Sunday, November 6, 2011

When they take a few steps back

For the last few months well most of this year, Josiah has been doing really well steadily making progress. Since my hospital stay or when we are not really sure but he has stopped speaking to significant adults that previously were part of his talking circle. He is still talking to his friends at school which is great but still it is concerning that he has gone a little backwards. Who knows what the cause is, but trying not to worry about it and just let things be, continually encouraging him in the same way we always do. The main change that has happened is that he has stopped soccer as the season ended, I have been thinking of ways we can replace this activity with something else as it does seem to help him. Very soon (in less than 5 days) I will be heading in to hospital to have my third baby, what is fortunate it is all completely planned being an elective (stupid word) caesarian we can organise everything so that there is stability and fun for Josiah when this little baby makes an entrance.

So the last few weeks and maybe months have been spent booking appointments ahead of time for therapy and what not and organizing his schedule, so that everything is taken care of. I have managed to do up a new morning and evening routine that includes his therapy and school activities and I been enjoying the use of boardmaker to do this. This is one thing that we desperately need we are in the process of getting a grant to buy this program I know I could continually use it over and over again.

The main motivator for all this work is to help Josiah and some of his behavioural issues. This week has been better but we have been dealing with some major behavioural and anxiety issues. To the point we spend 2 hours just getting dressed, the anxiety in going out to the shops, to school and to church has all increased. He has been retreated to his turtle like status, where he will hide or crawl up into a ball. The challenging part is to remain patient and understanding, some days are better than others. It reminds me to get back to basics so out come the timer and we used that again mainly for us to stop pestering the poor child and give him some space while he deals with what is going on. We did discover that he does struggle with another child and he worries that this person is going to bully him and he is simply unable to ask for help, this was heartbreaking to hear. This accompanied with another slip up when I got sick and Josiah ended up at school without a water bottle he went through the whole day without asking for help. I would guarantee if he could he would have asked but he just couldn't. It does break your heart.

Along with the issues with progress at the moment we finally got our Assessment of Josiah's speech back and it is unfortunate that now he has slipped backwards into the category of Severely Disordered Expressive and Receptive Speech Delay, which is as bad as it gets. The positive part is that the parts he scored the best in relate to understanding and receiving instructions which will be of benefit for his schooling and just about everywhere. In dealing with this I did feel more grief (in comes in cycles) mainly because I wonder and fear how long this will take for him to improve and what effects this will have on his learning, his social development and also his schooling. I am faced with the need to once again fight for more therapy for Josiah so that he can get the help he needs because at the moment it isn't enough for him to actually get anywhere. So going to get out my letter writing skills and write some letter so government people to get some action as I am sure that we are not the only ones in our situation.

Next I will post the routines and what not we (maybe I) have done up for Josiah they look fantastic feeling happy about what I have achieved.

Saturday, October 22, 2011

Routines Routines Routines

In my efforts to work out what is going to help my son when we transition into a 3 child family, I have been looking at what helps my son feel comfortable. It has been quite revealing when I look at how simple shopping trips can affect his emotional stability. Generally Holidays are quite a trying time for us, we spent the first week dealing with meltdowns and stress from dealing with misbehaviour and then the second week, things get easier and then it's back to school when the meltdowns increase again. Needless to say we are not a huge fan of these times.

As an example when we started the holidays I come up with some ideas on how to help the boys behave better and did up some simple activities for them to do once each day. Mind you this was just one hour. I managed this for the whole week. The boys loved the attention, loved the activity and I learnt a lot about how well my son is really doing with his learning (of course I through in some language worksheets). Virtually we stayed home for most of the week besides weekly shopping and a few activities. However when we did go shopping I noticed how much he felt safe at home as when we went to the shops he retreated into himself and even struggled to talk to us.

Second week even though I did have things set up we struggled to do as much activity and routine as the first week. The change in my son's behaviour was amazing. The amount of meltdowns increased dramatically naturally the fighting did too. Overall he was not coping as well as he did the first week, his anxiety out and about increased also. The whole experience was quite an education.

What I felt that was almost alarming is that for my son being at home was a safe haven, he was better behaved, overall was an easier kid to parent and be around. It also got me wondering how much of a stress is going out the front door going shopping on the sensory front as well as the emotional front. The challenge is when bub comes how do I keep things as routine as possible, when he is staying with relatives, or when I come home and he is home with me and the baby and his brother. As parents I have realised that we do have our lives pretty routine orientated and this really makes a difference to our kids and how they cope, whether or not they have any other issues.

Next up I will chat about how I am sorting out some routines to help with the changes and using board-maker to help me with that. I will also show you some examples of what I am doing so you can see what I am talking about, I have completed one but I have a few to go.

Friday, October 14, 2011

Using technology to make our life easier (Part Two)

In my last post we discussed how we can use Google to create calendar's share with others and how this can make life simpler just by seeing what is happening when and where and by whom. Ironically since my last post I have been very busy with the some online activities and life. So next I will discuss some great systems that exist online that you can use either with your smart phone or just online. All of these systems I have actually signed up for and do use frequently, some are for the parents/care givers and some are for the children fancy that? and some are for both! First up I will discuss the systems and then include notes on how to intergrate them into your computer, smart phone or other system as available.

The name is not quite explanatory, but a basic run down is that Flylady exists to help people who suffer from CHAOS (Can't Have Anyone Syndrome). The system starts with what is called baby steps and day by day you implement a new routine into your life over a whole month which works on setting your life onto auto pilot so keeping your house clean is easier. It can be quite involved but once you are up to scratch on the terms it is really helpful in making your life easier and more streamlined. The benefit of this is that you can work with this system without your computer once you get started and set things up. But they also utilise other apps and computer tools to keep you inspired. There is a lot I could write up about Flylady but the best idea is to try it out. I discovered this when I was pregnant with my eldest, I don't do everything perfectly however it has made such a difference to being a Mother, a wife, how I feel about my home and keeping things less chaotic. It is worth a try if you struggle in this area.

What is fantastic about the Flylady they have generously worked with two other organisational systems which can help make your life easier and they use technology to do this:

Cozi (Facebook, Web Page, Apps for iPhone, Blackberry and Android N.B Not available in the Australia as far as I am aware)
This is a online organisational website that uses technology well. They have apps for most smart phone's and tablets they also sync in with Google with your current calendars as well as with Outlook and you can download a widgit so that you can view your calendar via Google on your desktop. Without creating a separate calendar (which still can be useful) like Google you can set up schedules for each member of the family, there are facilities to add school, therapy and sport schedules into each member's personal calendar. You can set up routines for each person or for the whole family. Nifty little features the apps have are the ability to send a family member a shopping list before they come home from work. Small note: If your calendar is imported from another source you can't edit the event (eg. Google).

