I have two beautiful, talented, loving children. They have their own strengths and their own needs. They are different in so many ways but also share many similarities. My daughter is a typically developing, spit-fire of a preschooler.
She is bright, has a talent for math, loves to swim and I adore her and all her quirks. My son is an incredibly caring, athletic, fourth-grader. He loves science, track and field, and video games–and of course I love him like crazy too. While my daughter is typically developing, my son has multiple special needs and medical concerns that have strikingly impacted our family dynamic and household routines.
Fairness is not about things being equal but in everybody getting what they need. As much as I believe this to be true, I don’t know that my kids always see it that way.
While I love my daughter, the reality is that her brothers needs have to come before hers much of the time. While we don’t always get it right, we have come up with some creative strategies to help make sure she knows how important she is in our family.
1) Just because it’s not a vacation doesn’t mean you can’t have fun!
Our family vacations generally revolve around her brothers therapy or adaptive sporting events. We spent three weeks in NYC at a therapy camp when our daughter was a baby. She learned to crawl on the floor of a Ronald McDonald House bedroom. We spent a week in Michigan for NJDC 2011 and a week in Arizona for NJDC 2012.
We go to Ohio every year for the Ohio Wheelchair Games, (where we met Jen and Jeff Gorman from The Mobility Resource for the first time). While our trips aren’t traditional vacations, we always make it a point to enjoy our travels, to explore the locations we end up in and to make it as much like a vacation as we can. But at the end of the day, who knows where we’d take our vacation if not for my sons needs. It’s tough, but despite how busy our travels are with sports or therapy, we strive to make sure our daughter enjoys herself too. How successful we are with this remains to be seen. But I hope my little girl will have fond memories of our explorations around the country.
2) On handling homework troubles.
Homework time tends to dominate our evenings. Due to my sons special needs, it takes him in an inordinate amount of time to get it done and he generally needs someone to cheer him on throughout the hours he spends on it. Thank goodness my daughter is able to entertain herself throughout most of this ordeal. One thing we have come up with is to give her her own “homework” to keep her busy. We’ll get her coloring, working on preschool worksheets or practicing her alphabet. She’s enjoying being in the action and learning at the same time. I am able to flip between the two of them more easily when they are in the same general area.
3) Finding small ways to include a sibling can make a big difference.
My son requires infusions three times a week, for which we have to start an IV. While we have a pretty good routine nowadays, in the past there were days when we struggled to find a vein and my son would become hysterical. When my daughter was a toddler, these were very challenging times for her. She had no idea about sterility and wanted to touch everything, and she didn’t understand what we were doing. She wanted attention and would bounce around the room, including on the couch where her brother was getting his IV started. When she was around 3-years-old, we decided to make her a book about the do’s- and-donts during infusion time. We gave her jobs to do, a special seat on the couch, and ways she could help during his infusions, including tasks like getting me a bandage or gauze. It was amazing what a difference including her in the process made, both in making her feel important and in helping me maintain my composure.
4) Use resources available to your sibling.
We are very lucky that our hospital has a sibling center and whenever possible we bring our daughter to appointments so she can go. She is a regular in the sibling center and they do an amazing job of making her feel special. Sibshops are another great resource I’m excited to take advantage of when my daughter gets a little older. They are support groups for siblings of kids who have special needs and they are available in many places around the country. Many children’s hospitals also have sibling groups often run through the Child Life Department.
5) Make the most of the time you have.
For therapy visits, when my daughter was old enough to begin disrupting the sessions, we opted to wait in the waiting room together. This was an entire hour we had with just the two of us, so we made this our special time and would do crafts, read books or play together. She loved having me all to herself and I remember these times fondly as special bonding time for the two of us.
My son has attended a weekly sleep away camp for kids with bleeding disorders for the past three years. My daughter will get to attend when she’s a little bit older but for now, we celebrate girls week while he’s away. We watch princess movies and do crafts, we get pedicures and go shopping. All the girlie stuff that my son would loathe being dragged along to–we save it up and go wild! It’s our special week and while she’s excited about the prospect of going to camp, and I’m excited about the prospect of having some time to bond with my husband, I will definitely miss our girls week when the time comes.
Accept help from your spouse, parents, in-laws, friends and neighbors. There is no rule that says we have to do this on our own. I have a friend who will take my daughter out with her grandson every now and then. They go to McDonald’s or the mall to play and they have a great time. My daughter feels so special to get to go on an outing with her friend. I have other friends who cover my butt when I’m running late or stuck at an appointment, and will pick up my daughter from preschool and hang out with her until I get back. I don’t have the easiest time asking for help, but I can tell you I don’t know how I would manage without the help of my friends!
When I’m caught up working on hours of homework time, my husband will come up with a fun game for our daughter to play, or will play along with her wild schemes. If they aren’t up for that, the two of them will just snuggle with on the couch and watch a TV show that she gets to choose without big brother influencing her. When my son has to stay at the hospital, my daughter has special nights with daddy and while they wish we were home they still have a great time hanging out together because my husband goes out of his way to make these challenging times as special as he can for our daughter.
7) Be there when it counts.
While most parents can’t attend every party or field trip their kids will ever have, attending occasionally makes a big statement. Listen to your kids about upcoming events and try to pick the ones that really count. The Mother’s Day tea at school, the field trip to the museum. Whatever it is that matters to your child, be there and have a blast with them! The gift of time is incredibly powerful, and I think it’s more powerful for those of us with limited time to give.
We spent a week last winter in the hospital after my son suffered a new stroke. It was a tough week for our whole family, and my daughter was so worried about her brother and also upset because she was missing Mommy. The day he was released I was scheduled to volunteer at her preschool party. It was the only time I left the hospital during that stay, my husband and I did a trade-off and I arrived a few minutes late for the party. When my daughter, who I had barely seen for almost a week, saw me and her eyes lit up like she had a flashlight in her head, I knew I was where I needed to be. The other Mom’s were a little miffed that I wasn’t on time for the party, once I explained why I was late, the response was that I shouldn’t have come. They obviously don’t parent two special children. I wasn’t there to help them at the party (although I did of course), I was there to make sure my daughter knew that she was important to me too.
It’s not always an easy balancing act, and while we strive to keep things as fair as possible, I do wish they could be a little more equal. For the rest of you involved in this delicate balancing act, what tips do you have to make your equally special typically developing child feel important?
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