Music with Monica

Since Claire was about three months old, we have been attending the Early Childhood Development Program playgroup at a local state school. These playgroups are government-funded programs, for children aged from 0 to 3.5. Parents attend with their children and have the opportunity to meet other families. When Claire is 3 and a half, she will be eligible to attend the early intervention classes for two hours a day, two days a week, as she prepares for Prep.

We are VERY fortunate that we ended up at this particular playgroup. They have a very dedicated team of teachers and aides, including one teacher aide who bakes and prepares delicious treats each week. There is always a feast for the parents, usually including something that has been baking as we have enjoyed the formal part of the program. It is nice to go to such a happy and welcoming place each week.

Due to the dedication and persistence of the staff there and due to the generosity of the St George Foundation who fund the programs, these playgroup sessions include an hour of music therapy. They are facilitated by registered music therapist, Monica Zidar. During these sessions, Monica plays the guitar and we sing and sign with the children, giving them opportunities to develop their vocabulary of words and signs. The kids are also given opportunities to play instruments, to move to music and to make choices.

Claire loves Music with Monica. It is at these sessions that I first learnt many of the signs we use with Claire to help her communicate with our family. It is also during these sessions that the use of choice boards was introduced to Claire, allowing her to gain some independence. Claire is usually given a choice of two songs on laminated cards, stuck with Velcro to the board. She then chooses which song she would like to hear for her turn. We started with Claire learning to look at the cards and to choose with her eyes. Then we moved to her using her hands to point to the card for the song she would most like. On occasions, Claire has signed her choice (usually ‘frog’ for Der Glumph went the Little Green Frog’ – her favourite!). Claire enjoys the choices so much that we replicate the process at home with our own cards on a Velcro board and I have just started adding some song choices into her new iPad communication program, Proloquo2go.

We have met some lovely friends at music class. Claire loves to play the drum with the other kids. She also likes to place her face on it and to feel the vibrations! Often Claire will only play herself when everyone else has stopped! I think when the drum is moving, she is too involved in the sensory input of the vibrations to play along herself. She also enjoys playing the bells…and chewing on them.

I have seen such amazing progress with Claire during these music sessions, that this year, when Monica started her private business, Music with Monica, we jumped at the chance to sign on. We now go to music twice a week. It keeps us busy, but the development of Claire’s communication and her obvious enthusiasm for the lessons make it all worthwhile.

To top it off, Monica is a genuinely nice person who obviously cares a lot about our children. She has gone to great lengths to cater to their needs in her programs while also promoting inclusivity. The Music with Monica classes are for any children aged 0 to 5. I think it is great for Claire to attend these ‘mainstream’ classes. It is great for us, but it is also beneficial for the other parents and children who attend. I hope it will help to break down barriers and promote positive images of our special kids. If parents understand the importance of this, it can only rub off on their children who could potentially be Claire’s peers and classmates in the future. I know I have seen lots of amazed looks when my tiny baby signs effectively to communicate meaning…and I feel proud.

I am very grateful that Claire has been fortunate enough to meet yet another person who obviously cares for her a great deal. It is lovely to have another person to celebrate all of her little achievements, which really are BIG achievements to us! Thank you Monica 🙂

Join us for “Music with Monica”!

If you would like to check out Music with Monica, you should contact her at monica@musicwithmonica.com or connect with Music with Monica on Facebook. She even offers a free trial lesson and great discounts for families with more than one child attending. Lesson times are available on her website.

Remember…these classes are great for any child aged 0 to 5, regardless of their level of development.

 

 

Helping “Music with Monica” to Help Others…

I know that Monica has plans to expand her private business, but I also know that she has a heart of gold and would love to be able to provide her sessions for free or at a lower price for children in need. I see the classes as great value considering the whole term’s fees for Callum and Claire equal around the cost of two of Claire’s speech therapy sessions! We are also very fortunate to have had such wonderful support through our fundraising efforts earlier this year and these costs are no longer such a challenge for our family. I am aware however that there are many families who could really benefit from her plans to subsidise costs. I am also aware that Monica has a husband and two hungry boys to feed!

I recently nominated Music with Monica for the Forming Circles Pay it Forward Initiative – a $5000 boost for a small business with under 200 likes on Facebook. She expanded on the nomination by sharing that she would like to use half of the money to begin to establish such a program and half to purchase instruments to sell, with the revenue from this going back into supporting her programs. I hope that she is successful in gaining the $5000 boost, but if she is not, perhaps you know a business or individual who might be interested in sponsoring the establishment of the program. Please spread the word. They could potentially be helping so many children!

