the straw that broke the camel's back

This week I investigated the possibility of getting some help. Realizing that having two children now with special needs, I know that I have to be very careful that I don't push myself too much. What makes me think that I am close to that line, I not only have lost my wallet, I think I have permanently. So I have had to go through the grueling process of ordering new cards and then waiting for them to come. So upon some instruction I received previously I called Carelink, now for those who don't know who they are, their role is to 

"provide a link to and information about a wide range of community, aged care and support services available locally or across Australia, including services for older people, people with a disability, and those who provide care and services. Centres can also assist carers with options to take a break through short-term and emergency respite services, based on assessed need, and provide advice on and coordinate access to respite services in a carer’s local area."

Before I become a carer my chosen area of work is community services; I was well acquainted with the process of determining if a client would fit the criteria, often I knew the affect of how my decisions would impact the lives of the clients that I work with. So when I called Carelink I asked them so what is their criteria, I got no answer except that I had to call them. So call them I did, made an appointment and they were coming out to see me.

To say I was frustrated is an understatement, apparently we don't qualify for any help from this particular agency. Nor did they really know who could help. I was told to call a line who could help.. so call them I did. The situation got worse from there, apparently according to their guidelines I can only receive respite for one child, I have two children with special needs and I have three children. So their supposed respite is useless to me. All I actually asked was for some domestic help and some respite once a month so I can go out with my husband. 

After this phone call, the tears did flow actually they flowed quite freely on the phone too. I picture myself having a jar that gets filled every time that someone says no we can't help you, he doesn't fit our criteria, even from DSC the disability agency in our state I am told he doesn't fit our criteria, we have no services in your area. This time I had heard too much. 

So from there I did two things: I rang Carers WA and spoke to their information advice line I was too emotionally upset to try and contact anyone else so they are going to call the local Carelink Worker, maybe I should have done that from the start. Next I googled (my friend) Mental Health Respite and rang a local agency, turns out the support worker is a good friend I worked with, lucky she had some ideas of creative thinking of how I can get some help. Also thinking of how she can go into bat for me with DSC as something or somehow I should be able to get something. A morning appointment has been booked next week to get the ball rolling.

To be honest I still feel a little raw and I feel that the tears are still close. One thing I know to get something you need sometimes requires some persistence and a knowledge that I do deserve what I am asking for which actually isn't much at all. This I learnt today respite and funding falls into the following categories, that I am aware of:

- DSC Funded respite, only available for clients who are registered with DSC

- HACC Funded respite, only for those who are over 65 and/or caring for someone of that age, the reasons behind why the services are provided is to keep people living independently as long as possible.

- Mental Health Respite, for families/carers associate with Mental Health

Respite and in home help in the form of domestic help, for others medical services and in home care are a vital service. I was astounded that a service which is designed to give you a break, to help you and help you cope better. Actually caused me more stress and tears than was necessary, it is so important that relevant accurate referrals are given to families, so vital. Whatever your situation is I encourage you to keep trying to get help when you need it whether it is:

• going out with a friend for coffee
• spending time with your partner
• having a night or day break from your caring role
• attending support groups
• taking the help that you can receive, even if you don't think you need it right now you might in the future
• listen to your body, listen to your emotions know how you are going, avoiding burnout is as simple as listening to what your body tells you and acting it.
• allowing family and friends to watch your children so you can get out and do something on your own

If you are going through a similar thing, please share what you are doing to look after yourselves, what respite you do access and how does that look for you?

the day has come

Tonight is a late night for my son, tomorrow is the start of a busy few days. First up is the long night ahead of us keeping my son up to midnight and then shock horror waking him up at 5am tomorrow morning, whose smart idea was that. I know I know I am sure there is a clinical logical reason for this insane request, I just hope they are ready for the insane meltdowns they might witness tomorrow morning. 

On the other hand I think about the times when I wonder what is going on. I thought parenting was going to be a simple experience, feed them keep them clean and love them. Not so simple, thinking about first words. Words they sound so simple and so many parents wish their child would stop talking. As I am raising my second son, I realize the differences the simple amount of language we hear from him and the complexity of it worries us. 

