What Having a Child with Cerebral Palsy Means to Us

Today is the first ever World Cerebral Palsy Day!

Matthew was formally diagnosed with Cerebral Palsy back in June. Part of me always suspected it, so I broached the subject with our neurologist and he agreed that he fit all the criteria and we added the diagnosis to the permanent record at that time.

So...what does having a child with Cerebral Palsy mean? Cerebral Palsy can vary from person to person, with the possibility of any number of symptoms. In Matt's case, he has stiffening of the arms and legs and he is immobile in that he cannot sit, stand or walk. We are still in the learning stages of Cerebral Palsy, but rather than talk about what limits Matt, I'd rather show you what having a child with Cerebral Palsy means to our family.

We work hard with our therapists

When we find a problem, we find a way to adapt it to our needs

We enjoy the little things

We find ways to make our work fun

 We work even when we'd prefer not to 

We meet new challenges head-on

And most important, we love  and support each other no matter what!

What does Cerebral Palsy mean to your family?



Matthew's New Wheels

 

 

The day I have alternately been looking forward to and dreading finally came--Matthew finally got his wheelchair.

 

I say looking forward to because the kiddo isn't a tiny little man anymore and my back is killing me. Thanks to the Ketogenic Diet he is on to control his seizures, he is weighing in at almost 30 pounds and he is outgrowing his stroller and high chair by leaps and bounds. At the same time I have been dreading this day for so long. The wheelchair is a big, bright red reminder that Matthew isn't able to walk, or run, or chase around his big cousins like he wants to. For us, it means we have to accept that  yet another dream we have for Matthew will be different than what we thought it would be.

 

He wants to get up and move around so badly. He rolls all over our living room, he tries to sit up and has even stood up on his own when sitting on a bench in therapy sessions. His last physical therapy evaluation showed great promise and twice weekly sessions have been recommended for him. Right now we're just waiting on an opening with a therapist at our rehab center or his school, all of them are fully booked with the new school year starting.

 

I am choosing to look at this as a positive thing, even though there are moments in this that hurt like hell. This chair will give Matthew so much more independence and freedom than his stroller ever did. Already his posture has improved, he is using the wheelchair tray to weight bear through his arms and hands, he is able to see his iPad better which will help when we start using our new AAC program, and he is loving that he is able to look around and see things that he hasn't been able to see before. I can't wait to see how he adjusts to the wheelchair and accepts it as part of his new normal.

 

 

Weekly Wind-Up: August 26, 2012

This is the first in what I am *hoping* will be my first weekly article. These are little things that have popped in our life and in the media that caught my attention. Please feel free to comment and discuss!

 

                                                                             1.

This was the first week of school for both the hubby and Matt. The first day was weird not having him home with me, but I found ways to fill all the free time by cleaning and doing a ton of laundry. The rest of the week ended up being harder because I missed him so much and I will admit I left the school teary-eyed. All in all, his teachers said that he had a great week, that he barely cried, and the biggest shock of all--he's become a napper!

 

                                                                             2.

 Florida teacher Jaclyn Ockerman, who has been accused of slapping, pinching and forcibly pulling the faces of her kindergarten students with Autism Spectrum Disorder. Lake County School Superintendent Susan Moxley recommended her termination to the school board back in July. Ms. Ockerman is appealing her termination next month and has been pulled from the classroom and reassigned to administrative duties until her case is resolved.

 

                                                                              3.

Toys 'R'Us has released their 2012 edition of Guide for Differently-Abled Kids in stores this week. This year's edition contains a list of 100 different toys which have been evaluated and recommended by the National Lekotek Center, an center devoted to children with disabilities. Maybe if a certain little someone continues to be a good boy, Santa might pick one of these up to get some ideas for Christmas.

 

                                                                              4.

 We are three days away from the start of the 2012 London Paralympic Games! The games will be starting on August 29th and will go through September 9th, and will showcase the talents of 4,200 athletes. Unlike the 2012 London Olympics, NBC plans to show only 5 1/2 hours of programming in the United States,with the majority of coverage not showing until the competition is over. Daily highlight segments will be featured on the U.S. Paralympic team's YouTube channel.

 

                                                                              5.

I am going to be fulfilling a long-time goal of participating in the 2013 Polar Plunge at Aquatica for Special Olympics. I have been wanting to get involved with Special Olympics for many years from when my younger cousin began competing, and now being the parent of a child with special needs I am even more  In order to plunge I had to raise a $100, and as of today, I have now raised $170! So I've set a new goal of $300 and I'm hoping to reach and surpass it.  Can't wait to be freezin' for a reason!