Home Routines (Facebook, Web Page, Itunes (HomeRoutines)
This app has been designed as a stand alone app, however since it's creation different organisational type groups have adopted it and now use it for their systems, Flylady is one of these groups please check out their how to guide to help you to get your app on your device in sync with Flylady. Home Routines has now advanced their setup and you can edit your routines online which then sync to any other devices that your family may be using, which is ultra handy and much more user friendly. The App has a simple screen layout with the Routines, Accomplishments (tasks you have completed), Focus Zones (this is inline with Flylady) and To Do Lists for tasks outside of the routine. The Routines can be set to certain days, every day of the week and other settings. This developer Wunderbear is operated from NZ which is great for us Aussies and NZ readers.

One for the Kids

ChorePad (Facebook, Web Page)
This app is great for kids, it has a great layout and uses pictures words and great graphics to encourage your children to complete what they need to do. There are basic rewards you can set up for completing tasks. Each task has a value that you set, once completed these tally up until your child wishes to trade in for a reward which is up to you what they reward is. This app I believe is suited to Primary Aged children (6+up) but children younger would be able to use it because of the pictures and clear text.

These are the majority of apps and systems that you might come across, please drop me a line if you would like me to explain anything further for example setting up anything, I am a bit of a techy nerd sometimes so I might just be able to help you.

The reason why I have written these last posts, is I realise that the majority of us as parents/caregivers/partners and family members lead busy lives then add the complexities of any special needs that we may have. The worst feeling is feeling that we are drowning under the load of therapy, appointments and to do lists as long as your arm and then the house work still needs to be done, dinner cooked and the list goes on.

Take the time to simplify your life however that appears to you and whatever works for you and do it. I found using Flylady, Google, Cozi, Home Routines and Chorepad it has made my life easier. Knowing that I can enter appointments my hubby his work schedule and then my son's therapy and we can all access it on our phones or the computers, means that things will get done I won't forget things as much (with two reminders) and we all know were we stand. So do something for yourself, get rid of the excuses and the thoughts that are telling you this is too hard and do it.

Saturday, September 24, 2011

Making things simpler

So this week I had an experience online on facebook on one of the communities were we were discussing organisation, home routines and how we all cope with the pressures that we face. During the discussion it was revealed how hard it is for us all to cope and how much we need to take a handle on our lives to make things easier, less stressful and much easier to run. One of my weird passions is organisation, not in the sense that I have my house clean or that everything is run perfectly. But in the sense of my life I try to keep things under control by using the tools that we have online and using our technology such as our phones and iPad

Being a technology nerd I thought I would share some of the systems that are online, how we can use them, how I use them and how you can simplify your life! So this will be an introduction and some short tips on how to use them and what you need to do.


Google is not just a search engine, there is a calendar function within Google that can be useful to just about everyone. You can schedule events such as therapy or a birthday. As well as write up to do lists. The good thing about google it can also be used on your phone. Once you sign up for an email account you have access to a calendar. Any member of the family can have a calendar either as a separate email or within the one. So as an example in my setup I have a few things:

My personal Calendar (email based)
My husbands (email based)
My son's (email based)
Bills within mine.

The reason for separate emails is that it makes it simple to add events into the iphone or another device. For example on the iPhone I can from when I am out add an event to my son's calendar and invite myself or my husband. I know it all sounds a bit crazy doesn't it!!! The advantage of sitting in with the therapist and adding the appointment right there and then means that I don't have to do it when I get home, hence it has less chance of being forgotten.

To use Google you need to do the following things:
I have linked to the help pages in Google to get you started
  1. Sign up, if you don't have a gmail account already
  2. Open up your calendar, usually by clicking on the calendar link at the topic of the page.
  3. Get Started, pick the colour of your calendar add new calendars
  4. Enter events on the calendar
  5. Sync your calendar with other software and devices such as outlook and your iPhone or other phone. This process can be quite confusing :)
  6. Next share your calendar between calendars and learn how to invite others such as family, therapists to future events.
This takes a little getting used to and some frustrating moments but once you get things set up it does actually make a real difference. You can make it as simple or as difficult as you like it is up to you. If you have any questions at all, please write me an email and I will try and put you on the right track.

Next post I will look at a few tools online and using technology that interact with Google or are stand alone such as the iPad and iPhone apps.

Thursday, August 25, 2011

Role of Augmentative and Alternative Communication in Speech Development

Should this be a controversial topic I don't think so. The opinion is that if you provide other avenues to communicate then the child will resist the opportunity to communicate, basically stating that augmentative communication is a hindrance not a tool. Surprisingly I have heard this opinion on more than one occasion and it has caused issues with trying to help my son navigate his non verbal world.

My question is, should it be ok for children to be locked in silence without any form of communication. Should it be ok for them to spend all day at school completely silent unable to express themselves their ideas or their needs and wants. This should not be a situation that exists however sadly it does. This is the dilemna of any parent of a child who has issues with their communication regardless if they are Selectively Mute or not.

What are the consequences of these attitudes? From my point of view, the issue with lack of communication is an acceptable place for them to express themselves. Being non verbal I would imagine would be extremely stressful and anxiety provoking. We want children and for that matter clients of ours to be independant and self empowered, self directing and motivating. How can they do this in a world that can't hear what they need and what they want to say.

The second issue is that if a child does not get the opportunity to communicate when they can and if they want to it causes secondary effects, first of all if a child has a speech delay in any form not being able to talk and hear feedback and have people talk back to them, delays their development. There is a lot of stress and pressure put on parents to get their child to work on their speech, but this issue is happening. Secondly which is also important is we act surprised when our children behave in a non acceptable manner, for example at school in the shopping centre. Yet they are frustrated because they can't communicate. They are screaming in their heads trying to say something and we are there with NO idea.

Now don't get me wrong I don't think for a second that a child should use AAC without any verbal attempts at communication that is not correct. But I don't believe for a second that it inhibits their speech development. Please have a read of this document on the scale of communicate and how we progress to verbal communication I think this clearly shows how we can move through to verbal communication.

Tuesday, August 16, 2011

Speech therapy: assessment

As a child and my husband as well we both had hearing issues as kids and even as adults so we knew that we needed to monitor our children to ensure that we would know if there were any issues. So once you decide that there is an issue, then the process of assessment and diagnosis begins.

There are two aspects for speech issues that need to be addressed in the process of assessment:
  • A comprehensive audiology assessment needs to be carried out first rule out or recognise any areas of hearing loss, difficulties or ear issues such as glue ear.
  • An assessment of your child's language skills will need to be carried out by a Speech Pathologist
The biggest issues in this process unfortunately is the wait lists necessary to access these services through the public system. This has been my experience but once in the system it is easier access reviews for audiology. However be prepared for a waitlist and make sure that you let the services know of your concerns. What is ideal is to before you think you need it then put your child's name down.

First up they will ask for a hearing test to be done so if you get that under way it is one less thing to do. In the assessment they will listen to what your child can say ask you questions about how many words they say, what words do they say, how many word sentences do they use and so on. We had problems in this area because our son couldn't even respond to the speech therapist as he was so overwhelmed with fear we didn't know what Selective Mutism was at that time.