A lot of times it just seems he doesn't have the words, he says something and you have to interpret what he is saying to understand it. He forgets what you say so often, it's crazy. So we did ask the pediatrician why hasn't his speech improved considering he has been in speech therapy since he was a baby and we have been sowing in a LOT of time and effort to help him along the way. The next step that would be tomorrow morning.

First up he is having a EEG done to check for you guessed it epilepsy, this is a scary concept. But this is the type of epilepsy we are looking to rule out, it is called 

"Laundau-Fleffner Syndrome or LKS, is a rare, childhood neurological disorder characterized by the sudden or gradual development of aphasia (the inability to understand or express language) and an abnormal electro-encephalogram (EEG). LKS affects the parts of the brain that control comprehension and speech. The disorder usually occurs in children between the ages of 5 and 7 years. Typically, children with LKS develop normally but then lose their language skills for no apparent reason. While many of the affected individuals have seizures, some do not. The disorder is difficult to diagnose and may be misdiagnosed as autism, pervasive developmental disorder, hearing impairment, learning disability, auditory/verbal processing disorder, attention deficit disorder, mental retardation, childhood schizophrenia, or emotional/behavioral problems."

This is the first step of the process this week, next we are also getting an MRI done the next day, though my son's pediatrician never mentioned why.. these are my theories; to further investigate his recent diagnosis of Benign Joint Hyper-mobility Syndrome and to see if there are any abnormalities with his joints and muscles. Secondly some disorders of the brain can cause language issues that are not so simple, this I haven't allowed myself to think of at all but it does pop into my mind from time to time. This I think I will think on more if the reports come back abnormal in this area. 

So I will report back later on the whole experience.. Secondly for us just to make life interesting my other son is being fitted for hearing aids tomorrow. Part of me is sad that it has come to this, the unknown is quite scary. But the other part of me is happy because my son will receive the gift of hearing what a blessing. I am so blessed to live in a country that funds the hearing aids that he needs. He is getting a special type of hearing aid called a bone conduction hearing aid which is able to switch on and off as his hearing improves or worsens. This is much preferred as my son has teeny tiny ear canals which could prove difficult for fitting them as they could get uncomfortable. 

Tomorrow I will be positive, I will not buy tomorrow's troubles today. Each day has it's own sufficient troubles to deal with. One thing I pray my child won't suffer from is not making decisions because of fear, I hope and pray I can install in them a strength and resolve to be able to face each challenge as it comes before them. Wisdom is always appreciated and I pray for it daily!

what is Selective Mutism

Getting back to basics for some time I have been talking about how to treat Selective Mutism but it is important to visit again what Selective Mutism is and what it isn't. While watching a refreshing documentary "my child isn't perfect" a definition or a description of Selective Mutism was mentioned "selective mutism is a communication disorder in which a person most often a child who is normally capable of speech is unable to speak in given situations." What is most confusing to anyone who meets a child with selective mutism is the stark difference between home and the alternate personality that is most visable, it's like living with two children. This can be most confusing for visiting therapists as they don't get the opportunity to see the child outside of the home environment.

Under the banner of selective mutism there are a few sub types that help explain it better, the Louise Porter explained it well "first is transient mutism, in which children are reluctant to speak for the first few weeks (or perhaps months) after entering a new setting such as preschool or school, but whose difficulties abate spontaneously (Kolvin & Fundudis 1981). It is important to wait a few months before forming a diagnosis as some children naturally start talking on their own. But anyone who is working with this child or is a parent of this child needs to be very careful to bring in intervention the moment that the situation does not resolve.

Another type of mutism is "migrant children Many bilingual children merely lack confidence in speaking in English, which abates as their English communication skills improve." As with transient mutism it is vital to monitor the situation and provide support so that the child has the best opportunity to feel comfortable. Some children also have a sense of resentment about moving countries as well which can complicate any therapy.

The third group is children whose mutism is  secondary to other conditions, such as developmental delays, speech and language disorders or Asperger syndrome. These children’s speech avoidance reflects their awareness that they have communication difficulties." This group of children present a considerable risk because of the issue of other conditions forming barriers for progress. Also the other consideration is that the other conditions can actually mask their Selective Mutism and it goes undiagnosed, which would be most unfortunate.

