Speaking for Two; A Loving Mother and Advocate

Tonya Autism

With the celebration of Child lIfe month, I asked a friend of mine to write her story of being a mom to her son Andrew, who has special needs. She is an amazing mother, friend and advocate. I have been able to provide support to her as both a friend and as a child life specialist, but I feel like I have learned more from her.

Here is her story:

My introduction to motherhood was an eerie example of what my life as a first time mom was going to be – completely unpredictable and nothing like I’d prepared for it to be.  I purposely use the term “mom” instead of “mommy”.  For many, the words have the same meaning. For me there was a difference. Subtle albeit, yet very significant.  Mommy is a noun.  Used by young children to call or describe their mother. Mom for me was an adjective. It’s how I’d gotten used to be being described in my world of doctors, specialists, therapists, teachers, evaluators and any other person that needed an easy way to make their reference to me anonymous. My child couldn’t speak so I was never mommy.

We welcomed Andrew Leopoldo Guandique on Christmas Eve 2008.  2.5 weeks early and weighing just 4 pounds 6 ounces.  Despite being underweight, he was otherwise deemed very healthy.  While I was over the moon about starting a life with him, I knew I wasn’t ready.  I just had no way of understanding the full magnitude of what that would mean for me.  I couldn’t shake the feeling that there was something wrong.  My mommy instincts were on alert.

He had an extreme case of reflux so my husband and I had to watch him around the clock.  Exhausting but not quite the biggest ordeal – if this was the big “thing” that my senses were warning me about this wasn’t so bad.  But still, I couldn’t shake that uneasy feeling.

At about 6 weeks old, he was diagnosed with hernia in his groin and umbilical areas which required surgery as soon as possible.  He was still very underweight so we had to wait months praying the condition wouldn’t escalate to an emergency.  Ok, this was tough but if this was the big “thing” – not earth stopping.  The surgery came and went perfectly. It even almost eliminated his reflux.  Still, there was that feeling again.

surgery pic

Aside from his birth, this was our first introduction to hospitals. We learned something very special.  A young woman walked up to us after we arrived and checked in.  Her smiling face and calming demeanor was a comfort.  She instinctively began a game of peek-a-boo to comfort my fussy baby.  His gummy chuckle in reaction was infectious.  She introduced herself to us and informed us that she was a child life specialist. She explained the details of his surgery and what to expect afterwards.  In plain English, not confusing medical terms.  All while helping to keep Andrew laughing and happy.  During his recovery Andrew was hooked up to monitors, he couldn’t leave the room to take advantage of the activities in the hospital so she was sure to bring them to us.  I don’t know how we would have made it through such a stressful time without her.

1st halloween

We thought Andrew was 8 months old when he began having seizures.  Looking back at old home videos, we saw that he really started having them when he was just days old.  We just didn’t realize it.  Seizures are very scary however the actual seizures themselves are typically harmless.  Andrew’s were an exception because he would stop breathing.  Luckily he never stopped breathing long enough to sustain brain damage…that we are aware of as of yet.  It took a series of hospitalizations, tests and medication adjustment to get his seizures under control.  We were very happy to finally have him seizure free and could even start to envision him having a normal life.  But I still felt there was more.

In addition to the medical stuff, I noticed that Andrew wasn’t meeting his milestones at the same time as his peers.  At first they were simple things such as smiling late or rolling instead of crawling.  The bigger things quickly manifested – not walking until 17 months, speech and developmental delays.  This was an especially frustrating time for me because my concerns were often seen as new mom paranoia or brushed off as a side affect of his seizures.  His symptoms were treated with therapy through the Early Intervention program but no real effects were made to find out what was really going on with him.  His therapists all thought that eventually he would catch up.  I even had one suggest that his “issues” were behavioral and that I should be tougher on him.  Fortunately, I relied more on my instincts and continued to press on for answers.  He eventually was diagnosed with a form of Autism by his neurologist. While it was nice to have an answer and a plan for treatment, I still couldn’t shake that uneasy feeling.

