I think it is safe to say that parents of special-needs kids have gone through a huge range of emotions from sadness or anger about their child's diagnosis and the struggles that he faces, to joy over the simple things like saying "mama" or eating a new food. We question why our child, why this diagnosis, why don't others have to worry about these things. And then we feel feel intense pride and joy when we see our kid do something awesome or reflect on his heart of gold.

In a video lecture I watched recently, psychologist Ross Greene said that while parents of challenging kids may have more work cut out for them, they also get to go along on the ride with their children. While other parents are enjoying their child's accomplishments--some athletic achievement or winning a student council election or being a great artist, etc.--they are not as involved in the nitty-gritty day-to-day processes of learning any of these kinds of skills. With some encouragement and a good instructor, their kids just take off. In contrast, at our house, there is a lot of time spent on skills such as handwriting and chewing and learning how to introduce oneself to another child, among other things. So when the "sh" sound is properly pronounced for the first time or when one of my children writes his name legibly on a page, these are worthy of celebration. Parents of typical kids could celebrate these things, too, but they probably pass by unmarked because they are expected.

I have gotten to do quite a bit of celebrating with my kids. There are too many milestones to list--taking a vitamin, letting water get in his face in the shower, staying dry at night (every now and then it happens!), learning how to stick his tongue out, sitting still during church, hearing a passing dump truck honk its horn and not having a meltdown, coloring a picture mostly in the lines, alternating feet going up the stairs, playing with another kid at the playground, touching something wet. My husband and I jump around and cheer for these things, buy special treats and give big hugs. We appreciate the complexity of the neurological pathway that had to be formed to accomplish a feat, the anxiety that had to be overcome, the many months of therapy that led to the success. And we get to celebrate! It may sound trivial, but these are really special moments. Kids notice when parents invest time in helping them learn something and they enjoy being congratulated on a job well done.

Growing up, there were a lot of expectations for the kids in my family. Whether it was doing our homework, cleaning our rooms, doing chores, performing to the best of our abilities in extracurriculars, etc., we did it and moved on. Perhaps there was a pat on the back or recognition of something special. We definitely were not ignored or neglected.  But it feels so much different as I raise my own kids. I know them so well. They trust me to know when they need a hand, when it is not obvious to someone else that my son can't bend over to pick up a toy, or when one of them needs to hide his face in my shirt because of a particular smell. They know that I get what their limits are, that if they've had to focus for a long period on something and tolerated loud noises in a crowded place, then they just might need assistance if another challenge arises and their reserves have been used up. They know that I am there for them in the middle of the night. Or that I will help them calm down when someone bumps into them and no one gets why they are crying since they are not hurt. They don't often have to explain their reactions to me, and when they do, they know I am listening. I love the closeness that I have with my kids. I pray that I have the strength to continue to be a good listener and a shoulder to lean as the years pass and the challenges get more complicated.

If things came to them more easily, would I have put in as much effort to understand them? Their gifts, their fears, what makes them tick? It's hard to say, but it is easy to conceive that I might have taken many of their accomplishments for granted. So amidst all of the day-to-day work of raising these complicated kids, we get to celebrate pretty often. While my friends who are parents of typical kids don't get it when I excitedly proclaim that my youngest son took a bite of chocolate pudding, there are others who will jump up and cheer--friends, teachers, therapists, and our church family. And that is another huge blessing in itself, having those special people who can celebrate with us.

I have days where I wonder what I would change about my kids if I could change something. Would I get rid of allergies? Take away speech problems? Anxiety? Motor-planning problems? If I could pick one thing, which would I take away, what is the hardest thing? It's a pointless debate I have in my head, and I've learned to stop before I spend more than 30 seconds thinking about it. I can't choose the challenges my kids have to deal with any more than someone else gets to choose whether they get cancer or lose their job. If I could pick, I wouldn't allow any of these hardships. But the reality in this fallen world is that I don't get to pick. In eternity, the challenges will all be resolved. Until then, I'm on this ride with my kids. They are great travel companions and I am going to enjoy the journey with them.

