How to be Overwhelmed.

I haven’t been on here in a while because I’m the victim of an overwhelming life.

I’ve gone back to school to get my Bachelor’s of English. It’s online school and it’s consuming all my time, that is all my time that isn’t taken up with two part-time jobs, the usual housework, and then there’s autism….

My son is 13 now. He’s been getting steadily more aggressive the older he gets, not out of malice, but because of the normal teenager stuff. Mood swings, rages, defiance, it’s all there. Unfortunately it gets dangerous. I am at my wits end trying to figure out what to do. My husband is home now, but he’s only here when he’s off work. Lately the situation with our son has started interfering with his job and mine.

So until life is somehow brought under control….I don’t know when I’ll be able to post.

Keep praying..hoping…anything… We need all the help we can get.

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Going Old School

I don’t mean doing it the old way. I mean I’m old and going to school.

I took a break from college a million years ago, and by that I mean 23 years ago. I could tell you a lot of excuses about why I didn’t go on to get my Bachelor’s degree, but the honest truth was that I was scared. I have never been good at moving and grooving in crowds of people far from home. At the time I was barely at the point where I could find my way through a party that involved people I knew much less strangers. I lived at home during my college years because of cost. I only lived 30 miles from the college and it made more financial sense to just commute.  At the time I thought it was the perfect answer, but now that I’m older I think I made a mistake.

Most kids leave home and live in the dorm. It’s sink or swim. Learn to adapt or learn to adapt. I had the luxury of  playing it safe and staying home. It allowed me to stay comfortable while navigating the gateway that college represents to the scary adult world. When it came time to move on to a larger college for my Bachelor’s, I panicked. I thought about living with all those strangers and trying to handle living in a huge city after growing up in a small town and I couldn’t face it. So I made excuses…

Too expensive, tired of school, needed a break, wasn’t sure about my choices blah blah blah.

For years I have paid for my fear and never admitted it. Well, here I am admitting it. I have had nothing but ground pounder kind of jobs. Motels, restaurants, retail, phone work- I’ve done it all, but where did I get to?

No where.

So here I am, 42 years old. Lots of bills and no retirement. Nothing but fear ahead of me and the consequences of fear behind me. The only thing to do is change it. The only way I can see to change it is to go back to school. I’m going to get my Bachelor’s degree. Maybe it’ll help me as a writer, maybe I’ll go into teaching. Hard to say exactly. The world is a funny place. Whatever it is, step one is going back to school.  Online school.

I have no idea what I’m doing with online schooling. I’m not the best when it comes to computers. I love pencils and paper and classrooms, but I live in the middle of rural Montana. It’s a little hard to get to school with travel time and still needed to pick up my kiddo from school, so online is my best option. I guess I’ll be leaning more than just the subject matter.

My family is supporting my crazy idea. My daughter told me she is proud of me for actually doing it. She says I’ve been talking about it for as long as she can remember.

I’m just scared.

Again.

I don’t know if I’ll be able to concentrate on the classes during the summer when my son is home all day. I’ll probably have to do some pretty late nights. Later than usually, so that means maybe until 3 am sometimes. I’m scared that I won’t be able to pay for it after I actually have my degree. Student loan debt is no joke. We are already drowning in it from my husband going to school. What if I can’t work because of my son? Autism waits for no one. What if I’ve gotten dumb over the years and can’t pass the classes? What if I’m wasting my time and money because my life is half over and there isn’t time to accomplish anything?

I know some of these are ridiculous fears, but they are in my head. I don’t know what is going to happen. I am right back where I was when I stopped school all those years ago. I just hope that life experience will give me the courage this time to move forward in spite of the fears.

Wish me luck!

Absence and Changes

I apologize for the long absence. Life has been difficult lately.

Still can’t seem to get school under control. My senior is still struggling to get sorted with Personalized Learning. The constant changes and rearranges the school has been implementing has put her in a state of mind where she couldn’t care less if she goes to school any more. That is a terrible place to be especially for a senior, they tend to be biting at the bit to get out of school anyway. Some of her classmates are doing alright, but there have been quite a few kids who have transferred to other schools and a couple that have dropped out. It’s a sad state for education.

