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Be Your Child’s Advocate
I’m sure that as a parent of a child with “disabilities”, the phrase “Be your child’s advocate” has been heard more times than you can count. But it remains an issue that most parents and guardians struggle with. Some of us do not want to be overbearing or seem ungrateful for the help and services we are already receiving. But, being silent when something seems wrong or shying away from asking for more (or less) may be more detrimental than we may think.
Unlike raising children of “typical” development, a child with “disabilities” may not be able to clearly communicate when he is happy, in need, or if she is being neglected, mistreated or uncomfortable. Therefore, it is up to us, the parents and guardians, to stand in the gap for our child.
Below, I will discuss 3 topics to help us be better advocates for our child. I will also share some of my actual experiences.
The 3 topics are:
Learning your child’s language - Communication.
Advocating for More - Add or Modify Services.
Advocating for Less - Stop or Reduce Services.
1. Learning your child’s language - Communication
The first thing that we must establish is learning our child’s language. This is not an easy feat. Communicating with someone who is non-verbal or who does not communicate in our typical fashion can be frustrating and seem impossible. The best way to break this language barrier is to spend more time with the child or client. There is more to communication than words. Body language, facial expressions and seemingly illegible sounds are a few ways that we can communicate with one another.
In many cases with persons of disability, these tertiary modes of communication need to become the primary focus during communication. This is not a new idea. We communicate with babies in the same way. We do not wait until they turn one year old to start to listen to what they are saying to us. We listen to the type of cry, the level of distress, and the baby’s body language to know if they need food, diaper changes or just a cuddle. This means that we should take the time to listen, not just with our ears, but with our eyes and hearts as well.
For example, during communication with my partially verbal 7 year old, an emphatic “no” with head tilt means no compromise, he doesn’t want what’s being offered. A soft no with a smile usually means he is exercising his ability to say no to a chore such as taking his plate to the sink because no one likes chores. I can override that soft no by repeating my question and bargaining as I continue to train him to not eat and leave his plate behind. An emphatic no can be when he really doesn’t have a full bladder and does not need to use the restroom as we continue to struggle with potty training at age seven; Ps, he has never in his life wet the bed, it’s selective incontinence, amazing!
I choose not to always override him because I need him to continue to feel free to communicate openly with me. Fortunately for his older siblings, they too are now benefiting from what I have learned from handling my child with “disabilities”.
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2. Advocating For More - Add or Modify Services
You don’t know what you don’t know. Most of us in this situation were blindsided by our current challenges. It was always someone else’s struggle and our heart went out to them. But now that we are in it, we realize that we know nothing about the challenge.
Many organizations have been set up to provide information and services. However, sometimes it takes a bit of luck to find them when they are needed. Notable organizations that everyone should be familiar with are Regional Centers, Supplemental Security Income (SSI), In-home Support Service (IHSS), and Special Education programs in your local school districts.
But knowing that these services exist isn’t going to get you the services you need. My sad story, with a happy ending, is that although I was with the regional center from the birth of my son, I was not told about services such as In home support services. I now have it for him starting at age 5, but I really needed it after 2 open heart surgeries, times when I was so stretching thin, when childcare was so expensive because I need to have special nannies, who I paid heavily out of pocket because he couldn’t go to a regular daycare while healing from two open heart surgeries.
Sometimes, I feel like it takes some luck to find what you need but a support group is usually your best bet for real answers and clues to available services. It’s advisable to read as many blogs as possible, join support groups like on social media platforms and just keep asking questions if your situation seems to demand more. A good family doctor can also be a good source of information. If you feel that something is off, it’s best to ask questions. Sooner or later, your questions will evolve and lead you to the answer you are looking for.
Be patient, it may take a while, but it’s much better than how long you or your child may suffer if you do nothing. I always remind myself that there is nothing new in this world. Chances are that someone has been through my exact challenge or similar and the answer is out there, even if it has to be tweaked to work for me.
