Lessons learned in caring for a child with microcephaly

TIPS IN CARING FOR A CHILD WITH MICROCEPHALY

Two years of caring for Miguel has taught me a lot about microcephaly and myself.

Here are some of them:

Microcephaly does not mean the end of the world. Like most parents who receive news about their child’s medical problem, I felt hopeless. What will happen now to my child? Will he be able to function normally and be independent? Will he be able to grow up? Or will his life be shortened by this condition? There were a lot of questions and the only answer we received from his doctors was that we just have to wait and see.

Apparently, there are many cases of children with microcephaly which showed that they can grow up normally and function independently. That certainly gave me hope. I knew then that I have to do my best to help Miguel reach his full potential, whatever that may be. It certainly is not the end of the world for us.

Don’t obsess about the size of your child’s head. When we found out about Miguel’s microcephaly, I became obsessed about the size of his head.
I was compelled to measure his head all the time. But believe me, it doesn’t help. So, put that tape measure down.

Early intervention is important. I realized that if I want Miguel to reach his full potential, I need to avail of services provided for children like him. It’s great that Miguel’s doctor furnished me with lots of information on who to call and what to do. So, I contacted the Infant Development Program and signed up for physiotherapy. There was also a case worker assigned to us who helped us in coordinating therapies for Miguel. There were the speech and occupational therapists who visit Miguel at least once a week. I can attest to the benefits of signing up our child as early as we can. For Miguel, I’ve been seeing his progress.

Learn as much as you can about your child’s medical issues. Most children with microcephaly have other issues like epilepsy, hypotonia, hypertonia, and cerebral palsy. So, it is imperative that we are vigilant as to what symptoms we are seeing in our child. Google has become my best friend. Whenever I see something different with Miguel, I would google the symptom and find several resources talking about different medical issues. These information really help me in asking the right questions to his doctors. At first, it was just microcephaly that I was doing research on. Then, it moved on to hypotonia after we were told by his neurologist that he has low muscle tone. When he started having seizures, my research brought me to articles about epilepsy. Learning as much as I can about Miguel’s condition somehow puts my mind at ease because I know I am not groping in the dark about what to expect.

Maintain a file of all medical reports. While doing research on Miguel’s condition, I came across the blog of a mom with a special needs child. She said that from Day 1, she maintained a file of all her child’s medical reports. That gave me an idea. So, I took a binder and started compiling all lab results, doctor’s reports and even correspondence with agencies providing services to Miguel. I can say that it has helped me be organized and make sure that nothing is missed when it comes to caring for Miguel.

Be proactive when dealing with your child’s medical team. The primary advocate of our child is us, his parents. So, we must be the thread that holds everything together. I learned very early on that I have to ask many questions. I have to be persistent in getting answers. I don’t wait for them, I push his doctors to give them to me. I know I may have looked annoying to them but it’s the least I can do for my child who can’t express himself or advocate for himself. Won’t you agree with me?

Don’t be shy to ask for help from friends or relatives. This is where I’ve been struggling with. I am a naturally independent person. I always tend to do things myself even if it means spreading myself thin. As a mother of four, my days are always busy and I realized that if I want to stay sane, I have to ask for help. So, don’t be shy to seek help as much as possible.

Avoid comparing your child with others. This means not even comparing our child with other children who have microcephaly. From what I’ve read and personally experienced, each child is really different. Each of them has different medical issues associated with his microcephaly. So, it is just useless to compare my child to others.

Focus on your child’s own milestones. It is easy to fall into the trap of expecting our child to do things that other special needs children are already doing. For instance, I met a mom with a child of Miguel’s age and with the same medical condition. Her child started walking when he was one and a half years old while Miguel is barely crawling at the age of two. If I let myself be envious of the other mom’s child, I will be missing out on enjoying Miguel’s own milestones.

Spend time outside the house. One thing that’s really challenging for moms like us is finding time for ourselves. I’ve learned that it can really get you depressed when you don’t consciously schedule time getting out of the house. This is a lesson I learned only recently. So, spend time with your friends, husband or your other children. It can be rejuvenating.

Take care of yourself. We are the primary caregivers of our children so if we get sick, who will take care of them? Eat healthy foods and have plenty of exercise. For me, I found that an activity as simple as walking can make a lot of difference.

Join a community of moms who are in the same situation. This is also a lesson that I learned just recently. I found several groups in Facebook alone which are composed of moms caring for special needs children. The first one I joined was the Microcephaly Support Group. Then there are: Parents of Children with Epilepsy, Hypotonia Parent Support Group, G Tube Babies, Children with Speech Delay Support, etc. You may also find groups in your own area which you can join for support. In my experience, I find that connecting with other moms who can understand exactly what I go through makes me stronger.

I hope these lessons help you in caring for your precious little one. I’m sure we will have more lessons to learn as we go forward. Please share with me some of yours in the comment section below.

 

 

 

13 thoughts on “Lessons learned in caring for a child with microcephaly

  1. I agree about learning as much as you can. Even things that may seem kind of out there or worst case scenarios are good to know and help you feel more prepared. My daughter has a seizure disorder and I spend several hours a month just keeping up with new info coming in.

    Liked by 1 person

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