Year End Wrap Up

June 3rd, 2015 by Ruth

Busy Kinder May

The past year has not been the smoothest Kinder year, but we are ending on a good note. May was challenging but N was a trooper and did GREAT. He was nominated to represent his class at a local regional spelling bee. We did our best to prep him from all different angles (principal, teacher, and music teacher chipped in as well). I wanted the focus to be on the experience of it (rather than the end goal of winning/losing). We practiced and rehearsed what to do when/if eliminated. The principal helped me draw a floor plan of the location so N could visualize it and know where to sit and where to go without much anxiety. The staff had him practice speaking into a mic to get him used to the sound of it, so he wouldn’t be freaked out. We went over the rules multiple times. And he did TERRIFIC. I was so proud of him,  had tears of pride in my eyes when he was finally eliminated and he happily came to find me in the audience to sit next to me. He was a crowd favorite (he got the loudest cheers when it was his turn, and the biggest applause when he was done). I think they could tell he was the underdog, because it was clear he was quirky. But quirky 5 year old is a pretty cute one at that, and many kids came up to him to tell him he did a great job. He was in the final five, they were already at 3rd/4th grade level words, and +10 rounds by then. I emailed the teacher and sent a picture via email. She nearly cried from being so proud, and printed out the picture super big, with the words “WE ARE SO PROUD OF YOU NATHANIEL” all over it, and posted it at the front door.

He also had a piano recital a week later. It was a bit of an afterthought (we were all exhausted from prepping him for the spelling bee) but we were excited about this too. He did a great job too, I could tell that he is getting better about being aware of his surroundings and tries really hard. This is probably his perfectionistic nature coming through, but he is so sincere in his efforts, it’s quite adorable. We are trying to emphasize effort and process over the end goal. Earlier this year, he had gotten a character award for taking “responsible risks” with his piano playing (every couple months, a child is selected for a character award for various character traits). His school offered piano lessons and I jumped at it, because I thought he would like music and also the mathmatical and creative component to it. Turns out, he took to it incredibly well, it was absolute favorite thing about school (besides art and math, of course). The piano teacher took notice of his interest and his persistence, and appointed him for this award. When presented with this award, he was asked to prepare a couple words to share with the audience (essentially the entire school at a school assembly). He simply said, “I do what I need to do.” I was amused at this, because I know he speaks so very plainly, and we have been using piano as a means to teach him about making an effort, work ethic, and the benefits of practicing at anything to get better. So I know he was speaking exactly about this, needing to do what he is supposed to do.

Little did I know that his Kinder teacher took this to heart; this year has not been the smoothest for her either, as I can understand how much of a mystery my child can be for those unfamiliar with ASD. She is the quiet introverted type, she is a planner and also does not like much change (I am still confused on how she manages to be a kinder teacher, lol). But she created a terrific structure for N to thrive in, she was very good at preparing him for things (or giving me plenty of heads up/notice about various things). She witnessed how surprises and even the smallest changes can cause a lot of anxiety for N, she saw how he is hesitant to try new things, and all his anxiety over anything that is too loud/wet/hot/cold/etc. But she also witnessed how determined he is to do the right thing, always following through with nearly everything he does, and even with activities he dislikes with a passion, he will try his best to swallow his fear andn anxiety, and jump in. He really does try so hard, in a world that he views as confusing and sometimes downright scary.

The teacher had also asked me for a letter of reccomendation. I was told from my teacher friends that this is common practice; many teachers will ask for a letter from a parent each year to keep in their file. I struggled with this letter, because I had mixed emotions about how this year was going, and almost being kicked out and nall. But I decided to honor her request and I wrote a letter that highlighted the things she was able to do for N that helped him to make progress and succeed.

God’s Still Here

And as the school year is coming to an end, other things are happening simultaneously too. We are in the midst of a move. At the moment, we are living in our new house, with 70% of our stuff here, minus the furniture (coming soon). I have been driving back and forth, packing boxes and driving them to the new house, unpacking them, rushing back to pick up kids from school, and doing it all over again. I’m also doing a lot of purging — 13 years of stuff to purge was quite intimidating, but freeing at the same time. But it has been confusing for the kids, especially N, who expressed sorrow at saying goodbye to our old house. He is starting to have an increase in his verbal stims — both in frequency and volume (at one point he was practically shouting every 20 seconds, it drove me nuts but I tried really hard to be patient through it). I was worried that it would be disruptive and that it would ostracize him from his peers even further. I worried about this a lot, talked to therapists and looked up info online about what could be done about these types of stims, etc. The verbal stims started showing up in the classroom too. The teacher approached me about it, and asked if I could have a talk with N about not doing it anymore. I almost laughed and cried right there on the spot. I was also angry too. Just tell him to stop it?  Well gee if it was that easy, why can’t I also just tell him to “stop being autistic” as well?! I fumed over this for days, while simultaneously worrying constantly about it.