Once this is done then you will have an idea of where your child stands. When I finally got a assessment done (after two years of fighting for one) I was quite shocked at how far behind they believed my child to be, so it was a tough moment, we had done EVERYTHING that was needed to be done yet he still struggled. Hopefully you will find that there isn't an issue and he/she is jsut fine! If not please check out my next post on treatment.

Wednesday, August 10, 2011

Moments of doubt that can control

Today I have been thinking about everything. There are days where I cruise along in auto pilot, keeping up with the demands of a child with Selective Mutism, Speech Delays and Sensory Processing Issues. Every now and again a sense of panic can seize, one that asks many questions such as; when will this end? I am not sure I can cope with this all of the time? what are we missing? I can't think any more how to solve this problem? is my son going to fall behind because those around him can't hear what is going on in his mind? are we going to run out of money? how do we afford all of this? are we doing enough? why does it feel like I have two sons one that lives with me and one that only comes out when others are around? Am I doing enough? have the right therapist?. Moments of doubt can threaten to take control.

The reality is we all get tired, over it, some days we just wish that things were normal and we didn't have to think all the time, work all the time. I realise that I have a son that has needs that are invisible can be misinterpreted and misunderstood. However I am grateful that I have a child who is healthy, well and does not have any other complex needs like some other brave parents and children I know. The reality is that we don't always know if what we are doing is the right thing or if it will help, if we are making mistakes. It is a little like navigation once we have everything in place, then we need to sit tight and stay on course, making space for changes along the way. We just need to keep going.

All of this is a gentle reminder to me, there are other important questions I need to ask myself that are more important than the questions of doubt; what is the goal we are trying to achieve with this, what is it going to look like when my son is no longer bound by fear and then secondly how am I? self care is one of the most important things we can do for our children yet the hardest and most neglected. It is amazing how often we can find ourselves in the same place, some principles are more effective when we practice them regularly, self care can be just like maintenance. If we maintain ourselves well then the little issues that pop up aren't so devastating, if we neglect ourselves then chances are then we can have a complete break down, which do we prefer? The answer should be easy!

Wednesday, August 3, 2011

Speech therapy - home is where it starts

For my son, speech therapy has been a component of our life for quite some time now, as he had hearing issues mainly associated with a glue ear up until really recently. Consequently it meant that his speech was delayed because of his hearing and the lack of reinforcement and practice that was a by product of his Selective Mutism. My youngest son had a few issues more so being up to scratch with where he should be in his development of speech with also the added bonus of waxy ears.

For us the added complication of the speech delay meant that he would have increased anxiety around the fact that he wasn't at the same level and would not know how to speak even if he wanted to. So to cover this properly there are many different levels of assistance/therapy that we can give our children in regards to speech that can be helpful so I am going to divide this up into a few different posts to cover the different areas.

Home is where it all starts. The reality of anything we do for our children is that we are the drivers of the things we do with our children. Whether or not we believe that our children need speech therapy, do they have an issue or are we too busy to even attempt to address what is happening. Everything starts and ends with us. So the first step is acknowledging is there an issue and secondly how bad is the issue. We will cover diagnosis, assesment and so on in the next post.

So once we have realised that there could be an issue these are the things we can do that are simple, that can really help our children.
  • Whenever we speak to our children (especially instructions) get down to their level, or bring them up and speak to them face to face, not behind them. Use clear uncomplicated instructions and if they are able ask them what you are telling them if you believe they didn't understand you.
  • Reduce background noise whenever possible, when speaking even if it means pressing pause on the tv or turning down music it does make a different.
  • Talk to your children, be attentive when they approach you to talk, this really builds their self esteem and confidence in speaking. Speak back to them, rephrase what they said to show you understand. Such as labelling the items they are talking about in terms of colours identifying factors such as fast slow, soft, hard, cold, hot. Talk about what interests them, what they are looking or pointing and and copy by pointing and use your most enthusiastic voice.
  • Use familar phrases regularly in their routines, they will start copying and repeating what you say in no time at all (this is a big part of the Hanen Program which I will discuss later).
  • Read books as often as possible, not only just read the books talk about the pictures what the characters are doing.
  • Take notice of cold, ear aches, hearing loss during colds and treat them immediately. Lots of issues are resolved by prompt treatment of any underlying issues such as ear infections it is common for children not to be able to hear you when they are have a cold.
  • Regurarly monitor your child's hearing ability, I do the check of talking behind them sometimes, I go into another room and talk to them from there, I tell my sons that I am going to ask them about a lolly but I am testing them. I found, for children that if you ask them if they want a lolly (or another treat) without hesitation if their hearing is ok the majority of the time you will get their attention immediately, this can give a better indication of how they are hearing. Unfortunatley we can be easy to ignore at times!
  • Play with your child, talk to them during this play time even five minutes makes a difference
This is where it all starts with us at the home. Next up we will look at diagnosis, assessment and the medical part of speech therapy.

Sunday, July 10, 2011

Whatever can help

With the event of being blessed with some money at the end of the financial year specifically tagged just for Josiah we had some money that we could spend on something that would help him with his treatment. After some thought and a considerable amount of research we decided very apprehensively that we should get him an iPad. They are not cheap and the risk is high with a young child that he might find it hard to look after it, but the benefits totally outweighed the risk (insurance for accidental damage is essential).

Through facebook I found a great group called A4cwsn who's mission is to help "provide parents and educators with more information about apps for the iPad and other such devices that can benefit children in the home and school environment." The most helpful aspect of this group which also has a website make videos of the different apps that would be helpful so that those looking at purchasing can actually see that they actually want to buy it instead of wasting money needlessly.

Once we had the apps installed it was amazing to see him using it and having fun doing things that would be helpful for his development. It's great to know that even playing a game like dexteria can develop his fine motor skills, he can practice reading or spelling, colours, speech therapy just about anything, therapy becomes fun.

The reality is as parents we would love to be able to have all the time to do everything for our kids, read to them everyday, or do all kinds of therapy have all the money to buy everything that they might need. We however are limited we get tired overwhelmed or sometimes don't have any idea on how to start. Their is a pressure and I felt that this week that everything they do in therapy or learning has to be a face to face interaction. There are only so many hours in the day and then add in the added issues of any other struggles such as challenging behaviour not wanting to do therapy or just normal developmental issues.

A part of me believes if there is something that can excite my son to learn, that will also help him master his struggles and give him support and practice. As long as we don't allow him to become addicted to the technology that is helping him and we monitor the time that he spends then what is the harm. It doesn't mean that this is the only way we will encourage his development just a sneaky one.

Tuesday, June 21, 2011

The miracle of speech

To our surprise things are changing for the better. It makes me cry thinking about it, for the first time ever he has been able to talk at school without us. He has been attending school for 1.5 years and never spoken a word without us being there. About a month ago the other students started commenting Josiah talked, he talked most with such shock and pure joy. This started with reports of him making noises such as roaring and other noises. It began with Josiah looking like he wanted to use his voice at school and this has progressed through the scale.

