Sunday, November 15, 2015

The Betterness of it All ...Catching up on Spring and Summer 2015

I have some serious catching up to do. You are all wondering what the heck happened with us. I've left my blog readers in the dark, I'm sorry. My facebook friends see happy pictures and glean that things here must be going pretty well. I have not shared much publicly about the details. I confess, I have still been writing. I just need to get my act together and post them. This post right here has been holding me up. I could not figure out how to sum up spring and summer and everything that happened without writing a book. So this is kind of like a few "chapters" from April through the summer. 

July 2015

I woke up in the middle of the night, smiling in the dark about good things.

We had been living in our new home for six months now.

For those past six months, I had been waking up in the middle of the night feeling anxious and uncertain. On that morning in July, I woke up thinking about only good things. That was a gift. It meant something to me. It meant that maybe we had turned a corner.

I wrote in March that I was looking forward to the day when I would be able to write the words, "It got better."

And it did get better. Overall.

I wasn't waiting for things to be perfect, great, or even good. I was waiting for the day when I felt like we had finally come up for air.

I wanted Lilli to be settled into her new life and routine and be happy. I could try and describe to you what it's like to have a non verbal eleven year old crying loudly for much of the day everyday, bored, angry... so dependent on us in all ways. Wandering around not knowing what to do with herself, watching endless movies, sobbing and shoving me in anger.... I just can't do it justice.

So many details, so much emotion, so much hard work, the months that came before July. I can't even go through all of the details in a blog post. It would be sixty paragraphs long and you all would be like, this is so depressing, when will it end? 

But Lilli started school in the spring, and it was good from the very beginning. It was good. She was happy. When Lilli is happy, we are happy. When Lilli is crying, it affects us all. It is frustrating and unnerving and unsettling, because much of the time, we cannot figure it out or fix things.

She cried for months after we moved here. So when I say she was happy to go to school, it's a big huge deal.

Back in April

I sat in the van in the parking lot every day for three weeks in April, while Lilli went to school. It was only for a couple of hours. I had to or she wouldn't have been allowed to attend school because of a hold up with a legal document about medication for her seizures, waiting for a doctor appointment and insurance issues.

Well, I did not have to. I wanted to. And it was worth it.

I sometimes look back on that time with a little nostalgia. Mostly because I had a newborn, and I spent much of that time holding and snuggling him. But sometimes I look back on April 2015 and I just shake my head. Really, overall I think the whole experience was just another way of making me thankful for what we have here in America. We just assume our children will get to go to school, because they do - it's the law. Except that for a child with special needs, it's not always easy. Most times it's actually really hard. We special needs parents don't focus on new backpacks, fun new outfits and shoes and school supply lists and who is the room mother....that stuff is way down on the bottom of a long list (if it's even on there at all) after medical stuff and making sure my child is safe, special diets, communication devices, adaptive classes and equipment, and what happens if my child has a seizure, a meltdown, or poops in her pants at middle school.

Special needs parents worry about a list of "other things." Getting to go to school is monumental.

Getting Lilli to the point of being able to go to school was one thing (I'm mostly talking about her autism and being able to even handle going to a new place with new people, and use a device to communicate her needs.)

Getting all the documents and legal stuff in place was another. She actually was not allowed to attend school unless I had an in-state doctor's orders for administering her emergency seizure medication if she were to have a seizure at school. This was much trickier than I had anticipated. I will spare you the ridiculous details of the hurdles. Really, to sum it up, it took dozens of daily phone calls for many weeks, and ultimately my unconventional decision to simply sit in the parking lot so she could walk into the building and go to class. While I waited. For two hours.

It was a memorable time for me. In many ways, I can't believe I did that. But I had to. I am not a supermom.

I am a desperate mom.

I watched my unhappy eleven year old flounder and sob and melt down in our new home for months since we moved here. She needed this. She needed to go to school. So I just did it. I sat in the parking lot for two hours every day for three weeks.

I sat with my five year old, Josh, and we read books, colored, talked, and watched movies on a mini DVD player. I nursed the baby and just held him, many days while spring rain poured down the windows around us.

It was kind of forced rest from unpacking. And I needed the break. It wasn't really "restful," because keeping an energetic five year old entertained for two hours while holding a baby in a teeny space is challenging and requires creativity, but it made me just sit with my sweet boys and do nothing but spend quality time with them. And the pay off was huge: I got to see Lilli bounce into the school all smiles, and bounce happily back out again after two hours.

Holding a baby in the van for a few hours on a rainy April morning. Not so bad. 


When Lilli started school, I was nervous for her. I wanted her to be happy, to love the teacher, to love the other kids, to not be overwhelmed by the newness of it all. Lilli's teacher emailed me long detailed messages about how she did, who she interacted with, what she did. I was in tears, joyfully sharing the news with others, telling them of the great news that Lilli was finally happy and doing well in school.

This was what we had wanted. Happiness.

