Life with Special Needs: The Costs and Rewards

When we started our adoption process back in 2010, our first homestudy had very tight parameters for what type of child we wanted. Basically, we said "as young as possible, as healthy as possible." Over time, we ended up moving to Alabama, completing a second homestudy, and finally receiving our referral for little Biruk (Israel) who was a 'healthy' 7 week old baby. If you've been reading a while, you've seen how our story has progressed and that Israel has some developmental challenges.

We anticipated that having children would be expensive (and as parents of two kids- we can attest that yes, it is). We anticipated doctor visits, clothing and toy purchases, another mouth to feed and gadgets to buy. We are happy to make room in our budget for all of these things, and as any momma will agree- it is much more fun to buy little baby shoes than adult shoes anyday. I love spoiling our kids and meeting their needs.

Here are a few extra costs of having kids with special needs (not specific to Israel necessarily, I believe other SN mamas will affirm this!).

1. Copays. You're at the doctor a lot more. Seeing specialists means an increased copay. Sometimes your insurance doesn't cover the tests that a doctor prescribed and you have to pay very expensive lab fees.

2. Busy schedule. Therapies, IEP planning meetings with social workers/doctors/therapists, drives to other cities for appointments, doctor appointments, phone calls with insurance and doctors that last up to an hour per call!

3. Emotions/Stress. There are the emotions that come with anticipating a diagnosis, receiving a diagnosis, learning about a diagnosis, advocating for your child, hoping for your child, working with your child, etc. Thinking about the future can be emotional. There are good emotions and hard ones- hope, joy, celebrations, disappointments, and anger. Not everyone is rooting for your child to succeed, and sometimes kids or adults can be hurtful or insensitive.

4. Thick Skin. There's a lot about special needs that toughens a parent up. You have to be brave when your kid is scared or hurting. You have to hold your child down for blood to be drawn. You have to educate others and spend hours on the phone or in meetings trying to make other people realize how special your child is and why he/she is worth the investment of services or equipment.

5. Loneliness. I am so, so thankful for an online network of special needs mamas. Recently I was at an event for our local Cerebral Palsy center, and it was refreshing to talk to another mom who "got it." Having a SN kid means that you can't always go to normal outings. You have to know your exit before you make an entrance. Your friends and your child's peers need to have compassion and understanding when your SN kid is different... and that community isn't always readily available. Sometimes you just need validation that you're doing your best and that others love your child the way he/she is. That can be hard when your child isn't in the same developmental stage as peers.

So, we've discussed the cost. What are some of the perks?

1. Hope. You get to be a professional hoper. You have to dream big and pray boldly for progress and a future.

2. Compassion. There's always someone who has it worse. You can be an encourager to those who need it. I think about our own insurance battles and they seem like nothing compared to some other people. (My friend lost her baby and she still had to pay ridiculous hospital fees- without her daughter to hold as a reward. It just isn't fair.) Although your child may not have a specific diagnosis that another child has, you can relate to other parents and families who have challenges. You can support each other and empathize. Additionally, your other children will gain compassion for kids who have challenges.

3. Milestones. You don't take for granted any milestone. Socially, physically, developmentally. Your child calls you mom? That may be the biggest gift that you never expected (a new friend recently told me that about her daughter with autism). Your child picks up food and eats it? Maybe you thought your child would never eat normal food, or that you would spoon feed for much longer. Each little step (literal or metaphorical) can be celebrated with gratefulness as a means of grace. You never resent progress because it inconveniences you. Your child is getting into things and making messes? Praise God that he/she can move and is interested in toys!

When you are asked "is there anything you would change about your situation?" I think it would be a lie for me to say that I wouldn't change anything about our story. If I could wake up tomorrow and we never had to see another specialist, therapist, or doctor, and all of our issues were healed- that would be awesome. But I will say that God's grace has been evident to us throughout the last few years, and we are counting on it to be present in the future.