Autism day

He started a preschool for children with special needs through my school district’s CPSE (Committee for Preschool of Special Education) program.  Although he had a diagnosis, this didn’t seem like the big “thing” either.  I was noticing that he seemed special needs among the special needs, so Autism couldn’t be the only answer.  Why was my son so globally delayed? Why wasn’t he moving forward and in some ways, backwards even?  There is definitely something else going on…

preschool

Andrew is now 4 years old and in his second year of preschool.  He’s very happy and loves his role as a big brother. He’s overall healthy and doing well.  While we still don’t have all the answers for what’s going on with him, we have reached another milestone, genetic testing. We’d been pressing for it for years but since he was always so underweight we needed to wait until his body could physically hold up to the testing process. Sounds frightening, doesn’t it?  He finally weighs enough to get it done.  Although my journey is still very scary at times and unpredictable, I’m much more comfortable with it. That uneasy feeling has been channeled into acceptance and determination.  He has made life wonderful in many ways and even though he’s non verbal he has shown me that I’m more than just his mom. The way his face lights up when he sees me, that cuddling with me is his favorite pass time, and that he brings me his boo-boos to fix are just small examples of how he’s made me his mommy!  I now focus my energy on enjoying my wonderful, sweet and special little boy!

Signed,

Tonya Guandique

Andrew and Christian’s mommy

Parent’s Reflection on Child Life Services

As we continue to celebrate child life month, we have another guest blog post from an anonymous parent.

baby_newborn_child

As a first time mom you are learning right along side of your little one. I mean let’s be honest you have never been a mom, how are you supposed to know everything? The answer is you’re not, and looking back, how would I have ever known what was wrong?

It was a very exciting time for my family and I. My first-born was 18 months old, we were expecting our second son that spring and to boot I was offered a great position in a preschool working part-time, allowing my 18 month old to come with me. Life was fabulous!

One morning I dropped him off in his class where he was still getting adjusted to, but as a first time mom and a post preschool teacher of many years I knew or I thought I knew to let him cry it out, just like I did when I sleep trained him. Well that day he cried all day. Towards the afternoon I said something isn’t right. I went in scooped him up and brought him in my class and cuddled with him. He started to calm down but never stopped crying fully, so I did what any first time mom would do I carried him around with me. After an hour I said to myself okay now this is getting crazy!

Right before we left work I decided to change his diaper and what I saw next was extremely devastating. As I looked down what I thought was his intestines was really a massive hernia, I thank god that day a pediatric doctor was in the room. She took one look at him and said get to the hospital right away. I scooped up my child and I got to the hospital as fast as I could.

There we learned that this was even more serious. He was rushed with me and my husband to the sonogram room where he was held down by many doctors in order to make sure the blood flow to his groin was still working.

My mind was racing…..how did he get a hernia? Was it because I let him cry too long? Was his diaper to tight? I remember saying to doctors it’s just a hernia, how did it get so alarming? I was lost and all of a sudden my inner mom thoughts came to surface. I started to remember what one of my best friends, who happens to be a child life specialist, had taught me.

So as we were in the wheelchair, I pretended it was a polar express train going to the North Pole. When he was screaming from pure anxiety during the sono, I layed across him where my face was against his, telling him he was okay that mommy would never let anything or anyone hurt him on purpose. I began to sing to him and cry with him and at that moment he started to calm down and realized he had me and I wasn’t going anywhere.

We came home knowing he was getting surgery in a couple of days. I was a mess. I quickly picked up the phone and called what I like to call her “my mommy rock” also known as a child life specialist, my best bud, Shani.

She walked me through it all I remember feeling guilty knowing that there were children with far worse situations. She reminded me that he was my child going through this experience and that was as hard as any other situation. She made me a little bag of fun things for him at the hospital and dropped it off early in the morning so we wouldn’t forget it. She was my rock, she held me up when I couldn’t hold myself. She helped me be strong for my family.  She called to check up on him and at the same time giving me space so I can deal with my baby being in so much pain.

I remember not being able to bring him into the operating room because I was pregnant. I also remember crying because he was never away from me and left with strangers (well strangers to him the doctors where absolutely amazing). I also remember holding him after kissing him a million times. I can honestly say I still get teary eyed when I think about it.

Some people say, please it’s just a hernia, but did you know?

A) a hernia can stop the blood flow and cause a cardiac arrest?

B) a hernia not treated can cause other health problems

Thanks to Shani, I knew what questions to ask and even came up with other ones that I wouldn’t have thought about if it wasn’t for her.

It took two weeks for him to feel better and I have to say if it wasn’t for my family, friends and especially my best friend, I wouldn’t have been able to be as strong as I was.

So here’s to child life month! Thank you for getting me through a serious, traumatic mommy experience and for teaching me how doctors and scary moments don’t have to be so scary after all.

Signed,

Anonymous Parent of Two

If you would like to share a story of an experience that you had with a child life specialist, or how you learned about the field, please click here.