My, how our perspective has changed over the years. We, her educated, strongly advocating, go to every three hour IEP meeting and pour over every word in every document (both of us former teachers), heavily involved parents, just wanted Lilli to go to school and be happy. Forget about the goals and all that work stuff for now. Let's just get her to walk into the actual school building willingly and want to be there.

Lilli went in with her little backpack with her her favorite cheesepuffs, a potty button, and  "Yes No" choice cards. I wish I would've taken her picture as I watched her bounce away with her teacher each day.

The very first day in her new school, the teacher asked Lilli if she needed to use the potty, and she tapped the "no" card. Each day, the teacher asked her, and sometimes she touched "No," but sometimes she would touch "yes" and the assistant would take her, and she would go. The teacher told this news to me like it might not be that big of a deal, but it was huge to me. He did not know the history behind hard we have worked to get to this place of simply telling someone yes or no about having to pee. She did not even know these people, and she was telling them accurately if she had to use the bathroom.

In our world, Lilli telling new acquaintances that she has to use the bathroom is monumental.

Progress. Yes, she had made progress even since last year.

Lilli made friends with the other students very quickly. The teacher explained that at this point in the year, the kids were nearing the end and it was great to have a new student come in and create a little excitement in the classroom. (Such a positive attitude! You would think a teacher would have had the attitude, oh no, a new student? What? At the very end of the year? How inconvenient.) But no. That is not how things went down. Not at all. Lilli got lots of attention and the whole experience was very happy for everyone.

The other students sat on the floor with her and listened to her music with her and built Lego towers with her. Lilli delighted the new teacher with her affection and laughs. She bounced happily into the building every single morning. All of the positive bits of news that came from the teacher each day buoyed my spirits and confirmed that this was all going to be a good change for Lilli.

I knew it was the "honeymoon period" and that it would not always be all happiness and Legos, but for now, it was good. She was happy, And so was everyone else.

Good things. The betterness of having a great new teacher and fun new classmates. This was our spring, and it was good.

Then came summer, and school ended.


There were great things about summer. Like how we were getting things done around the house... ripping up nasty carpet and unpacking and rearranging...looking at paint samples, fighting about paint samples... putting the paint samples in a drawer and just...not painting.... but it's been fun to fix this place up and know that we are going to live in this house for a very long time. We can take our time to pick out the color of the walls, because we are settling here. No more moves. We moved boxes and furniture around, and then we moved them around again. Pretty much all summer we just moved our junk from room to room. We are not very good at decorating. At least there are less boxes laying around now. Sorta.

We celebrated the 4th of July by having family come over. We set off our own fireworks instead of fighting the crowd, and it worked out better than I thought it would. We were not sure how Lilli could enjoy fireworks. Only one time did we ever see her enjoy looking at them, which was when we were in Disneyworld. Being in a crowd of people is always a risk, and being near lots of smoke from fireworks could trigger a seizure. So we have to get creative.

On this 2015 fourth of July, Lilli watched small fireworks through our front picture window as my husband set them off in the driveway. She was interested, and stood with me and watched the fireworks and sparklers through the glass.

Watching our little fireworks in the driveway through the window.

Sometimes I get caught up in thinking that we need to do what all the other families around us are doing, like get in the car and drive to a field with hundreds of other families and watch the awesome huge fireworks while sitting on a blanket together. But that just doesn't work for us. That's not our family. With Lilli, we can't do that. And it's ok.

Our way of celebrating was great too.

The best thing about the summer was that we moved to a street with wonderful neighbors. Josh and Chloe played outside every day. They would beg to go out as soon as they woke up. They played for hours and hours with the neighborhood kids. It was a dream come true for me, to have this for my kids. We own a Wii. They played it less than 5 times total the entire summer. They had hardly any screen time all summer except for movies we checked out from the library. They tromped through the woods and played until it became too overgrown with summer leaves. They swam in the little KMart pool we had and jumped on the trampoline. We went nowhere. We did nothing special. It was the best summer ever.

Except for Lilli.

Lilli did not have the best summer ever. She does not do well with a go-with-the-flow summer schedule. She did not want to go in the pool much, only a few times. She had a bunch of seizures all summer, and that was tough. Really tough.

She was just so unhappy much of the time, and all she wanted to do was stay inside and watch the same movies over and over. It was hard for her. If I made her go outside, it usually did not last long. She would melt down and collapse and sob, yanking at the door to go back in.

Lilli had summer school a couple of hours a week for six weeks, and that was a bright spot in her week. She loved the teacher, and she did great. I was so thankful the day the teacher brought Lilli out to the van after a school session and said, "She's very smart! She knows what's going on, she absolutely does." I appreciate when others point out Lilli's intelligence in front of her. Lilli needs to hear it. It validates her. You should see the reaction from Lilli whenever someone sincerely complements her brain. She so wants others to see this in her.

