Tuesday, February 26, 2013

What not to say

Often you can feel it in the air an awkwardness exists too strong it is tangeable. When presented with special needs often people don't know what to say or they say what they think will help. This post I am going to bust a few sayings that drive us parents of special needs crazy!

1. God doesn't give you more than what you can handle.

Now I completely understand where this saying comes from, there is a verse in the bible that  talks about temptation and it refers to how God will not allow us to be tempted beyond what we can bear. This is referring to temptation, not our situations, lives. Personally I find it difficult to comprehend how we are meant to handle childhood cancer, the death of a partner, marriage breakup or having a child with complex needs. The whole point is in my opinion is that we are not meant to handle this, and to expect anything less is not allowing people to own the emotions they are feeling. Anyone going through a tough time can actually feel guilty for not being able to cope which I think is the opposite of how we are meant to feel.

Now while I am at it, I'm also going to attack the other myth "that they were given to you for a reason", honestly it gives the impression that there is either a super league of parents who are out there solely to be parents of those children. Or worse that the reason is that as a person or a parent we did something terrible that is the reason why we were given our child. You can see the vicious cycle. On the other hand I have heard an appropriate version of this is that "I don't understand why good people and good parents go through situations and diagnosis's like this, but it's happening more and more, God is trusting you with this child". I was on the receiving end of this comment and it reassured me, it said I don't get it, I don't like it but it's happening more and more. 

2. The minimisers

Honestly this hurts the most, you bare your soul to someone or a complete stranger and reveal what is wrong with your child and you are met with the following responses:

- he looks fine to me
- he'll grow out of it right
- lots of kids do that
- he doesn't look autistic 

This is just the tip of the iceberg, in an attempt to make you feel better and for most people to feel less awkward these types of comments are made. I do think honestly they hope for us that our situation is not permanent, or they try to reassure us that our child looks normal. At time we are just asking for some understanding of how it feels, to get things out in the air or even to help you not judge our child for their behaviour. 

3. The parenting police

These responses are the most frustrating and honestly usually a bit old school as well. People encounter a meltdown or other behaviour and are dismayed with what they see. 

- cut the apron strings
- all he needs is some discipline
- back in MY day...
- all he needs is a good spanking

There are so many assumptions made about parenting and special needs. These comments in themselves say the folllowing: you are a failure as a parent, why don't you control your child, I could do a better job at being a parent, your child does not have a diagnosis they are just being naughty it's all your fault. This is what we think in a situation where we are confronted with an opinion like this: you really have no idea what it is like to be me, don't you think I have tried EVERYTHING for my child to behave well, he/she is trying so hard to cope in a world that doesn't understand them and they have had enough, what about DCP (in reference to the spanking comment), in the middle of these situations sometimes we do wish the ground would swallow us up live or we are just trying to get the shopping done so you can eat something healthy tonight. 

4. Joe Blow has this and the solution focused advice

Some conditions get this more than others and I have to admit I have heard it more of autism than any other comments like "like the rain main" and my sister's husband's cousin has this are just the beginning. In the world of information, documentaries and the internet there is a lot of information and parents of kids with special needs get a lot of advice on how to cure their child of their diagnosis. Wouldn't we love it maybe, but does denying the problem make it better nope. This can be really difficult to apply but a little less advice is great if people aren't asking for it. Instead of offering advice when a parent shares their heart, just listen. We don't have to say ANYTHING we can just listen and try to understand, mirror back to that person what you think they are trying to say. There are a few benefits to this we really needs awareness of disabilities in our community so understanding is the first step, secondly parents can feel isolated and a listening ear can be really helpful. 

What can you do?

Now I know I probably have pulled the rug out from underneath your and you are wondering what do I do now? This will help any parent:

- Make a coffee date with us, we would love you to catch up with us even if you have to bring the cake and coffee to us.
- Offer to babysit or take our children out (we know it's big)
- Be normal with us whenever possible and do a bit of reassurance when we are having a bad    week or our child behaves badly in public
- Have us over for dinner every now and again (or for some kids bring dinner over)
- For the guys out there, please take the Dads out for a round of golf or another appropriate guy activity (note the word appropriate) especially if you are a Dad in a similar situation.
- Help us to look after ourselves this could include going for walks with us, checking in with us often to see how we are coping. 

Last of all I want to thank you for reading this blog, it might be a little contraversial or a little raw. But I guarantee (after a bit of facebook research) there are a lot of parents who have had a lot of things said to them that hasn't helped and cause them more grief and trouble, it's the honest truth. For those who are a friend to us, or a family member we need you in our life, we need community to get through the day to day and to help us not feel so alienated some days I feel like I live in another world or reality plane from everyone else and we need others to come and be in our world every now and again. Not to solve our problems or to fix everything but to be with us and this makes the world of a difference.

Monday, February 18, 2013

back to school basics

For the parent of a child with special needs going back to school can be rather stressful. Even more-so for parents of children with Selective Mutism. Essentially going back to school is fraught with anxious opportunities, thereby being a hazard for the anxious child, even a point where children can regress. How do we navigate this process well?

Laying the foundation

- Set up a meeting
This process will be different if you are starting school fresh, or if your child has been recently diagnosed. Introducing Selective Mutism can be incredibly daunting as the lack of awareness is quite a challenge. So first up meeting school staff is important and if at all possible to do this before school even starts. 

