Dealing with Family and friends and your special needs child… Remember they hurt too
When I first learned about my son”s heart condition, all my family and friends called me at the hospital and I could not talk to anyone. I just could not hear the pain in their voices.
I needed time alone to take all this in and sort it out.
When it was inevitable that Marcus would come home with a tracheotomy and a ventilator (due to complications from his hearts surgery) although I was devastated, I forced myself to come to terms with it so I could bring my baby home.
I can only imagine the despair my whole family experienced.
It was not just Marcus, his father and I who experienced a life change.
This affected everyone we knew in some way.
There are a few things you will need work through in regards to your family and friends and your special needs child.
1. Try not to take it personally if they do not make themselves available for you. This may be too painful for them to get too close right away. They need time as well to work through their grief. They may not have the advantage that you do by being with your child everyday. This helps you a lot in coming to terms with your child”s medical problems.
You are talking to doctors, watching your child go through procedures. This lack
of constant exposure will not prepare them for the reality that you face day in and day out. Give them time.
2. When they ask you if there is anything, they can do, tell them. At this point, they may feel helpless and are not sure how they can help. Let them know if they can feed your dog, or bring you some groceries while they are at the store. Maybe something as small as baby-sitting your child”s sibling for a while so you can spend some time with your special
needs child or take a nap would help. There are many sleepless nights in your future. You are going to need all the rest you can get. In addition, this will help them feel good about helping you.
3. Accept their limitations. I remember how difficult it was for me when planning Marcus” discharge. We could not find anyone who could commit to learning Marcus” Trach care. Understandably, so, I was terrified during the first part of my training as well.
4. Once you are settled at home and more comfortable with the new living
arrangements, make it a point to have people over. This will aid in desensitizing those you know, to the difference in your lives now. The
more often they see you handling your child, hearing the alarms, the
easier it will be to deal with.
5. Depending on the size of your child, if possible encourage your family and friends to hold your child. This will also help in making this a smooth transition and I am sure your child will enjoy all the extra attention.
6. Show your gratitude by thanking them for their support and help however small the gesture is. As your family and friends feel more comfortable, who knows one day they may feel confident enough one day to watch your child so you and your husband can get a break for a couple of hours.
As time passes and you become more comfortable in your new role, it can help your family members and friends reach a comfort level where they can offer more support. My family still does not know my son”s medical care.
However, when he is hospitalized they are more than willing to go and sit in with him so he is not alone. This way, I can spend time with my daughter.
The most important thing you can do is continually expose your child to your family in gatherings and outings to ensure bonding between them and a little help for you.
Dealing with your family and friends in regards to your special needs child can be a challenge. They will not know what you are going through but at the same time they wlll feel many of the same emotions you experience at time because your special needs child is a part of their family as well.
