Nothing’s Impossible

Posted on May 1, 2013 by simpleijustdo

The Single Mothers who have Children with Autism facebook page recently posted a reminder that taking a break from your routine and taking care of yourself is important. Yet many commenters responded bitterly that it just wasn’t possible, and people who say that mean well, but that’s the last thing single moms need to hear.

I disagree.

Nothing’s Impossible

People, if something isn’t going right in your life, you have to make the change happen. Do you think a respite fairy is going to land on your head and grant you three Friday evenings to yourself? I have no nuclear family in the area, yet I am able to take an evening off every once in awhile. Granted, I make a decent wage, and I get that it can be extremely hard financially – money was extremely tight after my divorce, because I was digging myself out of debt. I know that feeling. But there are ways, and you have to find them! Insisting that it’s impossible and defeating yourself before you even start will turn you bitter, and as a result, everyone around you, including your children will suffer. I know people like this. Their negativity is like a virus. And when they don’t take time for themselves, they are more apt to run out of patience and snap at their kids, become exhausted and ill, and it spirals downward from there.

Some ideas:

A break from routine is not necessarily a break from your child(ren). I know routines are the safety zone for kids with autism, but I have written before about how amazing it was to stop and get myself a sweet tea after a meltdown-y morning – it was FANTASTIC, and it had a lasting effect. Something small like that is a great way to start treating yourself kindly. Lord knows our kids won’t always show us the same kindness!

I am lucky that my child enjoys latchkey – it is relatively inexpensive through the school, and gives me a much needed break from ALL kids after work, because he doesn’t like to be picked up until 5pm. I don’t pay any extra for keeping him there until 5pm, and it is an excellent opportunity to unwind a bit before the evening routine begins.

Groups like The ARC often have respite grants for members, and membership dues are often inexpensive or even free. This is a GREAT resource that is oftentimes underutilized, which means you have a great chance of getting some money to help defray the cost of even a family member providing some babysitting for you.

Have a friend with a special needs child? Share the babysitting costs, OR offer to watch the kids for an hour, if she’ll take them next time.

Feel like your calendar is too full to take a moment for yourself? Pencil yourself in. You need to be a priority in your own life. There’s no excuse for that.

Can’t find quality help? Ask at your school – sometimes the parapros (or aides) need some extra cash, and already have a relationship with your child. Maybe your local high school has some National Honor Society students interested in becoming special education teachers (and they probably need service hours and would do it for free).

Sometimes just having an extra pair of eyes in the house while you do chores (or sleep!) can be a weight off your shoulders. Again – get a high school student to come in and be your eyes and ears (or entertainment for the kiddos) while you get stuff done. The more time they spend with your kids, the more they will learn about what to do – special needs babysitters in training!

Bartering is getting big. Is there something you could do for someone in return for them watching your kiddos for a bit? Bake some banana bread? Fix a networking glitch? Give someone swimming lessons?

If none of these ideas will work for you, I feel for you. I completely understand that some children’s needs are severe, meaning breaks a just going to be harder to come by. But you can’t stop trying. You have to find a way. We special needs parents are in extreme danger of burnout and battle fatigue, and the very reasons many moms and dads say they “just can’t take a break” are the same exact reasons they must. Our children need us at our best, so we can handle the worst for a long time to come.

Don’t Knock Awareness

Posted on April 23, 2013 by simpleijustdo

I keep seeing facebook and blog posts, and tweets stating that awareness is just not enough.

Of course awareness is not enough. Acceptance would be lovely, access to therapies, respite care and services would be grand, assurances that my child will be cared for after I am gone would be divine. And of course, those of us who have the energy will continue our fight for these basic needs (and yes, they are basic needs, as any family touched by autism can attest).

But, we can’t do it alone. We need armies of people to help us demand that these basic needs be met. And we don’t have armies, yet. We can’t even get our own rag-tag assemblage to march under the same banner — we can’t even decide what our banner should say!

So I say we continue with awareness, and not just some event with a puzzle piece on a poster that says “Autism Awareness Night”. Puzzle pieces, posters, literature, and every autism family in a 50 mile radius in attendance, so those NT attendees can glimpse the spectrum in all its glory: the sweet smiles, the small victories, the hand-flapping, the meltdowns — all of it. We cannot rely on large national nonprofits to do the work for us. We have to get our kids out there. We have to make our presence the norm. We have to be unapologetic. We have to use every teachable moment.

