my child's mind. Where was she, where did she go to, when this world was too painful, too loud, bright, tactile or scary. I believe the term for this is disengaged, she would still move about and be doing things, but not interacting with anything outside her own little world. When this photo was taken she had just recently been diagnosed as HFA. I was just beginning to understand what her diagnosis meant. I was devouring books on the subject and researching into the darkest hours of the night. Eventually I read a book about floor time therapy. I was exhausted at the time and the technical and medical jargon were unfamiliar, so I may have completely misinterpreted it, and have no wish to anger the author by misrepresenting it. So instead of linking it here, what I'll tell you is what I took from it.
In a nutshell the zoned out expression meant that this world currently sucked and her own felt much better to her.
My frazzled, exhausted and depressed brain came up with a ridiculously simple solution.
Make this world better than hers then.
I know, but keep in mind I was averaging 3-4 hours of broken sleep each night at this point. So simple was good for me. So that was my goal. To make this world better. So to get Tiger to stay with me, I set out to make her life awesome, give her everything she needed and wanted, be the best friend and playmate ever. Tiger was already in speech and physio, RT and OT and just I just rolled the better world plan right into it. I tried to turn all of her therapy into fun games. I bought all sorts of specialty toys and therapy equipment (see post Buying A Cure). I turned the sun room into a very special playroom for us. I made Tigerlily therapy my full time job. This led to all sorts of interesting discoveries, a lot of Tigers issues are with sensory inputs. I learned that she really hated artificial light, so I started leaving the lights in the house off unless they were really necessary and playing outside as much as possible.
I learned that feeling too warm was a real issue, so I kept our place cool and stopped trying to layer the kid up when she was outside.
I learned to pay very close attention to every little nuance of her behaviour and to watch her hands, for her hands told the story, when she could not. Twisting fingers, splayed hands, pinching and scratching the different stims indicated the different levels of discomfort, all depending on what was going on. By watching her hands I could intervene, remove or change what was happening, and when the hands stopped, we could move on again.
Slowly but surely this naïve and oversimplified approach combined with all the therapies and supplements, the routine and structure she needed, helped to make that expression a seldom seen affair. The greatest side effect being her increased happiness and her smiles.
I'm happy to say that Tiger hasn't checked out on me in quite a while, and I'll call that a win.
The High Functioning Life, where we can celebrate any win we want to.
HFL Mama
One Battle At A Time
While I was experiencing technical difficulties ( 3 days with no hydro, locked out of google account etc. ) I thought about what next I wanted to post about. I decided that some victory shares were in order. I know how stressful and worrying the HFA life can be, but there is always room for improvement and there is always hope. To that effect I'd like to share some of our war stories with you, about the battles we've won!
Battle Story #1 Speech
Brief history, Tiger started talking at 9 months, got really sick and then stopped talking completely. We were back to pointing, and pulling mommy around and lots and lots of screaming. It was always clear to her father and I, that Tigerlily understood speech. She followed some directions and acted on things people were saying. We put Tiger into speech therapy when she hadn't been speaking for about 6 months. The wait and see, and give her time approach were obviously not working. We paid for private therapy and I paid close attention to what the therapist was doing and replicated as much as I could at home.
We learned to speak more slowly. I needed to give Tiger more time to respond, offering the word for what she wanted 3 times. I needed to continue to acknowledge all attempts at communication, continue using the sign language etc.
The goal was to increase her comfort in all forms of communication. One of the things that I noticed was that our therapist used exaggerated facial expressions and funny voices, and that when she did Tiger would engage. So I started doing this at home, offering words and phrases in different voices with funny faces and great animation. We worked this way for months. Meanwhile, we saw the specialist and were diagnosed and received all our reference letters and advice on probiotics and omega therapies and diet etc. We started the little one on both Omegas and BioGaia live probiotics. All the while continuing speech therapy both privately and through the OEY government funded program, when we finally came up on the waitlist. At this point we had the yes nod, and the no head shake, a couple words like up and mama were being thrown around as well. The going was painfully slow and she was so very far behind in comparison to her peers, despite the constant effort on our part, the hours of therapy both at clinics and at home Tiger was mostly silent or screaming.