Slowly but surely information is starting to trickle back to us about who and what is happening. Just as expected he is taking the steps in the Social Communication Scale and following them well. In the matter of a month he has progressed through the scale straight through to level 3 and even initiating communication with the other students. For now I wait holding my breath just watching in amazement at the miracles that I am beholding, thankful and grateful for the simple blessing of speech. Now I can only pray that this all continues:) enjoying the progress and looking to the future, this is only the beginning of progress.

Thursday, June 16, 2011

Being there

So along with the events of life I am fortunately pregnant, which is fantastic except for the morning sickness. What I have discovered that I am still needed. There has been a struggle to take him to school in the morning as this is when the morning sickness is the worst, and he has been asking me to drop him off in the morning. I thought I could not go to soccer practice (seeing as though my husband is the coach) though the times I didn't go he got overwhelmed and couldn't practice. Last weekend I was really sick and he missed a game and he went back to his frozen state. It is easy to underestimate the effect of our presence in our children's lives. But the role whatever we play is able to be played one person us.

Being present takes more effort than we realise it is not just about dropping our kids off at school or tucking them into bed at night. It means dropping what we are doing such as playing a game, writing, reading or cleaning and paying attention to them. I was reading something in a book this week and it made me think about how we can pay attention to the misbehaviour, to the condition our children have and the therapy activities we engage in. The mistake we can make is to only provide this attention and often in our exhaustion we feel unable to give much more some days. But to build self esteem, worth and a knowledge of our unconditional love we need to look for the opportunities to give attention for positive behaviour when they aren't whining and when they are being funny. In the busyness of life we can let the moments slip by. It means allowing them to have a cuddle when we aren't in the mood, listening to them, going to the park or doing something special with them with no strings attached. These can be simple choices but often add up to significance for our children and build to a great relationship which is what we want with our children.

Some days it does get hard to be strong all of the time, we can get frustrated, overwhelmed and tired. It can feel like a running a marathon which has it's moment of intense fatigue and exhaustion. What we do for our kids is more important than we realise whether or not our children have any special needs if they have SM or not, no-one can replace us. At this stage I am hoping that the morning sickness (aka ALL DAY sickness) will ease up soon. This I know to look after our children we do need to look after ourselves. We are in control of us, what we do, yet our children can not control their need for us which is vital. General self care is important for all of us, good nutritious food, sleep, rest and focusing on the important things. Time with your family, time with your child (individual) not based on therapy or helping them, time with your partner (if you have one) or even a girlfriend for coffee, most importantly having fun.

In case you are struggling to think of a way to have some downtime or have some fun here are some thoughts:
  • when waiting on hold on the phone grab a hot cup of tea and sit on the front porch
  • in the shopping grab a magazine to sit down and read it once the kids have gone to bed and it is all still
  • when the budget allows go out to dinner or have a coffee
  • feel free to make a list of your own
Your mission is to first take some time for whoever needs it the most you know who that is. Yourself or others you know who needs it the most. In the future the challenge is to attempt to keep all of these items balanced.

Progress of Sensory Therapy

Following the last post we have been implementing the listening therapy for a full fortnight, we have been getting our son to listen to 30 minutes of therapy twice a day which has not been as hard as we thought it would be. The reactions have been interesting, during and for hours afterwards his hearing seems to be affected his speech has got louder and louder at this point he has not been able to learn how to control the sound of his voice and we wonder if he doesn't know how loud he is. So we need to work on a little bit of voice control and have some tools to do so and we will be attempting to implement some sensory therapy in the form of making some home made musical instruments and then using a thermometer to show what appropriate levels of noise is ok. Let's see how we go!!!

We have switched cd's and now going to listen to one by the Therapeutic Listening, Mozart for Modulation. We will load these onto the mp3 player this afternoon and start that one. From reading I think I am getting ideas of what can help Josiah. When we went to see the OT she discussed the results of his sensory profile what was surprising is that in three areas it showed he was having sensory issues and only one of the four was he showing typical behavior in these areas. So it would seem we need to look at this aspect of his therapy for quite some time. I think my idea is to try and find sensory activities that can be easily implemented into his normal schedule and his normal play time the musical instruments is one of these activities.

Sunday, June 5, 2011

Sensory Therapy

Therapy begins formally and informally, before meeting with the occupational therapist. We begun some tactics to attempt to assist Josiah with the issues he was having. The main priority is in the morning we we tried to eliminate background noise and distractions. Along with the no nag tactic, Scott has been taking Josiah to another area of the room during the story time to help him not be overwhelmed. Recently we were given a trampoline and we found that if we encouraged him to jump on the trampoline before we did a stressful activity such as going shopping it did seem to help a little.

In regards to the formal therapy side of things, Josiah has been put on a program called Listening Therapy, the idea is that listening to cd's that expose the ears to sounds that naturally would irritate a child with auditory sensitivity. Apparently it can retrain the ears and strengthen the muscles in the ear to tolerate sounds that previously were a distraction or could cause a meltdown. These cd's also have many other reported effects of treatment

The program works like this Josiah listens to a cd for 30 (we started at 15 mins and increased by five minutes each day) minutes twice a day for two weeks, the music is supposed to be background noise while he carries out the normal activities that he partakes in. With the cd we were given a cd player which I shuddered to think how in danger it would be with a four year old. So we purchased a cheap mp3 player and loaded the cd's onto this. The only issue we found with this is that sometimes the batteries on the mp3 player may need charging frequently.

While reading there is some information to say that mp3 players can distort the sound of the cd's, the frequency range needs to be from 20,000hz-20,000khz, so I checked the mp3 player it plays 20khz max and the headphones only process 30khz so I am going to ask someone who knows if that makes a huge difference.

So far we are listening to ease #1, the side effects have been numerous. Mostly a response afterwards WHAT YOU SAID? I CAN'T HEAR YOU? When you are right in front of his face, hard not to laugh and hard not to worry. I could not tell you of what results may be, but I know for the first little while it actually causes disruption. In the next post I will hopefully have something of interest to report.

If you think you would like some more information please check out these websites:

Ease these are the cd's we are using. Please check out also the frequently asked questions, I found this particularly helpful especially the section on mp3's and ipod's.
Sensational Kids this has a section on the cd's and a little information there are some good links too. The headphones pictured on this site, the larger ones are the ones we are using.
Vital Links this website includes information on Sheila Frick who is one of the developers of Listening Therapy. Her training for therapists is called Training for the Whole Body

Wednesday, June 1, 2011

Sensory Processing Issues, the Beginning

Starting at the beginning the reason for us as parents starting to do a further search into his behaviour was that Josiah's behaviour was causing more of a problem. What we struggled with the most especially at the end of the term, the start of the term was a child who took hours to get dressed and very frustrating for all of us involved. These problems were also showing up when we picked Josiah up from school. It seemed that the second he was in our prescence he would just loose it and we would be on the receiving end of yelling, screaming for any type of reason and often we would not even get home before it started.

