Autism Awareness Month (April) has been especially trying this year. At the beginning of the month, we had Joy Baby's 18 month check up, during which it was determined she needed to be evaluated for autism. I decided not to say anything about this, because sometimes it seems talking about a "potential issue" causes a bit more chaos than intended. As I started the inquiries to find a doctor for her, we quickly learned our insurance company would not cover any evaluation for her, and the insurance company is protected from prosecution because they are based out of the State for us. Another issue we have is that since our older two boys are receiving in-home therapy, a lot of other companies will not evaluate another child, since they would not be able to provide the in-home therapy upon diagnosis. (Typically, two different ABA companies will not provide therapy in the same home at the same time...either due to liability or programming rules.)
About two weeks ago, I found a doctor who would be willing to evaluate Joy Baby. She was out-of-network, expensive, and a good distance away, but she had an opening, was willing to evaluate, and we have few options. I had a few concerns with her, but Richard was willing, so I set the appointment. A week later, I decided to try one more company. They were fairly sure they were also out-of-network, but were willing to work with us. Early Monday morning, I received a phone call that set a different series of events rolling. This company was still not in-network for our insurance, but they charged significantly less, were 45 minutes closer, and had just had a cancellation, so they had an opening Tuesday afternoon. They emailed me 27 pages of documentation I had to fill out, and told us they would see us the next day. The roller coaster ride of emotions I went through in a 24 hour period was intense. Every fear, worry, doubt, and painful memory surfaced. Along with those emotions is the torture of filling out paperwork that describes the many struggles your precious child has...in great detail. Since the evaluation is only around two hours, a lot rides on the testimony of the parents. For four hours, I had to focus on all the "bad." One question out of 27 pages asked about the positive traits of our child, and what makes them "likeable." For whatever reason, this was the question that caused my tears to flow. All I could answer was that I loved her. I wanted to know why she struggles...autism or not, I needed help to help her, because when her smile fades, she is hurting, and its painful for everyone around.
Tuesday morning, I was awakened at 4am, and the worry began. A still-small Voice whispered, "I've got this" a quiet hug to go back to sleep. The first song to play on my running playlist was, "Call it Grace" by Unspoken. If you've ever tried to run while crying...it's ugly...and really hard to breath! Within a few hours, two times God let me know how much He loves me and her. He wasn't absent, or surprised, and had divinely ordained for Chara to be ours, and for the series of events to take place. I'm not saying I was super calm and didn't worry for the rest of the day...I kinda did...but His rescue was there. At the end of our two hour appointment, we learned that we were a family who has three kiddos with autism. By God's grace, Richard was able to get off of work the entire day. We celebrated being a family with tacos and a movie. We didn't talk about the day, we just ate and watched a silly movie. It was a little more difficult for me to laugh, and a lot more difficult for me to not get frustrated with squabbles between the kids. There was sin, and there was a plethora of Grace.
Now begins a six-month period of paperwork with the government. We will have home visits, evaluations, and a lot of hurry up and wait. If everything goes as it should, at the end of the six months, Chara will have disability funding to pay for her in-home therapy. She will continue receiving speech through Birth to Three, since she doesn't talk, but that is a separate program.
A former pastor of ours often said, "If God brings you to it, He will bring you through it." I'm so glad this is true, because facing this on my own would be incredibly overwhelming. One of my most favorite songs right now is "Trust in You," by Lauren Daigle. I'll close with the chorus, which is what my heart's cry has been:
When You don't move the mountains, I wanted You to move,
When You don't part the waters, I wish I could walk through,
When You don't give the answers, as I cry out to You,
I will trust,
I will trust,
I will trust in You.
Wednesday, April 20, 2016
Tuesday, April 5, 2016
April
April is Autism Awareness month. In case you didn't notice, that's why there are a few extra blue lightbulbs at entryways. Facebook has a few extra photos of puzzle pieces. Several big name groups are putting out statistics of those on the Spectrum. If you're me, you've painted your toenails blue, and run a half-marathon for Autism Awareness. I don't need a month to remind me of Autism, though. I don't need anything, as it stares me in the face every.single.day. There are two crystal blue eyes, and two sets of brown eyes.