The last type of mutism is "persistent mutism, whose symptoms typically last for three or more years.  Compared to those whose mutism is transient, these children are likely to be more anxious overall (rather than simply in social settings) and also to  have difficulties separating from their parents. Most nevertheless do well academically, although their teachers tend  to underestimate their skills (Cunningham et al. 2004; Ford et al. 1998). "

What isn't selective mutism, now for the parents and teachers or relatives who may be having a silent heart attack thinking that their child may have this condition. This is how I understand it works. First of all shy in the dictionary means bashful, easily frightened away, suspicious, distrustful, reluctant and wary. A shy child is able to function, I heard this described in a interview on Selective Mutism. If a child has Selective Mutism he/she will not have the ability to function, they will freeze, shut down, their face expressions change in the anxious situation. A child with selective mutism can be bullied, hurt themselves, be sick and simply not be able to ask for help.

People also wrongly attribute what I call and is known as traumatic mutism as selective mutism. The difference with traumatic mutism is that the mutism is triggered by a event, it may include every person or specific people. It is still a reaction to anxiety but the treatment of it is completely different. If you don't treat the cause of the trauma with counselling or support then a progression out of mutism won't be possible. We need to be very clear selective mutism is never because of abuse or overprotection of the parents. This I believe leads to pointing of the fingers which is never beneficial for the child who is needing the support.

waiting... how to do it constructively

How to worry more constructively by Terri Mauro

“Don’t worry.” Those may be among the most annoying words that parents of children with special needs can hear. Of course we’re going to worry. With all the troubles our children face, with all our determination to help them, with all the stressful meetings with specialists and educators, worrying is a simple fact of life. The trick is to worry in a way that leads to a solution instead of an ulcer. Follow these tips to turn your destructive worrying into constructive worrying.

Difficulty: Easy

Time Required: Less time than you're spending now

Here's How:

1. Schedule your worry time. Set a little bit of time aside each day to really indulge your worries. And then, for the rest of the day, keep any additional worrying on hold for your next session.
2. Do something healthy while you worry. Make a little deal with yourself: You’ll only worry while you’re walking, or working out. That way, you’ll always have something positive to show for it in the end.
3. Write your worries down. Whether it’s a journal, an informal list on a legal pad, a computer file or a weblog, anything that gets your worries out of your head and into more concrete form will help you deal with them more effectively.
4. Ask yourself: What’s the worst that could happen?Then think about what you would do if it does. Preparing can reduce a worry’s power over you.
5. Ask yourself: What’s the best that could happen? The ideal scenario is probably as unlikely to occur as the worst-case one, but it gives you something to work toward instead of back away from.
6. Get more specific. Rather than worrying about things in general, try focusing in on one topic to really concern yourself about.
7. Read and research. Time you spend reading up on your worry topic will indulge the worrying part of you while also moving toward a constructive solution.
8. Share your worries with others. It’s another way of getting your worries out of your head and into the light where you can examine them better. The people you talk or correspond with may be able to help or just sympathize, but you’re likely to get new insight just from the act of sharing.
9. If you’re plagued by worries that are not constructive at all, de-construct them. Write them on a piece of paper and then crumple the paper, cut it into pieces, set it on fire, put it at the bottom of the garbage, or do something else that symbolizes your rejection of those worries. Repeat every day if necessary.
10. Use your old worries as signposts of progress. If you’re keeping a worry journal, flip back from time to time to see what you were worrying about weeks, months or years ago. You may be surprised to see how many things are no longer issues. Check them off, cross them out, and feel the power of constructive worrying.

waiting....