Then it happened, one day after physiotherapy, I took Tiger to a little village to visit the shops, go to the bakery for a cookie etc. Well we went into the toy store and Tiger was pulling me through the aisles when she pointed her little finger and said " Its a ball". (insert sounds of angels singing)
After over a year of non verbal communication I was given a whole statement. Needless to say, I bought the ball, after confirming that absolutely everyone in the shop had heard her speak! I may have cried just a little . ( I still have the ball )
Now I don't know what caused the click, the speech therapy, the Omegas, the probiotics or a combination, but after that point, the tide turned. The tide actually became a tsunami of words that rushed in, and by the time we were discharged from speech, Tiger was scoring in the 98th percentile for language skills.
The words were always there, just trapped. The doctors couldn't explain it, saying sometimes things come together. If your child is non verbal, please don't give up.
The High Functioning Life, where victory can be ours!
HFL Mama.
Wednesday, March 23, 2016
Technical Difficulties
There once was a girl who had technical difficulties. It seemed that if ever there were gremlins in the system or random issues or errors they would find her desktop. Recently Google detected unusual blah blah blah and so I was locked out of my HFL account .
Sorry for the silence, hubby has rescued me and so now I can post again YAY.
Sorry for the silence, hubby has rescued me and so now I can post again YAY.
Wednesday, March 2, 2016
Decisions Decisions
One of the things I've always struggled with is making big decisions. I wiffle, waffle and write pro vs. con lists and tie myself up in knots trying to decide which way to jump.
As a parent to an exceptional kid, I have to make a lot more decisions that have the potential to be life altering. The course I take regarding my daughters therapy won't affect me half as much as it will her, and that terrifies me.
Here we are again, and I need to make more decisions. You see we've moved into a new region and I have to decide whether or not to put my daughter back on the ABA wait list in our new area. She would have a new therapist and we would have to travel (car rides are not her thing). This would be a no brainer if I had an ABA goal I wanted to work on, but I don't. In the past setting goals for ABA wasn't such a big deal.
4 years ago
Our goals were simple the decisions easy.
The first was to get her to respond to her name.
The second was teaching her STOP cuz she's a runner.
The third was eye contact when making requests.
3 years ago
The goals were still pretty easy to establish,
Potty training & self dressing, we had to do these goals a few times, but the decision to keep trying for these goals wasn't a tough one.
2 years ago the goals got harder, we were having a horrific time with school and so I gave my ABA sessions to her school, to see what could be done there. I agonized over sending her to school in the first place, and then which school to send her to.
(sometimes things just don't work out)
Last year I had to re-list Iliana and we didn't come back up on the list, before we moved out of area.
Now here I am trying to decide what's best.
My daughter is doing really well, and I'm scared to mess with the routine.
I don't have any goals in play and I'm getting pretty good at breaking things down into pieces she can swallow and teaching her new skills. I also hate the idea of taking up space on the list, when there are so many children waiting.
So I'm writing a pro/con list and agonizing over the decision.
I'm also thinking of doing more OT privately to work on her fine motor skills.
Like I said, decisions.....
The High Functioning Life, where goals have nothing to do with sports.
As a parent to an exceptional kid, I have to make a lot more decisions that have the potential to be life altering. The course I take regarding my daughters therapy won't affect me half as much as it will her, and that terrifies me.
Here we are again, and I need to make more decisions. You see we've moved into a new region and I have to decide whether or not to put my daughter back on the ABA wait list in our new area. She would have a new therapist and we would have to travel (car rides are not her thing). This would be a no brainer if I had an ABA goal I wanted to work on, but I don't. In the past setting goals for ABA wasn't such a big deal.
4 years ago
Our goals were simple the decisions easy.
The first was to get her to respond to her name.
The second was teaching her STOP cuz she's a runner.
The third was eye contact when making requests.
3 years ago
The goals were still pretty easy to establish,
Potty training & self dressing, we had to do these goals a few times, but the decision to keep trying for these goals wasn't a tough one.
2 years ago the goals got harder, we were having a horrific time with school and so I gave my ABA sessions to her school, to see what could be done there. I agonized over sending her to school in the first place, and then which school to send her to.
(sometimes things just don't work out)
Last year I had to re-list Iliana and we didn't come back up on the list, before we moved out of area.
Now here I am trying to decide what's best.
