Sign Me Up

Before I started this blog, I did some writing for the Waterloo Region Family Network. Here's something I posted on the WRFN blog a couple of years ago when Carter was seven. The article was actually written when Carter was five. It was an assignment for a freelance writing course that I took. It tells of another form of augmentative communication that Carter used before he got his talker.

Parents would not be human if they, like everyone else in the world, didn’t follow new trends, especially trends that make life easier. You don’t have to search too hard to find the latest fads in baby gear and accessories. Products in the world of babies and toddlers change so drastically that it is often hard to keep up. Strollers become more compact and car seats become safer, with seat belt systems more elaborate than last year’s model. As the world changes, so too do the tools required for the job of parenting.

A current trend in the world of new parents and tots is to use sign language to communicate.  This consists of mom and dad learning a few basic signs likes more, all done, mom, dad, drink, cookie, etc. When mom and dad model these signs for their little ones, babies imitate what they see, enabling them to communicate with their parents long before their vocal chords are mature enough for speech.

Mom

Dad

Parents of a child with special needs learn to sign out of necessity rather than choice because often along with other challenges, their child has a delay in speech and language. Due to the recent trend of signing with babies, there are a variety of resources available to purchase or borrow from local libraries that assist with the learning of simple, relevant signs.

My husband and I anticipated speech difficulties with our son, Carter because he was born with a cleft palate. However, the cleft palate did not explain why our son was not developing speech and language skills at an age appropriate rate. Over time, we made a gradual discovery that our son has global developmental delay.

Carter’s signing vocabulary grew over time.  We started by teaching him food items and then moved on to his favourite toys. We have since taught him signs to label specific items of clothing as well as colours.

red

Initially a child must be motivated by an item in order to learn to sign for it. It was no surprise to us that Carter’s first signed word was cookie. Although motivated to copy the hand motion that we showed him in order to be rewarded with a cookie, the process was painstaking initially, due to the amount of demonstrations, and repetitions needed before he finally caught on to what was expected of him. In the end it was very rewarding for both Carter and me. Carter got what he wanted because he now had a way to express himself and I was able to provide for him at his request.

It is often very easy to give a child what they want if they point or motion toward the item.  Parents fall into the habit of giving their child what they want before they even ask for it. It was helpful to create opportunities to teach Carter new signs by hiding an item or putting it out of reach so that he was forced to request it.

Carter’s fine motor skills are delayed which created some challenges around certain signs, as some hand motions were too complicated for him. When this occurred, we would revise the sign to make it more manageable for Carter. We also created signs so that he had a way to name certain family members, as well as friends.

At [seven] years of age, our son interacts with a variety of people often away from home.  Unfortunately, it is not feasible for us, as parents, to expect everyone that Carter sees on a regular basis, to learn sign language.  It has been a very beneficial method of communication that has bridged a gap between Carter, his family and his therapists.  However, we’ve recently made the transition to the next level of communication with Carter, a voice output device.  Unlike baby sign, a portable, talking computer device is not all that trendy, but just as strollers and car seats have evolved, so too must my son’s method of communication.

So much has changed in the world of technology over the last few years. We are now in the golden age of the iPad with AAC apps being developed at a rapid pace. If Carter had been born just a few years later, things may have been quite different. I may or may not have gone the sign language route with him. Nevertheless, I'm grateful that he has a back-up method of communication for when his talker is unavailable to him and I'm thrilled that we live in the age that we do because so many high-tech options have become more readily available to those who are non-verbal.

Looking Back

I was searching through one of my many binders full of Carter's paperwork (medical reports, school info, therapy info, etc.) and I came across an article I wrote when Carter was a newborn - back when my husband and I thought that we were simply dealing with the fact that Carter was born with a cleft palate and Pierre Robin Sequence. At that point we had no idea of the other challenges that lay ahead. 


