“Acceptance doesn’t mean resignation. It means understanding that something is what it is and there is going to be a way through it”– Michael J Fox.
When the parents are expecting a baby, it is like planning a beautiful journey in the days to come. Overwhelmed with emotions, excitement, and anticipation, you know that your life is about to change.
But at times life has different plans for you and your child. When you find out that your child has been diagnosed with cerebral palsy, your dreams change. Your life changes! But that doesn’t mean the journey would no longer be joyous. For sure it is going to be filled with challenges, but all you need to do is believe that there is going to be a way through it.
Before getting to the tips, let me give you a rough idea about Cerebral Palsy (CP).
Here, Cerebral means something to have to do with the brain and palsy means weakness or problems with using muscles. Therefore, Cerebral Palsy is a group of disorders that affect a person’s ability to move and maintain balance or posture. The symptoms of CP vary from person to person. Even though it is known for problems involving movements and postures, many of them could also develop other serious health issues such as seizures, intellectual disability, vision, speech, or hearing problems, problems related to the spine, or joint problems. There are different kinds of Cerebral Palsy. For further detailed information you could read: https://www.childbirthinjuries.com/cerebral-palsy/
Coming back to the parents…
Raising a child with cerebral palsy comes with its own share of challenges. Yes, every child displays various symptoms but somehow even the mildest form is more than enough for the parents to feel stressed out or anxious. Many parents also undergo depression and anxiety issues.
Whether the case is mild or severe here are few tips that could help the parents raising a child with Cerebral Palsy:
1. Accept the situation and allow yourself to grieve.
Yes, it is unfortunate, but it is okay. Give yourself some time to process and grieve. Sit with your partner and make sure that both of you are aware of what you two are going through. Communicating with your partner is essential as this is the time that not only your child but the both of you need each other’s support to handle the situation. In many cases, the stress is so much that it creates a tension between the parents which could lead to separation. And that is really something you don’t want.
Assign your roles so that one parent doesn’t end up being over-focussed on the child and resent the other for lack of involvement. Try and take out some time for yourselves and talk about yourselves and be with each other.
And in case if this is not how you roll, then you could seek out support from various support groups, ask other parents for ideas and suggestions, help from extended relatives, forums, books etc. All that matters is after you have had your time to process your grief, you must be on top of your game for your child’s sake. It is important that you accept the situation instead of blaming fate.
2. Time to plan.
This is where you take stock of your finances. Review your childcare plan if you have one. You might need to consult various health care providers, paediatricians, specialists etc. Make sure that you have enough resources or funds for the same. You might need to adjust your lifestyles so that you have some extra funds to provide good care for your child.
3. Make sure to stay on top of their care.
Raising a child with cerebral palsy means you might need to pay multiple visits to specialists or doctors, who are referred to you. Hence, it is prudent that you stay well informed about your child’s health and the treatments that your child is undergoing.
Many a times the doctors prefer that the parents be equally involved when it comes to the care part. You as parents should discuss various treatments with the doctor and see what works best for your child. Keep a keen eye on which treatments work the best and which are the ones that have some hurdles.
When you and your doctor work as a team, you are likely to be more satisfied or at ease with your child’s care. Try and educate yourself about your child’s health as much as possible. Also, try and educate your child’s teachers or anyone else involved in your child’s life about the condition and the challenges that come along with it.
4. Prepare yourself to be your child’s at-home therapist.
For a child with CP, therapy doesn’t end at the therapists. With proper guidance from your child’s therapist and by leaning the proper ways to make your child exercise at home could make raising a child with CP easier for you as parents. This mean that you observe and learn how to stretch your baby’s muscles, help them build balance and reduce their pain. In case your child suffers from severe pain then learning a few massage techniques might be immensely helpful.