Doing all of that creates awareness. And awareness is where armies are born.

Is it Really Spring? For Real?

Posted on April 16, 2013 by simpleijustdo

I’m not saying I have Seasonal Affective Disorder or anything, but a lack of sunshine up here in the winter months really takes it’s toll. And spring here is also cruel, giving us a few days of nice temps or sunshine (or if we’re really lucky, both at the same time!), but then the 30 and 40 degree temps come back in the end. And it isn’t until we’re well into May that we can relax and realize that spring is here, for another month and a half until it turns downright hot, and the switch is flipped to summer.

To all the people that call spring their favorite season, I understand why. The hope, the baby animals, the buds, yadda yadda… But where I live, it just doesn’t live up to the hype. Yeah, we have a few nice days here and there, but most of the time, we’re left wishin’ and hopin’ and prayin’.

Today is one of those pretty nice days: 65 degrees, although overcast, still enough of a breeze to require a jacket, and lovely little harbingers of warmer weather making their presence known:

(please disregard the weeds in the picture – I have no idea how they got there! And don’t get excited about the tulip-looking thing beside the crocus… My tulips are head-less….)

But I’m no dummy, and I ain’t gonna fall for it. I think we’re back down to the 40s again this weekend. The wait continues…

Need to Reboot!

Posted on April 15, 2013 by simpleijustdo

Did you ever have a day that felt like a complete waste? I’m beginning to get overwhelmed, and as a result, I’m shutting down: not working out, not getting much done. Too much thinking, and not enough doing. I’m feeling fatigued and headache-y for no reason, and it’s taking major effort to get anything on my to-do list to-done.

Desperate times call for desperate measures. When I am thinking too much, I need to do a brain dump on a pad of paper, and write down every little thing that keeps popping up, even to the point of keeping it on my nightstand and jotting things down as they come to me in the middle of the night. This is part of the Getting Things Done philosophy that I use, albeit on an irregular basis. Once everything gets “dumped”, it needs to be organized into things that I can do something about, and things I can’t. If I can’t do anything about it, at least it’s on paper and not circling my brain anymore. If I can do something about it, it joins my to-do list. For smaller tasks like housework, I can use the Pomodoro technique to get myself in gear, and the calendar works for larger to-do items – deadlines have always worked for me.

A day off (for organizational purposes, of course) and a massage (purely for the headache-y, fatigue-y feeling) may also be in order.

I don’t have time to be in a funk!

Sleep

Posted on March 13, 2013 by simpleijustdo

alarm clock by brucebeh

I love sleeping. I really love sleeping. Always have. I’ve had friendships broken up because the other person did not understand about me and sleep.

(I was in sleep-away grad school, and needed to use someone’s computer for an assignment that was due. All of the computers in the lab were taken. He said he had to finish something, and I could use it after. A few hours later, I got tired of waiting, literally [mind you, I was 6 months preggo] and went to bed. He knocked on my door at 2 am and woke me up. We were no longer friends after that…)

I must, must, must get enough sleep, or you can count on my not being someone you want to be around the next day. And if I go through a couple of nights not getting adequate sleep, I can count on becoming ill very quickly.

So you know what’s coming, right? Yep. My big plan about going to bed earlier is the culprit, I think, but I have been having such a hard time falling asleep for the past week. Some could be due to stress, but something wonky is going on. And I don’t like it. Not one bit.

I’ll give it another week or so before I get really panicked (and cranky and agitated), but this is not me, this is not right, and I don’t know how to get it back to the lovely usual.

Peace of Mind

Posted on March 6, 2013 by simpleijustdo

One of the things that I have been most nervous about the move, OK, more like THE ONE THING that has given me a good bit of anxiety is the program for The Boy in the state/county/school where we will be. You just never know what you are walking into, even with a diagnosis and an IEP in hand. You may remember that I had spoken with someone who worked in a county a good bit away from where we were who said they didn’t have a resource room to speak of, and didn’t have any aides in the rooms with the kids. Considering that The Boy spends a good amount in his resource room, I got a bit panicky about what I was going to be subjecting him to.

I had put out some feelers through some contacts with the state Autism Society, and hadn’t really been able to connect with anyone, until this weekend. I finally got in contact with some parents who run the local chapter, and was able to speak on the phone with one lady who was able to give me some insight, at least into her experience. She had also moved into the area a year and a half ago, and has a son that is very close in age to The Boy. She was able to allay my fears a bit, and let me know about how much their little chapter has been accomplishing. Not only was I relieved, but I also began to get a little excited. Here is a group that is actually making positive change in the community for kids on the spectrum, and providing opportunities, and even a summer day camp! YES! Exactly what I was hoping for.

