Guest Blogging

My friend, Martin Elfert, has a weekly spiritual advice column over at Spokane Faith and Values. His recent advice-seeker was a father of a special needs child, and Martin asked me to guest-blog. Justin and I are juggling an attention-seeking Fiona and a nursing-challenged newborn Petra, but I was compelled by this father’s letter. The father writes:

Ever since I had a child with special needs, I’ve had difficulty accepting it. I do feel, however, that I’ve reached a place of peace in living with a dilemma that has no solution, a problem that cannot be fixed. But I’ve retreated into myself because it’s too difficult to open up with others, either family or friends…. Opening up to God brings comfort, as does knowing God is with me. So why do I still feel so alone?

So in between nursing and baby-bouncing and napping and nursing, and often while holding the littlest Lanier, I chewed on and replied to the father’s letter. You can read the reply here. I hope the dad and other parents find some use in these words.

Onward! (And yes, I’m totally pumping milk while I upload this blog post.)

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2 thoughts on “Guest Blogging

  1. Love, above all, love. The concerns, questions and feelings you and others who have commented about their children with differences are typical, while your children are not…REJOICE! There are so many different people in the world and “average”, “regular”, and “typical” are merely ways to categorize and classify them for medical and educational establishments. It allows the ease of finding commonalities, THAT’S IT! Your family structure are yours to create…as with any combination of children and everyone’s unique needs and personalities.
    As a high school Special Educator, I can tell you that I pour through the educational files of incoming 9th grade students before I meet them…and then I don’t look at it again until after I get to know them. I need to see first hand, students’ strengths, weaknesses, and the things that make them unique. That isn’t always written down, but that’s what makes them thrive or struggle. I’ve seen on paper a student with a low IQ who looks like he would struggle with absolutely everything, but when I met him, I found a child who was empowered with perseverance, and pushed to be the best he can be. HE thrives! Contrarily, I’ve read a file thick with the worry of a parent so concerned about every tiny bump in the road through the teenage years, that the student had no self-confidence or ability to speak for herself. Despite having a much higher IQ than the first student mentioned, this student only connected with adults and never had peers as friends. She rode the “SPED” bus with students who had significant and multiple disabilities, even though she did not and could easily have ridden the regular bus. And she traveled the halls of school with her head down, with genuine fear of associating with communicating with peers.
    The difference between these students was the acceptance and confidence of their parents. It makes all the difference for any child, but especially those with disabilities. The best you can do is to allow your children freedom to learn and grow from mistakes, rather than cushioning every fall. Push them to listen to whatever music strikes their fancy, but only after you’ve exposed them ALL the options available to all teens. I’ve seen too many teens with disabilities who segregate themselves from peers by only listening to kiddie music because a parent thinks it’s nicer than pop or rock. You buy their clothes, so look around and dress them like every other teen, even if it’s easier for you to not have to teach them how to button skinny jeans, or tie shoelaces or zip up a hoodie. Don’t shield them from, say, singing in the chorus because they aren’t good singers…SO WHAT?!
    You can assure your child the best future by encouraging her self-acceptance and helping facilitate as much integration into the mainstream world as possible. Show her how to be the best she can be, by embracing, even celebrating, all that makes us each different while jumping into age-typical activities with both feet. I still see that student around whose Mom shielded her despite a relatively minor disability. She is probably in her late 20s and the last time I saw her at the mall, she was with her Mother (as usual) and they were wearing matching cartoon character sweatshirts.

  2. I am the Mother of a little gal who I think is days younger than Fiona. My daughter Ryan was born with TEF/EA, Pyloric Stenosis and a few other birth defects. She spent four months in the NICU and has been hospitalized numerous times since. Right before her second birthday we found out that she has brain damage, A-Typical Absence Seizures and Cortical Dysplasia. I have been having a very hard time accepting things, loving her and mourning my plans for her at the same time. Taking care of my lovely girl and yet fearing the future daughter that Doctor’s keep telling me to expect. It’s been very tough and I have found comfort in your writing. Thank you for being so honest and eloquent.

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