Monday, November 17, 2014

Is your kid disabled enough? Walking isn't everything.

Wait, what?  Is that even a thing?

Oh yes, it is a thing.  Among Special Needs Families.  I guess like all aspects of parenting the sense of competition never goes away, even if it's a competition that nobody truly wants to win.  It's hard.  Every kid is different.  No two children are affected in exactly the same way, but we like to try and find people who share similar journeys to find some solidarity, people who understand and truly get what it is like to be us.  In doing that, I suppose we look around, look at other children and think, nope, no way, that person doesn't belong in my group, they have no idea what I'm going through, they have things so much easier than I do.  

One of the biggest failings of this sort of categorisation I think, is the focus on physical ability.   Of course, physical ability is important.  There is a huge difference between a 4 year old who is mobile and a 4 year old who has the physical capabilities of a newborn.  Nobody would deny that is true, and  it would be easy to determine "severity" with that sort of comparison.  
But what about among children who are more mild to moderate in their physical impairments?  It seems we tend to latch on to some sort of physical ability when it comes to trying to determine where a child fits in terms of severity. Can they sit?  Can they walk?  These are all measures of how affected someone is by their disability.

But who is more disabled?  The child who can walk independently, or the child who can only walk with a walker? First impressions tell you that a child who cannot walk unassisted is clearly more disabled right?
But what happens if the child who walks with the walker is completely on track developmentally in every other way?  Socially, Cognitively, and Language wise they are performing at or above the expected level for their age?
What happens if the child who walks independently is well below their age in every developmental area?   What happens if they are years behind their same age peers when it comes to their social, cognitive and communication skills?   Who really has the biggest struggles?

I know when Joshua couldn't walk, I saw walking as the be all and end all of life.  If your child could walk, you had it better than me.  If only my child could walk, everything would be fine.  

Well I'm on the other side of that now, and I'm here to tell you that walking isn't everything. Having a child who walks independently doesn't solve all of your problems.  It helps.  It solves many of the daily logistical challenges of moving around with a child who cannot move themselves.  But it also adds to your problems too.  Especially when your child is otherwise impaired. You've just changed your problems.  From -it's so hard to get around with my kid who can't walk, gee people whose children walk on their own have no idea how easy they have it when their child can just walk and they don't have to worry about managing extra equipment and dealing with accessibility challenges.  To-  Holy shit, how am I supposed to keep this child safe?  This child who can move on their own but has no age appropriate concepts to keep them safe?

I see the parents of typical 4 year olds.  Walking along, with their children walking beside them from one place to another.  That is not me.  My child needs to be physically restrained in a stroller or I need to have one hand on him 100% of the time.  I can't even take a hand off him to do something simple like pay for an item I am purchasing.  If I did that, he would be gone.  Most children by 4, have a basic understanding that you can't just run out into the road.  Sure, they can't be trusted to navigate traffic properly on their own, but most can be trusted to walk, and then stop at the edge of the road to wait for their parent to cross safely.  Mine can't.  He has no sense of danger, no concept of what might happen to him.  Going somewhere with him, although he can walk, still involves physical management 100% of the time unless it happens to be a safe, kid oriented location where he is able to have some freedom.  Even then, 100% supervision is still needed to ensure that his behaviour isn't detrimental to other people trying to enjoy the space.  Because my child doesn't know how to play like a typical child.  He doesn't understand other children's games, and he doesn't understand appropriate use of shared equipment.  My neurotypical 2 year old walks on her own, while I have to constantly manage my 4 year old.  My 2 year old is better at listening, following directions and staying safe.  Don't misunderstand that either.  She isn't some freak of nature.  She is like any other 2 year old.  She wants her own way, she is wilful, impulsive, defiant, and can throw a tantrum like any other.  But she is STILL easier to manage than my 4 year old when out in public.  

I'm really grateful that my child can walk.  I'm really grateful that the amount of special equipment that we need is minimal.  I'm really grateful that he doesn't currently have seizures.  And I am really grateful that he is in good health.  I KNOW there are loads of parents out there doing it tough with kids whose daily needs are much greater than mine.    But please don't look at my child walking and discount our struggles.  Intellectual Disability affects every aspect of a person's life, just like a physical disability does.   My child's intellectual disability is greater than his physical disability.   There are so many skills that go into independent daily living that we take for granted if we are not forced to think about them, and having an Intellectual disability impacts all of these things.

Intellectual disability is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills.  
Intellectual functioning—also called intelligence—refers to general mental capacity, such as learning, reasoning, problem solving, and so on.

Adaptive behavior is the collection of conceptional, social, and practical skills that are learned and performed by people in their everyday lives. 
  • Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.
  • Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
  • Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.
Please don't assume that because my child can walk, it means he won't have significant problems with some or all of these tasks that are essential to daily living.  He has already been tested and scored "very low" for his adaptive functioning.  He is at or below the 1% mark for children his age in all areas of functioning.  Yes, there are children who score below him.  That doesn't change the fact that the vast majority of children his age score well above him.
We can continue to hope for improvement.  We will continue to work towards improvement.  He is only little.  That percentage may or may not change in the future.  But one thing is for sure, and that is that he will always have some degree of intellectual impairment and deficits in adaptive functioning.  He is not going to "catch up".  He isn't ever going to be "average".  

Walking isn't everything.  

Saturday, October 11, 2014

Getting Ready for School

Here in Australia, our school year runs with the calendar year, so the school year starts in Late January and runs through to December.
Children typically start preschool the year they turn 4, depending on where their birthday falls.  Here, the cut off date is the 30th June, so children born in the first half of the year can start preschool at the beginning of that year (at 3.5) and children whose birthdays fall later in the year, will start pre-school the following year.   (Some children will start as soon as they turn 4, and do 1.5 years of preschool)
Preschool typically is a program of half days, about 3 hours a day, or some schools do 3 full days (full days being normal school hours of about 8am to 2:30pm)  
With his May Birthday, Joshua would have been able to start preschool at the beginning of this year, but I had decided to hold off a year.   His Birthday is only about 6 weeks before the cut off date, so that would have made him one of the younger children in the class, and combined with his developmental delays, I felt it would be better to just wait another year, and give him a bit more time to work on some of the basic preschool skills that other children would already be doing.  In that time, we started doing some more private therapy in addition to Early Intervention to help him with his preschool readiness.  Joshua has attended day care for 2 days a week since he was 19 months old, and in April this year, that changed to 3 days a week as I began to work again outside of the home (at the daycare centre which he attends)  Daycare and preschool both operate under the same national curriculum, the Early Years Learning Framework, so technically speaking, Joshua has still been getting some "preschool" anyway.  