Not to mention that this group is a way for us to meet people like us, which will be one of the most difficult parts of the transition for both The Boy and I, making new friends. I often complain about talking to people on the phone, but this time, I am sooo glad I did.

Queen of Procrastination

Posted on March 4, 2013 by simpleijustdo

By Portobellostreet

That’s what it should say on my nametag. Yes, I have valid reasons for it many times, and in any case, I’m pretty sure it’s not something that’s going to change. In this case, I have been procrastinating getting back into the exercise thing, thinking that if The Man and I set a date for a wedding, I’d have a great motivation and a goal all rolled into one, so why start exercising until we have that set?…

See how my mind works?

Well… We haven’t set a definite date. And I realize that this is just procrastination in disguise.

After checking out this post and then this post over at zenhabits.net (I know, I KNOW, research on the internet is another not-so-clever disguise for procrastination, too!), I developed a plan, keeping in mind my previous insights into my own roadblocks to exercising, and the great points in the posts about triggers, motivation, and goals.

Step One: go to bed earlier (9:30 instead of 10). I had an epiphany when I realized there was no real reason to stay up until 10, as I am often tired before then. The Man and I used to talk on the phone after The Boy’s bedtime, but we talk earlier in the evening now, ergo I do not have to stay up that late…
Step Two: Three times per week, I will wake up 20 minutes early to fit in yoga, or the bike, or some other cardio or strength training (that I’ve probably found on Pinterest).
My goal is to lose a few inches off my “hips”. This is my trouble spot, and the reason my pants are starting to not-fit.
Report: I will measure myself once a week, and post about it to you people (even if you don’t want to hear about it), because it’ll make me accountable (probably on the simpleijustdo.com facebook page).
Reward: I will also reward myself if I meet my plan each week. No food! Just books, shoes or other mild obsessions…

I hope I’m ready for this! I hope I can stick with it for awhile!

Starting measurement: 41″ (Ugh…)

No Time To Be Scared

Posted on February 18, 2013 by simpleijustdo

When The Boy was born, he was two weeks early and a tiny little thing, but he was still considered full term. It was a long labor, but he was deemed a healthy baby boy, who had no problems nursing, and we were sent on our way. Once home, I started to worry about how much he was spitting up, and also by the color of it. We had been assigned a pediatrician through the hospital, and we called with our concerns. We were basically poo-pooed as newbie parents and told not to worry about it. Except that I had done more than a fair share of babysitting in my time, and this was not right. When The Boy projectile vomited across the kitchen (our very large kitchen), we went in. The doctor looked at his bib, with the yellow stain on it, and then all of a sudden she was concerned. She took the bib, walked out of the room, and then came back and told us if it happened again to go to the emergency room. Even as a newbie parent, I was less than satisfied with that response.

We decided to get a second opinion. Same medical system, different doctor. After explaining what had happened in the past two weeks, he asked, very casually, if we had had an “Upper GI”. Umm, nope. The previous doctor told us that would be too invasive. He replied that it wasn’t invasive, the baby drinks some milk-like stuff, and they take an X-ray to track the liquid through his gastrointestinal tract to see if there is a blockage. Made sense, didn’t sound invasive, and one was scheduled ASAP.

We brought The Boy in, fed him the stuff, and then we were met in the waiting room by an intern who told us that our son would be having major intestinal surgery in a matter of four hours.

Words cannot describe the shock and fear we felt, but I appreciated the professionality and care from the staff, and kept thanking the stars, the heavens, God, and whoever else that would listen that we had gotten a second opinion. The Boy had a “malrotation of the intestine” and they told us that if he hadn’t had the surgery within the next 24 hours, he may not have survived.

We went straight to the surgery waiting room and waited. And it was quite possibly the longest and worst day I have ever been through, although we really didn’t have time to be scared, and were still in shock.

He did exceptionally well in the surgery, and was admitted to the hospital where one of us stayed with him round the clock for the next week. He was not allowed to eat or drink anything except sugar water until his system was completely clear, so that they could make sure the surgery was a success. I didn’t realize it at the time, but I look back at the pictures and he looks like a little baby skeleton. My parents hadn’t even met him yet!