My son isn’t having  a much better time either. They finally found an aide, but because of things being unsettled he had a couple of dangerous meltdowns. So now he has two aides. However, things remain unsettled. The school can’t decide what they are doing and hovering around the whole mess is this sense of secrecy. No one is communicating. I keep hearing, “there are going to be changes, but no one is telling us” and “we’re not allowed to talk to you.” That is the part I really don’t get. Why can’t anyone talk to me? I’m his freaking parent! He doesn’t communicate well because of his autism, the only way I know what is going on with him is if someone tells me. Why make a hard situation harder?

It breaks my heart that my son can be in a perfectly good mood all morning, walk to school happily, then walk through the door of the school and immediately start hitting himself in the head and poking himself in they eye. Nothing happened. No trigger besides walking through the door. What does that tell you about the environment at school?

However there is a light in this dark tunnel.

Because of the big heart of one of our neighbors, my husband has been hooked up with a local job.  It’s one of those “I know a guy who knows a guy” situations. Long story short. My husband is home! He starts at his new job this coming week. It’s going to be different. He’s been working in the wind industry for nearly a decade and he’s going to miss it, but as he keeps saying “family first.” Autism, puberty, and stress at home make it necessary to change.

I am stupidly excited about him being home, but I’m also apprehensive. He’s been on the road for nearly 5 years and we’ve only seen each other 8 times a year in all that time. We’re going to have to learn to live together all over again. I almost want to put out my hand and say, “hi nice to meet you.” Routines are going to have to adjust and space with have to be shared.  I know that I’m going to have to learn to give up a lot of control. I’ve been mom and dad for quite a while now. It’s going to be quite an adjustment for all of us.

Hopefully with someone to share the stress with I’ll be able to get back to writing and maybe start feeling like a human again.

This is Autism, but I Still Love Him

We’ve been having a rough summer.

My son always has trouble with summer, because he is autistic. The normal trials of summer bother my son too like boredom and cabin fever. In that he is like all other kids, but there are a lot of other issues that come into play.  For example, thunderstorms. He’s terrified of them and yet gets upset because we aren’t having a storm every time there is a cloud. There is also the heat. He loves to be outside but the heat gets to him as well as the allergies that come with summer.

This year has been particularly bad because not only has it been over 90 the whole summer but the air has been filled with smoke from all the wild fires. Outside is not healthy. Inside is boring. It’s a brewing storm. Then you add in things like fireworks from the 4th of July. Loud unexpected noises that sound like thunder happening throughout the nights makes him very edgy. For weeks after the 4th he jumps at every little sound.  He wears sound proof headphones, but the fear is there even if the sound is not.

It finally came to a head one day when he hadn’t been sleeping well. It was a couple of weeks after the 4th and we’d been fighting to go to bed every night . He hadn’t been sleeping and neither had I. Bad combination. He was playing video games. (He likes mini golf) and he couldn’t go into a shed in the background. I told him that it was just part of the scenery and he got upset and started to bite his arm. I told him to go into his room until he could be calm. In the few seconds it took for me to set aside the game controller  he had gone into  his room and slammed his head into his window with enough force to splinter it. 

It didn’t hurt him any, although he had some broken glass in his hair. I had to first get him calm and then get all the glass cleaned up. But he was upset to begin with, then he was upset that he had broken the window, then upset that I couldn’t magically fix it, and upset that I was upset.  It was a long time before we could get sorted and then right after that a thunderstorm hit. Needless to say it wasn’t a good day.

It was a this point that I began to think about medication. I hate myself for thinking about it. I don’t like pills. I don’t like how I feel when I take them and usually I have bad reactions to them. So the thought of putting my son on them when he can’t tell me if he is feeling weird makes me shudder. We had tried him on medication once a long time ago when his violent outburst were getting out of hand and it had turned him in to a weeping pile of mush that was still violent. We gave up, threw away the pills, and learned to live with the outbursts.

But he is getting bigger now. He’s 12. He’s almost as tall as me and weighs 120 lbs. So off we went to the doctor. After a long discussion, the doctor decided that it was probably anxiety that was the route of the problem. If we could get that under control then he might not be a danger to himself. I was willing to give it a shot even though I was wary of the possible side effects.  The second problem was sleep. I found some chewable melatonin and I hoped that would help.

The first week was amazing. He was going to sleep because of the melatonin and although he was still getting up in the middle of the night, it was still an improvement. The Sertraline was working. He was in a great mood. We had to make a trip to Helena, which is a two and a half hour drive, for my daughter’s orthodontist appointment and I was expecting a blow up when we had to go home. But he was great shopping and he was great coming home. I didn’t even know how to handle a trip without a melt down.

