Thursday, September 29, 2011

Developmental Assessment Results- 15 months.

Today I received the much awaited report from Joshua's Developmental Screening.  This assessment was done as part of the entry process to Carpentaria Disability Services (though we had already been told he was accepted before this screening was done).

So, here it is:

Joshua's Chronological Age at screening:
15 months, 02 Days  (15.07 months)

Assessments used:
Griffiths Mental Developmental Scales Extended Revised (GMDS-ER)
The results of this assessment will determine Joshua's eligibility for Carpentaria Early Intervention Services.

Referral information:
Joshua was referred to Carpentaria Disability Service by Dr Peter Morris, Paediatrician, Royal Darwin Hospital.  Joshua has a complex medical history and a diagnosis of Cerebral Palsy- Spastic Quadriplegia.  There are concerns with Joshua's overall Development.

An Ages and Stages Questionnaire complete in July 2011 by Melissa Reid from the Children's Development Team, indicated below cut off scores in all domains; communication, gross motor, fine motor, problem solving and personal/social.

Behavioural Observations:
The screening assessment with Joshua was conducted at CDS, Early Intervention Services Centre with his mother, Karissa present.  Joshua was happy enough but had difficulty remaining on task, preferring to occupy himself with the toys and playthings available.  He just loved the toy car and did not respond well to direction; from the examiner, his assistant or his mother, to attempt assessment items.  Karissa felt that today was a typical day for Joshua and that he performed according to her expectations.  With Joshua's concentration and co-operations, it is felt that today's results are a good estimate of his current abilities.

Griffiths Mental Development Scales - Extended Revised:
This is a Developmental assessment looking at the child's development in five sub-scales including locomotor, personal/social, language, hand-eye coordination, performance and practical reasoning.
A brief outline of the results is given below:

SCALE & AGE APPROXIMATE:
A.  Locomotor (Gross Motor Skills) - 7 to 11 months
B.  Personal/Social  (Self Care Skills, Socialisation Skills) - 5 to 9 months
C.  Hearing and Language (Language Skills) -  7 to 11 months
D.  Eye and Hand Coordination (Fine Motor skills) - 10 to 14 months
E.  Performance  (Puzzles, Problem Solving) - 9 to 13 months

Summary and Recommendations:
The results of this developmental screening assessment indicate that Joshua is currently functioning at approximately the 7.5 to 11.5 months age level.

The results indicate that Joshua's Development is significantly delayed.  It is important to keep in mind that the age equivelants are an estimate, and may change slightly if performed on a different day.

Based on these observations, Joshua was deemed eligible to receive services from Carpentaria Early Intervention Services; with significant needs requiring support from at least three disciplines (Occupational Therapy, Speech Pathology, Physiotherapy and/or Psychology)


And now for my thoughts...

Overall there is nothing new or shocking in this report.  My own estimation before having this assessment done was that he was around the 9 months mark, so I wasn't too far off.  The most shocking thing to me in the results was the score for Social skills.  Only because he seems SO social to me.  He loves people and goes out of his way to interact with them.  Though, when you think about it, I suppose his interactions are not age appropriate.  It just seems strange to say that someone who is so social is not very good at socialising.  LOL  I don't think I would have guessed that as being his "worst" area.
Other than that, the only thing that annoyed/amused me was the comment about how he had trouble remaining on task and did not respond well to direction.  I am not even sure what that means.  LOL  I think most kids his age are like that in terms of "remaining on task" and I am not sure what directions he didn't respond well to.  The way that was written makes it sound like he was having some kind of tantrum because he didn't want to do what he was told and was being uncooperative.  But that didn't happen.  Sure, he preferred to play with one thing over another...  especially when that thing was something he had zero interest in and was something that was too hard for him to do anyway.  Maybe it is because for example, when he tried to get him to do something (Like putting something into something else) he'd grab the piece and throw it.  But he wasn't doing that to be naughty or uncooperative...  he was doing that because he'd just learnt how to throw things and wanted to practice his new skill...  that, and throwing things is a lot easier than what he was *supposed* to do.  So it sort of annoys me that he was given the "uncooperative" label, because I don't think he really deserves that.  He was simply using the equipment that was offered to him in a way that was typical of his developmental level.

Oh well... None of it really matters anyway.  He is still doing awesome!

