Special Needs Parenting: Sissys Need Not Apply!

So many thoughts going through my mind this morning. So many thought provoking blog posts, Facebook links, and songs to fuel those thoughts. It seems like a good time to sit down and type up something that could result in a blog post of my own.

A couple of things happened lately that were not necessarily huge but have impacted my heart and mind. On Friday, as I was sitting at the therapy clinic during Alyssa’s OT and Marni’s speech therapy sessions, I chatted with a mom of two beautiful special needs children. Our conversation led to her sharing about a social support group of other special needs families that she had brought together a few years ago but one thing she mentioned seems to have stuck me pretty hard. She was talking about places the group has met before with the kids and how it was not kid friendly so they meet in parks and so forth now. However, beyond the ‘not being kid friendly,’ she mentioned the stares from people that don’t understand why a kid is stimming or yelling. We talked about the comfort of being around people that “get it” and accept it. The thing is we weren’t necessarily talking about the little kid, and for the first time it really hit me; someday my babies won’t be so little or so cute to other people and the stares will likely burn right through us. Already we experience changes in facial expressions when people (and no, not all people) learn that my 2 nonverbal daughters are 6 and 7. Oh just wait, this summer they will be 7 and 8!

It’s not so much that I care what other people think, particularly those that could be considered ignorant or rude but I still don’t look forward to those days at all. I mean, we may be experiencing more of that already than I’m aware but generally I am so enthralled in the adorableness that is my children, I probably just assume they are staring because they are just too cute…and yes, I know for sure some really are.

So my children’s uniqueness and/or challenges in communicating, my daughter’s difference in her walk (we do expect she will walk), the times where she continues to need a wheelchair but is not the adorable little girl she is now, and some of my children’s behavior, as I don’t expect it will become typical any time soon, makes me concerned they will be targets for criticism, exclusions, and harsh stares. It’s not that I’m spending my days worried about it, heck, Jesus could return before then J but Friday’s conversation did spark an uncomfortable concern which I believe affected the little things that followed.

See on Friday night we got a last minute invite to a birthday party. It is not exactly clear why my children were initially excluded but it apparently was pointed out and there was an attempt to correct the situation. Unfortunately, I almost wish we never got the call because honestly I probably wouldn’t have even known the party took place and would not have felt hurt. I don’t care to go into the details about it here; I seriously hold no hard feelings against the mom doing the inviting (I don’t think she intended to be hurtful), but at the same time it hurt. I hurt for my girls…and Friday’s conversation fueled the pain; it’s likely only to become a more frequent occurrence as the girls’ age.

Then this morning while I was getting my 3 littles ready for the school bus, 2 things happened that those online posts seemed to shine a brighter light on them.

The first was my frustration with Marni. Every morning she is more than a handful. She wakes up ready to go! She is hollering before she is even out of bed, and literally hits the ground running!! I love her to the point that it feels like my heart could burst, there is seriously no lack of love for her. I wouldn’t go back and do anything differently. I am INCREDIBLY grateful and SO SO SO SOOOO blessed to have her as a daughter but that doesn’t change the fact that it takes a LOT of work sometimes…not ALL the time (thank you, Jesus) but at certain times.

Marni is super smart! She really is! It’s hard to believe she has only been home from Ukraine for 2 years. She probably knows 200 signs in ASL, has at least 30 sight words down, and understands just about everything…she understands more than she wants people to know she does because she is so smart she knows how to manipulate. She is sweet and incredibly loving, and sooooo funny. I do adore her. However, she is a whirlwind! She has major hyperactivity issues that we are still trying to work out. She has medication but it’s not great and in the mornings she is all lit up and ready to go!

Anyway, mornings are hard because we are up by 5:45 to be ready for the 6:30 bus (please don’t suggest we get up earlier). Marni can totally dress herself with minimal assistance but she is so hyper, so distracted, and so wants to be all up in everyone else’s business, that getting her ready while helping the other girls as well, is complicated and so frustrating. So this morning when I started to get frustrated the thought came to me, “Why do you get frustrated with her every morning like this is a surprise or something?” Good question, right? It’s no surprise. I know what to expect. So why do I let it make me crazy every morning when I should already have accepted and expect for things to be that way?

