Thursday, June 19, 2014

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.

Tuesday, June 17, 2014

Notes of Encouragement (Your participation needed!)

I posted on facebook last week an update that Israel had taken 23 steps during physical therapy that day. I was overwhelmed by the large number of people who commented and "liked" the status. The thing about facebook is that you can lose real-time connections with friends that you once were close with. People I knew from middle school, college, adoption conferences and camp were rooting for Israel. I was blown away that so many people have taken an interest in Israel's progress.

Then, today I posted a short (15 second) Instagram video of Israel walking out of therapy with his walker. After just a few hours, there were many likes and comments. Again, people I felt disconnected with after many years were rooting for him.

So that made me think- I wonder how far-reaching this boy's story is going? How many people are touched by Israel's perseverance and also hoping with us for his future?

So, I'm taking on a little project. If you are rooting for Israel, through prayer and hope; if Israel's story has touched you (either encouraging you to adopt or consider larger parameters), if his story of perseverance has challenged you, etc., would you let us know? You can be a complete stranger, a random person we knew once, or a dear friend. I would love to make a keepsake for him to show how many lives he has touched in his short life, and how many people hoped big things for him.

 I would like to make a book (and possibly a video?) for him and include little notes (1 or sentences- ish or less!) from anyone who has invested in his story - either how he has encouraged you or a note of encouragement for him ("Go, buddy!" etc). You can include a picture of yourself/your family if you want, or you can just put your name. It would be helpful if you included where you live. Email it to with the subject line: Encouragement for Israel. I will be working on this project for the next few weeks, but would love it if you can submit your info by July 1. So go ahead email your: name, location, picture and a brief message! Thanks so much!

Friday, June 13, 2014

Edith: Ten Months Old

Dear Edie,

Sweet girl, you are 10 months old! You are growing so much these days. You're starting to wear 12 month clothes and you just look like a big girl now, not a baby. You believe that you are a big girl too. No more babyfood for you- you want to self-feed and do things yourself. You love crackers and table food, especially soft carrots. You still haven't figured out your sippy cup but you love to bang it on your high chair. When you're not particularly hungry you will drop cheerios or whatever food is on your plate off the chair onto the floor. It's not as funny as you think it is! We're still nursing several times a day but I'm starting to put my foot down that you do not need to eat in the middle of the night anymore! For the most part you sleep through the night but there are still nights where you cry for me. I'm hoping you become a better sleeper soon!

You still have only two bottom teeth, but you're always gnawing on toys and drooling so I'm sure there are more coming soon! You had a double ear infection this month so you were on an antibiotic again. Even with a double ear infection, you were a happy girl. You really are a delight- you love to smile and talk. You also love snuggling, and when you're not busy you will let us hold you, especially when you're tired.

We have nicknamed you "Edie the Adventurer" because no obstacle is too big for you. You are pulling up to stand, crawling on your hands and knees and transitioning out of sitting easily. You amaze me. You want to climb and find any thing that might interest you. Baby gates are no match for you! You have gained quite the collection of bruises over the last few weeks from falling or banging. You see challenges as opportunities, and I hope this is a trait that you always have. I can't wait to see your personality shape and hope that your adventurous spirit is one that honors God always. You and your brother are the "dynamic duo" and you love to play together and scoot around the house as a pair. I hope you will always be best buddies and that you will look out for each other.

We've had a few days this month where its been just me & you while your brother is at school. I love that time but I notice that you're always looking for Israel. I know you miss your best friend! When he's missing, you are very needy and demand that I sit with you while you play. You're still in daycare one day per week and you are doing great there. You're still a Diva Princess at times, but you enjoy playing with other kids and you go to other adults pretty easily.

Your favorite toys are anything with noise, your baby doll, the piano and balls. You would not survive without your Wubbanub pacis. You say "bah" to your baby and balls, so maybe that counts as words? You still wave when people say hi to you and you are saying mama. You love the pool and want to dive out of your float into the deep end. You love the attention that the big kids give you at the pool, and you will crawl in the direction of the deeper water so we have to keep a close eye on you!

All in all, you are a precious, happy girl. You are easy going and full of smiles and giggles. I'm so thankful for you and the joy and delight you bring us.

Love, Mama

Friday, June 6, 2014

Life with Special Needs - the Challenges

One of the more vulnerable posts I've written about Israel was this one about his equipment and how I dealt with how Israel was viewed by others. 

I wish I could say that Israel's progress recently has been "enough" for my heart. I honestly have to continually remind myself that God is sovereign and His plan and purpose for Israel is much bigger than mine. The truth is, having a child with special needs means that we are continually being a part of a story - it isn't over yet and we don't know what life will look like in the future. 