I was still healing from childbirth, and taking shifts being there, lack of sleep, worrying… It was a trying time. The surgeon was fantastic, checking up on the little “peanut” as he called him, and pretty soon, we were able to take our baby boy home again for the second time. It was never lost on me how very lucky we were and are that all was well in the end. Except, as the surgeon explained about the scar on his belly, “He’ll never be a Chippendale dancer.” I think we can all live with that.

Do People Ever Change?

Posted on February 17, 2013 by simpleijustdo

I ask that as a truly philosophical question. In my personal experience, it takes a lot for a person to change. Conditions have to be just right, including the person’s own desire to change, having the ability and wherewithal to put in the actual hard work of changing, and having some sort of positive reinforcement. In other words, the stars have to align.

Maybe it’s a cynical point of view, but as I said, it is based on my own empirical data, my own worldview and my own experience. I know that changing my habits to include exercise have been a monumental task, with only limited success. I can’t imagine what someone who is attempting to quit smoking, or trying to become a more positive person goes through.

Awareness is the first step, though, and some people do not even choose to be aware of their own habits, or ways of being that may need changing. Of course, if they are happy with who they are, and everyone else be damned, that’s perfectly fine – we all have free will. But that person also must accept the possible consequence that all of those “damned” people may not stick around for too long.

So who cares? Well, as one who is soon to be joining households with a long-time bachelor, I do. Change is inevitable, don’t you think? A friend of mine who went through this process a few years ago (and is still, as it is an ongoing process) said the other day, as I was talking about this very subject, “He’ll change. You’ll see.” In fact, I think we both will. We all will.

It takes a little bravery on the part of a good friend or partner to bring up to the person that their habits or ways of being may need to be considered. That loved one must realize that an argument will most likely be the outcome, because most people will react defensively. If they truly love you, though, they will consider what you have said, and will really begin to think about changing his or her own behavior. In fact, that love is another ingredient for change. We make adjustments for the ones we truly love, don’t we? We want them to be happy, and usually find it within ourselves to contribute to that happiness. This, too has been my experience, already in this process. You have to truly care about each others’ feelings, and trust that your partner isn’t trying to hurt you, but bring your attention to something that could make your lives together a little more harmonious.

Trust. Love. Desire. Hard work. Strength.

Sounds like a recipe for a good marriage to me.

What are your thoughts?

Tackling a Few Myths About Autism

Posted on February 7, 2013 by simpleijustdo

How can there still be so much misinformation about autism? I understand that there is a lot of research going on, and there is still a lot that is unknown, but really? Here are a few common misconceptions:

People with autism do not have empathy.

My son has empathy. There have been times (like on my birthday a few years ago), where I thought he lacked a shred of it, but there have been times that he has comforted me when I was crying or upset, or just needed a hug. In fact there are many who will say that people on the spectrum have too much empathy, and that is why they have to distance themselves from others, because they just feel too much. I particularly like Diary of a Mom’s post on this subject.

People with autism are either really good at things or really bad at things.

I believed this one for awhile, too, thinking The Boy was just really, really smart. At everything. And he is extremely bright. But you know what? He doesn’t get math too well. He has a great ear for music, is a wonderful speller, doesn’t like to read a whole bunch, although he can, and at a high level of comprehension. But math is not his best subject. I used to think it was because he didn’t like it, which is partly true. Truth be told, he struggles with it, and I’m not sure I can say it’s just because he’d rather be playing video games. But he doesn’t fail math either. In fact, he usually gets Cs.

People with autism do not have good eye contact.

This is one of the reasons I was not so sure he was on the spectrum in the very early days. In everything I had heard, this was the number one “sign your child may have autism” and it just didn’t bear true for The Boy. He was a happy, giggly boy, and did not avoid eye contact as an infant, toddler, or small child. It is more apparent now, but this is not a hard and fast rule for all children on the spectrum, by any means.

People with autism may not have it forever.

This site, which attempts to address some myths about autism, actually has this listed as fact, rather than a myth! This is basic stuff, here people. There is no cure. Autism is a neurological disorder, and you cannot “fix” a neurological disorder. You can, with early intervention and therapy “retrain the brain” to function more typically, but autism is for keeps. And this “research that shows you may outgrow autism” consists of one study. With fewer than 40 participants. What’s really at work here is those early interventions and therapies allowing those with autism to be able to function more typically in society, rather than not having autism anymore. They just hide it better. (Won’t it be a great day when our children don’t have to hide their true selves?)

What are some other myths you’ve encountered?