Yay Autism? Not This Mama!

What do you think of when you hear the word autism?  The movie Rain Man with Dustin Hoffman playing a savant who counts train cars or toothpicks in an instant and screams when he can’t watch his favorite show at the correct time?  Or maybe  a higher functioning child who is in regular classes at school but just needs some help learning to “fit in” ?   Or the smiling,  non speaking child who just seems to be in her own little world?

Autism is an umbrella diagnosis. It runs the gamut from high functioning (termed aspergers) to the point where except for a “quirk” or two, you’d never know the person was on the spectrum, all the way down to “low functioning” where the child or adult does not speak, is not toilet trained, and is hard to engage. And there are many, many stops along the way between the two ends of autism. The old saying goes, if you’ve met one person with autism, you’ve met one person with autism.  If you gathered 100 people into a room that held that diagnosis, there would be similarities, but likely each would be on a different point of the diagnosis.

The cause(s) of autism are up for debate. There are many conjectures, but very few real answers. Is there a cure? No. There are, however, hardworking parents, families, caregivers,  and professionals who do their best to help the individuals figure out this world and their place in it.

During April, which is Autism Awareness Month,  you’re likely to see the blue lights, the puzzle pieces, the Yay Autism  shirts, slogans, and so forth. Those are all good and I support, encourage, and participate in a lot of it. But what you’re not likely to see is the ugly, down and dirty, real  aspects of autism that may be off putting. Or you may have seen it in public and held your own thoughts about it. A few of you may have been so bold as to give the parent of caregiver your opinion on the matter.

The truth is,  no, not all people with autism are savants. While there are some,  many won’t  play the piano brilliantly by ear  or figure out math problems  in  a heartbeat or run a multi billion dollar corporation.

Another truth?  Autism does not go away at the age of eighteen. But some insurances must think this is the case because in at least one state, if not more,  psychiatrists hear the words Autism, over 18, and Medicaid, and the answer is Nope, sorry. Can’t help you.  Are there some that will? Yes, and they have a waiting list so in the meantime you figure it out.

Yet another truth:  If you have nothing good to say, don’t say anything. Don’t stand and stare, either. Go on about your business.  If you see a child or an adult “totally losing it” in a public place, think what you will but keep it to yourself. It could very well be a person on the spectrum who just cannot handle things right now. Mom and or Dad, or a caregiver, is there, either helping them to calm down or getting them out of there so that they can calm down and continue with the day.   Not always do we know what sets off a person on the spectrum. The buzzing of the  fluorescent lights, someone’s overuse of fragrance,  the conversations, the music, the bright light itself, are just a few things, and can be overwhelming enough for a neurotypical person, but most times we can tune out a lot of those distractions.  Those on the spectrum may have a harder time with that.

Well, shouldn’t those  kids (or adults) be kept home or better yet, in an institution?  Last I checked, the calendar told me this was 2018.  And yes, I’ve heard a few people tell me to my face that my child needed to be institutionalized.  No, he doesn’t. At least , not yet.  I know there are parents who have had to make that decision because it was just too much to care for their child at home anymore. And my husband and I may eventually have to make that decision, if there is something available. Many times there isn’t.  But until then, please keep that opinion to yourself.  Parents dealing with a meltdown don’t need the added stress.   But quite honestly, the one you saw having a meltdown  is probably just having a bad day. We all have them, we just handle them differently.  Part of a caregiver’s job, as well as some professionals, is to teach them how to deal with day to day life.  The child can’t learn that sitting at home every day.

The ultimate truth is, parents of a child (or adult child)  have to deal with meltdowns where the child tries to self harm or tries to hurt others. Not every parent has to deal with it , but some do. Some of us also have to negotiate seizures, pica,  OCD behaviors and the list goes on. There are times when I personally think I’d be safer as a lion tamer. But this same child  who is trying to deal with life and communicate the best he can that something is wrong, is most often a sweet, easygoing young man who smiles, gives high fives,  sings to himself,  loves music, and occasionally gives hugs.

