We all have some amazing stories to share, incredible victories that we've gained, and yes, let's be real - some failures that we've barely muddled through as well. Regardless of where we are at on our individual journeys, there aren't too many folks who aren't going through something!
All that being said, the sad fact of the reality is that there are too many people who are suffering in silence. Not good...for anyone. Some might believe that talking about troubles and trials only makes them worse. Really, who wants to hear about them? Most people have enough of their own, right? Isn't it really just another form of complaining? However, I have recently come to a full realization of how the single act of sharing a burden or a problem with someone can help lighten the load. Okay, yes, sometimes if we are the one listening to someone share their burdens, it can get old after awhile...sometimes to the point where we just want to say to them, "Dude, just get over it!" Nobody really wants to listen to someone rant and rave incessantly. It's such a downer to listen to someone who complains endlessly in a negative way that will never lead to a solution. However, there are those times that sharing troubles and sorrows can be very helpful. Finding someone who is trustworthy, caring and wise is the key. Sometimes just finding someone who cares enough to listen and pray is all that is needed. Being able to talk is therapeutic, Dr. Wayne told me that crying is very healing. The point is, if something is bothering you, weighing you down, or bogging you down emotionally...do something about it, don't just ignore it. Never be embarrassed or afraid to get professional help if you need it...it's really okay.
The visit to Corpus Christi was amazing. I love Dr. Wayne, he is an amazing person so full of wisdom and common sense. Here's what came out of the visit. The scan results indicated adrenal exhaustion, a kidney that is not functioning at full capacity, congested lymph glands, a fatty liver, lungs that are not functioning at full capacity - with a parasite dwelling in them, and a troubled digestive system.
I am struggling with the last finding on the scan, red flag conditions that could lead to Parkinson's Disease. My grandmother had it. It helps explain the tremors, the seizure like activity that is not seizure related, and all the other unexplained symptoms that the traditional doctors can find no explanation for. There is no test for Parkinson's Disease. As symptoms develop, a neurologist can evaluate them and then after awhile, with the presence of enough symptoms, a diagnosis can be given. At least that is what has been explained to me.
I am not claiming this disease, but choosing to take proactive steps to take better care of myself. I know vaccines are a hot topic, and honestly, don't have an opinion about them yet...but during my 12 years of military service, I was given so many of them I lost count! We were never told what the purpose for them was, we were just injected over and over again. Prior to being deployed to the Gulf War, we were given multiple rounds of vaccines, and again, with no explanation of what any of them were for. During my stay in the desert, we lived in tents following the infantry around while providing combat communication support. The chemical alarms would go off randomly, and we would repeatedly be told to disregard them. It's probably safe to say that I have most likely ingested a few toxins over the years! In the world we live in today - who hasn't?
The Phazx machine is pretty amazing. It indicated the presence of autism in my son before the traditional medical doctors did. It has "read my mail" so to speak on so many occasions, time after time. It's technology is based on the science of physics and biology. I am puzzled as to why this machine is not used in modern traditional medicine...well, I can sort of, but it's speculation that I won't go into here. Anyway, I'm not advocating this machine over traditional medicine at all, just saying it could definitely be a useful tool if it were combined with traditional medicine. As with anything, common sense and wisdom must be used.
For the curious, here is the regimen of supplements Dr. Wayne prescribed for me:
Bio Digeszyme P - Aids in digestion and nutrient assimilation. Enhances the breakdown of protein, carbohydrates and fats, useful in between meals to decrease the inflammatory process.
Bio Metabolic Balancer - For balancing the endocrine system. Provides coenzyme forms of the B vitamin, alpha lipoic acid, COQ10 for assisting the Mitochondria in producing ATP.
Bio Thyro Balance - Provides nutrients for enhancing the activity of the thyroid and adrenal glands, increases metabolism.
Bio Vaso Tone - Supports the endothelial lining of the artery, vein and capillary promoting nitric oxide production which aids in the prevention and reversal of artherosclerosis, helps prevent high blood pressure.
Cerebraplex - For temporary relief of nervous fatigue, nervous twitch, confusion and forgetfulness.
Cilantro Plus - Fortifier of the immune system, supports symptoms of neurological complaints, including memory loss, constipation, joint pain, and skin conditions. Chelating properties may mobilize mercury, lead and aluminum.
