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Navigate Life Texas: Resources for kids with disabilities and special needs
Navigate Life Texas: Resources for kids with disabilities and special needs
No parent wants to imagine their child dying. It doesn’t matter if you had some warning about your child’s death; it is devastating. No one can completely prepare you for all of the different emotions you might have. How could they? Losing a child is simply unimaginable.
Although it might seem like a superhuman task, as much as possible, try to prepare for some of the decisions you’ll need to make during the final part of your child’s life. And the things you might go through. This page is for parents who have lost a child or think they might soon.
We have information and advice from other parents and family members who have lost a child with a disability or special health care needs. They want you to know that you’re not alone. They have faced the pain and agony of losing a child and have things they want to share with you hoping to make your journey more bearable. We also have tips from EMS (Emergency Medical Service) medics who offer their advice and compassion.
Grief is a process everyone goes through after losing someone important. Saying it’s a process means it brings up many different feelings and takes time to go through them all. There are stages of grief that usually include:
You might go through these feelings in a different order, not feel all of them or even feel more than one thing at once. You might also feel overwhelmed, scared, anxious, confused, relieved and more.
It’s normal to have many emotions if your child has passed away or you think they might soon. Be kind and patient with yourself. Know that all of your emotions are important and that it’s OK to feel them all as you slowly begin to heal.
To help deal with their emotions, the parents we talked to said it was helpful to get counseling, find support groups and connect with other parents who could understand their situation.
To find counselors or groups that fit your needs, you can ask other parents, a hospital social worker or a case manager—or you can search online. If possible, find a support group or counselor focusing on parents of children with disabilities or special health care needs. Support groups for any parent who’s lost a child may not feel right for you. Trust your gut when picking a group or a counselor to be sure those connections feel helpful.
Remember that your partner or other friends and family might have different feelings than you. They may show their grief differently. Losing a child may bring some parents closer or can put a strain on their relationship. That’s natural. Everyone has a different journey. You might find it helpful to go to counseling with your partner as part of the grief process.
Siblings also need special support when losing a brother or sister. They need to know what’s happening. They need a place to talk about their feelings or a way to let them out that fits their age. And they need that support before their sibling dies, if possible. Support is helpful when their sibling is in and out of the hospital or at home dealing with medical issues. Some counselors work with children who are dealing with grief. There are also support groups in some communities just for children who have lost a loved one.
Many children act differently when they go through a big change or loss. Signs that they need extra support include:
You might see signs like these for a short or longer time. If you are concerned, think about getting mental health help for your child.
Our page on Finding Mental Health Resources for Children has ideas on where to start. You can also ask other parents, a hospital social worker or a hospice worker for programs and places to look.
There are so many decisions to make when your child is very sick or you think they might be near death. Things like how and where they will spend their last moments, who will or won’t be there, who you will tell and what type of final arrangements they will have—if they will be buried or cremated and more. These are incredibly difficult things to plan.
You might not be ready to make all the decisions yet, which is fine. But if you’re able to think about some of it, you could save yourself stress and make things less costly in the future. Other parents have said planning ahead gave them more peace of mind at the end of their child’s life and more time to focus on being together.
This is a time when your main concern should be your child and your family. Try to ask others for what you want and need. Help your child to do the same if they are able. That might mean asking certain family and friends to visit or asking others to stay away until you’re ready. It might mean saying “yes” to certain types of help and “no thanks” to other offers. This is your time with your child. Don’t worry about other people.
One thing to think about if you know your child is near death is getting hospice care in the final weeks or days of their life. Hospice is a program set up to take care of everything your child and family might need right before and during death, usually from your home. That includes your child’s medications, equipment, pain management and other care.
Hospice care can make a very hard time much more peaceful and less confusing. It offers support for your family – as much as you want – like:
Palliative care can be another very helpful option for a child with complex special health-care needs—at any time in their life.
Some people think that putting a child on hospice care means that you are giving up on their life. But the parents we’ve talked to say that hospice was an incredible support and blessing for them at a time when they really needed it.
As one parent said about hospice: “It’s a way to end a life with dignity and respect.”
Another said, “My advice would be to tell parents to get on hospice as soon as possible. I can’t promote it enough.”
You can read one parent’s story, What Hospice Gave Us, and learn more in our Hospice Care for Children article.
Hospice is a way that your child can die peacefully. It gives parents time to say goodbye to their child on their terms without the sirens, police or EMS. A hospice worker is there to handle making phone calls and other next steps. Without hospice, families can face additional stresses. These are discussed more in the Legal Rules section below.
To find a hospice program in your area, you can ask at the hospital or look on the Texas and New Mexico Hospice Organization website.
Another thing to think about is if you want to put any “advance directives” in place. Those documents explain what you or your child want to have happen in an end-of-life situation.
Advance directives:
There are two different types of DNR orders. You can create one to use while your child is in the hospital. It’s important to create a new, different type of DNR for when your child is at home. That is called an Out-of-Hospital DNR order. You can also order a special bracelet or necklace that shows your child has an Out-of-Hospital DNR called an OOH DNR ID device. Emergency responders like EMS can only follow Out-of-Hospital DNRs. If you only have a hospital DNR, they usually have to call your child’s doctor before they can stop trying to save your child’s life.
The Texas Department of State Health Services’ Out-of-Hospital Do-Not-Resuscitate program page has everything you need to know about these DNRs, a form you can use to create one and how to order an OOH DNR ID device.
Texas Health and Human Services has a page on advance directives, including living wills.
It’s important to know that you can change a living will or tear up a DNR at any time if you change your mind or your child starts doing better.
If your child has a medical emergency at home and it leads to their death, there are things you should know about the legal rules that emergency responders like EMS and police need to follow.
First of all, when you call 9-1-1, it’s important to try to talk as calmly and clearly as possible about what’s happening and what you need. EMS medics must try to save the life of any person having a medical emergency unless they are given paperwork like an Out-of-Hospital DNR order or see an OOH DNR ID device. So, if you have this type of DNR, the sooner you can say it and show proof, the better. They want to respect your plans and wishes for your child.
Here are some things EMS and parents have told us:
When any person dies outside of the hospital and does not have hospice, the police need to look into the situation like it might be a crime scene. This is something they have to do. The police will probably ask you questions, may ask to talk to your child’s main doctor and may want an autopsy (a medical exam after death) for your child. Once the police are done, they will send your child to the medical examiner’s office or to your requested funeral home.
With all of these people around asking questions, it can be confusing, stressful and hard to watch. Here are some things you can do:
Keep taking care of yourself and getting support as you and your family need it. This is important when you have a child who might die. And it’s important in the moments, days, weeks, months and years after your child’s death. You might find that sometimes you want to be around other people. And other times, you need space or time alone. Feelings may come up by surprise; something might trigger set off old emotions.
Know that you did your best to love, support and take care of your child. You made their life as full as you could, even if it was short. After spending so much time focused on your child’s care, it can be hard to let go of all of that. But you can learn to live in a new way and eventually move forward.