I don’t always handle the meltdowns properly. I get frustrated beyond belief  because I feel like I’m in this fight alone, when I know that I’m not. I do have my husband, but it’s usually tag team or “hang on and do the best you can because I can’t leave work” type of thing.  I’ve wanted to give up many times  because a stay at home mom doesn’t always get a break. I’m so grateful for two very kind, loving sisters in Christ who have gotten me out of the house a time or two so I can catch my breath and refresh for a little bit.  It is much needed, much appreciated.

The words spoken today are not meant to garner pity. Anything I say here is simply because I need to talk and maybe someone will listen. My husband and I constantly rattle the cages of the doctors and will continue to do so until something  gives.  I hate autism. I despise it and the bffs it tends to bring along with it– OCD, seizures, digestive issues,  etc.   I love my son.  My “yays’ belong to Baby Bear, who isn’t  a baby at the age of 25, but the name still fits. My yays come when I hear him call me Mom (that’s rare!), or when he gives me a hug out of the blue and it’s not a ploy for cookies, when he does something simple like go to the bathroom on his own.  I love him, not the diagnosis.





The Faith of a Child

I love children, especially if they are about 6 or 8 years old or younger. More specifically, I love their innocence,  honesty, and their faith. Have you seen a little kid’s faith? They don’t sit and fret about it, they just know . My brother has that faith.

Robert is older than I am. He’s the big brother. However,  in many ways, because of his disabilities, he has the mind of a kid. The age of that kid varies, if you ask me,  because he jumps from watching the lineup on Boomerang to wanting to drive and have a place of his own.  He can cook a few things,  keep an eye on Baby Bear for me for a few hours,  and help around the house.  But the thing that impresses me most, is his prayers.

I will  admit I’m not the most patient at times when I ask him to bless the food at lunch time.  Especially if Baby Bear is home. Baby Bear isn’t known for waiting long if he’s hungry and Robert is not known for brevity. He prays for anyone who has a birthday,  current  needs, and anyone on his heart. And then he prays the blessing over the food.  Nothing wrong with that at all,  Baby Bear and I get a little antsy, but I’d rather he continue on because that’s who he is.

What really impresses me is his heart for people.  If he knows  someone is ill  or hurting in some way, that person is on his prayer list –morning, noon and night until he knows that an answer has been given. He will ask , sometimes almost immediately,  if you’re feeling better, but that’s how his faith is. He knows that God answers prayer.  I think this is a very good way to be. I don’t know about anyone else, but I know this is a lesson I need to learn. Continue asking, never wavering in the faith that God answers prayer.

The Care and Feeding of a Baby Bear

19237803_10155419571546100_7244161556487186176_oPeople hear me talk about my Baby Bear and one of the first questions they ask is, How old is Baby Bear?  I say with a smile, he’s 24.  He’s my youngest, and he just reminds me of a cuddly bear most of the time. He can also have the strength of a grizzly at times. Thankfully those times are rare.

Right now my young man is resting on my bed. He was just in the kitchen when a seizure hit.  Those are happening two or three times a month these days, even with the medication he’s on.  He sees his neurologist next month and we will go through the twice yearly routine.

I’ve been watching my young man for a little while now, especially after he made it quite clear  he didn’t like the loud box fan in one of the rooms. We have room unit air conditioners in a few rooms, but one is in need of a little work. Baby Bear had the habit of turning down the fan, and then finally kept turning it off completely. When he was finally left alone for five minutes he ripped the cord out of the box and threw the whole contraption outside. For a nonverbal adult with autism, he got his point across clearly. So now we get the AC in that part of the house fixed and/or find a quieter fan that he can deal with.