Here are some statistics:
Did you know 1 in 68...blah blah blah.
Did you know shoes are a big deal? Yep. He wears shoes until there are holes in them, and when I insist on a new pair, he cries at the store...even when I find a pair with Star Wars on them.
Did you know he makes you look lazy? Oh, yeah. He works 10-12 hour days five days a week, and then works 6-8 hours per day over the weekend. Seven days per week, he is in school and/or therapy.
Did you know socks are a big deal? Yep. He used to fight them until he was in hysterics. Now, if they don't have a grey bottom, he will let you know they are wrong.
Did you know socks are a big deal? Yes, part 2. She hates them. She will scream during a diaper change until they are off.
Did you know shoes are a big deal? Yes, part 2. She screams until they are off. Not a casual scream, but "I'm-about-to-die-and-I'm-taking-you-with-me" scream.
Did you know food is a big deal? Specific brands are required, and they know if you try to change them. Textures, temperature, amount, food touching, color, and any other characteristic will arise to come in and ruin a meal.
Did you know bath time can be a battle? Water temperature, amount of toys, water near the eye, fear, that list goes on as well.
Did you know no two kids are alike? If you've met one kid with autism, you've met one kid with autism. That means you are not an expert, and Rainman does not describe my kids, or most any others. And please, don't even get me started on "eye contact."
Did you know there is isolation? School parties, church events, or open-to-the-public events, IF we can get out of therapy and still make our hours so we don't lose funding, the invitations get "lost", or the setting is not conducive to their success, or we're just too worried one thing could set off yet another meltdown.
Did you know there are guilt trips? If you don't, you've probably sent me or someone else down one. Everyone has an opinion on how we're raising all of our kids. It's not good enough for those on the Spectrum, or we're ignoring our neuro-typical kids, or we've caused our kiddos autism, or our other kids feel left out and will rebel and hate us as they age.
People say kids on the spectrum need to learn how to communicate properly. Honestly, a lot more people need to remember to close their own mouths and start using a filter before they pass judgment, or "give their opinion."
Did you know the divorce rate for parents of kids on the Spectrum is over 80%? Once again, try to just love the people who are dying to save their kids. Parenting isn't easy. Now parent kids on the spectrum, and you've got a recipe for disaster. You think we haven't thought of some scenario? Oh, we've thought about it, wrestled with it, fought over and about it, and just laid it aside to deal with the problem right in front of us...like making sure our baby doesn't smash her head on the floor during the current meltdown.
This may sound like an angry post, but it is not. Not in any way. Sometimes, though, it helps to remember that the sunshine and roses are only highlights of the stormy days and thorns. We fight with therapists and insurance, we wrestle with guilt, and we fail at least one of our kids on a constant basis. BUT, I love these kids. I couldn't be any prouder of how hard they work, how much they've grown, or just how cute they are. I am grateful every day that I have the privilege to be their mom. I wear my blue toenails with great pride, because my kids are awesome. I love how my two neuro-typical kids are learning to love those that others roll their eyes at. I love the special dates I take those two on, to make sure they know they are equally loved. I'm so very grateful for how much closer I've grown in my relationship with the Lord, because I have to lean on Him for everything. I'm so grateful for my husband who has supported, listened and fought alongside me for our kids, and for us. I'm also thankful for those who have loved us without flinching. I am so thankful that adults want to talk with us about our kids. I love it when we get asked questions because someone cares enough to ask. I do not ever want to be unapproachable, although if I'm wrestling with one of my kids, you might need better timing... ;) I love grace. It's in every moment, even if it seems to be hiding. I love this season, the newness, and the beautiful reminder that He is Risen, victorious, and one glorious day He will take away every tear.
Until then, I'll close this brief-ish post for the day. I don't get out much, so I'm out of adult words, anyway, and one of my kids is trying to remind me my lap is hers, not the computers...and I fear for the computer. Happy April!