It was great while it lasted.

About a week into the medications, we were watching tv during dinner and the character’s gloves had run away and gotten into some trouble and were sent to jail. In the blink of an eye, my son exploded. He was pounding his fist on his tray knocking food everywhere and then started to bite himself and hit me and his sister.  It was weird! Usually there is some warning before a meltdown but this was like a lightening strike out of a clear blue sky.

Over the next couple of days he started to get worse. He just kept getting really angry over such small things.  Then the big blow up came. My daughter had another dentist appointment this time to get five teeth pulled. (I know that’s a lot, but her regular dentist hadn’t been doing his job and let 4 years go by without telling us that she was going to have a problem with her baby teeth not coming out. So now we are in dental crisis, but that is another story.)

Now here was my first mistake. My son is scared of the dentist but is also really fascinated by it and as soon as he knew my daughter was going, he started asking if he could have an appointment. I told him he would have to wait for his appointment. The longer we sat in the waiting room, the more agitated he became.

Here was my second mistake. I should have known this trip to the dentist would be hard on my daughter and I should have found someone to watch my son while I took her to the dentist.

You have to understand at this point that my son doesn’t handle other people’s pain well. When he sees you cry he gets upset because he doesn’t understand the reason. Often he will attack the crying person. I am assuming because he believes that will give them a reason to be upset so it makes sense to him in a backwards kind of way. Needless to say our family tries to keep the crying to a minimum and let it out only when he isn’t looking.

Unfortunately my poor daughter couldn’t help it. She’d never had dental problems before so this was her first experience in having teeth pulled and five at one time was traumatic. She couldn’t help it she cried.  This set my son off. He didn’t understand why his sister was upset.

Here was my third mistake. My daughter wanted to get somethings from the store despite how she was feeling after the dentist. I warned her against it but she insisted that she was fine and she could handle it. So I stupidly listened. Half-way down the street my daughter changed her mind. She was in too much pain and wanted to go home. Before the trip I had warned my son that if his sister didn’t feel up to it then we were NOT going to go shopping and we would just go home. I thought he had understood, but when we started down the street toward the stores and then turned around, he got upset.

Here was my fourth mistake. I didn’t take him to get food.  It was about lunch time when we finished at the dentist. Because my daughter was feeling so awful I didn’t want to make her sit and wait while we ate. Instead I took my son to a gas station and grabbed some of those deli burgers and chips and a bottle of milk and headed out. He really wanted to get food at a restaurant and got upset.

Here is my fifth mistake. I didn’t stop at the car wash. It is a treat for my son when he is good to go through the automatic car wash before we leave town. Again, I didn’t stop because my daughter was feeling so badly.  I should have know better. Foregoing the car wash always causes a melt down. It was the final straw.

From that moment on it was a nuclear fallout meltdown. The drive back from Great Falls in an hour. Usually the meltdowns don’t last more that half an hour and usually we can get him out of it by playing I-spy or something. But this time I think the medication was in play. Nothing would stop him from pulling his sister’s hair or punching her from the back seat. He was spitting and trying to break the window with his fists and his feet. Foolishly I stopped on the side of the interstate to try and switch everyone around so that I could keep my daughter safe from his attack.

We ended up chasing him around in the ditch and trying to tackle him to keep him out of traffic. I’m sure the people driving by thought we were trying to kill him. He was punching and kicking me while I tried to get him to calm down and get back to the jeep. He grabbed handfuls of my hair and ripped some out. Finally we got him to the jeep but he got a hold of my daughters neck. In getting him to let go of her he got a hold of my hair and pummeled my head with his fist. I got kicked in the chest, repeatedly bit and he grabbed handfuls of my skin on my arms before I finally got him into his seat and buckled in. My daughter drove while I sat in the back by him and tried to keep him from kicking her and bashing his head through the window. Unfortunately that put me in the strike zone. He was so deliberate with his attacks. This wasn’t like his normal meltdowns. I kept telling him that I would be okay, that he needed to take deep breaths, that I still loved him and he would be alright, but nothing stopped him.

That was the longest hour of my life.

By the time we had gotten home I was near hysterical with terror and guilt. I had to wrestle him into the house. I sent my daughter downstairs out of harms way and took my son to his room. It was dark and he was still agitated. Then almost as quickly as it started he was back to normal. He wanted a drink and a snack. He sat down and started to watch tv. At that point I was doing my best to stay calm. I wanted to sob and curl up into a ball and shake, but I knew it would only set him off again. I stayed out of the room where I wouldn’t trigger him but also where I could keep an eye on him.