One of the most challenging virtues I believe is patience. As a typically organised person (not my house mind you) but my life and my kids lives are fairly organised. I have Google calendars set up with their appointments and reminders to help me remember. I like to have things checked off my check-list and completed. This is all ok, until I hit the following roadblocks:

• waiting lists for paediatricians that are six months long and appointments aren't made until a month in advance
• getting three weeks notice for appointments in Perth (living in the country can drive you crazy)
• not being able to figure out what's wrong
• waiting for that next appointment
• having to trust that your child will be ok at school or will he and is it ok if he is not
• waiting for funding applications for school assistance
• relying on other people to do a job and to do it their way not necessarily how you would do it
• asking someone to help and they forget or don't turn up

Recently I realised my stress levels were a little high, how did I tell that I wasn't coping? Me a person who has a spot for her keys, my wallet goes into my bag and everything has it's place. I lost my keys twice completely for a day at a time, then I lost my wallet twice all in one week. I really had no idea where I had lost them and I was too exhausted to search effectively.

wait 

So I am thinking of what words mean for me and their alternative meanings as a parent for example

wait: is to remain inactive or in a state of repose, as until something expected happens. Or I think alternatively: that frustrating process that involves doing absolutely nothing until FINALLY the day comes for... the appointment, the letter of approved funding.. that email comes.

patience

patience: is an ability or willingness to suppress restlessness or annoyance when confronted with delay. Patience to me can be allusive a quality of something I would strive to be, that I choose to push down the antsy feeling that can overwhelm me while waiting ( the frustrating process that involves doing absolutely nothing.)

trust is a reliance on the integrity, strength, ability, surety, etc., of a person or thing; confidence. This is possibility the most difficult, trust can mean three things entrusting your child to be looked after by someone else who you are not really sure they understand or know your child ; or choosing to leave your child in the care of someone else you really don't think has a clue; or what I would prefer leaving your child in the care of someone who may not not everything about your child or their diagnosis but you are confident they are willing to understand and to learn more.

It comes down to something more having confidence or placing your confidence (having strong belief or full assurance) in your child, in the teacher, in the therapist, in the process. This can be supported by those around you providing evidence to why you should be placing your confidence in them, the process, your child. Maybe I would love to be in control of everything just sometimes. Is that beneficial for me, not likely, could it be too much for me, most definitely. What could my child me missing out on because I want to have more control over the details over what they experience, a lot. That person who we are struggling to trust can be a person who can bring change and growth in a positive way even if we might think it is negative at the time.

I firmly believe for any parent trusting in others is part of the journey of giving your child opportunities to grow and learn and experience life so that when they are older and ready to leave home (I can't see this closely right now.. it's SOO far away). They will be resilient and strong or the contrary, what we do in this season and the choices we make will affect this process and the formation of their character and strengths. 

On a Christian note (feel free to stop reading if you feel this does not apply to you) there is another level to trust and confidence. Trust also means a person on whom or thing on which one relies: God is my trust. When I find myself in the frustrating process of waiting of trusting their is another dimension. I know that I can trust in God also, take my worries to him in prayer and trust that he can watch over my children wherever they go and that all things can work together for good. This is something that I need to make a conscious decision to do, it is too easy to forget the resource of prayer and trust in God, this can truly be the challenge!

If you still feel that you are worrying I found this article helpful. I may not be able to stop worrying but how about I do it constructively?? this in the next post!

social skills in the face of a anxiety based disorder

One of the dangers with Selective Mutism is the impact that it has on their social development. You don't realize how much a part of social skills is learnt through verbal skills until you look at someone's life who is non verbal. Simple things also for a child with Selective Mutism such as waving, smiling can be impossible. Which for young children on the receiving end of the is quite difficult, how do you explain this to another child. Also the scary part is how long will they wait while their playmate stays non verbal?

So one of our goals naturally is to work on social skills, where do you start? I got some information from a book that discusses social skills and Selective Mutism. In our psychology sessions with Josiah we also work on social skills this can be as simple as just relating and speaking with the therapists he works with or it can be more targeted as in how to have a conversation and describe himself. As far as I am concerned why bother giving him lots of help with his speech both his delay and his mutism without empowering him with what to do when he is able. 