What was most confusing about this whole issue is that I had always assumed that because my son was not like the classic case of not liking socks, tags or other more common signs, he had no issues in this area. When it was brought up I was skeptical but thought I should just in case check it out to be fair. This first website I found was a website that listed information about SPD and also included a checklist to complete all 13 pages long:). Shock horror reading the information on the auditory side of the disorder rung true to me. The things that stood out to us were on the checklist:
  • Difficult filtering out other sounds while trying to pay attention to one person talking
  • Looks at others to/for reassurance before answering
  • If not understood, has difficulty re-phrasing; may get frustrated, angry and give up.
From here I rang the OT that we were in contact with through the school and she was helpful. What was fortunate for me is that they were running a workshop on the very issue at the Child Development Centre which I was able to get a place. The workshop itself was a little beginner but it was good to hear stories from other Mums in the same position. There will be a follow up workshop in a few weeks time.

A few things stood out to me apparently deep touch (for those who can handle it) can be a form of calming, activities such as jumping on a trampoline, running and muscle exertion or a hug, there are a few types of activities that can help. 15 minutes of this type of activity can be calming for two hours, that one statement was very helpful. For sure if I can calm my child for two hours for a mere 15 minutes let's do it.

So we are at the beginning of working this out and not even starting to understand the complexity of the situation and working out what how each condition is and how we can treat it and what the issues are for each.

Tuesday, May 31, 2011

The Australian Government's New Mental Health Care Plan (Particular relevance for Australians)

For those of you who have not received psychology through the Medicare funds. This is how it works after seeing the doctor they draw up a mental health care plan for your child (or yourself) and then you are able to choose a psychologist to put on your plan. From here you can access firstly 6 appointments then 12 and 18 if you need it. This is the source of all our therapy for psychology without this we would be literally STUFFED!

The issue is the following to fund their supposed Mental Health Care Plan they are removing funding for this and the doctors appointments to work out these plans. The plan is the following to take the appointments down to 6 as standard and then 10 after a review this means they are cutting 8 appointments. I am wondering if this does effect the other services such as referrals to Medicare funded Occupational Therapy.

So in response to this I am contacting every possible Member of Parliament I can think of trying to get in contact with my local member. You can do the same. Also please check out this petition and sign this for me, it would make a world of a difference for me. Without this therapy we can't afford help for my son and then we would be on our own. Please help this Mum out:)

Saturday, May 28, 2011

Different Faces, Same Child

This video was taken while trying to get him to say a little about his news item for that day, it was taken on the iphone I still forget to turn it on it's side I apoligise for this!

Josiah has been learning how to count

Josiah caught practicing how to count, this is real cute

The difficulty of diagnosis and lack of awareness

The issue of Selective Mutism is that it is best treated when it is discovered early so that unhealthy social patterns of behaviour are not encouraged to continue. However sadly the issue is that so often diagnosis is illusive, even a challenge. The opportunities for diagnosis are many yet there is little if no awareness of the issue. Unlike many other disabilities that are easily diagnosed, the children who are suffering from Selective Mutism can be seen as obstinate, controlling and the worst parents are told that they will grow out of it. These statements could not be further from the truth. Yet Selective Mutism is a recognized mental illness in the DSM IV.

What are the barriers to diagnosis of Selective Mutism:
  • Parents may be unaware of the issue because the children often speak quite freely in the presence of the parents.
  • Professionals (and I use this term loosely) can often be distracted with other issues such as intellectual disability, autism, and many more other possible disabilities.
  • The actual lack of speech
  • The people who have the opportunity to raise concern such as Child Health Nurses, School Nurses, Speech Therapists and even family do not even know about SM. These people present a great opportunity for early intervention.

Awareness is raised in many ways the following steps are important:
  • Educate yourself about Selective Mutism and how it effects your child (this is the most vital)
  • Educate the therapists and those that work with your child, Speech Therapists, Doctor's Psychologists.
  • Work with those who educate your child, inform them of the intrinsics of teaching a child with Selective Mutism. As well as the joys of teaching a child of SM, I was given some great advice to try and show the teachers the qualities and strengths of your child not just their SM.
  • Share with other parents what Selective Mutism
  • Be aware of other children who also could be struggling with Selective Mutism
  • Prepare yourself with information that could be helpful for those who may request it, such as small documents or more thorough documents to assist those who may be in a position to help others that you are not in the position to help.
  • Use other mediums such as the internet (blogs, facebook, twitter) to discuss the issues of Selective Mutism
  • Whenever the opportunity rises contact Members of Parliament, people of influence to raise the need of services and awareness of Selective Mutism.
The biggest concern that I carry is that I was a parent who was able to advocate for my son, so that his hearing was tested that he accessed speech therapy and did everything that I could to find out what my son had, nobody could actually tell us what the problem was. How many parents are out there, that are in the same position but have not have the privilidge to know what their child may have. Anything that we do will make a difference, despite the difficulties that may come across never give up!

Sunday, May 22, 2011

The ugly side of anxiety

What most people don't talk about is the toll that Selective Mutism takes on the child. Imagine what school is like, spending six hours for five days a week in complete silence. Worrying about what others are thinking, saying. Some days he can't complete exercises because he struggles to understand the topic and can't express himself. Often he can't do the exercises because a verbal response is required to complete the task. When he is playing with kids I imagine that he can't ask for a turn or ask to join in. The silence would feel like a prison that he would wonder if he can ever break out.

Fast forward to the afternoon when we pick him, he is tired his senses are exhausted and he has been on constant alert. So when he asks for something to eat and we can't give it to him straight away, he loses it. Sometimes he will have thrown a major tantrum before he gets home. Or if we ask him to pick up his toys (how unexpected?!) pick any combination of situations and they can represent a problem. Even in the mornings we can often spend an hour waiting for him to get dressed. He often will sit there frozen, or hiding because he is so anxious.

What happens next I go back the parenting board and get as many strategies as possible so when the tricky days come I might have an idea that works. For example one thing we found that was happening was that we were using our words to sabotage our efforts. While he is supposed to get dressed we bug, yes we nag him and in the middle of something my husband was saying, I said just stop. And then we tried something new. The timer we use to help him get dressed, we will use it to also do something new SHUT UP!! And not say anything at all until the timer goes off, and surprise surprise it actually made a difference. Who would have thought?

Some days we understand what is happening and why he behaves the way he does. But it doesn't change the fact that we have to fight with him, deal with his anger, the yelling and screaming and the tantrums. On the other days we can be tempted to think, I didn't raise my son to act this way, to disrespect me nor did I expect to raise a child with an anxiety disorder. At the end of it all I still have a little man who trusts me to understand even when he can't understand himself. Who even after all the fights will curl up on my lap for half an hour just for a cuddle. Who begs me to put him to bed and read him a story. And we still have to endure the endless chatter of a whole day's worth of talking in a few short hours.
On a separate note for those who are in a similar situation it is important to look after your self pay attention to the signs when you aren't coping. This week I rang a helpline from Carers WA it made a difference. Remember we are not just parents we are carers too, it is important to acknowledge this role.