For a long time, I felt certain that I wanted Joshua to attend mainstream school.   And I felt a bit offended when asked by therapists etc, if he would attend the local special needs school.   Like, do they really think he is THAT bad?  Over time however, my thoughts changed, and I began to feel that perhaps the special needs school would be the best choice for Joshua.   I didn't want to make a decision too soon, because I felt that there was no way to know where Joshua would really be at when the time came, since he does continue to make progress at his own rate, and I've learned by now that it is entirely up to Joshua to show us what he can and can't do.  It does no good for me to try and guess these things, because there is a fine line between being disappointed when he doesn't achieve something you thought he might, and being surprised when he achieves something you thought he wouldn't.   So I try not to engage myself in such speculation!

Despite Joshua continuing to make wonderful progress at his own rate, over the years I have watched the gap between Joshua and his same age peers widen.   I am around Joshua and the other preschool children at work enough to know that they are years ahead of him, and that he needs a lot of support to try and participate in the same program as the other children do.  I also know that there have been challenges as to the inclusiveness of the program.  My own daughter Amelie, is 27 months old, and well ahead of him developmentally in pretty much every area.  Where I had once hoped that maybe Joshua could just "catch up", I know now that he has not, and will not.  It took a while to know for sure that Joshua has been cognitively affected by his brain injury.  At first, you aren't sure if they can't do things because their motor skills don't allow them to.  But Joshua's motor skills have progressed well, and while he definitely does have physically limitations, he moves well enough now that this doesn't explain any inability to perform a cognitive task.  Then you wonder, maybe it is because he has limited speech.  Maybe once his speech improves he will be able to show us all the things he knows.  But all along, I knew that children can still show their intelligence even without speech.   Joshua was capable of pointing at things.  I'd watch videos of children much more physically affected than Joshua being able to show they knew cognitive skills like colours for example, by pointing or gesturing in some other way to the correct colour when asked.  But Joshua could not.  It has been a process to get to this point, but now it is evident, and we have accepted that Joshua has an intellectual impairment in addition to a physical impairment.

This doesn't mean that he can't learn.  He can.  He knows lots of things and he is learning new things all the time.  It just takes him longer than most children, and the things he is learning right now, are the things that other 4 year olds learned a few years ago, and now I feel that being in a classroom full of children who are years ahead of him, wouldn't be the best learning environment for Joshua.

In July this year, we started the process of having Joshua's eligibility determined for Special Education.  Your child must meet the eligibility requirements in order to enrol at a special needs school.   The Education Department defines eligibility as follows:

1.3.4 General intellectual ability two or more standard deviations below mean on an individual test of intelligence or other evidence of significantly delayed intellectual development should the student’s disabilities prevent standardised assessment, and1.3.5 Score of two or more standard deviations below mean on a standardised assessment of adaptive behaviour for composite score or in at least two areas: communication skills, self-care, home living, social and or interpersonal skills, use of community resources, self-direction, leisure, health and safety.

So that was the first step obviously, in deciding where Joshua would go to school.  If he wasn't eligible for special education then obviously he would have to go to a mainstream school, but if he was, then that would be an option too.  Initially, he was visited by some people from School Support Services at the Education Department.  They went to Day Care and observed him there with the other children in the preschool environment, and spoke with his Educators.  That was like an initial visit to gauge whether or not it was necessary to proceed with further assessment.  They decided it was.  So in August we were visited at home, and they did an assessment using the Vinelands Adaptive Behaviour Scales.        

Vineland Adaptive Behavior Scales are a valid and reliable test to measure a person's adaptive level of functioning. Vineland-II forms aid in diagnosing and classifying mental retardation and other disorders, such as autismAsperger Syndrome, and developmental delays. 
It seems this assessment is commonly used, here in Australia at least, to determine eligibility for special education.   It has taken quite some time to get the results of the assessment, however I did find out the results a few weeks ago despite the formal report not yet being finalised.  This is the Bell Curve that I was provided with to show how the scores work.  Scoring between 90 and 110 is considered to be average.  80-90 is considered to be "Low Average" and 70-80 is considered "Borderline".  A Score below 70 is considered "Very Low" and means a child is eligible for special Education.  Joshua scored 56.  This places him in the "Very Low" category and means he is able to attend the special needs school.    

After finding out several weeks ago that Joshua WAS eligible for special education, I asked some questions about what would happen if we decided to enrol him in a mainstream school.  What sort of support would he get?  The answers didn't fill me with much confidence.  I was told that at best, a child with high needs is funded for a support person for 3 hours a day (half the school day).  At worst, a child with low needs might get an hour a week.  And there is no guarantees that the support person would have any sort of special training for the role.  This is what is funded by the government.  Individual schools can (and some do) choose to supplement the support out of their own funds, to provide support above and beyond these amounts, but it is at the schools discretion and you would need to obviously shop around schools and find one that was willing to do that for your child.  I was also told their there is a limited amount of funding available and it is the same amount all the time, and it gets divided up between all of the children who need it, whether there is 50 children or 200 children, so the level of support a child can get can very term to term or year to year depending on how many other children there are that also need support.  I also talked to other parents to find out what a private school would be like instead of relying on the public school system and I was told that going private was without a doubt worse, and that many private schools are not interested in helping a child with special needs at all.  Of course, this is a generalisation and there will always be exceptions, but for the most part, it doesn't sound like a valid alternative.   It blows my mind that Joshua currently gets support for a full day at day care (5 hours being funded by the government, but with the centre choosing to provide support for a full day) and then he could go to a mainstream school and get very little in the way of support.  It just doesn't cut it to me.  I cannot see how Joshua could possibly function in a mainstream setting without a support person for an entire day.

