The Boroughs Family

The Boroughs Family

Sunday, July 27, 2014

Can I cancel my membership?

In the autism club, that is. Before you judge me too harshly, you really need to understand life with with the challenges of autism. I encourage you to read this post from a fellow mom of a kiddo with autism about her week:http://autismwithasideoffries.blogspot.com/2014/07/toast.html?spref=fb&m=1

I read that and cried. For her. For me, because I understand. I know the pain of watching other moms without our challenges enjoying "normal" with their kids. Sure, no one's life is perfect, but I used to be in "that club". The club where you have play dates, and your kids attend VBS, and soccer, and you can eat in a restaurant or go to the zoo. I can still go to that club sometimes. I took 2 of my younger kids to the zoo last week while their siblings were at ESY. It was fun, although I had the constant awareness of leaving by a certain time in order to make it home in time for the first ESY bus. I pulled in the driveway to find the bus waiting!

Many moms go through seasons that are challenging. The toughest thing for me right now is the reality that unlike the toddler or teen stage, a person doesn't outgrow autism. Certainly a person with autism can grow, develop, and progress. Obviously that is the hope in pursuing services, that we can manage or eliminate challenging behaviors. But autism doesn't go away, and honestly right now it's HARD.

Many of us feel the deep pain of isolation. We need community, but it's challenging to orchestrate the arrangements for it to happen. I am so thankful that several friends reached out to me this week. They made the effort, and I can't tell you how wonderful it was to connect, laugh, and share. 
I want to encourage you to reach out to a mom you may know. She's the one that slipped off the radar. She hasn't been at church in a few weeks, and maybe last time you saw her she looked a little tired and worn. Maybe you emailed, but she didn't respond. Maybe try again. Just reach out and make sure she's okay. It may be the call that gets her through the week that's going all wrong.

Friday, July 25, 2014

Surprises about Special Needs Parenting

I remember being so frightened when we pursued the adoption of our first son with Down syndrome. It felt like we were jumping out of an airplane to skydive, just hoping the parachute would open. I imagined how life was about to change drastically. Now that we are in process to adopt an 8th special needs child internationally, here are some of the things that surprised me along the way.
First, I didn't expect how "normal" our family would still be after adopting our kids with Down syndrome. Sure, we added specialists, therapies, and special education, but really we continued to do and enjoy the same things as a family that we did previously.
However, I was surprised by how much the opposite of the above would be true of parenting our children with Autism.
I did not anticipate the complexity of navigating services for our kids with more significant needs. I figured if you needed resources and they are available, you go ahead and access them. Easier said than done. The hours upon hours of phone calls, intake appointments, and still we wait.
I was caught off-guard by the "hot button" issues that draw criticism from others, including vaccinations (we do) to special diets (we don't). Everyone has an opinion, and they believe it's the correct one.
The unexpected advice and even criticism that is sometimes offered by someone who doesn't understand your child's diagnosis.  Ouch. It's challenging parenting a child with behavioral issues. Hearing how we could/should do it "better" hurts. We have many professionals involved with our child's care, and no one is more motivated to learn to help them than we are.
The unexpected social isolation that can occur, particularly when dealing with children experiencing significant behavioral challenges.
I didn't anticipate just how much I would love my kids, and how hard it would be to watch them struggle and how much we would celebrate progress and accomplishments.
I never expected how easy it would be to see my kids as individuals and not worry about them meeting certain milestones or developmental steps by a specific chronological age, but rather at their own pace.
I had no idea of the strength, ingenuity, and dedication of other parents of special kids. They will tell you they are just moms and dads who love their kids, but some of them are my heroes.
I was humbled to recognize that we can't do this journey alone. We need to partner with professionals who have the expertise and tools to help our children. We need the support of other parents traveling this road with us.
I could never have guessed how much time I would spend praying, crying, and asking the Lord for guidance and direction, because some days I just have no idea what to do or how to do it!