 

It's that time of year when all the neighbor kids are going to summer camp, whether it is overnight or day camp or just the daily activities through our community ed program. I'm pretty sure my kids would not do well at any of those places, and they don't want to go anyway, so that's OK. I have looked at local options for day camps for kids with autism. But the high cost combined with the fact that my kids are pretty nervous about new places if I don't stay with them, made me rule those out. So we are left with VBS (vacation Bible school) at our church, and ESY (extended school year) through our district.

Our church recently held its VBS program, and my kids loved it. It was a small group of kids, in a familiar environment with lots of love. The junior high and high school kids did a great job helping out with the little ones, ALL of the snacks were allergen free, and when they made t-shirts, they even had a special spandex one for Herbie to decorate instead of the regular t-shirts. Wow! There were certainly some rocky moments during transitions and new activities, but we left every session in a great mood and looking forward to the next. What a blessing! The theme was "Shine God's Light" and I have to say that the teachers and older kids helping really did just that for my kids. Hopefully that lesson transferred to them, inspiring them to shine God's light in their own way.

Last week was the start of ESY. Both of my kids were a bit apprehensive about what it would be like. The Owl's ESY is at the same preschool facility where he went last year, with mostly the same group of special ed instructors. The big change was that he would be taking the bus. He has been asking to take the bus all year, but because of his allergies, I preferred to drive him. After talking with the bus company extensively, I felt like we could give it a try. So the first day came, and he suddenly realized he was actually going to take the bus, and he changed his mind. After all the phone calls and arrangements I had made for busing, I felt like we should at least try it once, so I coaxed him into getting on the bus. As soon as he was buckled in, he was grinning about his new adventure, and it went swimmingly! He kept his allergy alert bracelet on, sat in sight of the driver, and the driver had easy access to his medicine. After he came home, all he could talk about was the bus. Apparently he had fun at school, too, and the teacher called me to go over a few things, but the highlight was definitely the bus. Now he is excited for every bus ride, I wonder if I will have to let him ride it in the fall, too.

Herbie was a little nervous, but not hysterical like last year. He remembered that it was fun, but it had been a year, so if it were up to him, he would just stay home. It was a little different from last year, meeting at the high school first to have breakfast then walking (across an athletic field) to the nearby primary school for the rest of the morning (not his regular school, but the one in the district with air conditioning). He stayed 4 hours instead of 2 like last year. Apparently he loves it, because he got off the bus grinning and leaping across the yard to tell me how fun it was.

I know how hard it is to go somewhere that you don't know what exactly is going to happen. I have trouble with that myself. But these kids are so little, and they are getting on their buses and going off to the (sort-of) unknown, then coming home with huge smiles. I know it is hard for them to go off by themselves and work on difficult things (speech, social skills, behaviors--tough stuff for them), but they go knowing that the staff is going to take good care of them. Everyone from the bus drivers to the paras to the teachers makes them feel loved, so they can bravely go to school and come home super excited about going back. Hooray for the awesome special ed staff in our district! Supported by people who truly value and care for them (and have a lot of fantastic training!), my kids were able to overcome their fears and make huge strides.

I have been hearing a lot of "it's not fair" lately, exclusively from Herbie. It is usually regarding something to do with who has to take a shower first or who gets the first bedtime snuggle or the perception that his brother got more iPad time. I used to always try to make things like that relatively equal, keeping better track of whose turn it was to do certain desired or undesired activities first.

Now I am trying a different approach. The jury is still out on whether it is going to work, but keeping track of who got to go down the slide first when we were at the park three days ago is just not at the top of my list of things on which I want to spend my energy. When I hear Herbie protest the fairness of something, I ask him if he really wants his brother's life. Does he really want to be like his brother, without the ability to climb up on the monkey bars or jump high on the trampoline or to eat cake from a bakery? He gets that and the protest stops. But of course there is always another protest the next day. If I'm handing out tortilla chips and he thinks the Owl has one more than he does, I ask if he wants to always eat the same things as his brother, should I toss the goldfish crackers and never buy them again? I tell him that being "fair" does not necessarily mean making things exactly the same, but doing the right thing for each of my children. I wonder if I'm being a little unrealistic saying these things to a 6-year-old. And one who has had plenty of unfair things in his own life.