This is the damage that I came out with. I was so  stiff and sore. This doesn’t show all the damage. I have a lot of bruises on my head and legs, but you get the idea.

I am pretty proud of myself. Considering the craziness that we went through, my son came out without a mark on him.

My daughter only had a little welt on her neck. I managed to protect both my kids from harm. I don’t know how, but I did.

I called the doctor when things looked like they were as calm as they were going to get. We went over and the doc was shocked at the level of damage on my arms. He thought maybe we needed to up the dose of Sertraline because it seemed like it was working, and he get me some Risperdone pills to use as needed when things were out of hand. We went back home and I followed the doc’s orders. But over the next few days, my son stayed angry. He was mad about everything. He kept biting himself for tiny little upsets. So I talked it over with my husband and we decided to stop the meds.

 

It’s been three days now and he hasn’t had any blow ups. Well, there were a couple of small ones, but I’m not expecting miracles.

The thing is this is our life. I can’t say I’m not affected. I’m a wreck.  I love him completely and I’m terrified for the future. I’m not scared if him. I’m scared of what he’ll do to others. This whole episode has turned my fears into reality. What happens when he goes to school? What happens if we go to Great Falls again?

I know that it may get worse as he gets bigger. I may end up with broken bones at some point. I don’t want that to happen, but I’m not going to fool myself. This is Autism. This is melt downs. It’s hard. I hope that we can get past this someday and he can have a productive life, but I fear the alternative. That it may get too bad and he’ll have to live in a home where he’ll be doped up and live a miserable existence. I don’t want that either.

Right now I’m not feeling real positive. I’m bitter at the world for the lack of help. I’m angry at myself because I should have known better. I’m disillusioned with my life right now. But it doesn’t matter. This is Autism and we get up every day and keep going. I love my son regardless.

Happy Birthday to my Son!

He’s 12 years old now. It seems hard to believe. 12 years of struggling and fighting to get to this point. It seems longer and yet it doesn’t seem that long at all.  I guess that’s normal. Most parents feel that way. I guess it’s different because it’s been 12 years of Autism.

Life is not easy when you have Autism in your life. Whether you are a parent of or are the autistic person, challenges abound. Let me give you an idea.

It’s been 12 years of communication issues. Sometimes he’s been unable to communicate at all, sometimes he can get across what he wants after a lot of effort. Sometimes it causes so much frustration that he becomes violent.  Sometime we have the same conversation hundreds of times a day.

It’s been 12 years of health issues.  RSV virus, Jaundice, ear infections every few months, dental problems, bruises and bite marks, behavioral issues, attention problems, sleep disturbances and allergies.

It’s been 12 years of sleeping issues. The first six years of sleeping in our bed because of night terrors, then the next six years of sleeping in his own bed but getting up multiple times every night, which means that I’ve slept on his floor more hours than I can count.

It’s been years of violent outburst and broken things. We’ve had to replace a TV, several chairs, and now a window. There are holes in the walls, a lot of broken toys, and quite a few rips in our clothes.

And yet through all this, he has grown and started to thrive. He has friends who adore him. Everyone in town seems to know his name and they always say hi to him. He reads, he writes albeit both really slowly and with difficulty. He loves to tell jokes. He laughs and plays. He knows what he likes and isn’t afraid to tell you. He loves to help around the house and help in the yard.  Although he is usually terrified of new things, he loves an adventure. He’s terrified of storms but can’t wait for them either. He loves amusement park rides even though the surroundings overwhelm him. Animals love him although he is usually scared of them. He’s growing into a relatively well rounded young man.

I know that we have a really long way to go and not all of it is going to be positive. Sometimes every day is a struggle, but I look at how far we’ve come and I couldn’t be more proud of my son. He’s overcome so much to be the wonderful 12 year old that he is today.

Happy Birthday, Bubba!

Coping with Severe Depression

Severe depression is horrendous. 

The NIMH estimates that in the United States, 16 million adults had at least one major depressive episode in 2012. That’s 6.9 percent of the population. According to the World Health Organization (WHO), 350 million people worldwide suffer from depression. It is a leading cause of disability. Jan 28, 2015

350 Million! 

So what it this beast we call depression?

