Have a Kid with Cerebral Palsy? Dare To Dream!

Never Give Up On Your Dreams!

“kya ab koi umeed nahi hai?” I asked upon learning about my daughter’s diagnosis of cerebral palsy in 2018. I knew my daughter might have problems, she was born prematurely, but I never imagined the hitches that lay ahead.

Though my daughter- Mia seemed fine at first, after several months, I started to notice that sometimes Mia seemed very floppy, almost like a rag doll. Other times, she seemed to stiffen. I knew that she didn’t reach the same growth and motor milestones as my older daughter.

My worries and fears:

Two types of attitudes can be adopted as a result of future thinking: positive or negative. Therefore, the next emotions tied to thinking about the future are optimism and anxiety. They are interrelated and may differ in frequency. The influence of one kind over the other is either negative or positive for the human.

Most if not all, parents develop wishes, expectations, and dreams for their children, even before the child is born. At a minimum, parents wish for a healthy baby (“We don’t care whether it’s a boy or a girl, just as long as it’s healthy” is the cliché that is repeated over and over), and we assume that it will be so. The discovery that the desired child has impairment can be seen as destroying the parent’s hopes and dreams. Questions started creeping my head like I was a child trapped alone in a dark room. Worries like:

• Can a child with cerebral palsy live a normal life? What is the leading cause of cerebral palsy?
• How do I know if my child has cerebral palsy?
• Does cerebral palsy get worse with age?
• Can children with CP walk?
• Is Cerebral Palsy painful?
• What is the best treatment for cerebral palsy?
• Does cerebral palsy qualify for disability?

Numerous doctor appointments later, my daughter was eventually diagnosed with cerebral palsy. I went to the Internet right away to search for anything and everything about cerebral palsy. Ahhh… Infinite questions and so few answers and without the authenticity to rely on.  I felt irritated by the limited information I could find that precisely addressed the needs of parents.

I expressed my frustrations to Mia’s orthopaedic surgeon, who connected me with another parent of a child with cerebral palsy. My new-found partner in distress, Neha, and I set out how to help educate other families on prevention and treatment. But we weren’t sure where to start. We read about spina bifida, a disabling birth defect of the spine, and about the discovery that folic acid can help reduce it. That’s what we want our ‘folic acid’ something that could help prevent cerebral palsy, I said. We find out that without knowing the root causes, we cannot avoid and treat cerebral palsy. 

At such a young age, it was hard to watch Mia go through the pain of two major orthopaedic surgeries, but we knew it was necessary to help her walk. 

Mia is flourishing today, but I know there are going to be many challenges ahead. I dare to dream, like all parents, that my daughter will go to college and have a meaningful life.

WE ARE ON A MISSION TO HELP PARENTS MANAGE CHILDREN WITH SPECIAL NEEDS, TO MAKE THEIR LIVES EASIER AND BETTER. WE ARE HERE TO BRING CHANGES, POSITIVE CHANGES TO THE LIVES OF OTHERS & OUR OWN.

PLEASE SHARE OUR PAGE WITH YOUR FRIENDS, FAMILY AND NEEDY PARENTS TO SPREAD THE KNOWLEDGE.

New Year's Resolutions: 6 Tips For Super Parents of Special Need Kids!

You are a Super Mom!

Goodbye bad habits, welcome good habits.

It’s New Year’s Eve and everyone is excited.

Everyone is busy deciding what to wear tonight, busy on their phones in WhatsApp groups – finalizing the venue of celebrations, busy taking selfies while waiting for their turn in the salon. Busy busy…

At the same time, everyone is very optimistic about the brand New Year that will come tonight when the clock strikes 12.
Enter the New Year, and all of our New Year Resolutions will kick in. Many will quit smoking, many will stop drinking and a lot many will start exercising to lose weight. A few of them will actually make it, a lot will forget their resolution within a week, if not less.

Maa, a super-parent is one of many who has New Year Resolutions. But she isn’t busy planning for a party or getting ready in a salon. She is different, you know, she belongs in the rare 0.3% club. Yet, she is busy with someone else – no, not her boyfriend or husband.

She is with Beti, a child with Cerebral Palsy.

3 infants in every 1000 live childbirths in India are born with Cerebral Palsy. Beti was one of them.

As a parent, Maa is selfless – is worried about Beti and wants her daughter to be happy, healthy and ever-smiling. Maa is very positive and highly motivated about the New Year ahead and has made a list of New Year Resolutions for her and her daughter.

I asked Maa if she could share the list. She did so, gladly. Here’s the list for you:

6 Basic New Year’s Resolutions for a Parent of a Child with Special Needs/ Cerebral Palsy

1. Stay Motivated

Staying motivated is the foundation for all the New Year Resolutions ahead. No motivation = No resolutions.

If you want to drive only 1 resolution as a parent, it should be motivation.

For parents of a child with Cerebral Palsy or any other form of disability, motivation is a rare commodity. Lack of positivity, the abundance of negative thoughts and worries kill motivation, that can have a snowball effect on your mental health.

