Feast or famine

If I didn't keep some perspective I would surely be frustrated. After finding private speech therapy, they were able to get a speech therapist through the public system so I can get some help in a five week block with the current therapist. So we have been seeing one Private Speech Therapist who does normally work within the system. After two sessions with her, Josiah has been able to say a few words to her, which is amazing in itself. Most likely because the therapy has been based on play. But secondly I think this is because Josiah is in a much better space than when he first begun in speech therapy.

In the way of Psychology we saw the Private Psychologist who now has been classified as a Clinical Psychologist. This was mainly because over the summer of desperately waiting for someone to see us we were glad to see someone who might be able to offer some suggestions of what to do. This was great mainly because she does know sign language so Josiah felt particularly safe with her and was able to whisper to me in front of her. This was at the beginning of the month.

After contacting CAMHS regularly to find out whether or not they had booked an appointment for me. I was informed that firstly I was on the wait-list for an appointment (I was told there was none before) and after my third contact (during this contact the receptionist hung up on me) I was then contacted and informed that a Psychologist had been chosen and I would be contacted to arrange an appointment time.

After five weeks after the incident at the Shopping Centre, of experiencing my Son barely being able to speak to his family we finally had an appointment. Then in this appointment, I don't think she realized how traumatic this has been, I was told not be too anxious. Yes it would take time and I know this, which is most distressing for me. I am at the beginning of the treatment process but I have been travelling on this road for 1.5 years already. I believe I am entitled to a little anxiety over my situation.

Apart from this the appointment was quite good, the Psychologist did seem to understand the nature of anxiety, I am not sure about what she may know about Selective Mutism. We will see how things progress in the future. Forgive me if I sound sceptical but the mental wellbeing of my child is very important to me and I believe he still is in a fragile place.

Who looks after you continued....

So, after you had a think about it, are you looking after yourself? I had to think about this a little and these are the strategies I have come up with so far:
Acceptance

• Accepting the fact your child's success or lack of it, is not a reflection of your parenting, sometimes things are the way they are.
• It is not your fault that your child has Selective Mutism (insert any other issue here)
• They are not doing things deliberately, nor are they being stubborn or willful.
• It is going to take some time to help your child to make progress and this is OK
• Not to take on the stupid things that people say that may seem helpful to them such as "you are being overprotective (translate it is your fault), they are choosing not to talk, you need to give them some more discipline, just bribe them and they will talk, they will grow out it, don't worry, they are just trying to control or manipulate others, they must have experienced some form of trauma". I still struggle with this, but we either need to choose not to respond to ignorant statements or politely reeducate people, and be prepared this may include just about everyone you know!

Self Care

Have a good think about what you find makes you feel good, here are some simple yet they seem impossible to do tips.

• Eat well, drink water
• Have a set bedtime and wake up time (working on this big time)
• Exercise regularly
• Take a long hot bath
• Read a book
• Watch a movie
• Stop yourself doing research or thinking about your child's treatment for a specified amount of time
• Delegate the unimportant tasks to willing people around you
• Decide what you are not able to do and communicate this to others without guilt
• Invest in yourself, in whatever form this takes doing a course, doing something spiritual, listening to music.
• Talk to someone about your struggles, don't be afraid to go to a counselor or psychologist.

If there is anything you would like to add, or chat about what you find hard to do, feel free to comment. This is important for all of us, we are just as important as our children and if we get weak due to not looking after ourselves, our family will suffer too, so do something about it!

Who looks after you?

Often when overwhelmed by the situation, consumed with thoughts of worry, making plans to get help for your child. Looking towards the future, what goal are we going to meet next. Each social situation thinking "how is my child going?" is he going to talk, to play to interact with others, how can I communicate, what is going on in my child's HEAD??? It is easy to forget about looking after the most important part of your son's support team, you!

First let's look at the signs that show you may not be coping as well as you think

• You find yourself constantly thinking about the problems in your life, obsessing even.
• People close to you mention how you are harder to get on with, you might lose your temper more often, or cry more often. Most importantly is do you find that you are more impatient with your child.
• You feel more tired or find you have symptoms of insomnia.
• Losing weight (not eating enough) or gaining weight.

These are the tip of the iceberg, and don't forget that most of us deal with stress in different ways. What is really important when looking after a child with high needs, is that we need to look after ourselves. We are no help to our children if we are strung out on anxiety and caught up in our own emotions. Instead of letting the situation get out of our hands. We need to think about small steps that we can take to look after ourselves so that we are in the best place to be a support person to our children. So take the time to think about how you are going, are you looking after yourself? Next post we will look at some simple things that we can do to make sure we look after ourselves first.

A few steps forward

Back to square one, after so much progress last year to come back to square one, is disheartening for me. But I am not the one who has anxiety my anxiety is placed on me externally rather than a daily internal process. My role is to work on how I respond focusing on whether or not he is talking, I don't want to contribute to the situation too.

So to share this is what has been working so far:

• Sign language, before this all happened we took part in a course teaching sign language called Baby hands (please see the link on the side bar) and this has meant that Josiah has at least some form of communication small as it may be but it helps. So to encourage this we have been using flash cards from signing stars and baby hands as the sign language is used in conjunction with verbal communication, but it removes the pressure to speak if it is too much.
• Relaxation Exercises, as mentioned in a previous post. We worked on part of a relaxation exercise a small part, but something that he is able relate to. Simply it is about clenching fists, counting to ten and then exhaling. I do this about 3-4 times or more depending on how much he needs it. We tried this one morning when he was particularly anxious and it actually worked, he seemed to be released a little from the anxiety, which is nice to finally have one small strategy, in the midst of it all.
• Now Holidays are over we are able to get in touch with some professionals. We have been able to get in with the Private Psychologist which was fantastic as Josiah feels comfortable with her and he is even able to say a few words in front of her, she also knows sign language (a little) so Josiah can even communicate this way as well.

The next step is looking at the Picture Exchange Communication System or commonly known as PECS. I have been in touch with the Public Speech Therapy we have been accessing and we will be looking at this on Monday, I am thinking of doing small pictures laminated for school words of importance I am figuring right now are toilet, hurt, asthma, help maybe some more, I am hoping he will be able to communicate non verbally as well, but we will only know when he starts school in a few weeks.

As we have been trying for some time we are seeing a Private Speech Therapist we are able to access this through the Allied Health Plan which means basically just like the plan for Psychology we get a rebate for Speech Therapy. I am anxious about how this will go, I know I need support to help Josiah he has a moderate-severe language delay and it would be great to get more help to address this issue as well.

Lastly through my work I saw a book which is like an introduction about another client. So I was thinking of doing one up for the Speech Therapist containing information and pictures about Josiah what works with him and what doesn't and also the information that I have gleaned from the Selective Mutism Resource Manual, I plan to do two so that I can give one to the teacher at his school as she does not yet know Josiah.

Helping Children with Selective Mutism: Breathing and Muscle Relaxation

So in my research (it seems never ending) I come across this practical article and reading it I found it could be helpful for relaxation, obviously because relaxed is the opposite of anxiety. Some of these quick exercises can be done on their own maybe such as the clenching fists so I would be interested to see if it helps him in the next situation we come across.


Helping Children with Selective Mutism: Breathing and Muscle Relaxation