 

 

Hope you all had a great week last week and are powered up and excited for the week to come!



First Day of School-- A Big Day for a Little Guy

Today was the kiddo's first real day of school at UCP. He went to the summer program two days a  week for 3 hours a day, but this is a whole new world for us. As of today he will be going to the toddler program for 6 hours a day, four days a week, all at the tender age of 2 years old.

I have been with Matt every day of his life, never spending more than a couple hours away for any reason. With his epilepsy and other health issues, I don't just leave him with anyone either. My in-laws are the only ones who have ever cared for him other than Joe and I until now. This is a big adjustment for me, learning to let go and trust others with my precious boy. Also, because for the first time in two years, I have no idea what to do with myself when I am not caring for him.

He was so excited when he got to his classroom, he saw the other kids running around and playing with toys while their parents were waiting to speak with the teacher. I emptied his backpack and filled his cubby, then sat him in his Rifton chair and kissed him goodbye. I knew that he wouldn't be staying the full class time today because we had a standing speech and occupational therapy appointment, but it was so hard leaving him.

I get a lot of questions from other parents as to why I have him in school so young. Most tell me, "Good for you! You need a break!" That isn't why we chose this path for him. We wanted Matt to learn life skills,to get supplemental speech and occupational therapies (hopefully physical therapy too at some point), and to be with other kids who are like him.

I will miss my little monkey, but I am so excited to see the progress to come! And hopefully this will mean that I will have more time to work more here :)

Creating My Village

When I first found out I was pregnant, I was beyond excited. I was elated...I was nauseous... I was scared out of my mind. We had been trying to have a baby for about 4 years, and thanks to Polycystic Ovarian Syndrome (PCOS) we ended up with a negative pregnancy tests month after month. I had honestly thought that after that long we would never get pregnant. I was so scared of doing anything that might jeopardize this little blessing.

Within a day of the positive test, I was seeking out every single piece of pregnancy info I could lay my hands on, first being the Holy Grail of pregnancy books: What to Expect When You're Expecting.  I quizzed my mother, my grandmothers, my mother-in-law, our sisters, and basically anyone who possessed a uterus what their pregnancies were like. Armed with all their wisdom and experience, I felt like there was hope that I might not screw up my kid after all.

Five weeks into baby bliss, everything got turned on it's head and our little man began having seizures while my in-laws, Matt and I were in New Jersey visiting an ill relative.  To say that I was scared out of my mind would be putting it very mildly. Joe flew up as soon as he could to be with us and we spent the following week in a hazy hell of spinal taps, EEGs, and finally getting diagnosed with Epilepsy before we were allowed to bring him home. We had no idea just how much our lives were going to change.

All around me, my friends with babies had typical questions and concerns about their little ones. I had no one to compare our experiences to or ask questions about medications and therapies. As a result of our unexpected detour into Special Needs World and a hearty dose of undiagnosed Post-Partum Depression, I withdrew into myself and a few friends and family members dropped off our grid. I also suspect that more than a few of them were tired of hearing me complain about insurances and therapies. In their place we gained new specialists and therapists. I would see other moms bring their kids in for their appointments and we would smile and make chit chat, but never anything significant. And while we have tons of kids in both of our families, none of them have had issues quite like Matt's, so it was difficult for them to understand what was going on at times. I had never felt so alone in my life.

Shortly before Matt's second birthday we ran into a family we had met when I was pregnant . This time we had Matt with us and they realized that we had something very important in common: our kids had special needs. Their boys were older than Matt, but they had already been through a lot of things we were just now learning about. We bonded very quickly, trading diagnoses back and forth and finding out we had specialists and a physical therapist in common. The more we talked it felt like we felt like we had known them for years. I especially bonded with the boys' mom, Karen. Within ten minutes we had each other's contact information and Facebook information. I am so thankful we met them and that it brought me out of my cocoon.

Soon, I was like a special needs heat-seeking missle. I approached a mom in Target when I saw their kid was in a special stroller and start talking to her. That awkward exchange led to Matt's first play date. We met a family at SeaWorld and asked them about the model of wheelchair their son was using when we knew that wheels were in Matt's future and that led to another Facebook friendship. Karen introduced me to a group of special needs moms that she has been involved with for years and I jumped right in with them too. These are some of the strongest, most amazing people I have ever had the pleasure of knowing. They are amazing advocates for their children's healthcare and educational needs, they support each other when their kids are in the hospital, when an IEP meeting doesn't go the way it should, and even in the grief process when one of the kids get their angel wings. I know when things go wonky, they are always there to listen and send a virtual hug.