Licroplex - Fortifier for the adrenal glands, fatigue, lowered energy output, liver detox.
Milk Thistle (Time Released) - Helps protect the liver against ingested toxins, providing it with proper nutrients to allow it to function at maximum capacity. Helps stabilize cellular membranes, preventing the intake of some toxins and subsequent damage. Stimulates protein synthesis in liver cells and has antioxidant properties.
Through additional testing and tools that he has available, Dr. Wayne was also able to recommend a couple of different diets that would be compatible with my system. I didn't realize that random dieting just for the sake of losing pounds can actually be harmful. Not every diet is good for everybody. Just because it's a food item, doesn't mean that our body's system is going to embrace it as such and break it down properly for assimilation. He scanned the hundreds of diets that are available - (wow! there so many) - and determined the top three that are best for me. In the order of best, they are the Mediterranian Diet, the Vegan Diet, and the Gluten-Casein Free diet.
I'm only sharing with you what I am doing for me. In no way do I think this is THE only way that is right, or something that everybody has to do or should do! No way. It's just the way for me for now. We all have to do what we believe is good for us...and sometimes that includes trying new or different things. Taking care of ourselves is so important. It's going to give us more energy to live life to the fullest. It will help us live longer and be around for our loved ones -especially for our children who are counting on us to be there for them. It's a new day, and there's no time like today to take a better path to wellness and health.
Until next time, blessings to you.
Dr. Wayne also suggested a supplement for Malachi called PXP, made from the extract of purple rice. He also suggested detoxfying his liver with dandiplex, made from the extract of dandelions. I will keep you posted on how that's going.
Okay, the title doesn't say it all. In fact, it's been pretty much the opposite lately. There are a lot of folks telling it like it is - sometimes telling us too much. This is not a tell all, it's just real, that is where most of us live. Yet, we want to keep it positive and uplifting...right? How do you do that when your life is surrounded by circumstances that are not so positive and uplifting? After awhile, it's hard to keep smiling and pretending like everything is alright. When you're continually bombarded by things that are traumatic, stressful, filled with drama you don't need or want, and just plain unfair, you get tired. Most parents I know are very tired, and weary from stress and lack of sleep. As parents of children with special needs, we're under enormous pressure every single day, from the moment we wake up until the moment we get to lay our head on the pillow at night. Yet, we get up the next day and do it all over again...we just keep pushing ourselves day in and day out to get things done, and to keep things going. We don't have options. Quitting is not a choice that we have. No one is going to come along and do it for us, and if they do happen to come along and offer us a break, it's all still there waiting for us when we get back.
Most of us have the head knowledge that taking care of ourselves is very important. We know in our minds the importance of eating right, getting enough sleep, and finding time to exercise every day. We know we should drink plenty of water, we know we should relax, and we know we should take regular stress breaks. We've been told that taking "me time" makes us better people, better parents, better spouses...yadda, yadda, yadda. Okay, so why don't we do all the stuff we know we should do?
I had some time to ponder this a couple of weeks ago, after a ride in the back of an ambulance, on the way to the emergency room - hooked up to an IV with an oxygen mask on my face so I could breathe...while lying flat on my back unable to speak. I literally could not move. It felt like an elephant was sitting on my chest, making it incredibly difficult to breathe or speak. Something similar had happened to me a couple of years earlier, and was accompanied by what appeared to be seizures with body movements I could not control, with twitches and spasms that left me incapacitated afterward. It was scary. What was even scarier is that after five days in the hospital, no cause could be determined for the fainting spells, the weakness, or the seizure like activity that was not seizure related. A couple of years ago, I was diagnosed and discharged with "extreme weakness and syncope." This ER visit went pretty much the same. All the testing came back with results that were "normal" or "within range." I was given shots of prednisone and told to keep taking it. I was diagnosed and discharged with "exacerbated asthma" even though no tests had been performed to determine my lung function.
For the last several years I have been struggling with weakness, extreme fatigue, uncontrollable twitching and fainting, and spells where I literally couldn't speak or think clearly. When the doctors asked me if I was under any stress, I really had to hold back the laughter...stress? What's that? Nah! Not me! Who has time for stress? While lying in the ER waiting on test results to come back - which always seem to take an inordinate amount of time - I realized it was time to think about me for a change. My years in the military had conditioned me to be tough. From basic training until the time I decided to end my military career, I lived by the motto, "Suck it up and drive on soldier!" On road marches (sometimes 12 miles or more with 75 pound ruck sacks on our backs) and during PT (sometimes up to six miles), we sang cadences that encouraged us to be tough, get the job done, keep pressing on - and never quit, never look down, just keep on keeping on.