Being Israel's mom means that I am his advocate. I have to be the one to fight for the services and resources that he needs. I also can't give up on him. We have to be intentional about doing the exercises he needs, even if that means I'm getting hit in the face while we do them. Israel needs weekly therapy that requires time and finances and shifting Edith's nap schedule. Right now we are working with his early intervention team to plan for when he ages out of EI services and switches to the school system at age 3. I can't believe that I sat in a meeting to enroll my child in special education. It was surreal and humbling. I ache for Israel's future and hope that he is developmentally "normal" one day. I don't want him to be made fun of by his peers. I fear for the day that he sees that he has challenges and that he is different. 

I love, love, love Israel's school. He attends the cerebral palsy center daycare, and the teachers are attentive and trained to work with kids like him. Several times I've gone to pick Israel up from school and all of the kids are on the playground - and Israel is sitting in a chair watching them play. He can't swing or run or play on the monkey bars. He's just sitting there. (I've also come to pick him up and seen the teachers playing with him, and I know that they stand him up with toys out there too- I am not complaining about the care he gets there! I just know there are times where Israel's limitations leave him out of what his peers are doing). He also gets upset by extreme temperatures, so ice cream or Popsicles are not good for him. When all the kids line up for Popsicles, Israel doesn't want one. It's just another example of him being different- and as a mom that hurts sometimes. 

Not having Israel's medical history and family history has proved to be complicated for us. Israel has had repeated medical issues that require bloodwork and x-rays and seeing specialists in various cities. This sweet boy has seen more waiting rooms and been held down for blood draws more than a toddler should. There are many times that I wish they could just take my blood instead of his. 

Israel's adoption and our agreement with our adoption agency requires that we parent differently than others. We can't just spank Israel when he disobeys- we have to be creative in our discipline and try to uncover what the root issues is when he is upset. Things are never simple. 

We've also got to deal with equipment. I'm counting the days until his new fancy walker comes in. I'm hoping that Israel will feel secure with this walker and that he will take steps independently in it within the year. We also ordered a stroller system that is regulated for travel so it can be strapped to a school bus. If Israel isn't walking by the time he starts school, then he will need a mobility device because the teachers will not carry him. I pray so hard that he will be walking by then and will not need a wheelchair or mobility device. It makes me tear up thinking about it! I am so hopeful that he will be able to walk. 

It is hard to project what our future is. We always ask the neurologists and doctors what they think- but only time will tell. We have no idea of knowing when we will get more words out of him or when he will catch up. I pray that he does. But it is also a reality that he may live with us for a long time, and he may need programs as an adult to function in society and he may not go to college. We have to dream big for our boy, but we also have to think about his needs when we plan for our future. When we signed up to adopt 5 years ago, we had no idea that we would be saying yes to an uncertain future and a lifetime role of advocacy and professional hopers. But we would gladly do it again. 

I cannot express enough what a privilege it is to be Israel's mom. I wouldn't trade him for any other child in the world. It is not always easy to parent him, but it is a gift to love him. He is so precious and I cannot look at him or think about him and not see the grace of God. Israel is a reminder of God's faithfulness to us. Israel is a picture of God's works being displayed. Israel is a scooting miracle and he bears witness to the earthly redemption of brokenness. I am honored to be his mom in challenging times and in the easy moments. 

Thursday, June 5, 2014

Summertime at Last (random musings)

Summertime and the living is easy! Here is a jumbled rambling of my brain:

I've neglected this online space because we are still figuring out summer and my role as SAHM again. I have many things I want to document here but can't motivate myself. It's crazy that it is already June! The kids are both busy on the move around the house, and I have still been playing catch-up from a year of neglect on household chores. I'm also doing some very part-time contract work, and that has kept me busy this week.

I am excited to figure out what our new normal is, being done with school and having two active little ones. I need to make myself study for the social work license exam but I haven't studied one thing or taken one practice test yet. Instead of studying, I checked out 2 library books and started a 1000 piece puzzle last week. Priorities, people.

Our days have been filled with rotating from one play area to the next in our house, going to the pool, playing on the water table on the front porch, and taking walks. I've been heavily relying on our college students to hang out with me and the kids! I recently put up baby gates in a few places around the house because Edith is pulling up and the kids like to get stuck in places, or find leftover crumbs from who knows when. They take the baby gates very personally and are beyond angry that I have infringed on their freedom. The kids have had many doctor visits lately and I feel like I'm always packing a diaper bag that is 90% entertainment, 5% food and 5% diapers. We're keeping the puffs industry in business.

Will is taking a week-long trip to NYC with our college students on a mission trip soon, and I am going to take the kids down to Opelika to see family. Although I dread the travel and the kids' confusion from broken routines, it sure will be nice to have backup with grandparents! We regularly facetime with grandparents because it helps calm the kids down and break up the day. Thank the Lord for technology!

 I'm setting a few goals for myself this summer: study for the MSW license (ugh), have a yard sale and clean out the garage, do a few updates around the house, sew something, read a few books, and make weekly meal plans to cook healthy meals for my family.

What are you up to this summer? Any goals? Any big plans? How do you make it through the day with your kiddos?
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