My daughter is doing really well, and I'm scared to mess with the routine.
I don't have any goals in play and I'm getting pretty good at breaking things down into pieces she can swallow and teaching her new skills. I also hate the idea of taking up space on the list, when there are so many children waiting.
So I'm writing a pro/con list and agonizing over the decision.
I'm also thinking of doing more OT privately to work on her fine motor skills.
Like I said, decisions.....
The High Functioning Life, where goals have nothing to do with sports.
A Tale of Two Children
So this post isn't a nature vs. nurture argument, in case you were wondering.
It's just a comparison illustrating just how different kids on the spectrum can be.
Tiger is not alone on the spectrum in our family. My brothers son is also ASD and there are lots of differences between them, and some similarities too.
Why people still generalize is beyond me, it isn't as if the information isn't available its right in the name, autism SPECTRUM disorder, come on people! Quit asking what her gift is or how SHE can be autistic if she talks.
But if you need specific cases, here ya go, Skin Man and Tiger Lily two kids on the spectrum.
Tiger Lily compared to Skin Man
She has no learning disabilities and is most likely gifted.
He has a mild intellectual delay.
She can speak for herself, hold a conversation and argue a point.
He does scripting
She is light sensitive
He is not
She is sound sensitive to pitches and volume.
He is only bothered by loud noises.
She is hypo sensitive to cold and hyper sensitive to heat.
He prefers to be cold but its not an issue.
She suffers from low muscle tone.
He has no problem moving around.
She eats a wide variety of food all different colours and textures.
He gags on anything soft, no ice cream, pudding or yogurt for him.
Just bland, dry, crunchy with a definite love of carbs.
She will drink, water, juice, milk and smoothies in any container
He will only drink bottled water
She is very clumsy, has gross, fine and motor planning issues, falls every day and drops things.
He never falls,
She loves her jammies and dresses
He is nicknamed skin man, because he strips the moment he enters the house.
She is a flight risk
He is not
She hates stores and shopping.
He asks to go shopping a hundred times a day.
Her big stims are twirling her hair, twisting or splaying her fingers.
He jumps and jumps and jumps
Neither of them are good sleepers, Tiger wakes frequently but generally stays in her bed, while skin man wants to sleep with someone. They both enjoy rough play and they both think farts are the funniest thing ever.
I guess what I'm trying to say is...
The High Functioning Life, where every piece in the puzzle is a different shape.
It's just a comparison illustrating just how different kids on the spectrum can be.
Tiger is not alone on the spectrum in our family. My brothers son is also ASD and there are lots of differences between them, and some similarities too.
Why people still generalize is beyond me, it isn't as if the information isn't available its right in the name, autism SPECTRUM disorder, come on people! Quit asking what her gift is or how SHE can be autistic if she talks.
But if you need specific cases, here ya go, Skin Man and Tiger Lily two kids on the spectrum.
Tiger Lily compared to Skin Man
She has no learning disabilities and is most likely gifted.
He has a mild intellectual delay.
She can speak for herself, hold a conversation and argue a point.
He does scripting
She is light sensitive
He is not
She is sound sensitive to pitches and volume.
He is only bothered by loud noises.
She is hypo sensitive to cold and hyper sensitive to heat.
He prefers to be cold but its not an issue.
She suffers from low muscle tone.
He has no problem moving around.
She eats a wide variety of food all different colours and textures.
He gags on anything soft, no ice cream, pudding or yogurt for him.
Just bland, dry, crunchy with a definite love of carbs.
She will drink, water, juice, milk and smoothies in any container
He will only drink bottled water
She is very clumsy, has gross, fine and motor planning issues, falls every day and drops things.
He never falls,
She loves her jammies and dresses
He is nicknamed skin man, because he strips the moment he enters the house.
She is a flight risk
He is not
She hates stores and shopping.
He asks to go shopping a hundred times a day.
Her big stims are twirling her hair, twisting or splaying her fingers.
He jumps and jumps and jumps
Neither of them are good sleepers, Tiger wakes frequently but generally stays in her bed, while skin man wants to sleep with someone. They both enjoy rough play and they both think farts are the funniest thing ever.
I guess what I'm trying to say is...
The High Functioning Life, where every piece in the puzzle is a different shape.
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