Getting “There”

August 24th, 2015 by Ruth

I have always been a sensitive person. I grew up a sensitive child, into a thin-skinned adult, with a few neuroses and some gaping holes in my emotional being. All of this due to a mixture of my upbringing and my innate temperament. This translates into me being a people pleaser, always subconsciously seeking approval of others for my own well-being and identity. This is a terrible trait if you are a parent, and even more worse if you are a special needs parent.

By God’s grace, these issues were brought to the forefront before I became a mom, and I continued working on them as I started my parent journey, and now into this autism journey. It’s hard though, because as a parent, everyone else has an opinion on how you are doing your job, how you *should* do your job well (job performance for a mother is very polarized — either you are an awful horrible person, or you are a Madonna, and there is no in between), and the guilt that is so pervasive among us. No wonder PPD runs rampant. And you throw in special needs and everyone and their aunt/uncle/cousin-twice-removed has an opinion on your child or the cause of the “problem” (often times it’s you, the mother) and a lot of pity mixed with judgment, distain, some scoffing, and a lot of condescension. It’s enough to sink your ship all the way to the bottom of the ocean.

In my physical/immediate community, I don’t have a lot of moms to relate to, but I do check into an online forum meant just for autism moms like me. I see a lot of them struggling with hope, isolation, depression, panic, constant worry, and physical illnesses that stem directly from the daily stress. And so many, so so many, are on anti-depressants to cope with the harsh realities of their daily lives.

I get it. At least a taste of it. I am fully aware that my child’s ASD presents as “mild” and “high functioning”. So I don’t have the severity of some of the struggles I see fellow moms endure through on a day to day basis, year after year. But I do understand the type of worry that makes you feel physically (and for some, chronically) ill, and the panic attacks with every IEP email you see in your inbox, every phone call from the school, every evaluation report. The worry with every new behavior. I get it. I don’t feel it as often as some others, but I know it is a different kind of parenting journey than the mainstream, and it can get lonely.

It can get lonely because no one understands why you worry so much over such little minuscule things, they don’t understand your child’s triggers, and all those “little” things are huge mountains for us. They don’t understand what it takes to bring your child from place A to place B. Many kids just take one step and they are there, with or without parental help, whereas others seem to need that one step to be broken down into 847 different little sub-steps, with great effort from parents and professionals, with unguaranteed results/feedback. Feeding, sleeping, speaking, schooling, daily life.

And then it gets lonely with well-intentioned people who don’t know what to say. I am getting better at giving grace to those who mean well. In the beginning, I was not in any position to receive anything from anyone, as I was a quick sinking ship and I could not tolerate anything who could not give me a life jacket. Today, I am in a better place and I am able to receive words and let them slide off of me (somewhat) without much damage to my spirit. But I have also learned to keep certain individuals at an arms length. I am lucky that everyone is supportive of us, and they all mean well. I know some secretly judge, and I need to learn not to judge them back (this is hard for me). There are some individuals I used to look up to and hold in high esteem (notice the past tense?). I’m learning to shrug that off too. Everyone is human, I have flaws too, so who am I to judge, when I have probably done the same myself? I am getting better at seeing past some of the words and instead, the love that they have for me and my child. And THAT means more to me than any words flung my way. I am never lacking in my need for supporters and cheerleaders along the way. I realize that is is very unwise to burn bridges with your supporters and encouragers, because you never know what rocky storms may come, you will need as many life jackets flung your way that you can get. Every perfect gift is from above.

Holland is not such a bad place after all, I’m finding my place and God has given me His Peace to sustain me in this journey. As much as my child has changed and grown in the past couple years, I notice that I too, am in a different place. I’ve found the Rock that steadies my feet.

New Hometown

August 11th, 2015 by Ruth

It has been a whirlwind summer. School is starting this month. I had to buy a big calendar book and switch up how I do family schedule stuff because our family schedules are changing, especially now that the kids are in two separate schools (for now). I bought hanging file bins and have planned out how to channel all the paperwork (instead of getting swamped last year, lol). I’m not only prepping myself, but prepping the kids. They are excited. New school year. New teachers. New classmates. New house (we just moved). New car (lost a car to a bad accident last month, thank goodness it was just the car that was the loss). New therapies. New routines. Usually N does not do well with changes, but we’ve been gradually working towards all these changes (except the car one threw us -and our budget- for a loop) and so far so good. Hope I didn’t jinx myself with that last sentence!! ????

We are in a new city, in a new house, in a new neighborhood. Yet at the same time, it’s not new to us, we have been here before. I went to school in this town. W went to med school here. We met, courted, and dated in this town… argued, made up, cried, prayed, and got engaged in this town. The college kids look at us now, and it is obvious we are now considered “locals”. I feel so old among them, yet so young too. Walking through all the old familiar spots filled with memories is surreal. I once drove by my old apartment, and it really took me back. I was at a different place with my family, I was a different person, my priorities and expectations were so different. I pass by W’s old apartment too, it’s next to the local park and high school. So many memories. Yet at the same time, we are making new memories with these places, right on top of the old ones. My kids are running around and playing and hanging out in the places where I used to muse with my girlfriends what it would be like as a wife and mom and what my kids would be like. And now, here I am. 20 years later.

Not Enough

August 9th, 2015 by Ruth

Last week W and I took time out of our schedules to attend an annual conference for autism. It was held by the UCD MIND Institute, one of the leading groups in this country on autism. W was able to get CME credits, and I came as a parent, ready to glean any of the latest, greatest, cutting edge pilot programs and studies they were presenting this year. We split up the workshops schedule among ourselves so we could cover the most ground based on topics were pertinent to our family and our child.

We came out of it with our heads spinning, full of excitement and chatter on future programs and practices, current pilot programs and research. We took copious notes, downloaded presentation slides, made contacts with many groups and individuals in the area who showed up to this conference.

What I didn’t expect was to come out feeling emotionally overwhelmed. In the middle of one of the workshops, I had a hard time keeping it together. I was sitting among clinicians, phd students, and fellow parents, but could not look anyone in the eye. You know that crashing feeling you get when you learn something new about your child? And when I mean new, I mean something not good. Like the time when the doctor tells you your child has an incurable neurological disorder and will probably struggle indefinitely on a significant number of areas in his life and no one knows what his quality of life will be like, or what the future will look like, or even what path you should take next year, next month, or even next week. And I sat there, realizing that there are probably many other accompanying/co-morbid diagnoses that we have not even touched or addressed… And how autism touches every single part of my child’s life, it affects every developmental area. It was overwhelming to think of the vastness of it. And I came to the crashing realization that I, his mother, am not enough. I cannot do it all. I cannot keep all the balls up in the air. I cannot fix everything. I can go to every training and every workshop and read every book and spend hours with my child working with him at home, and it is still not enough. We can sign him up for every program known to man and fill his schedule up with everything, and it still would not be enough. He can be making exciting gains and showing improvements, but it is still not enough. Autism is running faster than I am, it’s arms are longer than mine and are touching everything at once and I can’t keep up. As a mother, this kills me that I cannot be enough. I could feel myself go inward to the what ifs and if onlys… But a still small voice stopped me from those wretched endless cycles (thank you Holy Spirit!). And a sudden thought came to me. God said, Ruth, I am enough. Believe in me, trust in me. I. Am. Enough.

It’s humbling to be reminded of my humanity, but it leaves room for me to experience transformative grace once again. It leaves me awestruck and comforted at the reminder of God’s love and faithfulness for me and my family. I sat in that workshop, wiping tears and silently praying, Thank you, Lord, for always leading the way and for your grace that always transforms me each time. Thank you for being enough.

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.