Meanwhile, the Owl has never once uttered the phrase "it's not fair." (I hope I am not jinxing myself here!) In fact, he is the one who goes shopping with me and wants to buy frozen pizza (that he can't eat) for his dad, freezer waffles (that he can't eat) for his brother, dark chocolate bars (that he can't eat) for me, and all kinds of treats for his family that he knows we enjoy. We get home and he announces the gifts that he has selected for everyone. (Never mind that it is my money that he is spending....) He is so excited to see the smile on his dad's face when he announces what he picked out for him. And if we are driving past an ice cream place, he'll quickly point it out to his brother and cheer because he knows how much his brother loves ice cream. He is truly happy when other people enjoy eating things that he will never get to have. I hope that his positive and generous attitude lasts forever!

I want both of my boys to appreciate all of the good things in their lives and to realize that the good outweighs the bad. Herbie gets to enjoy all kinds of fun activities and delicious foods, and when anyone talks to him about these things, he excitedly says that he is lucky. The Owl only eats from a very short list of food, but he jumps for joy when we prepare any of them. He gets home-made versions of lots of treats and is going to be an amazing cook when he grows up. I want them to remember their blessings and their loving friends and family when the worries of life get more complicated than oreos or turns at the playground.

Happy Independence Day! A good day for us, when only one of my kids required hands over his ears when outside where all of the neighbors were setting off their fireworks, and once inside, neither one was bothered by all of the loud popping sounds outside while they were getting ready for bed. Progress!!

In light of our negative experience with the horse therapy instructor, I have been thinking about how I can approach these types of situations differently. This post has been sitting in my draft folder for many weeks now. I keep looking at it and deleting bits and pieces, softening my words. I really don't want to be terribly negative on this blog. But I also did not expect anyone working with special needs children to display anger or forcefulness in a professional setting. But there it was, the beginning of something ugly that I had to stop.

If anyone else is going through something that is not sitting right with them, then I want to encourage you to speak up. In the last couple of months I keep hearing stories in the news and from people that I meet, about negative experiences with teachers and therapists. A lot of parents seem to question themselves--is that really happening? does it sound worse than it really is? am I over-reacting? maybe they are right? what are the ramifications if I speak up?

One mom I know had a therapist lecture her on her poor parenting. Another had a son verbally bullied by multiple members of the staff at his special-needs school. There are some really awful reports on the news that I wish I hadn't heard. My story is not all that scary, but still definitely upsetting to have my child scolded and shamed by someone who works with special-needs kids every day. It is hard to find safe, non-judgmental places where I can bring my kids and let down my guard. I thought I had found one in the horse farm, but I was wrong. A late-night ER visit for tummy troubles (in hind-sight probably stress related) got me thinking about how to reduce my son's stress level, and it became clear that we needed to be done with horses.

Going forward, I want to always be informed, involved, and ready. When disagreements come up with people in places like school from which we cannot so easily walk away, I want to have a better plan and feel more confident in myself. Here are my main take-aways for myself, what I wish I would have done differently.

I was not at the lesson where the ultimatum was given about saying, "hello." I didn't initially realize the seriousness of her threat. As I was talking with Herbie, he offered that he might whisper a greeting instead of speaking loudly. Since I have most of my free time late at night, I thought I'd shoot off an email to the instructor while I had it on my mind at 11 pm. I simply asked if we could start with whispering, figuring she'd reply that it would be a good place to start. Instead, she called me the next day and it was not a good conversation. She didn't want to talk about it, she wanted to tell me why she was right and why I was wrong. It was going nowhere, so I ended the conversation. I wish that I would have said something like, "for the record, I disagree, but let's talk about it when I see you at the next lesson." In my desire to end a bad conversation, I just tried to be neutral so that I wouldn't start another round of arguing which would prevent me from getting off the phone.