While lying in the emergency room...I realized this mindset has actually been working against me. Up until this point I had been of the mindset that if I just ignored the stress I felt, that somehow it would not affect me, or that maybe it would somehow just go away all on its own. However, I am now living the painful reality that we can only be strong in our minds for so long, eventually our bodies will slow down the processes of our mind. Though I was somehow making it in my mind, and thinking I was holding it together...my body was now sending up giant red flags to signal that it was time to get the body and the mind in sync with one another. I was not taking care of my body, and while my mind was "ignoring" the stress, "being strong" and coping with everything...my body could not keep up, and was now going on strike.
We all have stressors in our lives, and I know that there are many who are dealing with much more stress than I am. A few of mine include the death of my mother, and the death of my father who passed away a few years before her. She was my best supporter, my best friend, and one of the few people in this world that my son was able to connect to. She just knew how to talk to Malachi instinctively - and knew nothing about autism! She was the kindest, sweetest person I have ever known, and part of the stress I am under now is that I have not really let myself grieve for her. I have been holding that in too...because I have a son with needs that keep me so busy I didn't have time...or so I thought. Grief doesn't just go away if you ignore it.
Right about the time my mother died, my son was transitioning into kindergarten. It was a horrific year. He had been suspended twice - yes, that's right, suspended, a kindergartner with a medical diagnosis - not once, but twice. (Who suspends five year olds from Kindergarten? Is it really to teach a lesson to kids with autism - who hate school and don't want to go anyway)? From pre-school through first grade he had been in six different schools, that is six settings filled with the stress of challenges and difficulties that couldn't be worked through. After two suspensions, after he was assaulted, tormented and mercilessly teased by classmates, after countless meetings and requests for better supports, and after the school district's refusal to acknowledge his medical diagnosis, boldly telling me they didn't even "see" autism in my son - (while at the same time unable to help him have a complete day of success at school without calling me to come pick him up), we chose to move our son to another school district. I remember sending a bubbly, bright, happy little boy to kindergarten. He became fearful and anxious as a result of the horrible experiences he had while in the care of "professionals" I trusted to meet his needs. To this day he continues to struggle with fear and anxiety in group settings. I am learning that my anger doesn't just go away by not acknowledging it.
We tried to foster and adopt two children who were brothers. We kept them in our home for nearly six months, and fell completely in love with them. It turned into a nightmare for so many reasons that would take too long to write about. They both had issues that were much more severe than my son's. I was advocating for them and trying to get them supports and appropriate medical help, when Malachi suddenly began regressing. Three young and active boys with significant behavioral challenges ages 3, 5, and 7 (at that time) was just more than this mom approaching fifty could handle. It was heartbreaking. I've never been a quitter, and hate admitting I can't do something, but this was something I just couldn't do, so I had to let these precious boys go. We had only wanted to adopt one other child. We didn't mind if they had some challenges, but we couldn't take other children in with issues that were going to put Malachi at risk. We would love to have another child, but that dream has been dashed.
Right about that time, I was diagnosed with a Huerthle Cell Tumor on my thyroid. It's a rare tumor, and because there is so little known about it, the only way to determine if it was cancerous was to remove it for evaluation. I underwent a bi-lateral thryoidectomy, removing the side that contained the tumor. I was supposed to take it easy and rest afterwards, but didn't have the luxury of taking it easy, and complications arose as a result. Two weeks later I collapsed and wound up back in the hospital. Thankfully, the tumor turned out not to be cancerous. However, now I only have half of a thyroid and must take medication for the rest of my life.