So, we went and toured the special needs school (there is only one here to choose from) and started the process of enrolling him.  The school has small class sizes of only about 6 children per class, with one teacher and one teaching assistant, and depending on the needs of the children in the class, there can be more adult assistants.  The school itself has been purpose built and opened at that location in 2012 after they outgrew their previous location, so its very modern and has nice facilities, and we hope that it is going to offer Joshua a good start to schooling.  We learned that the preschool class (which is what I was originally planning for Joshua) was already full for next year, but that there was places in the Transition class.  Transition is the first year of full time schooling here, and Joshua is old enough for that class, since age wise, he should have been in preschool this year already.   At the special needs school, they work to the child's individual needs and rather than focus just on an academic curriculum, they encompass all of the skills children need to become independent.  Life skills, not just academic skills.   So because they will be meeting Joshua where he is at, and working from there, I don't need to worry about Transition being "too hard" for him.  There is no way I would have enrolled him in Transition at a mainstream school, considering even the preschool children would be well ahead of him, but in the context of the special needs school, I decided it would be ok to enrol him in the year level that corresponds with his age.  School isn't compulsory here though until a child turns 6, and they told us that we could negotiate a staggered start if we felt 5 days of school was too much to begin with.  I think he will probably be fine though.
The school also has what they call satellite schools too, which are classrooms within other mainstream schools, that are taught by teachers from the special needs school, but integrated in a mainstream setting.  So this would also be an option for Joshua in the future.  We plan to just see how he goes, and seek feedback from his teachers too.  If they feel he is doing really well and that he would be better off being in one of the satellite schools, then we would do that.  Its all just a wait and see (as usual!).  So it is very exciting (and scary!) that our boy is off to "big school" next year.  We can only hope that it is going to be an amazing thing for him that helps him to grow and develop even more.

The graph below shows his actual results from the assessment in each of the areas.  He scored on the 1st percentile for socialisation, and below the first percentile for everything else.  (I'm surprised that they found socialisation to be his best area, I would have guessed motor skills, which did come a close second!)  They also described his "maladaptive behaviours" to be elevated for his age.

The following strengths and needs were also identified:

Strengths: Joshua is able to perform the following tasks: 

 Follows instructions with one action and one object 
 Points to common objects in book as they are named 
 Says at least 50 recognisable words 

Daily Living Skills 
 Feed self with spoon without spilling 
 Sometimes clears breakable items from own place at table 
 Demonstrates the function of telephone 
 Wipes or blows nose using tissue or handkerchief. 

 Shows interest in children the same age 
 Imitates simple movements 
 Chooses to play with other children 
 Ends conversations appropriately 

Motor Skills 
 Hops on one foot at least once without falling; may hold on to something for balance 
 Climbs on and off high objects 
 Completes simple puzzle with at least two pieces or shapes 

Needs: These have been listed as a prompt to the provision of learning opportunity through the Educational Adjustment Plan, and are to be introduced progressively when seen to be appropriate to Joshua’s capability and readiness. These items will in most cases, need to be introduced initially with prompts from an adult, with the long term goal that eventually he will be able to perform the task as an independent action. The actions listed below indicate the next sequential level of development for him. 

 Follow instructions if-then form 
 State own first name 
 Identify one or more alphabet letter as letters and distinguishes them from numbers 

Daily Living Skills 
 Let someone know when he has wet or soiled nappy or pants 
 Pulls up clothing with elastic waistbands 
 Careful around hot objects 
 Helps with simple household chores such as pick up toys, own cloths 

 Imitates or tries to imitate parent’s facial expressions 
 Demonstrates friendship-seeking behaviour with others the same age eg says “Do you want to play?” or takes another child by the hand. 
 Play cooperatively with one or more children for up to 5 minutes 
 Shares toys or possessions without being asked. 

Motor Skills 
 Unwrap small objects 

 Turn book or magazine pages one by one 

So there we have it.  Exciting times ahead for us all.  

Friday, July 25, 2014

Occupational Therapy Assessment Results

2 months ago, I took Joshua to a private Occupational Therapist, with the view of getting more focussed therapy to help Joshua with readiness for preschool.

Today we received the results of his assessment, and they are as follows:

Joshua has Cerebral Palsy (diagnosed at 13 months) secondary to Hypoxic Ischaemic Encephalothy and secondary microcephaly. He has Spastic Hemiplegia (GMFCS Level II) affecting predominantly the Right upper and lower limb (with some involvement of his left side), and global developmental delays. 
Joshua has been seen by a number of Allied Health services in the past, and is currently a client of Carpentaria Disability Services – Early Intervention Services (CDS-EIS) where he attends a weekly therapy session (fortnightly from July 2014), and Private Physiotherapist Phil Sutherland of Moil Physiotherapy (monthly). His Paediatrician is Dr Peter Morris of Royal Darwin Hospital. Joshua is regularly reviewed by the Visiting Paediatric Rehabilitation Service (Adelaide Women’s & Children’s Hospital), with his next review scheduled for October 2014. 
Joshua had serial casting for his Right leg in December 2013, and wears an AFO. 

Joshua attends childcare 3 days/week, and recently moved to a new Childcare Centre, which includes a preschool program. Karissa is considering transitioning Joshua to the preschool program in the second half of this year, with enrolment in a full preschool program in 2015 (school still to be decided). 

Karissa reported that Hearing was last tested in 2011, with results showing adequate hearing for speech & language development. Vision was assessed in January 2012, with results indicating no concerns. A recommendation was made that Joshua have his vision checked prior to starting school. 
The following information regarding Joshua’s communication and play skills was provided by Speech Pathologist Gabrielle Kelly of Carpentaria Early Intervention Services in May 2014: 
- Communication - Comprehension: currently working on early concepts (wet, out, off) and possession words (my, mine, your) 
- Communication – Expression: Using 1-2 word phrases such as “down there”, and has a number of favourite words/phrases that he uses. 
- Augmentative & Alternative Communication (AAC) - Have commenced using PODD (Pragmatic Organisation Dynamic Display) Communication Book – a multi-level communication book, with words and symbols arranged in a systematic way. 
- Now able to stay at one play idea for extended periods, enjoys some basic pretend play (home themes such as bathing baby), and play sequences up to 5 steps with encouragement. 
- Needs support to sequence the steps to an activity, will leave the activity when challenging; sequences need to be slowed down and broken down into achievable steps. 
- Requires space/pauses/waiting time to think, process, sequence and respond 
- Have commenced work on speech sounds. 