Also what we are going to try and do is to look at what is happening every day even the Psychologist tries to tell us that it is just behavioural, that it is normal. But we know that his behaviour is over the top. So let's see what the diary is going to tell us, this can also help us to prevent behaviour as well.

Saturday, May 21, 2011

Update on the Soccer

Today was game #3 and the kids are playing great we had a full team except for one player and for the first time Josiah was even able to play on the field instead of being frozen. He still struggled when under pressure it was kinda funny watching the other coach trying to get him to kick from the boundary line, and Josiah wasn't really up for it.

So this Mum is happy he is running, and kicking and playing which is an improvement from the first two weeks. This is only the beginning for the season there is still another I don't know how many games to go. Hoping this will be a confidence builder for him too.

Sunday, May 15, 2011

Research into Selective Mutism

As Selective Mutism is quite a rare condition, there is not a lot of research about it, nor what contributes, and what behaviour and other issues may be also present. This article albeit quite long as expected compares children with Selective Mutism that have a social anxiety disorder, speech or language disorders or delays, oppositional behaviours and the relationship to the severity of Selective Mutism. As well as an investigation into the classification and the possibility of providing more information on the types of Selective Mutism. If you have the time and you are interested in understanding the psychology of Selective Mutism, have a read of this article it might be an interesting reading.

Sport and Selective Mutism

So this term we start a new journey, Soccer. Secretly I think I always wanted my boys to play soccer it seems to be the most favoured sport for me, but hey I wouldn't dream of influencing them in any way hehe. What is difficult to know is how does sport and a fear or speaking and being on show have an effect on SM will it make it worse or better, what is going to happen.

Fortunately my husband was asked to be the Coach which makes it a little easier as we don't have to explain anything to the Coach as such. The first week was a bit difficult it was quite humorous we had kids who had never been on a soccer field suddenly confronted with kids who were bigger more experienced and logically SCARY! Naturally a lot of the children really struggled, and I realised that anxiety can hit in many forms and maybe I had been thinking that I was in a isolated situation but it turns out that anxiety can affect more children than I realised.

Josiah really struggled he basically froze and did not move he was quite stuck it was hard to watch. But I decided that as long as he was on the field it was ok, he was having a go and that was all that counted. I had a little strategy I got Josiah to stand in front of the goals and he stopped three goals without moving a muscle so that was all good. So I realised my son doesn't have to be a star but he just needs to try and do his best and every time he tries he will get stronger. Also looking at the way Josiah enjoys practicing and play during practice it is worth it for that joy he has on his face. Also it means that he is interacting with other kids developing his social skills and maybe one day he will talk to one of them, we all live in hope hey.

After the first game this week they had a practice and they all said that they were really scared last Saturday. Some practice and drills and the team were totally different this week, they scored goals and played really well I was told (I had to miss the game I was away). Fear doesn't disappear when we choose to act on what we are scared off, instead it still exists and possibly effects us all, but it will decrease as we get stronger with faith and confidence. So after being totally petrified at the prospect of traumatising my son, it wasn't so bad and I think soccer might be great for him to get more confidence and overcome fear.

If anyone has any information on psychology, sport, children and even better SM and sport I would greatly appreciate it I am yet to find some articles about it.

Sunday, April 17, 2011

Separation Anxiety

What is surprising is that I have never really had to deal with this with Josiah, the last time I remember Josiah having any hint of separation anxiety was when he went to daycare. This didn't even start at the beginning of school instead it started midway through the term.

So it began one week I was dropping Josiah off at school and all of a sudden he tells me he is sick, he says it fifteen times I think it was. But he hadn't mentioned it before school had begun. So I decided that I needed to allow him to stay at school and let the school contact me if he still is sick when I leave. I spoke to him about how sometimes when we are scared we feel sick, stayed with him for a minute. It was so bad I needed to go without saying goodbye he wasn't going to let me leave. He screamed and cried and they had to take him outside to get him to calm down. I stayed for a little bit, called from the car-park (I know it sounds far fetched) to make sure everything was fine. And he was, then I called at lunch time just in case and he was fine. I picked him up and he was just fine.

The next day I was onto it more and he was again scared and crying and not wanting me to go, I picked him up and sat him on the teacher's aide's lap and left without turning back. Told him I was leaving and when I was going to be back and that he can be a brave boy. This whole situation lasted for the whole week and it was very difficult to leave him, it got to the point that the bell would ring and he would promptly burst into tears.

Luckily this is not the end of the story, but it did lead to a lot of soul searching. In each situation I had the choice to nurture or to rescue my son. I was well within my rights to take him home and rescue him but it would have lead to many things and could set up a lifestyle of dependence for him. Did I feel guilty you bet I did, did it hurt? Of course it did, did I cry at all, you betcha! But I realized that just because they are crying does not mean they are in danger, they are suffering from anxiety and they are seeking reassurance but they are indeed safe even if they don't know it yet.

Fast forward another few weeks and he is just fine now still a little anxious when we drop him off. Turns out he might have been a bit nervous from getting pneumonia and asthma so now he is well he has calmed down. Not something that I want to experience anytime soon but for now things have settled for him.

Saturday, March 26, 2011

Tools of the trade: breaking the silence at school

What I have been working on lately which has been the hardest to get started but ended up not taking too much time. We agreed at school Josiah needed a small book to assist with communication so that he is able to attempt communication when needed.

Deciding on the signs
First of all which took the most time I looked and looked to see if I could find the pictures I needed to make the book just in Word or another similar program. This proved most difficult because in using other people's designs it meant they chose the pictures and the content of communication. So I took the plunge and downloaded the software Boardmaker vs. 6.

After some initial confusion, it didn't take long to figure things out. Unfortunately it lacks some of the tools that Word and other programs use and I think it would take someone with less than average computer skills sometime to work things out and this is a disadvantage. However what is helpful is the pictures you type in what you are looking for and it brings up a set of relevant pictures. Once I figured it out I got things sorted and I was able to print up everything I needed.

The publishing process
What I used to bring it all together I printed the pictures onto a a5 size sheet and then cut them up so they fitted onto a a6 page this is a 1/4 of a a4 which I thought was the right size not too big and not too small. I aimed to make it as simple as possible so it would be easier to use for Josiah. I used coloured paper a different colour for every page and then laminated them. To bring it all together I went to the stationery shop and they had some small rings that you can insert into the book just using a simple punch to make the holes.

The next step is to help Josiah to be able to use it at school. No point having a wonderful program without it being used. The concept is simple. When Josiah was non verbal over Christmas he was able to use his sign language at other situations with family and friends. He has been able to use his sign language to some extent at school. The dilemna with any type of augmentative communication is the belief that it will become a crutch for the child if allowed to remain in this stage. But I suppose this only happens when nobody monitors the situation, if there is close monitoring then I believe that it will enhance his communication and lead to verbal communication in the future. Please read this article: Augmentative Communication.