I don’t know why I went into a tunnel about it, he is ending the school year on such a high note, and this one little thing of verbal stimming has no bearing on the progress and huge strides he has made this year. But I did go in a downward spiral, really upset, lost all perspective, and drowning in worry. I asked God to remind me that He is still with us, that He still goes before us in this journey. I asked Him to forgive me for my lack of faith, and if He could send something to encourge me and remind me that He was still there with us.

The very next day, I received the following correspondence from various people:

My mom – telling me I am a terrific mom, specifically with N, and that my kids were blessed to have me (I rarely ever get verbal  encouragement from her)

N’s therapist – confidently reassuring me that N’s stimming is due to the move and also end of the school year changes, and gave me tips on how to ease his anxiety until the summer settles in and the stimming resolves itself  (her words made me feel so much better, even though I am aware that she has no crystal ball into the future, but she has been pretty accurate about N thus far)

N’s teacher – she wrote me an email saying she could not say this in person otherwise she would tear up – but she wanted to let me know that because of my letter of recommendation for her, she has received 2 job offers and is leaving for a new school this fall. And that N was a source of inspiration for her to “do what I need to do”, and this quote from him about his piano award would stay at her desk, because his example reminded her to take risks, despite hating change.

I am absolutely flabbergasted at God’s very quick response to my prayer. And even more dumbfounded that someone found my child be an inspiration, and about TAKING RISKS too!!!!  This autism journey has blessed me more than I had expected. Our lows may be really low, but our highs are really high (every milestone is huge), and to witness my child being a blessing to others around him is just…. a reminder that God really is with us, every step of the way.

Pure & Holy Passion

April 26th, 2015 by Ruth

Give my kids one pure and holy passion

Give them one magnificent obsession

Give them one glorious ambition for their lives

To know and follow hard after You

Glimmers of Hope

April 6th, 2015 by Ruth

1. Based on the latest parent-teacher conference, we are not getting kicked out of N’s school. In fact, for the first time, staff/administration is excited about N’s recent gains and hopeful for his future. For those who know our story personally, this is a really big deal.

2. I had a bad accident in the kitchen while preparing for a church Easter event. It was a brand new knife, and it was a pretty deep cut. We threw the kids in the car and W drove me to the nearest urgent care that was open at that hour. The plus is that I didn’t hit a tendon, I can still move my thumb! The minus is that I had to have lots of stitches, but no infection and seems to be healing well. I’m even able to avoid pain meds so far! My long to-do list is out the window for the next 10 days, but W says this is God’s way of teling me to slow down. So I’m trying my best to go with it (but it’s hard, lol).

3. I see God doing a mighty work in a friend’s heart. A faith decision in the possible near future. A reminder that the things I see on the surface, is nothing compared to what is going on in the spiritual realm. And to continue to keep my eyes peeled for divine appointments/spiritual opportunities.

4. I shared the full Easter story with N this past Friday (Good Friday). I was careful to pick a kid version, seeing how much of the concepts it he can cognitively grasp. Even with the muted version, he cried over the story. I asked him whether he was sad because Jesus died. And he said, well, mostly because he was hurt badly before he died. I was proud that he could verbally articulate why he was sad, and the evidence of a big sensitive heart full of empathy. I encouraged him to read on, as it was all part of God’s plan, as the story gets better, and something much better comes out of it. I don’t know how much he actually understood, but we were able to dialogue about it in a productive way since then, and throughout the weekend (and hopefully continuing on from there!)

Daily Manna

December 9th, 2014 by Ruth

Everyday I rely on God for sustenance and strength to stay afloat. I ask God to use His Word and His Presence to daily transform my eyes in everything I see.

This past weekend N was invited to a couple classmates’ birthday parties. I was ecstatic that other classmates saw N as a friend, even if N was unaware of these social connections himself. But it was so difficult to see him with his peers at these social gatherings. The differences are starting to be unmistakable. And at one point, mean spirited teasing ensued and N was unaware that it was happening, and that his disability was the actual target. I was conflicted on what to do (all the other parents sat passively and did nothing) but at the end I could not bear to watch anymore so I told the kids to cut it out. The kids stopped momentarily, only to start it up again. This time, a few parents from the sidelines spoke up and stopped it altogether. But I think had I not initially stepped in, no one would have done anything.

I find myself in on new ground with this, grappling my own feelings on this as well as how to defend and stick up for N, or how to one day equip N to do it himself the best he can. The whole weekend I was upset, angry, and consumed with helplessness when thinking of the future.

And then God reminded me that N is in His hands, and that He loves my child infinitely more than I do. That brought me comfort, to know that any past, present, and future bullying was given to God. He loves my child. He knows my child. He’s paved a way for my child. N is safe in His hands, no matter what happens. N’s circumstances don’t define him, N is who he is, and God is unchanging.

I whisper these things to myself every moment I feel shaken. God loves my child, God loves my child, God loves my child, God loves my child…