Recent Physiotherapy Gross Motor goals include: R foot tap, squatting with best possible symmetry, single leg balance, catching, bike riding (feet strapped to pedals), and investigation of suitable seating to assist floor sitting. 
Further details regarding Joshua’s musculo-skeletal status and gross motor function are available in the CDS-EIS Referral Letter to private Physiotherapy Provider February 2014. 
Preschool Skills 
Fine Motor 
Self Help including Dressing Skills 
Joshua was assessed over two occasions at the OT for Kids NT clinic. He attended with his mother Karissa and younger sister Amelie aged 2. 
Joshua presented as friendly, curious and active. He found it difficult to attend to tasks for long periods and was easily distracted, but cooperated to the best of his ability with prompts and encouragement. 
Selected sections/tasks of the following assessments were used as appropriate: 
Play based observations 
Parent discussion 
Sensory Processing Measure- Preschool (SPM) Home Form 
Symbolic & Imaginative Play Developmental Checklist (SIP-DC) + parent report 
Kidscreen Occupational Therapy Profile 18 months – 3 years, 3 – 6 Years 
Cerebral Palsy Upper Limb Assessments 

Assessment: Observations, general impressions & parent report 
Joshua sits in an asymmetrical W-sitting position, which Karissa reports is not usually corrected, as he is quite active and hip surveillance results have so far been normal. He is not able to sit stably in cross-legged sitting, or in long sitting without support. He can be encouraged to sit in a semi side-sitting posture. 
During assessment Joshua communicated by simple gesture, other non-verbal strategies such as facial expression and eye contact, and the occasional single word such as “No”. He presented as a willing communicator who was able to get his message across; he interacted well with the therapist by holding things up in front of her to show or request that she do something. He often required gesture, demonstration and repetition in order to understand instructions. 
Joshua enjoyed repetition of simple games such as a “rocket” game where the therapist held both Joshua’s hands around a wooden stick and flew them up in the air and around like a rocket. He appeared to get “stuck” on some activities, for example he wanted to repeatedly knock a block tower down rather than try to build it as high as he could. He also tended to imitate his younger sister, especially with activities that were not allowed, such as crawling under the table and playing with the window blinds. 
Joshua presented with limited play skills for his age – for example he put the whole toy cup in his mouth rather than pretend to drink from it, and no constructive or imaginative play was observed. Towards the end of the session Joshua tended to throw toy items over his shoulder rather than play with them more constructively. 
Joshua frequently mouths, licks or puts objects into his mouth. He also uses his mouth to manipulate objects – for example holds the item in his mouth to allow him to re-position it in his hand. Joshua had some difficulty with saliva management, with some drooling noted at times. 
Joshua tended to ask for help or give the item to an adult when having difficulty, however he could be encouraged to persevere with support. 
Socially Joshua’s mother reported (via the SPM) that Joshua is still learning to: play with friends cooperatively, share things when asked, join in play without disrupting it, participate appropriately in family outings or activities with friends, and cooperate during family errands such as shopping. 

Assessment: Upper Limb Assessment & visual function – informal tasks with reference to Cerebral Palsy Upper Limb Assessments 
Result: impaired skills in line with diagnosis, but good functional ability 
MACS (Manual Ability Classification System for Children with Cerebral Palsy 4 – 18 years) – likely Level II: Handles most objects but with somewhat reduced quality and/or speed of achievement. 
- Spontaneous bilateral use of hands together eg. to open containers, large bead threading and maintaining grasp as required 
- Good transfer of objects hand to hand. 
- Able to bring hands together in midline eg. to squash playdoh 
- Functional grasp using the R hand – able to open hand and fingers/thumb fully to grasp a container, and able to maintain a firm hold on the container eg holding the playdough container while getting the playdoh out with the other hand. 
- R pincer grasp – inconsistent spontaneous use of a crude pincer to pick up small items, however was unable to then use this grasp functionally, such as re-orienting/ manipulating the small item in this hand. 
- Transfers small items to his L hand when precision or manipulation is required, for example to place it in a hole. 
- Had some difficulty reproducing spontaneous actions on request – for example when asked to again use a basic pincer grasp he tried to use a whole hand grasp; this could indicate motor planning difficulties. 
- Always reaches across with his L hand to pick up an item on his right side during spontaneous movement, however with encouragement will reach for an item with his R hand. 
- Orients activities to his left side, or turns his body to the right to perform tasks. 
- Difficulty using two hands together in coordinated motion eg. to roll a playdoh snake. 

While Joshua has good function of his Left (less-affected) hand, some reduced skill for age is noted – for example: 
- held a knife awkwardly and needed hand-over-hand assistance to help him re-position to enable cutting. 
- lack of precise pincer grasp and in-hand manipulation– for example had difficulty imitating a tripod grasp action (“crab fingers”); this may also be related to a motor planning difficulty. 
Joshua had difficulty with smooth and consistent follow of a moving object with his eyes, visually locating objects, changing his visual focus from one object to another, and keeping his head still while just moving his eyes. He was generally was slower with these tasks, but could achieve them with time and encouragement. Difficulty with visual movements is likely impacted by impaired motor control (head and eye movements), reduced motor planning, and reduced visual and general attention. 
Joshua had some difficulty with visual attention, needing occasional reminders to look at what he was doing; he was also easily distracted by other items in the room. 

Difficult to formally assess as Joshua was resistant to handling by the therapist, however the following is noted: 
- Increased tone of the R upper limb with shoulder retraction and elbow flexion when doing unilateral tasks with the other hand. 
- Slight-moderate decrease in Active ROM at R shoulder and elbow when raising arms high. 
- Full Passive ROM of the R upper limb at the elbow has been noted in previous assessments. 

Upper Limb muscle tone, strength, range of movement & sensation can be further assessed and monitored as required during therapy sessions. 

Assessment: Sensory Processing Measure - Home Form 
Comments: Results indicate that sensory processing factors that may be impacting on Joshua’s performance of daily tasks, with the main features as follows - Joshua: 
Is over-responsive (more sensitive) to visual input – for example he has trouble paying attention/completing tasks if there are a lot of things to look at, is bothered by busy visual environments, & becomes easily distracted by looking at things while walking. However he also seek visual input (enjoys watching objects spin & move, flips light switches on and off repeatedly). 
Is also occasionally over-responsive to auditory input, for example is easily distracted by background noises, responds negatively to loud noises. 
Seeks oral sensory input for example by tasting non-food items. 
Seeks intense input (body awareness feedback) from muscles and joints for example seems driven to seek activities such as pushing/pulling/dragging/jumping; chews on toys, clothes, or other objects, seems to enjoy sensations such as crashing on the floor. 
Has difficulty with postural control, as expected for his diagnosis - for example he leans on other people/furniture when sitting or trying to stand up, and has poor coordination. While Joshua is very active and enjoys movement activities, he is also occasionally fearful of some movements such as going up/down stairs, or using swings, slides and other playground equipment. 
Has difficulty with Ideation (the ability to create a concept or mental image of a new task), for example tends to play the same activities over and over. Has occasional difficulty with motor planning, such as gets confused about the proper sequence of actions for everyday routines, difficulty completing tasks with multiple steps, difficulty imitating demonstrated actions eg. movement games /songs. 