I am thankful to have so many people involved in our life that love us and love our kid. They have been with us and cried and prayed with us through scary times and they're the first to celebrate with us in happy times. I am humbled by the time and generosity they have shown us time and time again. They have become our family, our tribe, and we are more thankful for them than they will ever know.

Time Off

I never intended to go so long between my first post on here and the next one. Between taking Matt to school and picking him up, all of his therapy appointments last week and a much dreaded ophthalmologist appointment to follow up on his CVI issues, I have dropped some of the plates that I'm trying to spin. I am usually very organized and punctual when it comes to appointments, fueled by massive amounts of iced coffee and a manic fear of showing up anywhere even a minute late. I don't like letting things slip out of control and throw off the schedule. What's that expression again..make a plan and God laughs?

This week has been chaos because the kiddo is sick and that means no therapies and no school until he is feeling better. This is no easy task since he has been on the Ketogenic Diet for a month and all liquid over-the-counter meds are forbidden because of sugar content. I am lost without a schedule to follow now apparently. Since he is home we've been taking advantage of our down time to work on some skills his speech therapist wants to him to start recognizing and implementing. First is the "Get the/Give me the" rule, which works on two skill sets for him.  First, the "Get the..." rule works on his motor skills because he has to locate and grab the object, not so easy with visual impairment and poor muscle tone and grasping skills. Once he has the object in his hand, I put my hand out and tell him, "Give me the..." and let him drop it into my waiting hand. According to our superstar speech therapist, Miss Melanie, this will teach him to 1.) Recognize the object he is grabbing by name,  2.) strengthen his grabbing skills, and 3.) Teach him Cause and Effect, which we will need to master before we get  an Adaptive Communication Device down the road.

But, this week hasn't been all about the work. As much as I hate when he is sick, Matt and I both needed a break. We've been doing a lot of snuggling on the couch with a cozy blanket and watching all things Cars. Listening to him laugh when he sees Lightning McQueen and Mater is literally one of the best sounds in the whole world. I love this time with my little guy and it makes it worth all of the plates that I spin to keep him happy and healthy.

Welcome to Our Little Corner of the World

My name is Brandi, I'm a wife and stay-at-home mom, and this is my family:

My husband Joe is an elementary school teacher, although he is no longer in a classroom position. He deals with more of the testing and administration stuff now and he loves his job. We have been married for 10 years and have been together for almost 13 years. Two years ago, after dealing with many years of infertility and health issues, we were finally blessed with our beautiful baby boy, Matthew. Prior to Matthew's arrival I ran a school health clinic for 5 years and cared for middle school-aged kids with a variety of health issues. I loved my job, but as soon as Matthew was born everything changed and I became a stay-at-home mama.

Our life is a lot like every other families, and in some ways very different. We are first time parents of a child with special health needs. When Matthew was five weeks old we were visiting family in New Jersey when he began having unexplained seizures, as many as 7 in one hour while in the emergency room. Since we were so far away from our home in Florida, Matthew was admitted to the closest PICU for observation and testing. This by far, was the worst and scariest week of our lives. After a lot of testing and false diagnoses, we were discharged with an epilepsy diagnosis, a lot of medication, and orders to follow up with a neurologist once we got home.

As we would discover over the past two years, epilepsy was just the tip of the iceberg. We would learn a couple of months later that Matthew was born with genetic abnormalities. His third chromosome had micro-deletions and his fifth chromosome had a section that is inverted. A few months after that we learned after that he has bilateral mild-to-moderate low-frequency hearing loss and would need hearing aids. We went through a stint of plagiocephaly, where the right side of his head was flat on the back. He wore a molding band on his head for 6 months and it made some improvement on his head shape. In October 2011, he was diagnosed with microcephaly due to his head not growing according to normal rates for kiddos his age. Last month after a year of wondering, he was finally given a formal Cerebral Palsy diagnosis by his neurologist. There isn't any one diagnosis that we can use to explain all of his medical issues, so we just go on the best we can and keep living our day-to-day life.

This is the chronicle of our lives--the good, the bad, the messy and sweet.

Welcome to Mattyland!