Teaching Our Daughter Life Skills Early

When we have children we teach them all the skills we feel are necessary for them to be able to move out of home and live independent lives.  This isn’t usually a conscious lesson by us it is usually carried out over the many years (say around 20 years) they live with you at home.  They learn though observation of these tasks and you showing them initially.  Most tasks can be carried out by them after only a small number of attempts.

As a mother of a child with special needs I have learnt we don’t have the pleasure of her learning on her own by observation.  No matter how many times she watches or listens to me show her a task she will either never be able to do it without visuals or prompting or without thousands of attempts with or without assistance.  She has dyspraxia (where the messages get mixed up so motor planning is difficult) as well as other disabilities so the only way she learns anything is through practice.

My daughter is a very determined, stubborn girl thankfully for us so she is willing to spend a lot of time practicing skills until she succeeds.  She gets great pleasure and pride from even the smallest of successes like getting one sock on or getting herself undressed.  She taught herself to take a shirt off at night in the dark.  She would go to bed and when we got her up in the morning her shirt would be off or inside out.  After many shirtless mornings she perfected this task.  She has perfected many other tasks as well since this and we are so proud of her determination.

I have come to the realisation, now that she is 11 years old, that I need to start teaching her more complex life skills for independent living.  She has been learning basic life skills for years already at home and at school.  Her school have a great life skills program and I compliment them for that.  But it may take years for her to be able to successfully complete more complex tasks independently such as shopping, loading/unloading a dishwasher, washing clothes, safe food preparation etc.

People ask me what I want for her in the future.  My answer is “I want her to be happy and to live as independent life as possible for her whatever that is”.  

I don’t actually know whether she will ever leave home but I want to give her the greatest chance of being able to live independently knowing that her determination has got her a long way already.    If she ends up living with us at least she will be able to still be independent within our home and have a sense of worth as she won’t have to rely on others to get things done.

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Special Needs – Sitting the Naplan – Part 2 – Tips for Sitting the Exam

So you have decided you want your child to sit the Naplan and this is the right choice for your child and your family.  You may now like to refer to the Naplan website or consult with your school as your special needs child may be eligible for adjustments to the exam.  “Adjustments are provided to students with disability to support access to the tests and encourage maximum participation.  These adjustments are detailed in the National Protocols for Test Administration.”

It states on the website “Adjustments should generally reflect the kind of support and assistance provided in the classroom for assessment activities in order for students to demonstrate what they know and can do”.  So it will depend on the funding level of your child and also what type of assistance they get in the normal course of their school day as to what adjustments may be available to them during the Naplan.

Some of the adjustments that are be available to students include:

  • Extra time and/or rest breaks
  • Electronic Test Formats.  Enables students to type answers but students must use a assistive technology like a computer in class
  • A scribe (someone to write for the student).  I have been a scribe and I recommend that if this is available to your child that the student and the scribe practice this procedure prior to the exam as the student needs to tell the scribe punctuation, paragraphs etc and this takes a little time to get use to.
  • Reading to students (only certain information, not everything can be read)
  • Braille
  • Large print
  • Black and white books may be copied onto coloured paper as disability adjustments

If you want to know more refer to the Naplan website (see link  below) it is quite useful.  It also has some scenarios to help you or your school work out whether your child is eligible.  Some students may be eligible for more than one adjustment.  If you think your child may be eligible for any of these adjustments or you would like to know if they are speak to your school as early as possible so any applications that may need to be done can be submitted and also so your child can do some practice exams using their adjustments.

http://www.nap.edu.au/naplan/school-support/adjustments-for-students-with-disability/adjustments-for-students-with-disability.html

Special Needs – Sitting NAPLAN – Part 1 – Is this the right choice

If your child is due to sit the Naplan this year and you are wondering about your rights.  I refer you to the Naplan website http://www.nap.edu.au/naplan/school-support/school-support.html for important information.  Every child is expected to sit the Naplan exam unless they are eligible for exemption or the family decides to withdraw their child.  All of these decisions have to be made in consultation with your school but the decision is the families.  The school is not to try and force you to withdraw your child and is not supposed to exert influence on the family.  They can express their concerns and their opinions but the final decision is yours.

I would suggest however, you take some time away from any pressures from school or opinions of people and discuss your decision as a family unit and include your child so they can have input if you believe they are capable of giving you valuable insight.