Just in the last couple of months my son has been restrained three times at school. I don't know how other parents feel when they get the news that their child had to be restrained at school, but it makes my heart stop beating. I feel like I can't breathe, my head hurts and I cry. Images flash through my mind and it's unbearable. After asking questions and putting all the information together, I believed each of those restraints could have been avoided. There are no perfect schools, or perfect teachers, and we as parents are so imperfect ourselves. Yet we want the best for our kids. We want everything to be perfect for them. Success at school for my son is always a work in progress, and I'm just thankful that the staff include me in discussions about solutions for his challenges. He has come a long way in three years in this wonderful school district, and for that I am grateful. I accept that there will be bumps in the road that we will all have to come together to talk about, and that's just how it is. I appreciate that the staff who work with my son also love him and care about him, and want the best for him. Knowing this makes it easier for me to deal with news of restraints or other issues. However, it doesn't take away the pain of the reality that he has them.
Another painful stressor that I have been dealing with is the fact that my son was put out of a social group in the community a few weeks ago. It's a painful and hopeless feeling to be asked to take your child and leave a social group led by professional autism experts. The professionals running it didn't think he was ready to be in a group setting...and that he needs more one on one work. I question everything I am told. I did not agree. I have learned that the professionals are not always right. While the experts are great and wonderful, and an important part of my son's progress, sometimes they are wrong. They don't always see the big picture of his life. They only get snapshots of him at any given time. That being said, I do not disregard professional advice lightly. There is one professional in my son's life who I am convinced could probably walk on water! She has known him for a long time though.
I had some hard questions for my son's school after that experience. If what they are doing with my son at school isn't translating into success for him outside the school, that's something we need to talk about. Thankfully, the folks at my son's school are wonderful to talk to, and anxious to help. They were as shocked as I was that he was put out of a social group run by an autism center...and felt quite the opposite, that he IS ready for a group setting...after all, where else can he learn these skills? I am torn between what the professionals at my son's school are saying, and what the professionals at the autism center are saying. Here I am, stuck in the middle with no easy solution. Frankly, I believe he can have success in any setting if the folks who work with him are willing to work with him. Success always takes a little more effort and extra time with my son, and sometimes it's hard work...and it comes in baby steps.
As much as I adore and love my son, I do realize he isn't one of the easier kids to work with. Everyone wants to work with the "easy" kids, the pleasant ones, the ones who can't or don't talk back, the ones who can be led around like little lambs. Sigh. Yeah, autism is not pretty sometimes. He is hard work, and I know that...welcome to my world. I live with him, he's my kid...yeah, I do know he is not an easy kid to work with. Public outings can be huge challenges...read some of my other posts! Other kids with autism don't want to play with my son, but I get it. I'm not angry about that, I understand, but it's painful, very painful to realize that. However, once you get to know my son, and figure out how to get through the autism, there's a great and adorable kid, who is so lovable and fun. My son needs friends. He desperately needs opportunities to be in social settings where he can work on developing and practicing social skills. I feel so much pressure to find these opportunities for him, but am so discouraged right now because it seems there is no long term solution for him that my insurance or a state funded program will pay for.
I've been dealing with a lot of disappointment lately. Disappointment doesn't just go away on it's own if you ignore it. My son's challenges isolate our family. There are very few places we can go. They hinder us from going to church, to stores, to gatherings, to parks, just about anywhere. Attempts to go to these places is challenging and stressful, and rarely a fun or relaxing time - and usually leave me feeling exhausted afterwards. I feel an incredible loneliness sometimes. Contact with other human beings is something we all need! The parents and other wonderful people I meet through SWAN have no idea how much they support me. I have met some pretty amazing moms and dads, and though we don't see each other that often, when we do get together, it's great. We get it, we so get what we're all going through. There's no pretense necessary, no formalities, we just pick up where we left off. I love how when you meet another parent with a child on the spectrum, there is already a strong bond that is there. There is no need for so many formalities because you already have so much in common!
Sorry, I'm really rambling here...it's time to wind this novella down. So why am I sharing all of this? This is some really personal stuff, and really, who cares? Who isn't going through something? There are parents everywhere living under enormous pressure, living stressful lives, filled with stress that never lets up. I'm not sharing anything here that is new, or bizarre, or out there. I'm not the only one going through these kinds of struggles and disappointments. I don't want sympathy or pity, I will make it. I serve an awesome God who I know will see me through. I just want to encourage other parents who might be feeling like they don't have time - or don't want to take the time to take care of themselves. Stress is there, every day. As long as we're alive we will have to deal with the things that come our way. We each have a path to travel, and a load to carry while we journey to get where we're going. Personally, I want to be able to finish the journey, and be around for my son. I want to feel good and have energy while I'm doing it! I want to live the life that God gave me. He didn't intend for me to live at the bottom of a pit. He didn't intend for me to struggle under a heavy load of sorrow, loneliness, care, and anxiety. He certainly didn't intend for me to feel this lousy.