According to the Mayo Clinic:

Although depression may occur only one time during your life, usually people have multiple episodes of depression. During these episodes, symptoms occur most of the day, nearly every day and may include:

• Feelings of sadness, tearfulness, emptiness or hopelessness
• Angry outbursts, irritability or frustration, even over small matters
• Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
• Sleep disturbances, including insomnia or sleeping too much
• Tiredness and lack of energy, so even small tasks take extra effort
• Changes in appetite — often reduced appetite and weight loss, but increased cravings for food and weight gain in some people
• Anxiety, agitation or restlessness
• Slowed thinking, speaking or body movements
• Feelings of worthlessness or guilt, fixating on past failures or blaming yourself for things that aren’t your responsibility
• Trouble thinking, concentrating, making decisions and remembering things
• Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
• Unexplained physical problems, such as back pain or headaches

For many people with depression, symptoms usually are severe enough to cause noticeable problems in day-to-day activities, such as work, school, social activities or relationships with others. Other people may feel generally miserable or unhappy without really knowing why.

Most people dealing with depression turn to modern medications such as anti-depressants. In most cases this is enough to get you out of the pit and moving again. However, for some that isn’t going to work.

Many of those suffering from depression don’t have access to medications, maybe they can’t afford it or maybe medications just don’t work. Some may even make their symptoms worse. I’m one of those poor fools who can’t take the meds because my body won’t metabolize them correctly, so I only get the side effects and not the help.

There are medical alternatives for those of us who can’t do take medications.

According to the Mayo Clinic:

Supplements

Examples of supplements that are sometimes used for depression include:

• St. John’s wort. Although this herbal supplement isn’t approved by the Food and Drug Administration (FDA) to treat depression in the U.S., it’s a popular depression treatment in Europe. It may be helpful for mild or moderate depression. However, it should be used with caution — St. John’s wort can interfere with a number of medications, including blood-thinning medications, birth control pills, chemotherapy, HIV/AIDS medications, and drugs to prevent organ rejection after a transplant. Also, avoid taking St. John’s wort while taking antidepressants because the combination can cause serious side effects.
• SAMe. Pronounced “sam-E,” this dietary supplement is a synthetic form of a chemical that occurs naturally in the body. The name is short for S-adenosylmethionine (es-uh-den-o-sul-muh-THIE-o-neen). SAMe isn’t approved by the FDA to treat depression in the U.S., but it’s used in Europe as a prescription drug to treat depression. SAMe may be helpful, but more research is needed. SAMe may trigger mania in people with bipolar disorder.
• Omega-3 fatty acids. These healthy fats are found in cold-water fish, flaxseed, flax oil, walnuts and some other foods. Omega-3 supplements are being studied as a possible treatment for depression. While considered generally safe, in high doses, omega-3 supplements may interact with other medications. More research is needed to determine if eating foods with omega-3 fatty acids can help relieve depression.

Nutritional and dietary products aren’t monitored by the FDA the same way medications are. You can’t always be certain of what you’re getting and whether it’s safe. Also, because some herbal and dietary supplements can interfere with prescription medications or cause dangerous interactions, talk to your health care provider before taking any supplements.

Mind-body connections

Complementary and alternative medicine practitioners believe the mind and body must be in harmony for you to stay healthy. Examples of mind-body techniques that may be helpful for depression include:

• Acupuncture
• Relaxation techniques such as yoga or tai chi
• Meditation
• Guided imagery
• Massage therapy
• Music or art therapy
• Spirituality
• Aerobic exercise

Relying solely on these therapies is generally not enough to treat depression. They may be helpful when used in addition to medication and psychotherapy.

Some people turn to psychotherapy or go to counseling. Counseling can often be extremely helpful in sorting through the problems. However, not all counselors are helpful. I’ve been to some that just shrug their shoulders and say, “Gosh, I don’t know what to tell you.” Doesn’t really help much.  Finding the right counselor can take time through trial and error. Often this adds to the depression giving a person the feelings of failure or hopelessness.

So what do you do when you are just one person sitting alone in the dark? When nothing has worked and you have no strength left? When you just can’t find the will or the energy to get out of bed let alone seek help? When you are sitting on your bathroom floor exhausted from crying and holding a scissors over your wrist because you are so desperate for an escape? 

If you’ve hit that point then call:

National Suicide Prevention Lifeline at 1-800-273-TALK (1-800-273-8255). Use that same number and press “1” to reach the Veterans Crisis Line.