Assessment: Kidscreen Occupational Therapy Profile 
Result: Significantly delayed fine motor, visual perceptual and concept skills for age. 
Joshua’s performance was likely influenced by his difficulty understanding some task requests, his reduced attention, and his sequencing/planning difficulties. 

Joshua is able to: 
Insert a wooden dowel “needle” into large wooden beads but had difficulty pulling the string through 
Unscrew a lid with some assistance 
Build a tower of 6 blocks 
Use two hands to open and close scissors but not cut 
Take stacking rings off and put some back on (not in size order) 
Do circular and back-and-forth scribble using a crayon 
Roughly imitate vertical and horizontal lines, and circular scribble (imitation of a circle) with repetition and prompting 
Use a L digital-pronate grasp to hold the crayon while drawing 
Place pegs into a pegboard 
Joshua had difficulty or is unable to: 
Match photos or pictures without support/prompting 
Make snips in paper with scissors held in one hand 
Imitate simple 4-block designs 
Imitate simple body postures without prompts 
Put stacking rings back in size order 
Identify the big one from a choice of two items 
Complete a 4-piece formboard or 2-3 piece puzzle (difficulty with selecting correct piece, using small movements to make the piece fit, and perseverance) 
Put 2 halves of a toy (wooden fish) together. 
Imitate a circular stroke, copy a horizontal or vertical line 
Assessment: Self Care skills – information from parent 
Result: delayed for age 
Toiletting: not yet toilet trained, and is not showing signs of awareness or readiness – although will now say the words “wee” and “poo” 
Mealtimes: feeds himself with a spoon and has started using a fork to stab and pick up food; is unable to spread with a knife – instead he stabs the knife around. 
Dressing: requires assistance 
Joshua is an energetic, engaging and curious boy who presents with significant delays across a number of developmental areas, but good function and participation within these difficulties. He enjoys movement and is willing to attempt most activities with enthusiasm! 
Along with his communication and gross motor delays, Joshua has: 
- Poor sitting posture (in particular for floor sitting) which together with reduced balance and postural control, impacts on his performance of skilled tasks. 
- Slightly impaired use of his right upper limb and to a lesser extent his left upper limb as well as bilateral skills, but functionally manages well at this stage of his development 
- Delayed fine motor skills – including for drawing/prewriting, cutting, manipulation and skilled bilateral tasks. 
- Delayed visual-perceptual (puzzles, picture & object matching, sorting like objects) and concept skills (size, colour, shape) for his age 
- Limited attention and is easily distracted 

In addition, Joshua has some sensory needs which impact on his daily performance. In particular his over-sensitivity to visual and to a lesser extent auditory input leads to him being easily distracted; his need for feedback about his body (proprioceptive input) leads to him seeking out intense movement activities such as jumping, crashing and chewing on non-food items; his need for oral sensory input leads to him tasting/chewing non-food items; and his reduced postural control impacts on his performance of skilled movement tasks. 
Joshua is sure to enjoy preschool but will require a high level of support and curriculum adjustment in preschool and beyond, in order to maximize his learning potential. 

1. Individual OT sessions in order to develop skills in identified goal areas: 
a) Preschool Skills – a range of fine motor, visual perceptual and concept skills, as well as on-task behaviours such as attention and task completion 
b) Bilateral upper limb skills including fine motor skills 
c) Toileting 
d) Self Help including Dressing Skills 

These sessions can also incorporate work on sequencing and motor planning. 
2. Provide opportunities at home and childcare/preschool to meet Joshua’s sensory needs: 
a) Body feedback/”heavy” movement activities (these activities will als0 improve body awareness & postural control) – using attached Proprioception activities handout. 
b) Targeted visual activities - to help teach visual discrimination (simple treasure hunts, find the hidden object, what’s different) and visual tracking (ideas can be supplied), as well as ensuring that visual stimulation is limited or reduced when attention to task is required. 
c) Meet oral sensory/proprioception (through the jaw) needs by offering chewy food, drinks through a straw (including thick liquids such as smoothies); offer acceptable alternatives (eg. a chewy bracelet or toy) when Joshua puts a non-food item into his mouth. 

3. Trial and prescribe seating and other equipment as required for preschool and home. Discourage W-sitting where possible via provision of alternative seating positions; continue to work on improving floor sitting position including investigation and provision of seating, in conjunction with treating Physiotherapist. 

4. Referral to Education Advisors, Early Childhood Intervention (School Support Services, Dep’t of Education) – for further assessment, assistance with preschool placement, and support (This was actioned following initial assessment) 

5. Ongoing liaison with other service providers (Private Physiotherapy, CDS-EIS, Education Advisors ECI) as required. 

6. Childcare/Preschool recommendations: 
a) Discourage W-sitting where possible; provide alternatives such as Joshua to use his “long sitting” chair at preschool/childcare when sitting on the floor. 
b) Meet oral sensory/proprioception needs by offering chewy food, drinks through a straw (including thick liquids such as smoothies); offer acceptable chewable alternatives (eg. a chewy toy or bracelet) when Joshua puts a non-food item into his mouth. 
c) Provide lots of opportunities for movement and body awareness (proprioceptive) activities. 

Thursday, May 22, 2014

Joshua is 4

Wow.  4 years old.  There is something about being 4 that sounds really KID like.   You can still pass a 3 year old off as a toddler, but 4......  it is something else!  He definitely isn't a baby anymore.  It is hard to believe I have a 4 year old.  Because whoa, that sure went fast, but also because in many ways, I really don't have a 4 year old.

Apparently 4 year olds know their own name and age.  They can answer questions and speak clearly in sentences.  They tell stories and sing simple songs.  They can correctly identify common colours, they know when things are the same and different, they can sort items by colour and shape.   They can do puzzles.  They have an understanding of basic time (morning, afternoon, night time etc).   They can follow three part instructions.  They can count and understand the concept of it.   They know how to pretend.  They can throw and catch balls and ride tricycles.  They can use scissors to cut paper.  They can copy simple shapes like circles and squares.  They can draw people.  They can draw a few capital letters.  Build towers with 9 or more blocks.  Dress and undress by themselves.  Use the toilet.   The list could go on and on......

