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.