A parent knows what’s best for the child, maybe you don’t agree but that’s not your business – Unknown
I was talking with my friend Janice (Titanium Amy’s mom) about the importance of having a great medical team by your side and how we both have struggled to work to meet the needs of our young adults.
No matter what the disability of your child, or the medical issues they have, you as a parent have to become the most knowledgeable person on that topic. Research and data will be your companions and allies when looking to discover new treatments, new symptoms, or side effects of the diagnosis that are happening to your kid.
As a parent of a chronically ill child I will tell you that taking care of my kid is one of the most difficult and demanding jobs I have ever had. Not only do I have to know how her illness and medical needs affect her, but I also have to try to balance how much she understands about her disease, how much can and should I tell her so she does not get scared about what she is going through while at the same time trying to make sure that the whole family does not suffer because of what is happening to her. One of the best things that has happened to me is my wonderful partner, my husband. Having that loving person that can ground you when you are feeling lost and remind you that you are doing a great job when you are tired and with no sleep, is absolutely a joy and a blessing.
Children know when there is something wrong, especially if it is them that is in the hospital. The best thing you can do is be honest with your child. Give them information about the name of the illness or disease. Children, especially those with a disability will process information at their own speed, so giving them pieces of information instead of all at once.
It is OK to tell the children that you do not have all the information, that you will get it later. Use the professionals to help you explain what is happening and why. Older children may want to talk to the medical staff themselves, encourage this communication so the child has ownership over his or her medical treatment as much as reasonably possible.
Your child may have many feelings about what is happening and about the changes in his or her body. Encourage them to share these feelings with you. Don’t be surprised if you see different behaviors that had not manifested before. Many of our children don’t have the vocabulary to express their feelings so finding alternate ways to communicate (drawing, music, picture exchange, touch pads) will allow the team to understand how the child is feeling.
You will all need time to adjust to the new diagnosis and the changes that the child might go through. There may be a variety of feelings within all of you, sadness, anger, fright or fear. Many hospitals have counseling services that might help you and your child deal with the different feelings you all might have.
It is normal for family dynamics to change or be altered when a child is sick or has been diagnosed with a disability. When the child is in the hospital the normal routine of the home changes, siblings may have to go be with relatives or neighbors and might feel neglected or wanting for the attention that the sick child is receiving.
Professionals suggest that we try to keep the routines of the home as normal as possible. Allow siblings to continue their life as usual going to school, after school programs and recreational activities. Call on friends and neighbors if possible to help you with carpools and errands. Try to have a family meeting so everyone is on the same sheet of music, and understand that things could be a little different until you all find a new normal.
Schools have a great many deal of resources that can also help. Talk to the teachers or school counselors and let them know you have a sick child. The siblings might change at school act withdrawn, or show signs of anger or stress. Ask the teachers to keep an eye out for that. If the child that is sick is the child with a disability you may want to call for an IEP meeting and update the team. If the child that is sick is not the child with a disability you may still want to address the teachers for both kids and ask for help for both of them.
When Janice and I talked we were sharing how we like doctors and professionals that feel challenged by working with our kids, professionals that like the fact that our kids are different and complex and full of possibilities. However, we have both met professionals that see the disability before the child and because of this we feel they discard our child. As the parent of the child, you have a vast knowledge about what is happening to your kid, how the illness is affecting them, how it has changed them. You want to work with who will help you unlock what is happening to your kid so you can follow the treatment and protocol that they suggest.
I remember going to see my girl’s pediatrician, Dr Reyes., and sharing with her that I was feeling tired and so overwhelmed of having three girls under the age of three and two of them on apnea and bradycardia monitors. She looked at me and said: “Mija, I was wondering if you were a saint because you have so much going on and have never complained.” She recommended that I get help and support. I was already getting help from the state, but she was talking more about my mental health, about what was I doing to take care of me, the new caregiver. My role had changed and I needed to acknowledge that. I will post another blog about taking care of the caregiver but for now let me share with you some of the things I did.
Like anything new, it will take time to establish you new family routines. Let yourself go through the stages of grief so you can come out with a positive outlook for the things you need to do for yourself and your family.
Titanium Amy blog – https://titaniumamyblog.wordpress.com/