Joshua does none of those things.   And to focus on that could really get a person down, so, for the most part, I don't.  Instead, I look at where Joshua is actually at, and how far he has come.  Joshua isn't on track developmentally, and at this point, it is unlikely that he will ever be.   Of course, in the earlier days, we did still hope that he might be able to "catch up" and all would be fine, but that is not what has happened, and you know what?  It is still fine.  Continual progress is the most important thing we can hope for, and we have got that.

A year ago, Joshua was able to say around 30 words.   Now he is able to say over 100 words.  He is starting to put 2 word sentences together.  He says things like "Mummy Car"  "Big Truck"  "All Gone"  "I do"  "Get Down".   Last week he even put 3 words together.  "I do Bubble".   He is a quiet boy (well, speech wise...  he is actually really  noisy!!) But the speech is coming...  and we couldn't be more thrilled.  He is able to answer questions with "yeah" or "no" now.  So that helps a ton with communication.   He is trying to copy words a lot more.  The words are just coming a little more freely.  I have always known in my heart that he would speak eventually, just like I always knew that he would walk.  So its nice to actually see some evidence of being right.  Hah!  It is slow, and it can be unbelievably hard not being able to communicate properly with your child, for both of us, but we will get there.   We have also started using a PODD Communication Book.  This is a picture based communication system and Joshua has shown some really good progress with it.  He understands what a lot of the pictures mean now, and it is particularly helpful in situations like when he is having a tantrum and I can show him the "Something's wrong" page and he can point to the grumpy picture etc and it really diffuses him when he is able to express that he is upset.  During therapy we also use it during activities, such as bubbles, or playing with cars or dolls, a lot of it right now is me telling him his story and pointing to the pictures, but he does look at them intently and there has been times when he has pointed at the pictures to us and its been genuinely in context.   You may have seen that I posted quite some time ago about making Joshua a communication folder.  We tried sign language too.  He just never picked up on these things before now.  But now he is ready.  He is ready to start talking and communicating, so I really think the next year is going to be a great year for Joshua when it comes to speech and communication.

Physically, Joshua does very well.  He walks, runs, climbs particular types of equipment, he is getting good at stairs.   He falls over easily and often.  But he doesn't let it bother him.  He just gets right back up and carries on like it didn't happen.  I guess you get used to it after a while!  It doesn't take much.  If you have ever walked past someone and bumped them with your body accidentally then you will know how easily it is for that to happen.  Unfortunately when I accidentally do that to my son it knocks him to the ground.  Luckily he is a trooper and doesn't let it get him down.   Gross Motor skills are now his strongest area.  Fine Motor, not so much.  He does do some nice things though.  He uses both his hands for two handed tasks.   For one handed tasks, his left hand is still very dominant and he will cross his body with that hand to reach things on his right side to avoid using his right hand, but it is very good that he will use both hands to do things when he needs to use two hands.  He feeds himself pretty well.  But there are lots of fine motor tasks he struggles with.  For example, wooden food.  The kind that sticks together with velcro and you cut apart with a wooden knife. It is very hard (almost impossible) to him to angle the knife properly in-between the two pieces to cut them apart without help.  He can't do things like zips on clothing or bags etc.  Lots of small things that you really don't think about a great deal are hard or impossible for him.  But we are very lucky that Joshua is able to do a lot of basic fine motor tasks for himself that other children with Cerebral Palsy can really struggle with, like eating, opening door handles, pressing buttons etc, so you gotta count the blessings where you find them :)  

Along with speech, Cognitive ability is one of Joshua's biggest struggles.  I often amuse myself by thinking (or saying to someone else)  "Look how smart he is" because he has done something like Pointed at a familiar person when asked where they are, or found a familiar object from a place where it is always kept.  I get impressed when he does things like that.  Because it shows he knows what objects are, who people are.  He is aware of things going on in his environment.  The other day I asked him something and he said "No" and started having a tantrum, and I said to Rod "It makes me happy that he did that because it shows he knows and has an opinion".   But when you compare Joshua's "smart" moments to what kids his age are "supposed" to know, they don't seem all that smart anymore.  Oh well!   I'm well aware that my 22 month old daughter understands me better than he does, that she can carry out instructions better than he can (its pretty handy to be able to ask someone to get the new toilet paper off the table for you if you find yourself stuck in the toilet without any....  Hah!  But Joshua isn't the one to ask!)  And yet, I still get excited about how "smart" Joshua is.  They say "Comparison is the the thief of joy".  And it is.  So best not to compare and just celebrate the good things, whatever they might be, and not worry about what other people's good things might be!  We have to really focus on teaching Joshua a lot of basic concepts that come easily to most children.  Things like "Under",  "Behind", "big"  "Little", "wet", "dry", These are all things that kids generally just pick up naturally in life.  But not Joshua.   We have to go out of our way to really teach these things, lots and lots of repetition.  It takes time.   But the fabulous thing is that he does learn.  It takes a lot lot lot longer, but he does eventually learn things.   Yippee.  We believe has learnt big now.  I used to always say 'Big Truck" to him and he started to say it, but I wasn't sure he really knew what big meant.  But in the last couple of weeks he has said things like "Big Kick".   "Big Bubble"..  And according to his speech therapist, when a kid starts applying a word across different contexts like that, you know they have nailed it.  He also knows "Hot".   Currently we are working on "Under" and "wet".  

Socially, I have noticed Joshua is playing much better around other children lately.  His play skills are not age appropriate.  He doesn't understand the rules of games that children his age play.   They can get frustrated with him for "ruining" their games, but overall I feel he is getting better.  I don't have to hover over him quite so much in social situations as what I used to.  A year ago, I would have to be there to "manage" his interactions with other kids all the time.  But lately I have been able to sit back and watch a little more and be a little less ready to pounce.   Some children at day care have said things to me like "Joshua can't play with us because he is a baby, he can't talk".  Or "I don't want him to play here, he always plays silly and wrecks our stuff".  Which is kinda sad.  Another common scenario is that when he tries to stand up from sitting on the ground he will put his hand on another child to support himself to stand up, or when he gets up he can't manage his legs well and accidentally kicks them into someone as he is trying to swing them around to get up and that will inevitably result in the other child whining "He hit me!" When of course, it was an accident, and he just has trouble getting up.  It is a little depressing, but at the same time, he still has friends.   His special "girlfriend" who he has been going steady with for a couple of years now (Hahaha) and I have been told by his day care teachers about some other friendships that are beginning to develop with him.  So that is nice.  
Joshua and his special friend, Olive. 