I have always had issues with being heard, I tend to be non-confrontational, not wanting to offend. When it comes to my kids, I can't be like that anymore. That doesn't mean I need to yell and argue. But it does mean that I won't just be polite.

Lesson learned: If the other person is dominating the conversation and I don't want to continue, don't let them assume I am ending the conversation because I agree with them. I will state my disagreement but also state the need to end the conversation and revisit it later.

At the next lesson, our face-to-face conversation was similarly one-sided. I thought I did a little better telling her she was pushing too hard, but she still did not let up on her insistence of a full-voice greeting. I proposed a modification to the format (on the ground instead of in the saddle) and giving it a few weeks to become comfortable. She agreed to the modification but insisted on a vocal greeting on the first try. I knew full well it was a no-go. She was not honestly thinking about my words, and more significantly, she was blaming my son for misbehaving.

She had told me in her own words that he knew exactly what he was doing, that it was one of her pet peeves when someone did not participate in greetings and she had encouraged another girl in the class to get on his case and hold him accountable, thinking that would motivate him. That when he was reprimanded and finally allowed to ask his horse to walk, he impulsively put his reigns up too high so she made him go to the center of the arena until he would apologize. While autism is not an excuse, it is an explanation for challenging behavior and should guide us in how we try to teach skills. Making him ashamed is not the answer.

I knew Herbie would not be coming back. She was too angry, I was too angry. Her comments about how he was "pushing her buttons" and how he could "not be trusted with the reigns" really stung. (Was she saying that she was not capable of making a riding lesson safe for a special needs child?) After lots of thinking, praying, talking, etc., I drafted and edited and re-edited a letter to her. I wanted to get my wording right, say what I wanted to say but not too much. I would not be able to do that in a conversation. So I sent it as an email, expecting that she would probably call me about it. I just wanted to get my thoughts out in writing, that is important to me. Then I drafted a few key things to say in the event that she called, which she did.

One of the first things she said when she called was how she wished I wouldn't use email so much, how I should always call. She kept making comments about how I never talked to her but just sent emails. I tried to remind her that in fact we did talk about this issue on the phone once and in person once, but somehow that was lost on her. She just kept referring to my emails as me not trying to solve the problem, as if the problem would have been solved if we'd talked and I hadn't sent the email. In reality what would have happened if I hadn't sent the email is that I would have been bullied by her and not had the chance to truly articulate my reasons for leaving. So I stood by my emails and said I was happy to follow up with a phone call after an email but I needed to get my thoughts out clearly in the email. She wouldn't let it go and it really irritated me. I wished I had stated in my email something along the lines of "when we talked on the phone and also in person...."

Lesson learned: Document everything--when we talked on the phone, in person, etc. and reference that in subsequent written communications. I can see this being helpful with school IEP issues since there are so many meetings and phone calls and it can be hard to keep it all straight even when it is positive communication.

I had previously assumed that people who work with kids pick up on when strategies are working and when they are not working. If I'm trying to convince one of my kids to do something, and it doesn't work, then I'll try another strategy the next time. That doesn't mean that I never slip into old habits when I'm in the middle of a situation. But if it is a planned discussion, I try to change something to be able to get through to them. In fact, she did not try to think of anything new, because she didn't understand the reason her strategy hadn't worked. She was going with the assumption that he was unmotivated, so in her mind, all that was needed was to be forceful. I am kicking myself for not pointing out to her after that first attempt that she was going about it all wrong. Part of me assumed that she would let it go or if she tried once more that it would sink in that it was not working. Part of me thought maybe he could say, "hi." Nothing in my mind suggested that she would not only stick with it, but get angry and chastise him in front of the group.

Lesson learned: Don't make any assumptions. Ask questions. Speak up.

Herbie is back to his normal fun-loving self, and thoroughly enjoying summer vacation. I intend to give both of my kids more opportunities to give me feedback on their activities and therapies. I will always speak up when something doesn't sit right with me. I will trust my gut instincts. Our family has a lot of goals to work on, we only want to spend our precious time on the ones that are worthwhile. And one that is very worthwhile is having enough unscheduled time for being together and having fun.