We looked into this when our daughter was in Year 3 and decided even with the adjustments that are available she wouldn’t be able to complete the exam so we were able to get an exemption for her.  As noted in the Naplan website “Students with significant intellectual disability and/or those with significant co-existing conditions which severely limit their capacity to participate in the tests may be exempted from sitting the national tests”.  You must still speak to your school and make this decision in consultation with them.  You will be required to sign a form which needs to be lodged.

I am also a Teachers Aide (Special) and have witnessed the stress sitting the Naplan can have even on the most capable and confident students and I want to share my thoughts with you.

I think all families who have children with special needs should sit down and discuss the following issues and you may even be able to come up with some more relating to your child.  Once discussed, you will be able to make an informed decision and will be able to notify the school and state your position confidently.

  • Is your child going to be able to complete and participate in the Naplan exam with the adjustments that are available?  If no, speak to the school your child may be eligible for an exemption.  
  • Is the pressure of the exam going to bring unwanted meltdowns or behaviours?  Is it worth the pressure on the child and your family?  Does the pressure outweigh the benefits of sitting the exam?
  • What is it you want to get out of your child sitting the Naplan?  Do you want to compare them state, nationally?  Do they need it to apply for another school or scholarship? This is ok, just think about why?
  • Is your child going to be able to work to their potential on the day?  Are you going to get an accurate result on the day?  Would you be better to rely on school reports and class work to get an idea of how your child is performing?
  • How does your child feel about the Naplan?  Is your child feeling pressured and stressed about the Naplan?
  • Is your child excited or happy about doing the Naplan?  Some children thrive in these conditions and don’t feel any stress.

Once you have thought about these points and there may be other points you also think of with your family and you have made a decision in relation to your child.  Get in contact with your school and discuss.  A least now you will be confident with your decision.

If you decide you want your child to sit the Naplan congratulations and good luck.

You may like to visit Part 2 of my blog: Special Needs – Sitting Naplan – Tips for sitting the exam.  This discusses some of the adjustments that are available to special needs students.   Read and then consult your school one or more of these adjustments may be available for your child.

Young People Can Have Disabled Parking Permits Too!!!

Our 11 year old daughter has a disabled parking permit as a result of her disabilities.  I am sick of people judging us and making comments or glaring at us for parking in disabled parking spots as if we have no right.  Young people can have disabled parking permits too!

Our daughter wears splints on her legs, she struggles to walk on uneven ground, slopes and has a perceptual issue if there are cracks or different surfaces.  She needs to hold on to someones arm or hand to walk and has a wheelchair for longer distances.  I am sure she would prefer to be able to walk like everyone else and not need a parking permit.  We are a very active family and I can guarantee we don’t use it just to save us having to walk a couple of extra metres.  It is about making our daughters life a little easier for her and especially in bad weather.  She is eleven and doesn’t want me to have to carry her and she is too big now for me to do that anyway.

Some examples of what we have had happen includes a man pulling up next to my parked car as I am putting in the groceries who shook his head then asked me if I realised it was a “disabled park”.  Of which I replied “Yes and this is my disabled daughter in the back”. He just scoffed so I then said “Would you like to take her home for a week I am sure you’ll bring her back”.  He then drove off.  My son was impressed with my calm reply.

Another time we all went shopping. Our daughter was with us of course and was walking holding our hand.  A lady looked at us then said to her husband “I guess anyone can borrow their parents disabled sticker”.  I just looked at my husband and said “really”.  I couldn’t even reply to that one it just blew me away the ignorance of some people.

The other day my daughter and I were at the hospital getting her splints fitted.  When we were leaving and about to pay at the ticket booth he said that will be $5.  I asked “even with the disabled sticker” knowing it should have been only $2.50 and that is what I had got out of my wallet.  He raised his eyebrows and scoffed at me.  I always pay the full amount except when it is an appointment for my daughter.  I don’t have a problem paying for parking.  It was just the way he looked at me that upset me.

We take our daughter to school where she is in year 5 and my husband and I often share stories of people who don’t know us staring at us, shaking their heads or even looking at the ticket in our window I can only assume to check it is ours. When our daughter started at the school there were no parking spots and I use to have to lift her into and out of my car.  After suffering from sore shoulders and back we asked the school to look into a disabled parking spot as we already had a ticket even back then.  They applied to council and the school now has two disabled parking spots.

We have never used our disabled parking permit illegally.  I just hate how we are judged just because we are young that our family doesn’t deserve or have the right to park in a disabled parking spot.