However, if you are still holding out with one tiny little shred of hope grasping onto the last thread of your last rope….

It’s OKAY!

You’re not alone!

We are here for you, even if you don’t know us. There are those of us struggling along beside you. We can’t see you and you can’t see us through the haze of darkness that seems to surround us, but we are here.

And it’s time.

Time to take a breath.

Time to go out and look at the stars.

Time to let go a little.

Constantly holding yourself accountable for all the problems in the world will do you no good. You are only human and that is okay. Yes, the world around us is going to pot, (haha see the joke there? everybody is smoking it? haha). But what I mean it that the world is going crazy and honestly, honey, you can’t stop it.

Look to your friends. They love you. They are just waiting for you to let them in so they can help. If you don’t feel like you have friends, then just cry once in public and you’ll find them. Believe me, they’re there. Even strangers on the internet are there to help you. There are chat rooms, Twitter feeds, Instagram and Facebook pages full of people going through the same things as you are. You may not have met them yet, but your peeps are there. 35 Million of them, remember?

Honestly, I find that a lot of depression is rooted in three places: our health,  our mindset, and our environment.

1. Nutrition: Our nutritional intake can severely affect our emotions. I know you’ve heard this a lot, but too much pre-processed food with chemicals put in for this and that soak into our bodies and make us nuts. I see this all the time with my Autistic son. If we eat too many meals that come from a box or a can then he gets emotionally unbalanced and sometimes violent or goes through crying fits. If I keep our food on the homemade side then we have a much more stable home life. Omega 3 supplements made a huge difference for me in my depression.  Try checking your nutrition and see if you can fix anything. If you don’t know what to fix, ask a doctor. If you don’t have a doctor then ask our friend Google, there are plenty of nutritional diets out there.
2. Mindset: When I say our mindset, it does not mean that I think it is all in our heads. I know personally that depression is very real. What I mean is that it is in our perceptions of our own reality that make it so hard for us to cope. If you let go of your preconceived notions about what is or is not the standard that you should be living up too, it can help a lot. For example, I has such high hopes for what kind of mom I was going to be. Then Autism came along. I had to give up. I can only do what I can do. Sometimes it’s enough, sometimes not. Sometimes we need to stop and do some self examination of our deepest self. We must ask some really hard questions. Why are you depressed? Is is because you are trying to hold onto something that is beyond your means? Are you living to please someone else’s plan for you life or are you living for you?
3. Environment: Look around you. Is your personal space cluttered? Sometimes just cleaning up your immediate area can help you get a sense of control. It can make things around you seem a lot less overwhelmed and give you a sense of accomplishment. That alone might be enough to break the downward spiral of defeat. Are you hiding away? Sometimes depression comes from too much self absorption. Are you caught up with yourself so much that you haven’t looked around in a while? Seek out others and try to help them. Sometimes it will fill the void that is causing your depression. Human contact can do wonders for your emotions. However, be careful of over committing yourself so you can hide from your problems.

Depression is a many faceted beast with no easy answers or cures. It is a struggle every day, but it is a struggle that you can get through. I will leave you with something my mom always says.

Keep going. Tomorrow may be the best day of your life.

Autism and Wandering

One of the things about having a child with Autism is that they have a tendency to wander. It may be because they don’t realized they shouldn’t and they are in their own little world or it may be that they run from something they are scared of. What ever the reason, it scares the crap out of us parents.

My son has disappeared a couple of times on us while out in public and he has wandered off from grandma’s house and home. I can’t tell you how terrified we were. I live in constant fear that one day he will slip out and we won’t find him. Luckily we live in a town where almost everyone knows my son, but what if….

The lovely people from Quality Life Concepts, our family support, turned me onto the BIG RED SAFETY BOX.

It is put out by the National Autism Association. Which is great resource by the way.

I signed up and donated $10 and they sent me the Big Red Safety Box. In it there was  lots of handy stuff.

NAA’s Big Red Safety Box includes the following resources:
1) Our Be REDy Booklet containing the following educational materials and tools:
A caregiver checklist
A Family Wandering Emergency Plan
A first-responder profile form
A wandering-prevention brochure
A sample IEP Letter
A Student Profile Form
Emotion Identification Cards
Wandering Quick Tips
2) Two (2) GE Wireless Door/Window Alarms with batteries
3) One (1) MedicAlert Bracelet or Pendant, and One (1) Shoe ID tag*
4) Five (5) Adhesive Stop Sign Visual Prompts for doors and windows
5) Two (2) Safety Alert Window Clings for car or home windows
6) One (1) Red Safety Alert Wristband
7) One (1) Child ID Kit from the National Center for Missing and Exploited Children

Sometimes help is actually available. You just need to know where to look.