It took me a few weeks of mulling that over (I’m a little slow to catch on sometimes) but I finally realized WHY he was so adamantly against that box fan. It’s the same reason he (barely) tolerates trips to Walmart or other busy stores. It’s too noisy!  Although I can’t really prove it, he has a hypersensitivity to sound. He can hear the hum of fluorescent lighting, and the buzz of other people shopping. It bothers him!  For some, there are headphones that block out a lot of the noise but that won’t work with him. He won’t tolerate anything on his ears.

Most any time at home he can be found in his room or on the couch, depending on his need for interaction. The last few days though, he’s chosen to stay very close to his Dad and me. He wants that physical connection of his head leaning against one of us. He’s quieter than usual. It makes me wonder what is coming up next.

As for his doctors, I’ve come up with a new plan of attack. I’m setting up a calendar right along with the writing down of behaviors and seizures. On the calendar i will place a sticker each time he seizes. The calendar will be the first thing I show his doctors. When it is right in front of them, perhaps then someone will pay attention. I know that neurologists really don’t know a lot about seizures or why he keeps having them. The medicine is pretty much a guessing game. Hopefully it will work, but maybe it won’t. I will keep searching for answers.

On a typical day, he knows his usual routine.  He knows when the bus comes and he’s ready to head out the door to be with his friends. That can be explained. Other than different outings, his days are pretty much the same five days a week, much like the rest of us. But mention that something is going to happen at a specific time, and he takes notice. For example, years ago when he was 9 he was in the hospital taking treatment for lead poisoning. That very first day of it the doctor said that it would stop at 4 o’clock and he could go back to his room and eat and rest. Right on the dot of four my son was taking the tubes out–or at least trying to. No one mentioned the time. He’d never been taught to tell time but he knew.

That’s my boy though. Always full of surprises.  I feel so blessed that he is mine.  He’s taught me so much in these 24 years, and I am pretty sure he will continue to do so as time goes on.  Given half a chance he has much to teach others as well.  He’s a happy, healthy young man who happens to have autism and seizures. He has his moments when he is angry or upset and can be hard to manage at times. Sadly, some choose to focus on the “can be” and all but ignore just how quiet and peaceful he actually is.  Yes, he may have a seizure. Yes, he may have a melt down.  In both cases, unless you can help, stay calm and stay out of the way.

He is not a monster, not an animal locked up in a cage at a zoo. He’s a human being, capable of loving and being loved. He has a harder time maneuvering around this modern world than most. He doesn’t care who the latest celebs are or what the newest techno gadget is on the market, but he will sit and listen to music with you for hours.  You name it and he will probably listen to it, although his favorites are Oldies from the 60’s,  disco,  Michael Jackson, and Latin hip hop. Go figure.

While safety can be an issue with both seizures and meltdowns,  I honestly don’t think that those aspects of his life should be the only things seen and known about  him.  I don’t care much at all about awareness. I don’t. The focus should be on education and plain and simple compassion.  This next statement will be a bit controversial but I’m going to put it out there anyway:  Focusing only on the “possible”  is just as bad as seeing only the sin in someone’s life, and not the person.  He is my son; he is a human being; he is a child of God. He is NOT  Autism and he is NOT Seizure disorder. Those do not describe him, they only name his diagnoses.  How sad this world is when people are seen only by labels instead of  the whole person they really are. Autistic. Disabled. Conceited. Prideful.   Education is the key. Ask questions. Read up on what you don’t know. Take a class.  Speak to him.  Show him that you truly care.

And that’s how you care for a Baby Bear named Jesse.

Attitude Adjustments: Before Small Matters Become Huge Stumbling Blocks

Way back in the day Hank Williams Jr had a hit song on the country stations called “Attitude Adjustments.”  It was a lighthearted view on people who needed just that, an adjustment.  It comes to mind now and then, when I see something that needs to change. This time, the one who needs changing is me. Or, at least, it’s my attitude that needs adjustment.

