The question of how to help siblings have a life of "normalcy" within a family of special needs often comes up in conversations. I don't think I, or anyone else, have an exact answer for that, but I do have some thoughts and experiences that I found to be helpful. My mind takes this in so many directions that I need to break it into parts otherwise it looms so large I am unable to even begin!
Over the past 13 years I have come to the conclusion that some of the more practical ideas are related to the idea of potential. As parents to children with special needs we concentrate so much on THEIR potential and build much of our schedule around that. In reality, all our children have potential and need guidance and encouragement to reach theirs! As you are driving to physical therapy, and any of the other therapies, doctors appointments, and consultations you are probably hearing a nagging voice in your head pondering if your other children are feeling neglected. Be assured that voice is nagging in their minds as well and it is probably even louder. Time is always overdrawn in our lives but if you are truly concerned about your other children, you are going to have to get creative and deal with it.
Some ways we worked on it in our home was to be sure to sign them up for things that spoke to their own interests: Saturday morning art lessons, jewelry making and crafting, afternoon ballet down the street during nap time, swim team, music lessons given in our own home and so on. We may not have always been on time and I may not have made it to every meet but we did it. If money is holding you back, make the wishes known for birthday and Christmas gifts. More than once they received "lessons" with a little kit of some sort to represent the topic for their gift. Friends and family are often happy to have ideas for gift certificates to purchase...pottery painting, chef classes, community soccer, and even a certificate that they will be the person taking them to the lessons if you are so blessed!
When the twins were quite small we went every 6 months for Botox shots in their legs. Fourteen shots a piece. It made for a long and stressful day at our hospital of choice, an hour away on a good traffic day. One such day stands out particularly in my mind. I had been concerned with getting home in time to be there when the older girls got off their bus. I was so pleased to have made it and felt like quite the successful super mom. That was until my eldest strolled up the drive, looking several years older than her actual age, and gleefully shared that the oldest boys in the middle school had invited her to eat at their lunch table. In that moment I had the thought "if we don't give the kids attention, they will find someone else who will" and it gave me chills. Date nights were introduced, with one parent or the other, soon after.
Honestly, it is hard enough for us to make dates as parents, so the undertaking of dates with our girls was not made lightly. We decided it would be one girl each week (so every other week for them) and with alternating parents (every other week for us,too!). It was after dinner and just for a bit before bed. It was mostly something that did not cost money, the emphasis was to be on time together and an opportunity to share thoughts uninterrupted and in private. Hot cocoa and the bookstore was a favorite destination. I don't remember when they started being phased out, apparently we just started outgrowing them, but we still enjoy one on one time. Even now their dad comments that he enjoys days they work part time in his office and they have the ride home to talk together.
One of MY favorite memories of time with just the siblings was after a lengthy hospital time when the twins were small and I just craved reconnecting with the other girls. Dear husband agreed to handling bedtime on his own and I spontaneously had the other two pack an overnight bag and made a reservation for a hotel 45 minutes away. We spent the night swimming, working on their scrapbook pages, and just cuddling in one bed watching hours of the Disney channel. It was like our own little secret hideout. The next day we hit McDonalds and bowled a game or two and headed for home. I remember feeling bonded once again. It was heavenly! I am certain I had a little sick pit in my stomach for being away from the twins, but they were in good hands, I was close, and I am confident they have NO memory of me missing! Another year or so later my husband decided they should not be denied the experience of camping, or more specifically, tenting. My camping experience bucket was all filled up and I had no desire to try to camp with the twins, not to mention their G-tube feedings, so I willingly stayed at home. I admit to feeling a bit overwhelmed when they drove off and I was home alone, but I managed to find family to hang out with and we coped just fine. I knew when they called later that night, during a storm of record producing lightening strikes, that they were in the midst of creating some memories never to be forgotten! Believe it or not, they never regretted the experience, and so it is probably better they did that without me!
A few years ago we began to include the "siblings" on an annual business trip my husband makes. It is usually someplace warm and sunny. This always begins with much anxiety for all of us, including the girls who are going with us, as we feel the twins will feel left out. While I am sure they would enjoy the trip, it would be very complicated and I have found it offers the older girls an opportunity for some much deserved respite. Let's not pretend that the siblings don't become secondary mommas for us, they do! I think it is important that we acknowledge the time and effort they contribute to the family. I like this time away with them to take in new places, eat new foods at a leisurely pace, and watch their own sisterly relationship grow as they have time away as just the two sisters! They need the extra sleep and the opportunity to read a book as much as I do! We are all very anxious to arrive back home and reunite, and I usually make sure we have something very special planned for ALL of us together the following weekend.
Sometimes it is just impossible to leave the other child/children and spend time with the siblings. This is where I have come to realize that I have to allow others that I love and trust to help me. It didn't happen overnight. (find part of that journey HERE) But when you allow yourself to stay open you start to hear that people are just seeking ways to be included in your journey. We had one family in a church who asked how to help. I didn't have anything I could think of for the twins, but I did tell them that I was feeling like my daughters' world had suddenly gotten so much smaller with our needing to stay home so much more. I asked if they would feel like they could ever include them with activities to get them out and about again. They LOVED the idea and jumped into it whole-heartedly! I sometimes felt a bit envious of the "field trips" they were on, but I knew it was a blessing for all of us. When at all possible, invite others in: for talking, outings, and to "cheer them on" in their own goals, not just their siblings. It's why we are all here together, as a community.
I am certain that there are plenty of things we didn't accomplish and wish we had. I continue to pray for positive family relationships so we can always add new memories and experiences together as they discover their potentials and find God's purposes for their own lives. As the girls have become more independent and grown it is clearer to me that while some days go slowly, the years always seem to go by fast! Sometimes I feel like raising children is a constant re-balance of making them know that they are important and valuable but not the center of the universe. It can be a tricky line to navigate. I found that attitudes usually reflect if we are leaning too far one way or another. We all need to see that our journey is just one way of travelling through this world. In Part 2 of this post I will share some ways we incorporated serving others into our family values to help the children to see how each person is faced with a different set of challenges.
Let me gather my thoughts...this could take a bit!