Optimism and Autism

My son has Autism. He is eleven years old. I have learned that optimism is a trap.

Optimism: hopefulness and confidence about the future or the successful outcome of something.

My husband and I have been married for 20 years. I think we were optimistic in the beginning. We thought that all we had to do was work hard and the world would be ours. The Universe apparently thought that was  a challenge. We’ve been through a lot of difficulties and trials. Life hasn’t always been easy, but sometimes we do alright and sometimes we don’t. Autism has taken us to a whole new level.

I was optimistic that we could handle this new complicated life together, but instead we’ve had to give a lot up including being in the same geographic location. He works away from home because that is the only way we can make enough money for me to be a stay at home mom and still afford all the bills, medical or otherwise. I tried working, but it wasn’t worth it. Child care for a special needs kiddo is hard to come by and I had to keep leaving work to take care of problems that arose with my son.

It hasn’t been easy for my daughter either. She’s had to give up a lot and she’s had to adjust to getting less attention because of her brother. Being optimistic that I could pay attention to both of my kiddos at the same time was unrealistic. I’ve learned that kind of optimism leaded to hurt feelings and overwhelming parental failure. I’ve learned that sometimes I have to find time to devote to my daughter completely even if it means that she  has to skip some school to get it.

Like Sisyphus and the boulder, we start every day at the bottom of the hill.

Day after day, we get up and try.  There are a lot of things to learn when you have a child with Autism; behavioral, medical, dietary, psychological, methods, routines, etc. They all play a crucial role in a stable life. The things that worked yesterday don’t necessarily work today. Sometimes they have the opposite effect. Teachers ask me how to handle my son and I have to say, “Well, that depends on the day.”

Friends don’t really understand why we don’t do things like they do. Most of them feel that I’m being too overprotective and honestly I’m too tired to try and explain it to them. They are always optimistic that my son will be fine. That there will be no problems. Birthday parties, concerts, fairs, we’ve been to them all. We’ve dealt with the migraines and the over stimulation meltdowns and the violence that comes from them.  I’ve pushed that boulder up that hill enough times that I know our limitations. If they want to think badly of me then so be it. 

The teachers at school ask me what my long term goals are for my son. I usually laugh and say, “To get through today.” You have to have optimism in order to have goals, and I don’t.

Optimism has never been one of my strong suits. I’m not one of those people born under a lucky star where everything went right and the world was a bright and sunny place. Things don’t just work out for me. I get by on my brains and my abundance of personality. Things happen. I  deal with them. I’m a realist.

Realist: a person who accepts a situation as it is and is prepared to deal with it accordingly.

Optimism can give you a false sense of reality and make you really unhappy because you are always struggling to meet unrealistic expectations.

I know that we are making progress, but to try and  reach a certain milestone in a certain amount of time is more stress than I can handle right now. Don’t get me wrong, I want my son to learn and blossom into a happy healthy adult, but it will have to happen in its own time. I’m just being realistic. I know that my son makes leaps forward only to backslide. That doesn’t make me try any less. I just takes away the expectations and that takes away the disappointments and the feelings of failure.  No one needs those kind of feelings in their life.

People laugh at me when they ask me, “How are you?” and I answer, “Still alive.” I see it as an affirmation that I’m still here. I’m still trying. I am living for the now taking each day as best as I can. I’ve lowered my expectations to the level of “Everyone is still breathing, so we’re doing great.”

So for those of you out there struggling to be optimistic about your children’s autism, it’s going to be all right. You don’t have to be sunny, or cheerful, or optimistic. You just have to accept your life has changed. It’s okay. All you have to do is love your kiddos. That’s the reality .Go with the Zen approach. All there is is the now. They are who they are and that’s okay. They don’t have to be anything else and neither do you.

Have I Done This Before?

I was sitting in the line for the car wash the other day and I looked down to see my odometer and temperature looking like this….

Both were a repeating string of numbers. And at the same time I realized this explained my life pretty well. My car showed it all: repetition and zero miles an hour. Doing the same thing but not getting anywhere.