Some may call it mere coincidence, but I prefer to call it providence. I don’t see another word for it. I have a list of scripture verses that I collected as I began my war journal journey, most  gleaned from Youtube videos of women sharing their own prayer journals / war binders. Today the verse was Psalm 61:2

From the end of the earth I will cry to You,  When my heart is overwhelmed;  Lead me to the rock that is higher than I.

Bam. Right between the eyes!. Those are king David’s words, but it’s exactly how I feel today.  I read the whole psalm and it resonated with me.  My heart is indeed overwhelmed today. A young son whose behavior (not the right word for it) is still a mystery to me –and the doctors;  dishes and debt piling up (hospital bills, anyone?);  the Go-Go’s taunting me with a “Vacation” that isn’t going to happen. C’est la vie, dahling. C’est la guerre.  Life happens.  But it still hurts.  And the biggest hurt? A conflict with a sister in Christ.

Have I talked with her about it? Not yet. Will I discuss it here? Nope.  This one involves only God, her, and myself. So why am I not discussing this with her?  Because I’m not ready for that conversation yet. I need to sort this out with the Lord first. And I need to adjust my attitude.

Hear my cry, O God;

Attend to my prayer,

From the end of the earth I will cry to  You,

When my heart is overwhelmed;

Lead me to the rock that is higher than I.

For You have been a shelter to me,

A strong tower from the enemy.

I will abide in Your tabernacle forever,

I will trust in the shelter of Your wings.

Psalm 61:1-4

That’s where I am right now, crying to the Lord. I also discussed it a bit with my husband last night because what happened stung a bit.  I admit, anger did seep in a little.  My feelings do get a little hurt now and then.  In the past I’ve found it easier to be angry and say or do something about it rather than just to acknowledge the “Ouch! That hurt” that I’m really feeling.  Hence the need for the attitude adjustment on my own part.

My husband suggested trying to see things from her perspective.  Take into account her life, her age, her spiritual age, her experiences in life.  Some of this I know, some I can only guess at. Did she realize that she hurt me?  Was it intentional? Probably not. Does that make the hurt any less? Not really.

But if I had gone to her in anger, the problem would have escalated. I had a retort I could have used (it came to me a few hours after the incident.  I have a hair trigger tongue at times but my brain isn’t always as fast as my mouth is).  If I’d done that, she would have gotten angry.  Others may have gotten involved. All over something small.

I do need to have a conversation with her because I don’t want strife with anyone, especially not a sister. It was still on my mind this morning so I did a little search on attitudes.  Some of what I found:

  • 1 Corinthians 16:14   “Let all that you do be done with love.
  • Romans 14:19   “Therefore let us pursue the things which make for peace and the things by which one may edify another.”
  • and Ephesians 4:31, 32:  “Let all bitterness, wrath, anger, clamor, and evil speaking be put away from you, with all malice. And be kind to one another, tenderhearted, forgiving one another, even as God forgave you.

Be kind to one another. Tenderhearted.  Forgiving. Those aren’t always easy. But it is what Christ expects.  And I don’t want to lose my soul, especially over something small.

Faith, Patience, & Journaling

I’m going to tell you a secret that very few people know: I’m not a very patient person.  I know, right? Shocked me, too. No, not really.  I knew that about me. Although I can hold my tongue in some cases, and I can breathe through certain things,  I have a few hot button issues that set me off like fireworks on Independence Day.

Because I realized it’s (past. WAY past) time I reigned in my impatience, anger, and fear, among a few other things, I began to think of  ways to help me relax and be the person I want to be again. The person more like what God wants me to be: kinder, gentler, more patient (there’s that word again!).