5. Encourage them to be active.
An important aspect while raising a child with cerebral palsy is to make sure that you keep your child involved in activities and make sure that the child enjoys it and is happy. You might find that your child might not be at the same level as the other children, but don’t let that bog you down or feel disheartened. Your goal or your objective should be to make your child move to the best of his/her ability. Encourage them to move as much as possible.
If there is a wheelchair involved, take a deep breath, and try to be patient during the process.
6. Let them be themselves.
Many a times parents tend to be too overwhelmed by their child’s condition that they forget he/she is a child to begin with!
It is important to let them experience their childhood. Let them have fun in whatever way they like. You are the parent, and you know your child. Listen to your instincts as well. Let them expand their mind. Give them a chance to try new things. This could instil a great amount of confidence in them. Try and teach them to be independent. It might be a struggle for them and totally unbearable for you to watch them struggle or cry. But this is important for them, for their future. Dealing with struggles on their own would make their navigation through adulthood easier.
7. Make sure that they have a nutrient rich diet.
It is important that you pay a lot of attention to the kind of diet you give your child. Your doctor might prescribe medicines, but a healthy nutritious diet plays a major role in strengthening bones and muscles and enables proper brain development.
8. Help the child understand their situation.
Easier said than done; but this is the most important aspect that the parents should keep in mind when raising a child with cerebral palsy. You need to make your child understand that they are different, and it is OKAY! And it is normal that people might be curious. Make sure you instil enough confidence in them that they don’t feel hurt when people point at them or ask them questions. Give them the encouragement to answer any kind of question and face people.
9. Discipline is a MUST!
Despite your child’s condition, severe or mild, discipline should be followed. Make your child understand that he/she must follow rules just like everyone and also make sure that they don’t get a special pass, be it in their social circle or school.
10. Teach them how to be their own advocate.
From the time you learn that your child has CP, you as parents tend to be their voice. You are the one who takes care of their every need. You are the one who stands up to get what they want or deserve. But, it is important you teach them to be their own advocate. As they grow, teach them to speak up for themselves and ask for what they need. They need to be able to communicate with others and ask for any help they need. CP does not go away or disappear as your child grows. Hence, encouraging them to speak for themselves will be a great help for not only them but for you as well.
11. Be Positive
Raising a child with cerebral palsy is difficult but it is not the end of the world. You as parents need to maintain a positive attitude and stay relaxed in front of your child. This will help your child stay positive as well. Don’t keep focusing on their setbacks; at least make sure that you don’t do that in front of them. Observe your child. Focus on their strengths and help them realize their strengths and potential.
It is likely that a child with CP might go through depression. If you see any such signs, immediately seek professional help. It is important that they receive proper mental healthcare.
Some things to remember:
- It is important that as parents you realize that you aren’t the ones who have caused CP. Don’t blame yourselves for it.
- Try and play with your child. Many parents believe that “playing is not learning” which is untrue. Playing with your child can be useful for their development in many ways.
- If you see any early signs or notice that something is slightly off about your child, immediately seek help instead of ignoring it and thinking that it will become better with time.
- Please do not expect quick results. CP will last for life. And in many cases the progress might be really slow. So, do not lose motivation or get bogged down. All the effort you put into your child is never a “waste of time and energy”. Remember that you are their anchor.
- Teach your child that they are braver than they think, stronger than they feel and loved more than they know.
- If your child has siblings, it is important that you train the sibling/s and make them understand the gravity of the situation. When the child with CP gets most of your attention, the siblings might feel ignored and might form resentment either towards you or the child. Hence, it is important that you spend enough time with your other child/children and make them understand that you all are a team, and you all need to work together. Make sure that the siblings also share some responsibilities; either with your child with CP or household chores so that everything runs smoothly and in harmony.
While raising a child with cerebral palsy you need a lot of planning, adapting, perspective, organising and inspiration. It is a different journey altogether, but you can embrace it and make it beautiful for yourself and your child.
“The past haunts and the future taunts. This is particularly true if you love a child with special needs”– Sylvia Philips.