Life with an autistic child is often very repetitive and can often feel like you are spinning your wheels a lot and not getting anywhere.

Routines take over. Most days are exactly the same as the previous days and will be the same as the next one. We do the same things at the same time every day. Only the very small details change. Trying something new or going somewhere new can cause all sorts of issues. But at least we get through the day.

My kiddo is very stuck on the same clothes, so he wears the same four or five shirts and the same kind of jeans. Life gets complicated when he outgrows his clothes which is often these days. But at least he is wearing clothes.

My kiddo also has a very repetitive conversation track. We have the same conversation about eighty times a day, every day. Doesn’t mean he can’t talk about other things, he just doesn’t. I think it is easier for him to say the same thing rather than try to have a different conversation and have to struggle for the words. Kind of like reverting to default. So we talk about Moonlight’s (the cat) gray paws, over and over and over. But at least he is talking.

My daughter complains that we have the same meals all the time. It’s true. I’m not near as adventurous in the kitchen as I used to be. It’s too hard. I know you are laughing at me for that, but when every meal becomes a fight and disaster keeps striking while you are trying to cook, it gets old fast. I just want a quiet meal with no fighting. Pick your battles is my philosophy. So we eat a lot of the same things over and over. But at least we’re eating.

We have to go to the same car wash after every time we go shopping. We’ve tried to go without but it always caused a serious meltdown and we have an hour drive to get home. That’s a long drive when you have a Tasmanian Devil trying to destroy the back seat lol. Sometimes we’ve sat in line for half an hour to get through that particular car wash.  But it avoids a meltdown.

So, yeah my car says it all: repetition and zero miles an hour. But it also says that I come more than 83,000 miles and I’m headed west. I may not be moving at the moment, but my engine is running and I’m pointed in a direction. Just because I’m not getting anywhere now doesn’t mean that I haven’t accomplished a lot and I still have the power to keep going.

All in all it seems pretty optimistic to me.

 

Bathrooms and Autism

The bathroom is such a controversial thing these days. 

So many people are worried about who gets to go where. Honestly, I don’t care. This isn’t about that issue. Well, not directly. This is about fear. A mother’s fear. Or could be a father’s fear.

There are so many challenges that come with having an autistic child. Meltdowns, communication, potty training, the list goes on forever.  Working through them is just part of normal life when you have a special needs child. I’ve learned to take most of them in stride, but there is one that still terrifies me.

Public bathrooms.

My son is 11 now. If he was a normal kid he would be going to the bathroom by himself in the men’s room. However, he is not normal. I don’t mean that in a bad way; it’s just a fact. He still has communication problems and often motor skill difficulties. He gets distracted easily and forgets what he is doing. I often have to remind him that he is in the bathroom to go pee not to play.

When we are out an about we have to use public toilets. If we are in a really busy place with lots of people, I often don’t feel safe letting him go into the men’s room alone. I will often take him into the ladies room because I can keep an eye on him and know he is safe. Believe me, I get lots of dirty looks from the women in the bathroom. I really don’t care. Safety first. My child is billions of times more important than your opinion of me.  There is no telling who is in the bathroom or what they would do to him and it’s not like he could tell me if something does happen. And I know it isn’t just me. I know that dad’s with their daughters who have special needs suffer the same anxieties about the women’s room.

Another reason I keep him with me is the fact that he wanders. If it is just him and me and we both have to go, I can’t be sure he won’t be out before me and just wander off. Who knows what would happen to him?

Now comes the real problem. He is getting more independent. He knows he is a boy and he wants to go to the men’s bathroom. We stopped at a truck stop the other day because we really needed the bathroom. He wanted to go into the men’s room. My heart was racing and I ran into the women’s and peed as fast as I could so I would be done before him and be waiting for him when he was through. I was so scared that I wouldn’t be fast enough or that there would be someone in the bathroom that could hurt him.

It’s terrifying! Like we, as parents, need more to be afraid of or worried about. Going out an about in public is hard enough with meltdowns and over-stimulation issues. Now this. How old can he be before it gets too controversial and we end up in some kind of confrontation with an offended self-righteous bathroom guardian?

This is another one of those moment when life just seems too complicated and unfair. I guess the best I can do is try to pick and choose where we go because some bathrooms are better situated  for things like this. It’s just a single bathroom or it’s a family bathroom, but it’s not always that easy. One more struggle that must be dealt with and overcome, somehow.