-Find out what funding is available
Most of the information on Selective Mutism is based in other countries and not quite relevant in terms and the accommodations they will have available for each student.  In Australia the systems are different for each state and it is also different for if your child attends a public or private school (independent). To enable the school to apply for funding they will need the following

  • Pediatrician report, stating diagnosis and if possible the accommodations that is recommended for the student
  • Speech Assessment report, often children with Selective Mutism can also have speech delays because of the lack of social interaction because they aren't engaged in as much verbal interactions. 
  • Any other relevant diagnosis reports and information helpful for the school.
  • Information on Selective Mutism as based on the DSM 4 (or very soon 5) for the school to reference too. 
If you discover some resistance to applying for funding, Selective Mutism is a mental health issue. From my experience I found that the area of funding is under the same area as Autism and other conditions like it, it comes under the Severe Mental Health banner. Each school area has different deadlines, so it is helpful to know when these deadlines are, for example information can be needed in term 3 of the previous year. 

- Ask for information about your school's inclusion policy, their special needs policies and procedures and information about how they manage IEP's
It sounds very formal but this information will be of help now and the future. Understanding how your school approaches special needs and the resources they have available should it be needed will start things off on the right foot. 

Other resources helpful for Selective Mutism:
10 Ten Myths about Selective Mutism
an essential tool to show the progress of our children with their speech and overcoming Selective Mutism, to be used in conjunction with the Social Communication Anxiety Inventory Scale. 

Painting the picture

Knowing your child well, will help your teachers teach your child better. Often we discuss our child's weaknesses, but we fail to mention our child's strength's what they like what they don't like, what works with them. 

- allow your child to have one on one time with the teacher or teacher's aide
In the busyness of a classroom, it can be hard for a teacher to get to know your child. A little one on one time can make it easier for your child to form a trusted relationship with the teacher or aide, this is really important for children with Selective Mutism. In this time it is great to encourage the child to share something he/she likes this can help share interests. 

- write a communication passport
In the case of children with Selective Mutism it is VERY hard for adults who are involved in their lives to get to know your child. A communication passport is a book that a child can have a school that can take the place of a introduction and explains the ins and outs of your child in a positive way. You can list your child's diagnosis, their preferences, their strengths and how to work with them, don't forget your child's interests as well. 

- keep it written
When working with children and anxiety and special needs, it is really important not to discuss their issues in front of the child and it is important to set a boundary in this area. A common practice is to use a communication book. This is great for sharing how your child is going, share successes and if they are feeling more anxious than normal. It can also be used as  a record for future purposes. Also when communicating with staff it is also great to do it in writing for example using email. 

When things go wrong

We don't really want to think about this at all, but it might just happen. Sometimes things go wrong sometimes it is the teacher sometimes it is other students. Here are some tips to help you on the way (I am still working this out)

- Use your child's communication book
When things happen this is your first point of call, write down the incident or whatever is bothering you. Avoid using emotional terms and try write things as objectively as you can without pointing the finger at anybody, for example "saying you did this". Also if your child relays a situation to you, let the teacher know what your child said and then ask what happened. Sometimes a child can hear a few words out of context as kids do and the situation might have actually been different (N.B I didn't say our child lied). 

- If it is something that is serious
Give the teacher a chance to respond, I have found asking the teacher to give me a call gave me a chance to speak to them when they were ready. It takes a lot of guts to approach and confront an issue. It is better to do this in a safe place. So using the communication book to communicate what happened and ask them to call you if that is relevant. I had one situation where this was appropriate and it worked really well. 

- Follow the chain of command
If you want the teachers to respect you and your opinion, offer them the same courtesy when at all possible. Deal with the issue with the person the issue started with. Start with them and then work your way up. Sometimes we can get really involved in the incident and we get worked up and want to go to the top first. But if we give the staff member the opportunity to work it through with you shows respect and it also helps them. We don't often think of the ramifications of our actions and if we have a good teacher then we don't want to get them into strife with their bosses if it isn't necessary.

- Be the voice
You are your child's advocate, in laying the foundation I suggested you get the information about your school's policies so that you know what is what. This way when push comes to shove and you need to keep asking for the school to accommodate you have more authority. Sometimes unfortunately we advocate and communicate well, this does not mean we have to put up with their decision we just need to decide if it is an issue worth taking further or not.

Next post I will discuss further how to stage and carry out a intervention program for a child who has Selective Mutism in the school environment. 

Sunday, February 10, 2013

Watch and Learn: a webinar, ABCs and 123s: Preparation for the Next School Year

Having a rare condition, sometimes it is just nice to hear people talk about your child's condition. One of the main organisations that deals with Selective Mutism, the Child Mind Institute has been running a few webinar's that I discovered recently. This one timely, all on how to handle the back to school transition, this includes also video demonstrations on how to encourage speech at school. Worth the watch, the end has some great video's. Please check it out, I think it would be also useful for teachers and speech therapists to watch. Unfortunately they only mention the American education system of special needs and it doesn't apply to Australians. 

Click on the image to go to the link to view the webpage of the webinar, further down you will see, watch the webinar online link in the article.