It is heart warming to see the love between these two despite Joshua's challenges.
Like all couples, they have their fights too though!  :)   

Recently, we have started pursuing some private therapy in addition to our government funded early intervention.  We are now doing some private Physiotherapy, and have just started private Occupational Therapy.  We are still in the assessment process for that, so I will have more of an overview and plan from that soon.  In ordinary circumstances, Joshua would have started preschool at the beginning of this year (Children who turn 4 before June 30 can start preschool at the beginning of the school year).  However, in light of Joshua's developmental delays and his late May Birthday, we elected to delay Joshua starting preschool until next year.  Our focus now, is on getting Joshua as ready for preschool as we can.  I had really hoped he would be toilet trained by the end of the year, but we will see.  The Physiotherapist helps us with Joshua's gross motor skills, but the Occupational Therapist is who is really going to help us with Joshua's preschool skills and I feel that this is a fabulous time for us to have started pursuing additional therapy as Joshua is really coming along at the moment and showing us he is "ready" to start doing more.  So I will definitely report back once we have a plan of action there!  

I am really excited to see what the next year is going to bring for my little man, and while it is hard to know what is going to happen in the future, I do know one thing, and that is that he will keep being awesome :)  

This is one of my favourite recent photos of Joshua.  

Joshua, heading home from Day Care.  He looks like such a grown up boy here :)  

And in case you missed it....  Joshua's annual Birthday Video!

Sunday, January 5, 2014

Our Serial Casting Experience So far...

As I mentioned in my last blog post, it was recommended that we try Serial Casting with Joshua to correct a deformity of his foot being caused by a short calf muscle.
His foot was really bothering me as it was very swollen compared to the other foot and his feet were constantly blistering due to friction in normal shoes, and he was also not tolerating AFOs.  At least, not the poorly made AFOs we've been forced to deal with lately :(

This is a photo I took of his feet.

They are very dirty as I took this after he had been outside!  You can see his right foot  (the left on this picture) is quite a bit larger than the other side due to the swelling.  His left foot has a blister visible, and his feet are extremely flat with no arch.  
When Joshua walked, he was walking with his foot on the inside edge of his right foot, and he was not getting his heel down to the floor when walking.  He was also experiencing internal rotation from the knee, where the leg from the knee down sort of swings out and then inwards as he took a step.  Despite this, Joshua was able to walk and run and play, but it compromised his stability, causing him to fall frequently and hindering his ability to negotiate uneven surfaces as well as other children do.  We hoped that doing serial casting would help correct these problems and give him a more normal gait pattern and help him walk better.

Here is a video of Joshua walking, taken earlier this year.

So, what is serial casting?  It is when they apply a series of casts, replacing each one every week or so, to gradually alter the position of the leg, stretching out tight muscles and in our case, repositioning Joshua's foot, trying to help create an arch.  

The first cast we applied was a soft cast, and it was applied on a Monday and changed on the Friday.  We did it for a shorter time the first time because we were concerned about how Joshua's skin would hold up under the cast.  The cast is not allowed to get wet, and you also need to avoid things like sand, because if sand gets into the cast then it would be very abrasive against the skin.  Keeping it clean and dry was the biggest challenge in doing the casting because Joshua is quite an active boy and loves water and sand, especially when he goes to day care for 2 days a week.  In order to help keep it clean, when he went to day care, I used one of Rod's big football socks and put it over the top and up his leg a bit above the cast to keep any dirt out.  I called it my "insurance layer".   Of course, I asked the day care staff to keep him out of water and sand, but I know what Joshua is like and it would only take 2 seconds for them to look away and give their attention to another child and he would be off into that sand pit.  The sock seemed to work well, because we didn't end up with sand in any of his casts.  Thank goodness.  He also cried to go in the bath with Amelie at night, which wasn't possible, so that was a little tough too, but worth the battle if the casting would give us a good outcome.  I bought some waterproof cast covers so he could have showers occasionally, but mostly I just tried to wipe him clean.  I didn't really trust the cast covers as a few times water seemed to get into them.

His first cast was blue and very bulky.

It didn't really slow him down though, he was still just as much into mischief as ever!

During the day time, Joshua was happy and playing as normal but we did have some hard nights where he would scream and cry.  It is very hard when your child is unable to communicate very well, because you don't know if they are in pain, or just annoyed by it, or what is really the problem.  I was a bit concerned it could have been damaging the skin underneath.  When it was removed, it was a little damp, but his skin was ok.  In order to help with the dampness, the physio decided to try a different lining material on the next one, that would hopefully absorb sweat better and stop his skin becoming so damp.  Again, it was a soft cast.  This is the preferred method of casting for young children as the parent is able to remove the cast themselves.  It dries stiff, but it can be peeled off similar to a bandage, without any special tools, so if the parent becomes worried for any reason, it can be removed at home.

Joshua showing off his second cast, this time a red one!

Joshua seemed to tolerate this second cast a lot better, the screaming at night was reduced.  On Thursday night, the night before it was due to be changed, I decided to remove it myself.  There was nothing happening to overly concern me, but I just sort of felt a bit bad for him and thought I'd take it off and let him have a nice bath etc before getting the new one put on the next day.   As I peeled it off, it became apparent that the inners layers were very damp.  Very damp.  Once I got it all off, I gasped when I saw his foot.  It looked like a huge blister, but on closer inspection it was really just damp skin starting to break down.

Damp skin on the bottom of Joshua's foot after I removed the second cast
Side view, showing some damage to the heel as well
This was quite horrifying, and I didn't know if they'd be able to proceed with the casting with this damage to his skin.  I was very glad that I had decided to remove the cast even though there had been no outward concerns which prompted me to do so.  Thankfully, it dried out quite well overnight and looked a lot better by the morning.

The next morning, the whiteness was gone and it just looked a bit dry and flaky.  
We decided that we needed to try a different type of cast, because the moisture collecting in the soft casts was too much.  It isn't helped at all by the fact that it is the hottest and most humid time of year here I'm sure.  So the Physio suggested that we do a plaster of paris cast, with a hard fiberglass outside layer.  Plaster of paris is more absorbent, so should keep the moisture away from his skin much better.  The downside to this method, is that we'd have to cut the cast off using a cast saw which would be distressing for Joshua, and that I wouldn't be able to remove it myself if I wanted to.  I decided that it was worth proceeding with the plaster of paris because we could already see improvement with Joshua's foot placement.  This time she applied some "comfeel" which is sort of like a protective second skin that sticks on like a bandaid over the areas that had been suffering a little bit of skin damage.