Here are some statistics:
Did you know 1 in 68...blah blah blah.
Did you know shoes are a big deal? Yep. He wears shoes until there are holes in them, and when I insist on a new pair, he cries at the store...even when I find a pair with Star Wars on them.
Did you know he makes you look lazy? Oh, yeah. He works 10-12 hour days five days a week, and then works 6-8 hours per day over the weekend. Seven days per week, he is in school and/or therapy.
Did you know socks are a big deal? Yep. He used to fight them until he was in hysterics. Now, if they don't have a grey bottom, he will let you know they are wrong.
Did you know socks are a big deal? Yes, part 2. She hates them. She will scream during a diaper change until they are off.
Did you know shoes are a big deal? Yes, part 2. She screams until they are off. Not a casual scream, but "I'm-about-to-die-and-I'm-taking-you-with-me" scream.
Did you know food is a big deal? Specific brands are required, and they know if you try to change them. Textures, temperature, amount, food touching, color, and any other characteristic will arise to come in and ruin a meal.
Did you know bath time can be a battle? Water temperature, amount of toys, water near the eye, fear, that list goes on as well.
Did you know no two kids are alike? If you've met one kid with autism, you've met one kid with autism. That means you are not an expert, and Rainman does not describe my kids, or most any others. And please, don't even get me started on "eye contact."
Did you know there is isolation? School parties, church events, or open-to-the-public events, IF we can get out of therapy and still make our hours so we don't lose funding, the invitations get "lost", or the setting is not conducive to their success, or we're just too worried one thing could set off yet another meltdown.
Did you know there are guilt trips? If you don't, you've probably sent me or someone else down one. Everyone has an opinion on how we're raising all of our kids. It's not good enough for those on the Spectrum, or we're ignoring our neuro-typical kids, or we've caused our kiddos autism, or our other kids feel left out and will rebel and hate us as they age.
People say kids on the spectrum need to learn how to communicate properly. Honestly, a lot more people need to remember to close their own mouths and start using a filter before they pass judgment, or "give their opinion."
Did you know the divorce rate for parents of kids on the Spectrum is over 80%? Once again, try to just love the people who are dying to save their kids. Parenting isn't easy. Now parent kids on the spectrum, and you've got a recipe for disaster. You think we haven't thought of some scenario? Oh, we've thought about it, wrestled with it, fought over and about it, and just laid it aside to deal with the problem right in front of us...like making sure our baby doesn't smash her head on the floor during the current meltdown.
This may sound like an angry post, but it is not. Not in any way. Sometimes, though, it helps to remember that the sunshine and roses are only highlights of the stormy days and thorns. We fight with therapists and insurance, we wrestle with guilt, and we fail at least one of our kids on a constant basis. BUT, I love these kids. I couldn't be any prouder of how hard they work, how much they've grown, or just how cute they are. I am grateful every day that I have the privilege to be their mom. I wear my blue toenails with great pride, because my kids are awesome. I love how my two neuro-typical kids are learning to love those that others roll their eyes at. I love the special dates I take those two on, to make sure they know they are equally loved. I'm so very grateful for how much closer I've grown in my relationship with the Lord, because I have to lean on Him for everything. I'm so grateful for my husband who has supported, listened and fought alongside me for our kids, and for us. I'm also thankful for those who have loved us without flinching. I am so thankful that adults want to talk with us about our kids. I love it when we get asked questions because someone cares enough to ask. I do not ever want to be unapproachable, although if I'm wrestling with one of my kids, you might need better timing... ;) I love grace. It's in every moment, even if it seems to be hiding. I love this season, the newness, and the beautiful reminder that He is Risen, victorious, and one glorious day He will take away every tear.
Until then, I'll close this brief-ish post for the day. I don't get out much, so I'm out of adult words, anyway, and one of my kids is trying to remind me my lap is hers, not the computers...and I fear for the computer. Happy April!
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