It is natural to worry about the future, but remember – the future has to pass through the present. Your present will lead to future, so focus on the present, make the present better and happier.

How do I stay motivated when I see my child suffering every day?
Your child is not suffering as much as your thinking is suffering. In fact, he or she is happy that her parents are present to take care of them, to play with them, to make them happy!

Write down on all good things that happen daily, even tiny good things and thank god for the same.

2. Stay Happy

Amid regular therapy appointments, doctor visits and concerns about the physical health and social growth of a child, remembering to be happy, often fall to the side-lines. But to find their happiness, it turns out parents don’t have to look far.

To be happy should be a top priority for us all, not the last option. When someone loses sight of how to be happy and what it means to find happiness in every circumstance – it drains their hope

If you stop caring for yourself, you will lose sanity, become easily irritable, frustrated, and always in a bad mood.

Get smaller bits of happiness throughout the day as medicine to stay healthy. Spend some time with your spouse, watch a comedy movie or a TV show, or simply do what you liked doing before you became a mother. You may not have enough time to do everything every day, but try arranging some time when your child is with a caretaker, is sleeping or is involved in some activity.

Those small doses of happiness should be enough to keep you in a good mood and mental health.

3. Check for newer therapies

Science is evolving every day, so don’t blindly follow what others follow.

Keep yourself up to date through reading the latest developments in therapies and treatments for special needs kids.

You can set Google Alerts for keywords like Cerebral Palsy and Special Needs Kids, Google will then alert you via email every time there is news on the topic.

But be cautious, don’t believe in anything until you research the information on multiple sources. Lastly, speak to your occupational pediatrician before you follow a new therapy/ treatment.

In addition, specialized counselling of yourself conducted by a qualified clinical therapist can introduce you approaches in dealing with stress when it arises. Counselling can also enable you to support your child with day-to-day experiences and activities, particularly those that can cause stress or unhealthy coping mechanisms.

Check with your doctor for guidance in finding counselors who are trained in supporting parents of children with special needs.

Does Your Child have Vestibular disorders?

4. Teach a new activity

Teach something new to your child as per his/ her capabilities.

Try teaching painting, piano, guitar or even creating art from clay. A new activity will give that much-required change in the boring routine of your child and keep him/her happy.

Once you notice that your child is showing signs of boredom, it is time to teach a new activity.

You are the best teacher for your child as you know him/ her more than anyone else does. Adapt your teaching pace accordingly and know the safety limits.

5. Make new friends

If your child goes to a school for kids with special needs, this becomes an easy task – befriending moms of other special needs children. Or else, you may find new friends when you are waiting for your turn during a routine appointment with an occupational paediatrician.

In fact, most cities have local groups where parents of children with disabilities can come together to discuss problems and challenges they face. Not only does this provide you with a way to help vent your emotions, but it also helps you to link with people who are going through the same things.

If meeting in person is an obstacle, there are a variety of support networks online, mostly free, that can provide an outlet for you to connect with other parents and/or caregivers

You can also make a WhatsApp group or Facebook group of parents from your city. Motivate and help each other, share good and bad experiences, latest developments, etc.. in the group. Staying in touch with a community of similar parents will give you that extra boost of support and morale.

It really is important to establish a support system consisting of families, friends and neighbours who can provide emotional and pragmatic support.

6. Health insurance

Firstly, get a health insurance plan for your child and yourself to be safe from bill shocks. Getting health insurance for yourself would be easy, getting one for your child may be difficult through private insurance providers. For your kid, enrol in Nirmaya Health Insurance Scheme launched by the Government of India.

Medical expenses are getting more expensive every year, so it would be better to be covered.

What’s next?

There could be 100s of NEW things you could try next year but ensure you do implement the 6 of the above resolutions.

Of course, you may need to adapt the list as per your situation, you may not be in the same situation as Maa. Be flexible with everything to stay happy.

All in all, don’t lose focus on your own needs, stay happy, positive, be a part of a community, keep your knowledge up-to-date and invest in health insurance to cover medical expenses. Be a Super-Parent 

To summarize it,

Let’s try to remember these markers. Write them down on sticky notes and put it in a place where you habitually see it:

1. Stay motivated! I will endorse my feelings and honour them, I will live in the PRESENT!
2. Stay Happy! If only five minutes a day, I will have fun! I will distinctly remember laughing at least once a day.
3. Stay up-to-date! I will look for newer therapies for my child & yourself on a regular basis.
4. New Activities! I will concentrate on the strengths of my child, not shortcomings. Teach them something new!
5. Stay Social! I will look for new friends, create a new social circle for support and boost my morale!
6. Be smart! I will manage Finances, take up health insurance for my child and me!
7. Recollect! I will recollect each day’s ‘silver lining’. I will have hope, above everything and anything else.

Wish you all the happiness in the years to come.

What are your plans as a super parent? Please comment below…