The article speaks of the struggles Carter experienced just weeks after he was born. And it speaks of the many 'firsts' I experienced as Carter's mom, including the first of many times:

• I felt powerless and unable to make things better for Carter.
• I put my faith in professionals to help Carter where I could not
• I followed a very strong maternal instinct 
• I was forced to adapt to a difficult situation
• I encountered something beyond the norm of what I thought I would experience as a parent 
• I struggled through a hospital visit with Carter

 Here is my (slightly edited) piece from the Parent Perspective Column of the Chedoke Cleft Lip and Palate Team Newsletter, January 2004:

Our son Carter was born on September 8, 2003 weighing 7 lbs. 12 oz. We were so excited that he was finally here. With the help of the Cleft Lip and Palate Team we began educating ourselves about Carter's condition. He was born with Pierre Robin Sequence as well as a cleft palate. This condition often causes breathing challenges. The chin is very small, which means the tongue is crowded inside the mouth and it blocks the airway. Using special bottles, we attempted to feed Carter at home but he did not gain weight well, even though he appeared to be taking his formula regularly. 

At the age of 5 weeks, the pediatrician decided to admit Carter to McMaster Children's Hospital. She was concerned about his weight and his breathing. Carter had been working hard to coordinate his eating and his breathing and was therefore burning calories faster than he was able to take them in.


 When the staff at McMaster intervened we saw a major turn around in Carter's health. He needed a little boost and that is exactly what he got. He had a lot of catching up to do with weight gain and the ENT (ear, nose and throat) doctor set him up to do just that. A nasopharyngeal tube was put in Carter's one nostril to help him breath. The tube goes through the nostril and sits at the back of the throat keeping the airway open at all times. The tongue can no longer obstruct the entire airway, as the tube will always allow air to pass through. With the nasopharyngeal tube in place, bottle feeding creates a greater risk of aspirating spit up due to the positioning of the tube in the throat. Therefore, Carter required a nasogastric tube in his other nostril through which he was fed.






What an overwhelming few days we had when Carter was first admitted to the hospital. I will never forget the sick feeling in the pit of my stomach when the ENT doctor told us that Carter could require the tubes for up to 4 months meaning he could be in the hospital for that length of time as well. This was not what I wanted to hear. I was reassured when the nurses made it clear that lots of children go home with tubes and sometimes much more.

The challenge to train for Carter's return home began the day after he was admitted. Getting Carter home became our goal from the moment we found out it was a possibility. We wanted our family to be together in a natural family setting. 

I was very intimidated watching the nurses work with Carter. My first thought was that we wouldn't be able to handle it - we were not doctors or nurses. How would we ever be able to cope with this situation at home? We took it one step at a time and during Carter's stay at the hospital my husband and I had lots of opportunities to practise and become competent handling Carter's needs.

Three weeks after being admitted, Carter was healthy enough to return home and my husband and I were knowledgeable enough to take care of him. We had taken an infant CPR course. And we were fully trained in how to change Carter's nasopharyngeal tube, how to suction it when necessary and how to feed Carter using the nasogastric tube. Armed with several tubes, and what seemed like a pharmacy full of other medical supplies, we headed home.

People always say that your lives are forever changed after you have a child. Our lives were certainly changed in ways that we never would have anticipated. Before Carter was born I would not have pictured myself as the type of person able to handle changing a tube in my son's nose or checking the placement of a feeding tube in his stomach by using a stethoscope. Nonetheless, my husband and I dealt with Carter's medical needs. They became second nature to us. 

It has been ten weeks since Carter spent time at McMaster and I am thrilled to say that we made it! Carter is bottle feeding and he has grown significantly. He is now strong enough to handle breathing without the nasopharyngeal tube and has been doing so for four weeks. Carter's situation was indeed a challenge but it is one that we will cherish in our memories as part of our son's unique beginning in life.

Eight years later, I still cherish the memories of those first hurdles we overcame with Carter. Having dealt with a myriad of other unexpected challenges with him I find that I also look back with wonder and with appreciation. I have gained a different perspective on a lot of things in life and I have learned to appreciate them thanks to Carter. I certainly appreciate my boy for all he has overcome and for all he continues to deal with.