In the name of Allah; the entirely merciful; the especially merciful - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ

Saturday, 10 April 2010

More assessments for hearing

It was a rather scary hail storm we had here in Perth in late March 2010. Alhamdulillah, we have nothing major and survived. I can't believe that it is autumn school holidays already. Two weeks before the holiday Mujhee had appointments at WA Institute for Deaf Education (WAIDE) and Australian Hearing.

The one at WAIDE was for educational audiological and learning/developmental assessments to identify Mujhee's particular needs so that the Institute can provide the appropriate support for her.

On that day we met with the Coordinator Visiting Teacher Service, the Intake Coordinator, the Audiologist and the Deaf blind Visiting Teacher Team Leader from WAIDE. I received a very warm welcome from them. After I listened to their introduction, the teachers made assessments on Mujhee. Masha Allah, I was proud with Mujhee because she tried her best to respond and engaged with them. I was pleased with the way they assess Mujhee. She showed that she communicate well on one on one.

On the short meeting I learnt to not only to verbally talk to Mujhee but patting her as I tell the message to her. For example if it is feeding time, I pat her tummy to tell her it is feeding time, and show her the food while telling her verbally. The same goes with time to change her nappy, by tapping her bottom side to tell her it is changing time and talk to her and show the nappy as well. Insha Allah, it is make sense to Mujhee who is deaf blind.

Insha Allah from next term Mujhee will get the services and supports she needs. I hope it will improve her hearing by doing the right way so that we can communicate with her efficiently.

Mujhee also had her hearing and hearing aids review at Australian Hearing on her last school day for term 1. Last time she had a hearing scheduled review was October 2009. Her hearing aids are set well and the moulds are still a right fit. She didn't responded as well as the last test according to the audiologist because I think the test is suitable for children with normal sight and hearing.

Hearing assessment or test for children like Mujhee can be very challenging. I think the test at Australian Hearing is not accurate for her because as a deaf-blind and having a severe physical disability, she is so varied in her sensory functioning, learning and communication skills.

I was frustrated with the evaluations that were performed using tests and procedures designed for children with normal sight and hearing. These materials are not appropriate for Mujhee. The assessment results are not reliable because they do not give an accurate picture of what Mujhee can or cannot hear.

I wish they use someone who has experience working with children like Mujhee and use her own communication methods (e.g., PODD Communication Book, gestures, words, body language, facial expression) during the evaluation instead of expecting her to look at the elephant puppet and the light when sounds are made.

Before we leave I was glad she gave me Parents Evaluation of Aural/oral performance of Children, PEACH. It is a questionnaire designed to record how the child is hearing and communicating with hearing aids at the moment. I will observe Mujhee for a week before Mujhee next appointment on July. I would write about this later, insha Allah.

I end this post with a beautiful verse in the Qur'an that mention about hearing and sight, {And He gave you hearing, sights, and hearts that you might give thanks(to Allah} (An-Nahl 78)

Friday, 2 April 2010

Review Mujhee's wheelchair.

For a special needs child or children with motor disorder like Mujhee a wheelhair is a freedom for mobility. I wish it is temporary for Mujhee because she is learning how to walk through a system of education called conductive education. I am so grateful that she is given an opportunity to learn how to walk, but meanwhile a wheelchair is a must for her.

It was more than two years ago when I decided to get Mujhee a wheelchair as she has not shown any signs of walking. It was a hard decision to make because I really wish that she is able to walk like my other children. With the help from Mujhee's OT at TCCP that time, I decided to get her Zippie wheelchair.

Mujhee is moving around using a wheelchair. She started using it about a year ago since February 2009. It took about 5 apointments until she finally got it. The most important part about the wheelchair is the seat is custom made. Mujhee is learning how to sit without support but she still needs support for sitting. For that reason she needs a custom made special seat to go with her wheelchair.

Now the seat is too small for her and she looks squashed in it. It is time to modify the seat as she is growing, especially the head support and leg support because they dion't povide the support that Mujhee needs.

Alhamdulillah, it was quite a long wait from Dec 2009 until we got an appointment for March 2010 at TCCP Tech to review Mujhee's wheelchair. I heard that there is some changes at TCCP that makes it's services run a bit slow, meaning a long waiting list.

On the appointment day (18/03/2010) Mujhee's Occupational Therapist, Lisa from Therapy Focus and her previous Teacher/Conductor, Shona from Carson Street School accompanied us to the appointment. I was so happy they came with us and giving us so much suggestions on how to upgrade the new seat.

At the moment Mujhee's OT will apply for the fund according to what her new seat will be and insha Allah when it is granted TCCP Tech can proceed with the making of the seat.

There will be a couple of months waiting period until the funding is available. I know it seems long and I wish she could get her new seat right away. It is not only the wheelchair, there are few more equipments that needs to be upgraded like a standing frame to help her stand and a shower chair for washing her everyday. I find the costs are hard to cover because the cost of having a child with disability are way too high.

For me waiting is great as it teaches me to be patient during times of hardship without complaints. I remember a verse in the Quran that states that "Indeed Allah is with those who are patient." Al Baqarah 2:256. So what more would I want?

Inna Lillahi Wa Inna Ilaihee Raaji'oon “To Allah We belong, and to Him is our return”