It's true that all children (and all of us) are fearfully and wonderfully made by God. Each of us is unique with our own set of gifts, goals, interests, and talents. But some children come to us made with a little extra dose of special. The world may label them "disabled" or "deformed" or even "special needs" but we who are blessed to love them know what they really are: made perfect in the image of a loving God.
I remember going through the list of special needs our agency sent us when we were in the process of our first adoption. We had to go down the list and check what we would be willing to accept and cross off what we would reject. It was the single hardest thing we had to do in our adoption. I agonized over that list because with each label I didn't just see a medical diagnosis... I saw the face of a child. I saw a little one who desperately needed a mommy and daddy. How could I say no?
Our first child, a son, came home to us "healthy". He was quite malnourished as a new baby but by the time we got to him he had been fattened up. When we began our second adoption we once again made it clear that we would accept any child regardless of their special needs. We had no idea how much our world was about to change.
We learned about our daughter because she went on a waiting child list. This means she had been turned down by every family who was paperwork ready with her adoption agency. All I knew was that there was a 21 day old baby girl in Ethiopia with some missing fingers and toes and some webbed digits. I didn't even see her face - I just knew she was mine. We left the agency and country we were with to whole-heartedly pursue her adoption.
The day before we boarded a plane to Ethiopia to meet our daughter we had an appointment with a speech therapist for our son, Mareto. He was a bit behind and his pediatrician thought he could use an evaluation. It was at this appointment that we learned our son might have Autism. We were reeling from this news when we got on the plane the next day. We came home without our girl and waited for her visa clearance. Two weeks before I got back on a plane to bring Arsema home we received an official diagnosis. Our son has Autism. Just like that we found ourselves with two children who need quite a bit of extra medical and home care. One we were expecting - one we were not. In a matter of three months our life got turned on its head.
Sarah asked me to share what friends and family can do to show love to families with children who need extra care. Like most of the posts in this series that's a tricky question to answer because it's different for every family. I'll do my best to share what means the most to us...
- Allow us a bit of time to grieve a new diagnosis. When we found out Mareto has autism I struggled for a number of weeks. I grieved the future I had planned for him and plans of ours that would have to change. My boy was the same boy he had always been but our future suddenly looked very different. Allow us those tears and time to accept this new life. It took me a number of weeks, but others may take longer. Don't try to tell us it's okay or share success stories during this time. Cry with us, hug us, and understand that it's a struggle. Simply saying, "I know this is hard and I'm sorry" is the best thing right after a diagnosis.
- Don't pity us. This may seem to contradict the first point, but I mean for this to come after we've moved on from the shock and accepted our new life. Once I was able to dry my tears and see Mareto's autism as the gift it is, I wanted others there with me. Now I don't want sympathy or pity -- I want others to recognize that we've been given a rare and precious gift in our children. Celebrate that with us!
- Ask about therapies and surgeries... but don't let that be the only time you talk about our kids. I love it that people take an interest and care about their extra needs. But I love it even more when friends mention how sweet and loving Mareto is or how happy and funny he is, rather than constantly talk about his autism. I adore when friends mention how happy and gorgeous Arsema is and what a lovely disposition she has, rather than just marvel over how well she compensates physically.
- Celebrate milestones with us. The other day after Bible Study our pastor's wife came up to me with a delighted look on her face and exclaimed, "He's saying Daddy!! He's using it the right way!!" Of course she knew that I knew this already but she was celebrating with me that our son finally knew our names. She knew what this meant to us.
- Educate yourself about our kids. For us, it's meant a lot when I know someone has read up on Autism and Amniotic Band Syndrome. It helps you understand our kids and why they do the things they do. It help you really know how to be a part of our life and why we parent the way we do.
- Meals brought to the house and coffee left on the porch are the best gifts for families who are constantly running to and from doctor's appointments, therapies, meetings with surgeons, and the occasional hospital stay. I can't say enough how special it is to not have to plan a meal and to get that extra boost of caffeine from a friend who understands. Sarah here has left more Starbucks and Chic Fil A surprises on my front porch than I can count and it's always makes my day brighter.
- Notes of love and encouragement go a long way. Even just a text or facebook message saying something like, "I just want you to know you're doing a great job and your kids are amazing. Thinking about you and praying for you..." Notes like that bring good tears to my eyes and fill up my love tank. They are that extra boost to get me through a tough day.
- Gift cards to restaurants are a creative way to show love. Parents of children with special needs are usually tired and desperate for a date. The demands of parenthood are multiplied by about a hundred. We don't sleep much and it's easy to have our entire marriage be just about the kids because they require so much extra. But our marriages need love and care too. Gift cards allow us to go out on a date when money is tight because of the costs involved with having children with extra needs.
- Invite us and our kids to events. I love being invited out to IHOP with my best girlfriends. I can't always go but I sure do jump on it when I can! It means the world to me when I get an invitation in the mail for Mareto to attend a friend's birthday party. We know it can be awkward and hard so the fact that others don't mind means a lot. BUT - please don't be offended when we turn invitations down. As much as I love getting invited, 99% of the time I have to say no. It's not because we don't want to, it's because we don't know what kind of day Mareto will be having and crowds/parties are just hard for him. Keep inviting us -- the day will come when we can say yes.
- Offer your time and service. This one can be tricky because everyone is different. I know many mothers who would love for someone to come clean their house once a week or help with laundry. I personally don't want that. I don't mind housework and it can be nice to have work to do that doesn't require much thought. But I do appreciate it when friend's have made a run to the store for me or offered to help in other ways. You could take their car to get inspected or the oil changed, or you could offer to do yard work (I would never turn that one down). Be creative if you need to.
- Don't be hurt if we don't take you up on offers of childcare. This is absolutely not because we don't think our kids would be safe with you. There are only a very few people I can leave my kids with and it's not because I don't trust others -- it's because I only leave the kids with the people they feel the safest and most comfortable with. For Mareto, right now, that's only three people. I know others are capable but I feel the need to follow his lead on this one.
- Pray for us. Pray often... daily if you think of it.
- Extend grace, grace, and more grace. Don't hold it against us if we forget to return your call or text... or if it takes days to respond to a facebook message. Assume the best. Assume that we are tired and busy beyond belief. Assume that our brains are maxed out on information so it's hard to remember things. Assume that we love you (because we do) and we're doing the absolute best we can.
Don't forget to enter the showing love giveaway here!