Here is an idea of what we are working on and a list we drew up:

Social Skills

• Greet peers from school, at other places
• Eye contact, smile, wave or say hi
• Using manners
• Make eye contact, use please, thank you and excuse me appropriately in complete sentences watch others reactions
• Taking turns when playing a game
• Wait patiently, smile, thank others for playing and wait for your turn, be gracious in winning and losing
• Accepting invitations from others for play or other social interaction
• Maintain eye contact and smile, or ask what others are doing, say thank you and begin to play
• Cooperating with others in a game or project
• Use manners, take turns, engage in small conversation, and thank others for playing

 Emotional Intelligence

• Identifying emotions in yourself such as happiness, sadness, fear/anxiety and anger
• Watch your body, posture and facial expressions, listen to the statements made by a person, and study the context of the situations (what is happening around the people involved).
• Dealing with being sad or anxious
• Relax the body, think about difficult thoughts, understand the feeling is temporary, and talk to someone
• Controlling impulses and anger instead of acting with them quickly
• Count silently to 10, relax the body, exit the situation appropriately, and talk to someone.
• Sharing feelings appropriately
• Discuss feelings when you are not angry, use manners, speak articulately and listen carefully to others reactions. 

There are so many ways that you can teach social skills, stories, practice and a lot of methods at home. But in this post I will discuss the way that we practiced social skills in the therapy setting. There are a few ways you can get started, using puppets practicing in real life situations. What we did first up the psychologist wrote out some general conversational questions such as what is your favourite colour, drink, movie that sort of thing. 

Then using the ipad and the app sock puppets you can practice this conversation record it and play it back in a normal voice or a scrubbed voice. This worked quite well and we needs to keep doing this type of thing. Social skills permeate through ever part of our lives, and not something that we can learn over night. As parents we are responsible to model to our children how to live life, how to treat people, to relate to others. If we can give our children this ability to relate to others it relates to school, work, life, relationships we can give them a healthy start on life. 

The journey continues... it just takes a different turn

Recently in July we went to Perth to get some appointments out of the way, one for the paediatrician and one for Cooper at WAIDE. Now some background history on Cooper from about 18 months he has had some chronic issues with his wax and we begun a referral process, this took approximately 18 months for us to get him the help he needed, this begun with wax removal. At this point we had no idea if his hearing would improve once his wax was removed. Once this procedure had happened unfortunately Cooper's hearing didn't improve at all :( two tests later and he was experiencing mild-moderate hearing loss. 

Quite often we had to resort to nearly yelling at Cooper to get him to hear us especially in noisy environments. And other times we would ask him to do something and he would simply not hear us, this caused us a lot of frustration. I knew something was really wrong one day when I called him from behind in a clear loud voice about 6 times, then I yelled 6 times no response he didn't turn around and I clapped loudly and he finally turned around. 

Shortly afterwards we had self referred Cooper for help from WAIDE because of his hearing. At this appointment because of a recent cold, we discovered that his hearing was dreadful. Imagine being relieved to see that he is not responding well to a test because it finally confirms how you feel. He was not able to lip read, he couldn't hear the audiologist calling him from behind. He really struggled with the testing and a little inconsistent. We also were able to see how his ear canals looked, they are so narrow I was shocked. 

All in one day Josiah was diagnosed with Hypermobility and Cooper with a hearing impairment. We realised that two appointments in one day was possibly not such a great idea! Initially I was quite shocked as we were told that Cooper will need hearing aids and people have had hearing aids for less than what he had. 

The whole experience caught me by surprise it scared me, thinking that I didn't have the energy to fight for another child if that makes sense. The reality of my eldest son's diagnosis is that I have had to fight for every little bit of help he has got. I have had to educate most people on what his diagnosis is, deal with the frustration when people speak about him in the wrong way if they misjudge him, if they don't understand his diagnosis. When people who have medical degrees say that he will grow out of it. 

I have realised this experience has taken it's toll. Do I feel anxious lots, do I worry sometimes every day I send him to school sometimes. When I see the exhaustion on his face after a normal day at school, I realise how much each day it takes him so much energy just to do what each normal kid is able to do (mostly). I understand that his report shows he is doing well, that type of score does not reflect how he is coping. It is all just a waiting game for me to see if he will continue in going well or not.

In the midst of my self analysis, I felt a small still voice I would call it God tell me "don't worry about Cooper, you don't have to fight for him like you do with Josiah." So since his initial appointment with WAIDE we have seen Australian Hearing and they have carried out hearing tests and decided that he needs a bone conduction hearing aid. This will be installed in the next few weeks. I will write some more about this in my next posts. So I ask myself how big is my plate:) have I got too much on my plate or did it just get bigger?