He chose Red again for his Third cast, Plaster of paris with fibreglass.  You can see he had special 'cast shoes' to wear on the cast for walking.
If there was a problem with the plaster of paris cast, I would have to call the Physio, or if it was outside of business hours, take him to Emergency to have it removed.  Thankfully he tolerated it well, and when we went back to remove it, his skin wasn't too bad.  Removing it with the cast saw however, did indeed prove to be very traumatic, and consisted of me having to hold Joshua down for the process while he screamed and screamed himself into a red sweaty ball of fury.  Not pleasant at all, but you know what, he does the same thing when he gets his hair cut (part of the reason why you may often see Joshua with longish scruffy hair...  that and I thought it helped to hide his microcephaly.  Haha!  We have recently cut his hair short though and decided it doesn't look too bad at all...   But yes, he screams.)   So it is sort of just part of life.  

The next cast was an extra special one indeed.  Being just before Christmas, the physio used a bit of creative license and used red and green to make a "candy cane" effect.  LOL

Joshua seemed pleased with his new red and green cast.
Now, the ideal situation after doing casting, is to have a new orthotic (AFO) made, so that the child can go straight from the cast into a new orthotic, to help maintain the gains achieved from the casting.    Aaaand this is where things start to go to hell.   The orthotics department refused to give us an appointment when our Physio called for one, stating that we need a new referral from Joshua's paediatrician.  GAH.  Seriously.  In my opinion a child with Cerebral Palsy should just have an ongoing referral for orthotics.  The paediatrician doesn't really know...  he writes referrals because the Physio tells him to, and the physio confers with the orthotist as to what the child needs.  Its all red tape and very frustrating to me, seeing as Joshua has already had 4 pairs of orthotics, they already know him and know he needs them, but "policy" meant we were unable to get this appointment before Christmas.  So, it was decided that we'd take a break, and resume casting in the new year, when we were able to line it up with new orthotics.  She said we might lose some of the range we gained this time, but hopefully not too much and we'd do a few casts and get him straight into a new AFO.  Sounded reasonable to me, and she also constructed him a splint to wear at night time, out of some padded fibreglass which I was to bandage to his leg to help continue to get that stretch overnight.  

So we left with that plan, and I was extremely happy with the gains Joshua had made from the casting.  His foot placement was SO much better.  When I posted a video of him walking on Facebook, everyone also thought he looked much more upright and just generally much better.  I was so thrilled that the 4 weeks of casting had been so worth it and that Joshua's walking had improved so much.  You can watch that video Here.

Everything was merry and bright, until 2 days later, when Joshua was running around pushing a toy truck along, when he started to scream and then refuse to walk at all.  It was concerning, because Joshua typically has a very high tolerance to pain, even when his orthotics or casts have cause skin damage he has continued to walk and play and act like nothing was wrong, so the fact he was completely refusing to walk really bothered me.  I waited a couple of hours to see if he would improve but he did not.  So I took him to the hospital.  His very first visit to the emergency department in 3.5 years.  (Yes I know, we've had a very good run!!)

For the most part, Joshua was still happy and playing, and crawling around the place.  He just absolutely would not walk.  If you tried to make him, he would just allow his leg to buckle underneath him and fall to the ground.

Crawling around the ED

They did some X-rays of his leg and pelvis and did not see any fractures.  They said he must have just sprained his ankle.  There was an orthopaedic doctor who just happened to be around at the time who also had a quick look at him, and didn't see anything that concerned him.  The ED Doctor said he felt Joshua should be on the mend within about 3 days.  The Orthopaedic Doctor was more generous and said a week and he should be back to normal, but if he wasn't, then bring him back.  So that was fine.  We had ruled out anything being broken and just had to let him recover for a few days. We feel that his ankle was weakened and stretched due to the casting, and therefore more prone to injury.

In the meantime.  Joshua learned to hop instead of walk.  He got around either by crawling, or hopping on his good leg.  After posting this on Facebook, I became aware that this is actually pretty impressive.  Hopping on one leg is considered a 4 year old milestone, and here was my 3.5 year old hopping around.  My 3.5 year old with Cerebral Palsy can hop?!  I think that may be his first and only milestone so far to be achieved on the early side!!!  Haha, there is always a silver lining right?!

Unfortunately, 9 days later, Joshua was still not walking.  I took him back to Emergency.  The doctor thought he should definitely be weight bearing by now.  He also thought his ankle felt a bit warm compared to the other one.  He ordered more X-rays, this time, focussing on his ankle.  He said the previous ones didn't show the ankle in detail.  I wasn't really impressed hearing that, cos maybe it was really broken all that time and we didn't know because they hadn't taken a good view of it.  But, even after the new X-rays were taken there was still no sign of a fracture.  All it showed was some soft tissue swelling consistent with a sprain.  The ED Doctor wanted to have him reviewed by the Orthopaedics team, so was asked to refer him to the fracture clinic.  He said I would get a phone call to arrange the appointment, so off we went again on our merry way.

Fast forward to Day 12 and Joshua is still not walking, and I haven't heard anything from the fracture clinic.  By this time I'm starting to feel quite concerned.  Our usual physio from Early Intervention isn't contactable because they closed over Christmas, so I decide to try and call the hospital physio who did the casting.  She is with a patient when I call, so I left a message to have her call me back.
Later that day, Joshua begins to bear weight again and take very tentative steps.   That physio didn't call me back yet and I didn't hear from the fracture clinic either.  I am beyond frustrated that we have been dealing with this pretty much on our own and that Joshua didn't walk for 12 days.  We are now 14 days after his injury and he isn't back to normal.  He is walking, as you can see here, very cautiously, limping which I am relieved about, but he can't go very fast.  He reverts to crawling if he wants to go fast.

I fear this injury has probably undone all of the gains we saw from the casting, and I feel quite annoyed because I know this injury would have been prevented if he would have had a new AFO to wear once he came out of the cast.  Im annoyed that hospital red tape basically caused the injury, and I'm annoyed that I've pretty much had no help to manage it since.  Ive just continued trying to do his normal exercises that were suggested to do post casting (with minimal success) and I've been using the night splint on the leg as soon as he would tolerate it, But I really have no idea what the correct management is supposed to be now.

I guess the coming weeks will reveal more, but I can tell you that I will not do serial casting again without knowing 100% without a doubt that we will have a new orthotic to go into afterwards!!