Friday, March 25, 2011

Tools of the trade: dealing with the anxiety before School

So at present their are two main issues at hand. First of all Josiah does struggle to get to school, unfortunately despite having plenty of time to get to school on time Josiah really struggles to get there. Sometimes it is the normal stalling and other days he crawls up into a ball and hides. Other days we have to help him get dressed because he is refusing to do so on his own. It is easy to get frustrated and just focus on the fact that he is not listening to what he is being told or we can get strategic and make it fun for him to get ready, empower him and give him incentives to do what he needs to do. Two things we are using for now are the following:

The first of all I modified something from something I bought (which was downloadable) from a site called PECS for Autism obviously Josiah doesn't have autism however most sites who have anything to do with PECS (Picture Exchange Communication System) are related to Autism. The idea is that they have a schedule for the morning and they move the items over to complete once they are done. The actual product was not quite what I was after so I did a bit of modifying and put it onto two pages so it is clearly read and understood by Josiah. This is the finished product.

The second tool not so flash is a cheapy timer I got from Woolworths but really cool as it has large digits that are super easy to read for a young child. The way we use this is to give each small broken down task say a five minute time on it, to see if he can beat it. Some we give an extra minute. When he is in a good mood he really responds to this, however we are keeping everything low key (including the schedule) so the novelty doesn't wear off too fast. I love it when he says "the timer beat me again" in frustration!

Last but not least once we have wrestled him (sometimes this is literally) into his school uniform, in the moments before we go to school I take him give him a big hug, tell him that he is going to have a great day at school, he is going to have fun etc... This I have learnt is one way to help change their thought processes to encourage him to believe that he can have a good day at school and he doesn't have to fear. Then I get a book Power of a Praying Parent and pray through fear and instilling a desire to learn prayers. All four of these strategies I believe work together and achieve slowly and painstakingly help him get through the tough days.

Thursday, March 10, 2011

Learning to trust my insticts

This is how the story goes when we had the second appointment with Josiah there, we had some issues with Josiah playing with me and not with her, he turned his back to her and she was not able to engage him I was waiting for her to take the lead and this did not occur. What happened next was the most concerning, she asked to speak to me privately. Then I was questioned as to "why I had taken over the session? was I trying to overcompensate for my son" through the conversation she then stated that I had anxiety issues and a problem with anxiety, I explained that any anxiety was because I was dealing with a stressful situation and it was hard being a parent to a child with SM. Then I was informed my fears about other opinions are my own internal fears and not real. She also told me that she was not willing to work in the school and felt this was unnecessary and she would decide if it was necessary.

So we made a time to see her, my husband informed her Josiah would not be coming. When we arrived she asked where Josiah was, good listening skills right there. After some discussion I asked the worker about the issue of her not being willing to attend the school if needed. Her response showed us how inflexible she would be to work with. I said to the worker that from my research a lot of the work done usually happens in the school. The response was that I am not arguing with you. She could not see any benefit from working in the school and would only work from her therapy room. She then said that calling what Josiah has as Selective Mutism narrows the focus.

My decision was being made during the session that my anxiety only arrived with her criticism of me, and how I relate to my son. Every moment I was with her I felt like I was fighting her and I said I felt a clash between us, she had no idea of this. Thinking of working with the psychologist that we need to pay for, brought me back the peace that I had lost ever since I had worked with her. Since then I have heard that she has questioned if my son has an intellectual disability, this confirms my choice. From seeing my son for less than half an hour how can she make that assumption based on good professional evidence, this is most definitely a questionable judgement. If she had read the paediatrician report that we had given her, she would have that he ruled out an intellectual disability.

What have I learnt from this, should I compromise and accept second best for my son who is still in crisis and only just beginning to talk again, the answer would be no. What is best for my son is what I should be striving for, not second best, not what goes against my better judgement and not someone who does not empower me but dis-empower me and make me feel like I am a bad parent.

Thursday, February 17, 2011

The smaller things can be so significant

Well, we are now in February. Things are going along quite nicely it was only 5 weeks ago when Josiah wasn't speaking at all. So school has been going well as far as we can tell. I love it that he comes home with new words and more language each day. We have had a big of a bonus day today I felt quite pleased with my son's progress in so many areas:
  • At the audiologist appointment we attended first of all his hearing is much better from what I can tell. Second of all the audiologist commented that this is the most that he has spoken in any appointment I have been seeing the same audiologist since he was 12mo, he is now 4. He is not speaking to hear per-say but in her presence very much so.
  • Josiah had his fourth speech therapy session today, in which with a lot of gentle prodding from the speech therapist he is talking a lot more. What I have noticed that works is to start off with no pressure to speak obviously, then work with structured activities and it is amazing what happens. I feel that within structure socially he knows what to do this makes him less anxious. He has made so much progress just by speaking full sentences and now mostly at a normal volume.
  • For the first real time I remember he told a full story from beginning to end. He struggles to say what has happened in the day, events and so forth. But at school he come up to me and told me the story about the gingerbread man and what they did.
  • Then in the shops today he even responded to the Cashier in the shop with a full sentence, I nearly passed out I swear!
  • Tonight at dinner he spoke a full sentence to a close friend of mine, this is the first time he has spoken to her and she has known him from when he was born, just amazing.
So at the end of a long day I sit here a very happy Mum, there is always hope and your children are always capable of more than we know and I know that God is answering my prayers one by one!

Wednesday, February 16, 2011

One Day My Soul Just Opened Up by Iyanla Vanzant

Fear mastered me. It dictated my movements and responses in any given situation. Fear has disguised itself as what I could not do, did not have, and did not have time to do, and as what others would not let me do. I have disguised fear as the need to be somewhere else, doing something else, not knowing how to do something, and not needing to do something. I set a table in my life for fear to become a gluttonous and insatiable master.
This quote stirs something within me, how many times do we hold back, because of fear. This is a struggle for adults, teens and children. Anxiety can also be described as fear. Our journey is to realign our children to be in a position where they can master their master. Not an easy task, but you must agree a necessary one.

Thursday, February 10, 2011

My first webinar on Selective Mutism

So today after getting posted a sign up sheet from a fellow SM Mum from the yahoo group Selective Mutism Support Group I signed in and have just attended the webinar. I found Dr Chu very interesting and knowledgeable on the subject of Selective Mutism. He gave practical information for all group such as parents, children, therapists and school professionals. What I enjoyed the most was the following:
  1. Information on the hierarchy and how it would work in real life, there is a step ladder approach to dealing with anxiety and he illustrated an example of a child buying icecream how as parents we can accommodate the anxiety in a negative way thus robbing the child of opportunities to learn to master his anxiety.
  2. Practical steps as a parent how to deal with our participation and role in assisting our children the empathize and encourage step was really interesting and simplified we need to first of all empathize show our child that we know they find it hard to ......... but then move onto encouragement where we then progress to saying I know you can do this. And then encouraging them to take the step to overcome.
  3. Great insight on understanding that my child who is 4.5 (I asked a question) and it was explained that I should not expect him to be capable of insight of his critical thinking such as I can't won't etc.... that links to his SM but give him practical ways for him to gain confidence so that these thoughts no longer dominate his thinking. This was very helpful for me.
  4. The idea that if the child escapes from overcoming his anxiety, then he will not be provided a natural opportunity for his body to overcome this anxiety, as the exposure to the anxiety increases so this then lessens the effect on the person. Practical and insightful!
So for my first webinar I actually learnt a lot, it felt like I was this sponge listening to everything they had to say and the questions that were asked. Please feel comfortable to go to the website and download the webinar and listen for yourself check out the questions that are being asked as this will be answered during the week.