I could not wait for school to start for Lilli. She needed it so much. Summer yanked me in different directions every day. I wanted Josh and Chloe to have all the outside playing time they wanted. I wanted them to experience what every kid should during summer months: catching fireflies, riding bikes, swimming, playing outside and imagining.

I wanted Lilli to have a schedule and activities that she enjoyed too, with other kids her age. I looked into therapy horseback riding, since that is something she has always done and enjoyed.

Therapy Horseback Riding

$50 a lesson here. A lesson. Actually that's the reduced rate, because it is technically $100 a lesson but they have some sort of funding that lowers it to $50 for a 30 - 45 minute lesson.

I don't know what I'm going to do about that one. I need to do more research. I just assumed when we moved here that she would continue with riding. I play little mental games with myself and try to pretend by thinking, $200 - $250 a month is no big deal, so what if she just sits on the back of the horse while someone else leads her around a ring for a half hour, it's good for her. It's helping her with balance, self confidence, she's interacting with others, she has something to look forward to, she has something to be proud of, she has an interest besides movies, it gets her outside...the list of positives is long.

But $200 a month IS a big deal. We used to pay $10 a lesson for a wonderful program where we used to live. They did a lot of fundraisers and kept the fees low, bless them. I really don't know how other families with special needs can afford riding therapy. Maybe they do their own personal fundraisers. I have thoughts about doing a fundraiser for about ten seconds and then I get overwhelmed and stop thinking about it.

So Lilli didn't have therapy horseback riding this summer. I'm still working through that one. It's the one "extra cirricular activity" (even though it's technically therapy) that Lilli looked forward to each week. She can't participate in sports, dance, or other typical activities like other eleven year olds can. I want to be fair to my kids and let them each do activities. It just doesn't always work out to being fair.

I will figure this one out. Eventually. There are still so many things to figure out.

It's Better

The summer had ups and downs, but that morning in July, I took my first sigh of relief. We had come through a stressful row of months of transition, and the dust was finally settling. Even though there were still some tough things to work out, I felt hopeful. Lilli would be okay here. She would start school in the fall and hopefully have a happy year in the sixth grade. Even though she struggled through the unscheduled, summer days, I knew things would get better when we started the school routine in August.

When I bought school supplies for Josh and Chloe, I did not have a list for Lilli. Lilli doesn't use supplies like Josh and Chloe do. She can't write with a pencil. She didn't need folders or pencils, erasers or notebooks or glue. For her self-contained class of four students with special needs, there was no list. So I bought her a brand new backpack and it sat empty, next to the stack of supplies I had to buy for the other kids.

Lilli is always in a different category, and it's always hard to try and make things "even" or similar to what her siblings are experiencing. Even so, she seemed excited about that backpack and her new ipad.

It would be a better school year for her. It was already better.


For the first time in Lilli's entire life, she has some girls who are extending friendship to Lilli. They are friends with Chloe and Josh, but they try to include Lilli too. They ask if she can come out to play, if she can come jump on the trampoline with them or they push her on the swing. This is priceless to me. It is not easy to be friends with a child who has autism and cannot talk. Any child who extends friendship to Lilli, and is willing to step out of their comfort zone to learn who Lilli is and spend time with her, is an absolutely amazing young person.

It's good. It's better than better. Having another child show friendship (any kind, even the very smallest acts) toward Lilli is the sweetest gift ever.

My favorite picture from the entire summer. Most people know that Lilli puts her hand on her neck when she has something to say but she cannot say it. Notice that this is a "two-hand" on the neck gesture. Like she is shouting. Or just saying something with excitement and delight. The look on her face is priceless. She is playing with other kids. They are including her. This might have been the best moment of her whole summer.

Therapy and Doctor Stuff

Lilli charmed the new pediatrician here. By the time we left, she was giving the doctor hugs and kisses, and we were all chuckling. The waiting room time was stressful, but meeting the doctor made it all worth it. Wow, right off the bat, we found a fabulous doctor. What a gift.

Working through the ridiculous insurance issues still, we got therapies in place and Lilli started receiving speech, occupational, and physical therapies. The speech therapy was what I was most concerned about. It is not easy to find someone who will have the knowledge and expertise of augmentative communication and believe in Lilli's capabilities and potential.

We were blessed to find a wonderful speech therapist, who stepped right into place where Lilli had been in therapy before we moved. Speech therapy has been amazing.

It's good. So good.

An Unexpected Surprise

Not long after Lilli began school in the spring, they ordered a new ipad for Lilli. I just now remembered that I wrote a blog post about that, while sitting in the van for two hours in April every day when Nate was napping. I will have to look for that post. The new ipad brings good news and much more to tell.

I had fears about moving here. But more than fear, I had hope.

When the future is unknown, you can choose to have fear or choose to have hope. You don't know what is going to happen. It might be hard. It might be a bumpy ride.

But it might be better than what you already have.

No comments:

Post a Comment