Change is ahead for me. Big changes in the way I live and take care of myself. I took a trip to see a holistic practitioner we used to visit when we lived in the Corpus Christi area. He's awesome. It was an incredibly enlightening trip. While stress was definitely a contributing factor to my visit to the ER, there are also some physical causes that are contributing to what I have been experiencing as well that the tests the traditional medical doctors performed did not find. I intend to take the information Dr. Wayne discovered through his testing to my regular family doctor to keep him in the loop. With my thyroid and the medication I take for it, I definitely want to be under the supervision of a medical doctor while taking supplements and dieting. In the next few blog posts, I'll be sharing my journey to wellness with you. I'll also share more details about my visit with Dr. Wayne and the diet plan and supplement regimen he recommended for me. In the mean time, I hope you will make time to take time to take care of you. That doesn't have to include a visit to a wellness doctor. It doesn't mean you have to take supplements or herbs, or go on a special diet. Sometimes it just means slow down and take it easy. Take a break, go for a walk, or call a friend. Do something to get your mind off things for awhile. You deserve it!
Love and Blessings,
Every Saturday my husband and our son celebrate its arrival when they wake up with a little ritual. With a big smile on his face, my husband will get down with our son and gleefully shout, "What day is it Malachi?" Malachi will shout, "Saturday!" Then together they will both shout and say, "No work...no school...just play!" It always makes me smile to hear this joyful exchange between them. This morning they left the house early for Malachi's swimming lesson, and to go get haircuts afterwards. A couple of hours to myself on Saturday morning is always a welcome treat!
This morning brought an extra treat with a phone call from Alan and Malachi asking me to join them for a late breakfast at a nearby restaurant...to which I simply could not refuse! During every outing we have in public, there is always a constant low level of tension present that I can never seem to shake. I'm always on guard, always watching Malachi - and everyone around us, and constantly on the lookout for red flags, or the signs that it's time to leave. This morning when I walked into the restaurant, I relaxed somewhat when I saw that Alan and Malachi were in a corner booth, sitting side by side and all was calm.
Malachi looked so cute with his new haircut. As soon as I sat down he asked me if I liked it. (Of course, I think he's the most handsome kid in the world no matter what)! It surprised me that he was seeking my approval - something he doesn't usually seek from anyone - so it was with great pleasure I got to tell him how handsome he looked!
Malachi finished his Belgium Waffle and wanted another one...but it was getting time to go. We had waited quite awhile for the one he had just eaten. I'm seeing the signs that the morning's events are beginning to take their toll on his senses. The restaurant is starting to fill up quickly now with people coming in for lunch, and I knew it was time for us to go. He wasn't satisfied with our answer that he could have more to eat when we got home. Without warning, he promptly stood up on the seat calling out very loudly for everyone to hear, "Does anyone have a waffle I can have?" My face turned beet red...the restaurant was filled with the sounds of laughter everywhere. I told Malachi to sit down, I was so embarrassed! I think someone wanted to have some more fun and laughter at my expense and called out, "Hey, why don't you ask that again?" Malachi quite willingly obliged and stood up again to repeat the question! More laughter...someone offered him their pancakes. Malachi informed them he didn't like pancakes, at which point I interrupted the conversation and told him to sit down. People were still giggling. Sigh.
My husband is smiling, Malachi is actually smiling, people around us are laughing and smiling...is this really okay? I'm usually busy trying to keep everything running on an even keel, or fending off disasters, or appeasing and apologizing to angry people. This is a new experience. A crowd of happy people, who seem to be quite nice, just having some harmless fun...or is it? Last Friday we were dealing with a crowd of folks who were angry and yelling at us, this week we're dealing with folks who are teasing and having some fun - at my son's expense of course, but maybe I shouldn't look at it like that. I sat there analyzing, worrying, and wondering if this was okay. I looked around and could tell that no one was being malicious. Even the person who had put Malachi up to his repeat performance actually seemed like a nice guy, smiling and friendly. Since no one was being mean spirited or ugly, I finally relaxed and decided that this was much better (and less stressful) than dealing with an angry crowd. In a few minutes everyone had returned back to their meals and their conversations. I guess it's time to learn how to relax more when we go out...that's not likely to happen though...but I will take this kind of fun and laughter over screaming and yelling - any day!