I do not consider myself an artist by any means but I do love to play with stamps, inks, paints, you name it. And I love to write. I’ve been writing off and on since at least the fifth grade. But for a long while now, I stopped both. Baby Bear needs me. The house desperately needs to be cleaned. We have to…. Well, you get the picture.  So when  my niece ended up in the hospital, I spent a lot of time with her. Hospitals are lonely places, y’all! Not fun to be there by yourself with only medical staff for company.  Hospitals are also boring, so I brought along a craft item or two. (Hubby said it looked like I was moving in.) And we played. We made bookmarks out of  inks, stamps, and washi tape on tags. It was fun!  And we watched videos of other people creating art.

My beautiful girl got better and was sent home. I continued watching videos of people creating. I was also looking high and low for my brayer because I wanted to play some more, this time with a gelli plate. I’m beginning to think Baby Bear did away with my brayer so that little project will have to wait.  And then… where there are suggestions of what to watch next, planners came up.

I have a messy, creative mind (and house ) but I crave order and organizations. Plus planners mean creativity and writing! Yay! And off I went, chasing another bunny.  I already have a planner, which I try to gussy up at times (it came with boring, office like paper. I’m not boring, office like kind of people. I’m sorry, but I need color!). Sad part is, not a lot of paper to do my planning on. I grabbed a notebook and kept the dates up in the planner and planned my days and dreams in the notebook, all the while drooling over planner set ups on Pinterest and Youtube. Then I saw the link for War planners.

War planners, Bible journals, Faith journals, all are basically the same thing. Can you see where this is going?  Off I went, hopping down the bunny trail! And that same poor notebook got another use. I wrote down scriptures that I wanted to look up, began keeping sermon notes in it, prayer lists, the whole bit. I’m loving it.

All of that rambling just to get to this one point. Today  I glanced at some War journaling notes and I had for some reason written down Psalm 46:5.  I wanted to look that up straight away. I’m not big on signs or stuff y’all, but I opened my Bible exactly to that page! There were no bookmarks there at all. It just happened. I had marked that whole Psalm in my bible before and I read it. All 11 verses. Three times.  I wrote down key verses in one section of my notebook and copied down the entire Psalm in another section.

God is our refuge and our strength, A very present help in trouble.  –Psalm 46:1

The Lord of hosts is with us, The God of Jacob is our refuge. — Psalm 46:7  and 46:11    Did you catch that?  That statement is so significant, it’s in that psalm twice.

Be still and know that I am God.– Psalm 46:10A.

Y’all, I needed this.  We have something going on at home and I am battling hard to trust and find wisdom and understanding so we can figure this thing out. I’d been having a good day for the most part up until this piece of news was presented to me. And like the patient person I am, I threw a fit. A good old fashioned hissy.  It wasn’t pretty. But I’m willing to learn from it.

I still don’t have an answer to our problem. I am calmer about it now though.  I know that the Lord is in control. That’s all I need to know right now. This is one of those learning times. I have a lesson or two being taught to me (can you guess what one of them is? LOL. I think that one is ongoing.) and with God we will get this.

How about you? Are you a patient person?  Or are you a hurricane Annie like I am, blowing all your energy out and then calming down for the solution? I’d love to hear from you.





Karate Class

Tuesdays and Thursdays in the Life at Home household are extremely busy, just as it is in your homes. Ever since my brother moved in those have been karate days. We had gotten into a habit of either driving him to class or letting him walk in good weather (the distance is less than two miles). While he was at class, hubby and I would get dinner ready or run errands. Then I started getting interested in losing weight and getting in better shape. Last September I joined that class. It is so much fun! But it’s also a lot of hard work.

Since I’ve joined I’ve already progressed to yellow belt (Yay me! lol). My brother has just recently achieved green belt (Woohoo! Go Bob!) And I’ve already taken nearly two months off due to a needed surgery in April. I will be returning to class sometime within the next two weeks after I get the go ahead from my doctor. I am all at once excited and apprehensive because I haven’t used these tummy muscles in about 8 weeks or so, and I know I have a lot of work ahead to to catch up to where I was.