Choice

“Wait a minute… you had a choice and you still had her?”

These words have been swirling around in my head since they left the mouth of the obnoxious person who spoke them. In order to move past my irritation, I need to share a positive response…

The day we went for the secondary scan to hopefully alleviate doctor’s concerns that Claire’s cerebellum was a little smaller than expected, we were a little over half way in our pregnancy. When what seemed the impossible was confirmed, we were promptly offered an amniocentesis, a procedure that would most likely have identified our little girl as having Cri du Chat Syndrome.

I vividly recall the candid conversation that was being had in that dark room. A very calm and likeable doctor was explaining to Matt and me that our daughter’s cerebellum was indeed smaller than what would be expected (3mm smaller – isn’t technology incredible?), and that she appeared to have a hole in her heart. It was explained that when two defects are detected, it by definition indicates a syndrome. What the syndrome might be would be harder to identify, but an amniocentesis could highlight if it was something chromosomal and we could ‘make our decisions from there’.

Amniocentesis was a term familiar to me, but probably not so much to Matt. What I heard was “we can do a test right now and you still have time to terminate this pregnancy”. I am sure that what Matt heard was very different. The news was delivered sensitively, and as I said, the doctor was calm and likeable. It took Matt a while to understand why I was putting the brakes on and asking the doctor what alternatives there might be to amniocentesis, what the benefits would be to our baby, and if we could have some time to discuss this as a couple and absorb the information we had been given. I was worried about the high risk of miscarriage from the procedure, particularly when the doctor was clearly telling us that there could be absolutely nothing atypical about the baby. I had also just seen this incredible image of my little girl.

The doctor responded positively to my requests, though I am sure there was a flicker of surprise in his voice. I expressed my desire to carry our baby to term at this point, but we agreed that further non-invasive testing would be beneficial and something we would like to continue with while we took it all in. We needed time to digest the information as a couple, and most importantly, I was very keen to communicate with Matt and make sure that we were on the same page. I knew my understanding of what the doctor had talked about was limited, and I imagined that Matt’s was even more so. His experiences with pregnant friends and women’s magazines were not as plentiful as mine!

We were booked in for a scan six weeks later, the optimum time to view the baby’s heart, and also for an MRI to further monitor the development of her brain. And so began the journey of hospital-hopping and waiting room worries.

This scan was supposed to alleviate all concerns, and correct the initial ‘error’ that was found in the scan a few weeks earlier but was only shared with us the day before. Matt came along as he thought he might get a better look at the baby in 3D, and to see what I had confirmed to be a girl, at the previous scan. We both suspected that we were taking an unnecessary precaution.

After the appointment, we were shell-shocked. We had to wait a little bit for the reports to be prepared before we left, and we sat there staring into space and holding hands tightly. In the car, we chatted a little about what we knew, which wasn’t much, and I explained a bit more about what the doctor had suggested and what I took that to mean. Matt was running very late for a work function, so I dropped him off and headed home with Callum, and a heart full of worry.

I called two friends that afternoon. One who had text to ask if everything was OK as she had known I was going for this scan and knew that it wasn’t on the typical schedule for pregnant mums. I just took a moment to think about that conversation and I think it must have sounded so cold to her! I was so very much in a state of shock and confusion. No tears had yet fallen and I wasn’t even sure that I had reason to cry. Our baby may be ‘sick’ or maybe everything is fine. Abrupt!

The second call was to a friend who had her own “Heart kid”. Her baby had undergone surgery shortly after birth and was now a healthy and thriving 5 year old. I explained what had happened at our appointment that morning and she burst into tears! After that call, so did I. I’m sure she will read this and feel horrible if I neglect to add that it was just what I needed to give me a giggle, and also to help me actually start to process the news. 🙂

Matt arrived home very early from the work function that had offered free alcohol. This was unexpected and out of character! We both were really in a great state of shock, and we had at least a few weeks before we would know anymore.

During the following weeks, we really considered a lot of ‘what ifs’. When I think about how difficult it was to worry about whether we were going to have a baby with special needs, a baby that would die at birth or as an infant, a miscarriage, a stillbirth… it seems silly. I never worried about any of those things with Callum because they were so far out of my realm of experience. Things you didn’t talk about and didn’t consider, but that since that day, have become so much a part of my life that any perfectly healthy baby that is delivered just feels miraculous beyond words. The more amusing and difficult part was that I had no idea as to what would be ‘worst’. I had no idea what to pray or hope for… apart from a healthy, ‘normal’ baby. And as time went on and we met with more specialists and further non-invasive testing was carried out, that outcome seemed less likely.