After the girls were off to school, I sat down with my coffee to check out the latest with friends on Facebook. One mom posted a music video about loving your special needs child; basically it is about doing the hard work because you love and care for your child. I thought about each one of my little girls. It moved me to tears. It was the great encouragement I needed this morning. While each moment is not glamorous or met with smiles (that would be me I am referring to), the love I feel for these girls is so worth all the time and energy in caring for them. I feel so incredibly blessed that I welcome MORE special needs children to our family; I know I am not done yet…though I prefer to think about only taking in one more at a time right now. J
(song referred to "Your Child")

Next I read a blog post about walking in our child’s shoes. The post was about a family who has a daughter with Cerebral Palsy. She shared about how things that she says or ways that she responds may wrongly be interpreted by her child that she is angry with her daughter for having Cerebral Palsy…and I thought about a moment with Nadia this morning. As usual, Marni’s antics were causing us to fall further and further behind schedule. By the time I got Nadia dressed, put her therapy straps, braces and shoes on, and was ready to walk her to the sink so she can brush her teeth, I was clearly frazzled. I really needed her to just brush her teeth and not play in the sink like I know she is always so tempted to do. She hadn’t done anything wrong, we were still on our way to the sink when I was telling her how I needed her to stay focused, brush her teeth, and not play in the sink this morning. Obviously the rushed way I said it made her think I was mad at her and she asked, “Why are you yelling at me?” I definitely was not yelling but had rushed what I was saying. Meanwhile her walking was slowed because she was trying to focus on getting her words out, and focusing on moving her legs also takes a lot of work. Though I tried to explain that I was not yelling, I got annoyed that she wasn’t moving very fast and barked at her. She was okay, it wasn’t a huge thing but what a burden on my heart now looking back. How must it feel being trapped in that body? She is constantly uncomfortable in her body then we put braces on her feet, straps all up her legs, push her to be stretched and strengthened in physical therapy and at home, she has to sleep in a particular position at night with knee immobilizers that go from her thighs to her ankles to keep her legs straight, with braces on her feet, and those same straps all up her legs and around her waist to rotate her hips and legs out to proper positioning…and then I am on her case about how she is using her body whether she is walking too slow, sitting in a position that will cause further damage to her hip sockets, or crouching at the sink which reinforces improper positioning while standing and will further delay her ability to walk independently, etc. Ugh!! My heart aches for her this morning!
(blog post reffered to Walking in Her Shoes )

That blog post about walking in her shoes could also be applied to Marni and Alyssa. The difficulties they face day after day, at every moment with bodies with such low tone that they struggle to even stay balanced or to pull socks over their feet. They are limited in what they can communicate and nearly everyone takes that for granted…they can’t argue their point, defend their actions, explain what happened in the situation where there was a disagreement with another child who is verbal. Alyssa is incredibly smart too but like an infant she doesn’t even indicate what part of her body hurts if she is injured; we have to inspect every inch and sometimes we never find the pain. One day, recently, it took half the day before I figured out why she was crying earlier that morning; she had obviously stubbed her toe and nearly ripped off her toenail that now had dried blood all around it. And Marni with her hyperactivity! I understand that so much about behavior is a choice but if the thoughts in her head are bouncing from one thing to the other, it’s got to be nearly impossible to focus on the task at hand…and she gets in trouble for it…basically gets in trouble for not making her brain do something she can’t. L

My heart aches. Will I sit here and beat myself up over it? Probably for a little while, if I’m going to be honest. But I know God gives me grace, as do my children. I pray that I will learn big lessons and make big changes. I wish, however, it were as easy to do as writing that sentence but I know it is not.

And as a friend’s blog post this morning made me realize just because I admit that it really is hard at times, does not mean I would change my family for anything in the world, but other people may not understand that. Just because my challenges are different than those I experience raising my “typical” kids or my homegrown child when he was younger (and we did have learning disabilities & ADHD obstacles FOR SURE!), does not mean that I have more than I can stand. As other moms who have also chosen to adopt multiple special needs children can attest, there is this fear of admitting to how much work (and frustration at times) comes from raising these kids; the fear is that people with talk, judge, and assume we are in over our heads, that there was some mistake made to adopting one or all of them, or that we would be insane to adopt any more. I can’t control what people think and I would love to say that I don’t care at all but there is a small part of me that does care. Why? Because we need the loving support of family and friends around us. We deeply appreciate the encouragement to keep on keeping on when it comes to going the extra mile to FULLY care for and make the true efforts to meet the needs of our special needs children (giving them the additional love, care, encouragement, assistance & acceptance they need, taking them to all the therapies & doctors appointments, and doing the additional therapies & tutoring at home), as well as, sharing in the excitement with us when God calls us to step out in faith and adopt another. (blog post refered to When Gods Gifts Look Like Limitations PART TWO )

I love my kids and could not be more grateful to have answered His call…but the calling doesn’t stop there. So much to process and pray about!