Also, I need to retrain my brain to get meals on the table, hopefully before 9 pm on karate nights.  Can you say slow cooker? Can you say freezer meals?  I am so not organized when it comes to meal planning! But I’ll get there. I am determined to get organized again.

The first three are Robert during his recent promotion test. The last one of course,

is me after earning my yellow belt. In our class, the uniform is not required for white belt.


So what keeps you busy durin the week?  Tae Kwan Do classes like Robert and I take?  Little League?  Maybe you take a pottery class.  What keeps you busy and how do you keep everything running smoothly? I’d love to hear from you.

Why Don’t You Get a Real Job?

Why don’t you get a real job?

Wait. What? Did you really just say that? I’ve heard that line from various people since Baby Bear was actually, well, a baby. He’s now 23, by the way, and taller than I am (a fact that he still loves to point out in his own wordless way). It’s hard for me to realize just how much he’s grown over the years. But in so many ways he’s still very much my cub. I have real job, thanks. I don’t get paid for it, but it’s a career that I enjoy and never want to give up.

My  day begins usually somewhere between 4:30 AM and 5:15 AM. Not by choice, mind you. I’m an early bird from way back but I’d prefer to sleep in until 6:30 or 7. Nope, these days I’m up before the alarm goes off because either the bathroom is calling my name or my young man is up and foraging through the fridge or happily throwing something out his window. Or both. Mostly he’s fine on his own for a little while, but sitting still for more than five minutes usually isn’t going to happen. I don’t believe in using the TV as a babysitter, and neither does he. It doesn’t hold his interest long. He’d rather rock out to the oldies. He loves music of almost all genres, especially Michael Jackson, seventies disco, and latino hip hop. Go figure. He also likes classical music.

Once I’ve got him occupied if he’s awake, I’ve got breakfast and laundry going, and sometime soon afterward I remember that I’ve gotta make lunches too, for the cub and the hubs. The Hubs is not a morning person. He  wakes up in time to shower, eat, and have a little conversation before he goes off to work.  Why can’t he make his own breakfast and lunch? He works hard at his job plus he does quite a bit around the house with and for me. Taking care of him in those ways  is something I like to do.

Next, my job is to help get Baby Bear ready for his day. He’s good at handling most of that, but his idea of getting dressed means finding the shorts he wore the day before and throwing on the first shirt he can find–spaghetti stained and inside out as well as backwards. Yeah, that’s not gonna happen on a school day. After making sure his clothes are clean and at least facing the right direction (sometimes the seams on his shirts aggravate him so I’m not going to complain much if his shirt still ends up inside out). His shoes–hey, at least they are on his feet. Yes, I know they are on the wrong feet (another sensory issue as far as we can tell) and yes I know those shoes look like they need to be thrown out. Trust me on this, the boy has foot issues. The longest I’ve seen a new pair of shoes keep laces or the “tongue” is about two weeks. After that, all bets are off and he’s working on getting those shoes just the way he likes them.

Once Baby Bear is out the door its my time. That’s the time for working on  my business,

my writing, and getting some housework done. And yes, I use that time to relax a bit as well. But I’m also cooking, giving word definitions and word pronunciations to the only person in the house who reads more than I do, my brother. I keep him going during the day and I probably do more than my share of nagging, because I realize that I am now mom as well as Sis. It’s been two years since I assumed this other responsibility, and I struggle with the balance of when to be Sis and when to be , well, bossy.

Two -forty PM or thereabouts brings the bus and the cub is home -needing a snack and a little down time.  Do I love this life? Yes! Do I complain sometimes? Yes. Do I want to give up and run away? At times, yes. But would I give all this up? No way. As a mom and caretaker to two who will always need care and supervision to some degree (one with autism, one with mild cp, both with some developmental delays) I have concerns about the future and what could happen. But I’ll discuss that at another time. For now, this is my real job. This is what fills my days. Thanks for listening.


My family. The (not so) Baby Bear, The Brother, The Hubs.