I want to spread awareness that Young People Can Have Disabled Parking Permits Too and stop the judgements and ignorance that some people display.

My helpful tips for LST Meetings

Over the years I have learnt a lot of what I feel are helpful hints in relation to LST meetings or even general meetings with the school. Firstly, the function of these meetings are to make sure the needs of the student are being met and it is important to remember this.  It is not about the school and what is right for them it is about what is right for the child.  I think sometimes this gets forgotten.
 
I would like to share with you some other hints I hope assist any families that are new to this process or families who feel a little overwhelmed or nervous about their LST Meeting.
 
  • Try and be confident, know what you want to discuss, what you believe is needed to assist your child and any concerns, solutions or ideas you would like to be put in place or discussed.
  • Be willing to be a little flexible or ready to compromise but not at the expense of what you believe is needed for your child.  
  • Until your confident in meetings make sure you have support which could be your health team or a family member.  Meetings can be very overwhelming and having support can help your emotionally.  But remember it is still your meeting so don’t let them take over it is important that it is still driven by you.
  • At the beginning I found it better to have as many of our team (physio, speechy, OT etc) attend meetings with us. This meant issues weren’t missed and I had the support I needed to get our concerns across.
  • Have tissues at the ready – these meetings can be quite overwhelming and emotional.
  • A really helpful hint I have found is to have a notebook with all questions, issues and concerns written down before attending a meeting to help keep the meeting on task and to make sure all issues get dealt with and to make notes of outcomes to refer back to.  If a lot is talked about in these meetings it is easy to forget things that are discussed. 
  • After a few meetings you should become more relaxed and confident and be able to attend on your own.  You still do have the option to have your support team attend with you as required.

I hope these help and good luck.  I’d love to hear your experiences with meetings and any other tips you may have.

Everyone needs a break sometimes

Hi everyone, I’m back!  I have just had a long weekend away with my darling husband in New Zealand.  He has had to go there for work so we made the most of it and spent four days just the two of us to celebrate our 15th Wedding Anniversary.

We very rarely take the opportunity to go away and spend time together just the two of us. In fact it is only our second holiday together without children in 13 years.  The last one was only six months ago when we went with friends to Bali.  Since our Bali trip we realised how important it is for any relationship and especially one where you have an added stresser of a special needs child to make sure you get a break and also to make sure time is spent on your relationship as it is very easy to get caught up and neglect each other.

We are only now just starting to look into respite care.  It isn’t something our families necessarily have agreed with us doing up to now as they believe they are there to help and it isn’t needed.  However, we have decided it is time to start looking into options that suit our family.

If anyone can give me their thoughts on respite and what has or hasn’t worked for them we would appreciate it.

Our reasons for mainstreaming our special needs child

I recently did a presentation and shared with the audience stories of our successes and the challenges we have experienced while mainstreaming our daughter with special needs.  She attends a local mainstream school and is now in Year 5 and absolutely loves school, has a great group of friends and could not be happier.

I would like to share with you some of the reasons why we decided to send her to a local mainstream school.  Our daughter has complex needs including fine motor and gross motor, incontinence, she is predominately non verbal as she has severe verbal dyspraxia.  She only has about 15 words which we call survival words included Mum, Dad, yes, no etc which can get her a long way.  She also uses Key Word Signing and an iPad with an App called Touchchat.  So she has a lot of labels.

Before I start I just want to say labels are needed to get a child the funding, help and assistance they need to make their school life enjoyable and easier.  The labels are not the child.  Don’t get too overwhelmed by labels just accept them as part of the process.

Some of the reasons I covered in my presentation for mainstreaming our daughter are:

  • The school community is a part of the larger community that she is going to have to live in. We sent her not just for a formal education but for a social education.
  • She would learn the rules and expectations of society.  It would be a more strict and structured environment, which we knew she would benefit from.
  • Before starting school we had a great team behind us including Early Intervention, Preschool, OT, Physio, Speech Therapist, paediatrican that all assessed her and all advised they also believed this was the best place for her.  This helped us make our decision as it took some of the pressure of us.
  • We believed it was the best place for her to be if we were to allow her to reach her full potential whatever that may be.

I am a passionate believer in the inclusion of special needs children into the mainstream schooling system.  I believe this should be the first option for a child starting school unless there is medical or other evidence to support otherwise.  It is their right to be a part of society including schooling and this will in turn assist in their future success in integration with society when they leave school with housing, employment and life skills.

I will post some of our success stories in the next couple of days.

Share your thoughts.