Here are the links you will need, the webinar was hosted I know it sounds random but the New Jersey Center for Tourette Sydrome, the webinar link is for Selective Mutism: Coordinated Behavioural Approaches for Therapists, Parents, and Schools. Once on the website you can download the power point slides (which are very helpful) and participate in chat with Dr Chu.

Wednesday, February 9, 2011

Nurture vs. Rescue

When we look within what do we see? The challenge of parenting is to know the line between nurture, one would encourage development rescue discourages development and growth and allows my son to stay where he is. In understanding I look at the definitions of nurture and rescue:

Nurture: to feed, care for. Synonyms: back, bolster, bring up, cherish, cultivate, develop, discipline, educate, foster, instruct, nourish, nurse. Antonyms: Deprive, ignore, neglect starve.

Rescue: save from danger, Synonyms: bail one out, conserve, deliver, dis-embarrass, disentangle, emancipate, extricate, free, get out, get out of hock, give a break, hold over, keep, liberate, manumit, preserve, protect, pull out of the fire, ransom, recapture, recover, redeem, regain, release, retain, retrieve, safeguard, salvage, save life of, set free, spring, unleash, unloose. Antonyms: harm, hurt, imperil, injure.

As parents how do we contribute to our children's anxiety. Social pressure can make us react in strange ways. Each time someone talks to my son there is a lot that goes on in my mind "how will they react when he doesn't talk back, will they judge me or think the is being rude, will they wait too long for him to respond, when should I respond, should I do anything." My son needs to overcome Selective Mutism and there are things that I do that can rob him of the opportunity to overcome his fear.

Therein lies a choice the easy path is to continue to rescue when my son feels uncomfortable. Or I can take the hard path examine myself, observe my son and allow him to learn how to overcome his fears, the hard part is I can't control those around me, explain the rules to everyone:) but he needs to opportunities to overcome. I don't want to be part of my son's defeat.

On the other hand I deal with pushing my child to communicate again, all throughout the day I know I need to encourage him to use his verbal communication not non verbal this is extremely difficult some days. One day I remember my son having a 20-30 minute tantrum yelling at me because I wouldn't give him his drink he wasn't saying please non verbally or verbally. This is a problem that we deal with and his behaviour can be trying, I know that if I wasn't nurturing my son I would just give in straight away to his tantrums, but I don't. Regardless of his communication style being rude, demanding and anger are not rewarded.

The true role of a mother is to nurture some of us have been taught the opposite in rescuing and parents of children with Selective Mutism can all relate to the pressure especially socially to respond to situations with a rescuing mentality, because some people don't understand the dynamics of SM and some realistically should not be expected to know. So what have I concluded my desire is to nurture but I know that I might fail and enable and rescue my child. But what I can do is provide situations when I know he is safe for him to practice social skills and to allow him to feel uncomfortable in these moments.

“Selective Mutism: Coordinated Behavioral Approaches for Therapists, Parents, and Schools”

For those who are starved for more information. Tomorrow there will be a free webinar on Selective Mutism run by the NJ Center for Tourette's Syndrome and Other Disorders. Looks very interesting the time posted is US Time you can convert to your area in google. If you are not able to watch it at the time listed you can download it afterwards and watch at your own convenience.


Saturday, February 5, 2011

It's the little things that give us hope

Over the last summer life has been stressful to say the least. Basically I spent 6 weeks where Josiah stopped talking at all and only in the last few weeks has he come out of it and started speaking to me normally again. I realize now that hey I do know a thing or too and my approach to everything did work even if it hasn't worked as fast as I would like. At a doctors visit the doctor commented that Josiah had improved a lot since she last saw him and this was down to my parenting and encouragement. So we are onto the next steps in most areas.

Last week was the start of Pre-Primary, a big deal for me as Mum. This means that Josiah will be at school for five full days a week. Honestly after everything that happened I really did not know how he would cope with school. So after taking him to school I forgot his bag and realized I wasn't as organised as I thought hehe. As they sitting down for mat time, the teacher asked him where he would like to sit and he was able to point for the teacher, man did that make me feel better. So I come to pick him up and looked at him through the window, Josiah saw me and instantly started to gesture with large hand motions snap snap (regular fixture in our home) and he pointed wildly to the corner of the room. This made me laugh apparently there is a axolotil in his classroom and he thinks it is totally cool.

So in terms of support for him, the school he attends a private one has a theme this year on care and support. They have set up some programs to help those who are struggling and to give some extra support when needed. They have three staff to work on this area, this is a great relief to me. As well as this I had my first chat with the teacher and we are going to set some things up soon and Josiah might have a similar program to last year where Josiah had some one on one play time with the teacher after class. What is next is the parent interview where most of this will be set up. All this gives me some hope, Josiah is in a good place the teachers are willing to understand and learn (the teacher had already read the information she was given) and there is more support for him this year. I keep praying that 2011 will be the year of progress for Josiah.

Tuesday, February 1, 2011

The feelings that sometimes consume and distract me

So today we had an appointment with a Psychologist, the appointment went well for my son or so I thought. The Psychologist afterwards spoke to me and discussed how she believed I was overcompensating and basically took over the session. This hit me like a brick, was what she said true or is it just another opinion? I am still reeling from what was said, in reflection these are the things I have concluded:
  1. Being a parent to a child with Selective Mutism means that as a parent you can feel anxious because you worry about every time your child gets spoken to, can he respond, what will they think, do I need to do something, say something. Where is the line between encouraging your child to grow and keeping them safe.
  2. I thought I believed that my son having Selective Mutism did not have any reflection on my identity as a parent, but knowing and believing are two different things. There are times where I want my son to be seen as normal and not needing help but the fact remains he does.
  3. Helping the child also means empowering the parent, not disempowering the parent.
  4. That I wish people could see Josiah when he is free from fear and able to speak, how he plays his loudness, his talking, chatting endlessly. But who they see is not the same Josiah I know.
  5. That trusting people to help your son, is very scary
Where to from here, some time soon I need someone to help me work out the dynamics of being a parent to a child with Selective Mutism, as well as I wish there was a support group or even to meet another parent of a child with Selective Mutism would be so helpful about now. I think that I need to take some action in this area and start to advertise or something to get one operating.