So, If you feel like you need more therapy, ask for more. If you feel like your current level of care is mismatched or inappropriate, talk about ways you would like to see it improved. If your provider isn’t listening to your concerns, change them and find someone that will listen. It's nothing personal against the provider to want a better match, one size does not fit all. Be as polite as you can be, but always show that you mean business or you may not be taken seriously enough to trigger change.
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3. Advocating for Less - Stop or Reduce Services
In the healthcare field, curiosity may get practitioners carried away. I am a healthcare practitioner, a Pharmacist. I am fascinated by patients with atypical health presentations, and I expect no less from my colleagues in other departments.
It was not long after my youngest son was born surprisingly with Down Syndrome that I was reminded of my patient care training that states “Treat the patient, Not the numbers”. Even after my son was born, the genetics doctor was still predicting that he would be born with conditions he obviously didn’t have and would have been better off aborted. I was very infuriated. This beautiful child was right in front of her with only a correctable heart condition. But she was focusing on all the other things that should have gone wrong with the development of a child with down syndrome in utero?! I had to interrupt and say “no more! Look at him, he’s right here. He does not have those conditions, why are we here at your office for a consultation I do not need?”
Another incident was with his first pediatrician. After doing the typical finger eye exam, his tracking was normal, no issues. Being my third child, I knew there was nothing more to be done. But then she recommended an eye exam referral because children with down syndrome have been shown to have eye issues. I knew at that moment that I needed to do more for my son by doing less to him. The curiosity or boredom of his pediatrician made her overlook test results and instead suggest tests that would traumatize an innocent healthy child. It was not life threatening, it wasn’t even needed as he had just passed her eye exam. She was fired immediately.
I am not advocating the rejection or refusal of all services by your providers. As a doctor, and trained health professional, I am more likely to call out unnecessary demands because of my education background. So, I beg parents and guardians to always ask questions if your heart speaks to you. Ask if this is a necessary procedure. Is it answering a question that could help us solve a life? Does my child really need a traumatic blood draw for cholesterol at the age of six just because he's got down syndrome and is a bit above average weight? Funny, my other “normal” children didn’t need lipid panels at that age six. True story. I said no. The next pediatrician gave a clean bill of health as expected. I was so relieved that someone could see my son and not just his diagnosis of Down Syndrome.
Another area that may go overlooked is with therapy services. Is your child receiving therapy all day everyday? Put yourself in his shoes and also feel your own stress as you coordinate that busy schedule. Is there a better way to streamline the services so that they cause more good and less stress and trauma? Yes, your child may need six different services, but keep working to make sure that the busyness of the schedule is necessary and sustainable by you and your child. It may help to revisit your goals and choose what’s really required to achieve a realistic goal. I had to temporarily put adaptive PE therapy on hold since we enrolled in AYSO - soccer. Happiness and less stress should always be part of our primary goals.
Again, I want to emphasize that it is very important to take the time to educate yourself via internet searches, textbooks, classes, books and support groups. If you take the time to educate yourself, your confidence will grow and your decision making skills will be better. You will be more likely to create a healthy compromise with your child’s needs and the enthusiasm of your service providers. You and your child will be better for it.
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In Conclusion, we must always weigh the benefits versus risks to your child’s overall wellbeing. These special children have been poked and prodded more than ourselves at their age. Their trauma is real and it is up to us to protect our children from unnecessary pain and suffering. We must earn and maintain their trust. This way, when we agree to a service or procedure, they will be happy knowing that it is absolutely necessary and in their best interest.
Disclaimer: One size does not fit all. Please use this article and my experiences as a motivational tool to find what works for your family's situation and child’s unique needs.
Enjoy the journey! Happy To Be Special!
Dr. Chidi.
Photo by Nicola Barts : https://www.pexels.com/photo/a-woman-and-her-daughter-looking-at-a-laptop-together-7943513/