My biggest concern at the time was to keep checking in with Matt and making sure that he wanted the same thing as me. We had regular conversations exploring every possibility and I am proud of how we communicated with each other and shared our deepest concerns. These concerns seemed to change almost daily for me, and Matt was constantly available to support my thinking and to offer his own perspectives. I knew that no matter what, we would get through this pregnancy. He was my rock.

For the following month, we saw many specialists and so many were gently pushing us to have the amniocentesis. When at 26 weeks we were still being asked what our ‘choice’ would be I cracked! I was beginning to feel like perhaps by not making a choice, we were being selfish. I asked the doctor if our baby girl was in pain. Was she suffering? Was I being selfish? He said no and explained that an amniocentesis would make the diagnosis easier and we could prepare for her arrival. He also said that if it were something that were known to be terminal at or around the time of birth, they would not attempt to resuscitate her. Happy, happy, joy, joy!

There was a time that we succumbed to the pressure and reluctantly made the appointment for the amniocentesis. However, I read an amazing book that helped me regain control and I also had a conversation with our pediatrician who agreed that it was an unnecessary test if we had ‘decided’ to have our baby.

Our ‘choice’ had been made when we decided we wanted to try for another baby. She was coming and we wanted to meet her so very much. I wanted to enjoy her every movement inside me, and I wanted her to feel warm, secure, and loved for as long as she was willing to stay there. I wasn’t willing to put her life at risk with a test that was ultimately only going to be used to help me ‘prepare’ for her arrival.

I have never regretted for one minute my decision to have our daughter, Claire Matilda. While being a parent of a child with special needs was not in my plans, and isn’t something I would deliberately choose or wish upon anyone else, I do think that she is the best thing that has ever happened to me.

I can say quite definitely that although having Callum made me a mother, and that was a miraculous and wonderful experience in itself, having Claire has made me a better mother – to both of my children. Everyday I feel lucky to have Claire in my life. I have been given an experience as a mother that is amazingly rewarding and humbling, despite the added challenges we face. I don’t love her more than Callum (unlike my own mother, I don’t have favourites – N.B. I’m her favourite :P). My experiences because of Claire have given me new perspective and that has only been of benefit to our whole family.

I am confident in many ways, but I do worry about what others think of me and I don’t want people to think of me as selfish for having Claire. I also don’t want to be seen as a martyr.

I am who I am. A mother who desperately wanted another child. A mother who was lucky enough to fall pregnant for a second time. A mother who was lucky enough to have delivered a relatively healthy baby girl who she thought perhaps she would never have had the chance to meet. A mother who has experienced love and kindness beyond what she had ever imagined was possible. A mother to Callum and Claire.

Dear obnoxious and ignorant person…
“You had a choice to ask that question, and you still did??”

Looking forward to hearing ‘more’

 

Easter Sunday marked 17 months since the arrival of Claire Matilda. What a perfect day for Claire to say her first word.  Yup, you read right, a WORD! Claire can say “more”!!!!

 

As I type, I sip a little champagne to celebrate this amazing milestone in the life of our baby girl, who has once again blown my mind. This could be the start of something really big. I have to believe that it will be, because the idea of her never really speaking to me is truly difficult to swallow.

 

We were camping over the Easter weekend. While having some custard for morning tea, Matt and I both heard the magical sound of a whole word coming from Claire’s mouth. “More”.

 

Not long after we got home on Monday, we had a visit from my sister, her husband, and my nephew. I was getting Claire to show off with a number of tricks and we were singing some songs. Claire said, “More”.

 

It was only during her bath on Tuesday that I was willing to confirm that this was beyond a fluke and it was really happening. Claire loves the bath and it has been a great motivator for teaching her to sign and to attempt to move forward. Yesterday, I thought I’d give it a shot again. I lifted Claire out of the bath and asked her if she wanted more. “More”.

 

One, twice, three times a charm. Claire can say “more”. I am amazed. I am proud. I am overwhelmed. I am hopeful.

 

Unfortunately Claire didn’t cooperate at speech therapy today by showing her therapist her new skill, but I don’t think she wanted more, and she hasn’t yet mastered the words ‘done’ or ‘finished’ ! She signed that a lot today though!

 

Some people with Cri du Chat Syndrome develop a large vocabulary, others master just a handful of words in their lifetime. Some never speak at all. Claire Matilda can say a word. She is attempting to replicate our mouth shapes and is starting to make a few more sounds. I have had my hope renewed, and I look forward to hearing ‘more’.