Monday, September 5, 2011

Stretches

Joshua is 15 months old and was diagnosed with Hypertonia (High Muscle Tone) at 12 weeks of age.  During that time, I was never given any formal instruction on stretches to do with him.  I was encouraged to stretch his legs...  even as often as every nappy change, but never given any specific instructions on how to do it.  I simply used common sense, and was also guided by some of the examples in the book "Teaching Motor Skills to Children with Cerebral Palsy and similar Movement disorders".  I bought this book when Joshua was 7 months old, based on the recommendations of other parents.  He had not yet been diagnosed with Cerebral Palsy at that stage, but it is very helpful at explaining high muscle tone and many different activities to help children with different areas of their development.  Following our visit with Sue, the visiting Physiotherapist we saw last Friday, Today, I was finally given some written instructions on stretches to do.  Basically, she told me that there is no evidence that stretching helps maintain range of movement.  But there is also no evidence that it doesn't, so they will always err on the side of caution and recommend that parents do this stretching as much as possible.  In Joshua's case, his right leg is worse than his left leg, so she told me if I am short on time, to just do the right leg.  She also did not say anything like "this must be done three times a day for so many minutes" etc, because she is realistic and just wants me to do what I can manage.  The real advantage to doing stretches, they said, is that I will be familiar with what his tone usually feels like and will know if it starts to feel worse or better.
Anyway, since it has taken this long for me to be given some formal instructions, I figured that there might be other parents out there in the same situation.  I tried searching for things online, but that was difficult when I didn't really know exactly what I was searching for.  So I have decided to post our instructions online in case they are helpful to someone who searches for this.

These are stretches for the legs, primarily for the calves, hamstrings, and abductor muscles, as these are the areas that Joshua's legs are affected by his high tone.      Physiotherapy Stretches

Friday, September 2, 2011

Another Set of Eyes

Today we met Sue, a visiting Paediatric Physiotherapist from Adelaide.  She came to our house to see Joshua, along with his therapist from Carpentaria Disability Services.  (I was really glad they could come to the house, because I work Fridays and I feel like I have taken a lot of time off for Joshua's appointments lately.  Of course, I do what I have to do, but this was great, as they could come and see him and I didn't have to take any time off work as I was still there with the kids.)
Sue is going to see him every three months, and she also is involved with the Rehab Clinic we were told about that runs from the hospital for people with Cerebral Palsy, which is also every 3 months.  Basically she just watched Joshua doing what he does and had a bit of a feel of his muscles.
And then she told me that Joshua is going to be a "Botox Boy".  No doubt you have all heard of Botox and people who use it for cosmetic reasons.  But just like botox can "relax" wrinkles, it can also relax the spastic (tight) muscles of children with Cerebral Palsy.  It is injected into the problem areas and lasts for about 3-6 months.  Once those muscles are relaxed, it allows for the child to make greater advances with the help of their traditional therapies.  Of course, this is still something I need to research and make a decision about, but she told me from a Therapist's point of view, Botox is a fairly simple treatment than can make a huge difference.  She also told me that in Australia, Botox can only be done once the child turns Two.  So we are still a way off this happening, but she thinks he will benefit from it greatly.

She also wants us to have access to some special equipment.  First is the AFO's I have previously mentioned (Braces for his legs).  Second is a stander to help him stand up.  This was mentioned not long before we left the Children's Development Team but the smallest one they had was too big for him.  Although he is pulling to a stand now, he still needs a lot of help and the effort that it takes him just to maintain a standing position means that once he is standing, he is unable to participate in much else.  She thinks having a stander will open up opportunities for him to be able to participate in activities with the other children (be able to stand at the table and do an activity, being free to use his hands to play rather than to support himself).  She said some standers are designed to provide a lot of support for Children that are more severely affected, but that there are also some that provide lighter support and that is all he needs.  She said that he wants to be standing upright now, and if that is what he wants to do, then we should help him do that.
Similarly, she also wants him to have a special chair.   Right now, he is unable to sit at the table with the other children for any length of time because he is not stable on the children's chairs that I have.  He needs to have his feet flat on the floor.  But a smaller chair that allows him to have his feet flat on the floor, would mean that he is too low to the table.  So they are talking about a chair that has height adjustable legs and adjustable foot plates so that even if his feet don't touch the floor he still has something to put them on and be able to sit well.  So basically, equipment that will allow him to be better included and participate more fully.  He is also definitely going to see the Speech Therapist, probably even next week on Monday.  
So overall, I am really happy about this, and definitely feeling that changing from the Children's Development Team to Carpentaria Disability Services was a good thing!!  (But I am still waiting on the report from his Assessment!!)

Joshua Standing up