It was all going so well. It’s Friday night, the last Friday night of March. Malachi is begging me to take him to meet a couple of his friends at a local bounce house. I want so much for him to have friends, to be happy and live life as close to “normal” as possible - I'm so anxious to see him have friends and have fun, that I give in. As we pull into the parking lot, I start going over the rules with him that we always go over before going to places like this. Part of me really just wants to take him home and not have to deal with the stress of taking him out in public. Public outings, most group settings, and play dates are usually a time I spend vigilantly watching his every move - to include those of everyone around him. I never know how he will interpret or react to something that is said to him. My biggest concern during our times out, is worrying about how others will react to him. I’m constantly pacing to and fro watching him…trying to stay near enough (without looking like I am following him around) so that I can listen in on any conversations he is having with others.
Malachi is ecstatic that we are going to one of his favorite places. After checking in, he takes off with glee to find his friends. Within moments of getting there the lights are dimmed. We buy glow sticks for the kids…they love it! It is so wonderful to sit with friends, watching him run from one inflatable to the other, bouncing around, laughing and enjoying himself with other kids his age – in a public place. These are rare times. He is our only child. He wants to be around other kids, but with the autism and sensory problems he has, it’s a challenge. He has not yet learned to self-regulate and manage his sensory challenges on his own. We usually have to cut outings short and go home. Usually, I can read the signs that let me know it’s time for us to go. It is getting close to the time I know we need to leave. This night I am lenient, giving in to his plea to let him stay for another five minutes.
Within a minute or two, I see trouble brewing between Malachi and a couple of other older and bigger boys there. A mother knows exactly what every facial movement on her child’s face is all about. Whatever the conversation is about, I can see it is highly agitating to Malachi. As I walk toward them, it’s becoming more and more obvious that something is about to break out between the three of them. I move a little more quickly to get there in time…thankfully, when the two older boys see me approaching, they walk away. I can tell that Malachi is really angry now. When I tell him it’s time to go, he becomes even angrier and runs away screaming, “No!!” It becomes an enormous struggle to get him to the door. I see a child running toward us. He is happily running toward an inflatable behind us. As he runs by, he accidentally bumps into Malachi nearly knocking him down – which in turn causes him to begin melting down in a major way. He begins to scream because he is convinced that the other child pushed him "on purpose." He breaks free and begins to run after the child. When I catch him and try to hold him, he begins biting and hitting me. He has never bitten me before, and has only ever hit me on one or two occasions. I am usually the one person he responds to positively - no matter how badly things are going. I know this is a sign that his senses are extremely overloaded right now, and that he is out of control...the wonderful evening is quickly coming to a horrible end.
The next few minutes turn into a blurry nightmare. I tell Malachi once again that it’s time to go. He darts away, but this time he heads toward the front door. I lose sight of him…it’s so difficult to see with the lights turned down low. I am panicking because I know he is in meltdown mode – in the midst of a crowd of strangers. Why are all these people milling around, blocking the way to the entrance? The birthday party crowd is scattered around the cubbies to the front desk...making it seem impossible for me to get to my son quickly enough. The combination of the loud music, the motors that are pumping air into the inflatables, along with the birthday party crowd and all the other kids who are running around everywhere laughing and yelling, make it impossible for me to call out loudly enough for Malachi to hear me. I am sure that fear and stress made it seem like everything was in slow motion, but in reality it all happened very quickly.
Finally, I see him near the front desk. As I catch up to him, the girl at the front desk comes around from behind it to make sure the numbers stamped on our wrists match. However, he is still in meltdown mode and is unable to respond to her appropriately. Her continued efforts to check the stamp on his arm are only frustrating him even more as she follows him out the door, repeatedly telling him that she needs to check his wrist. I am behind her as she is following him trying to reason with him, (welcome to my world). She finally gives up and turns around with a questioning look. I can only look at her apologetically and say the phrase that I seem to say so many times – a phrase I am growing to hate, “He has autism.” I tell her that it’s important for me to get him away from there as quickly as possible. She nods her head in an understanding way and lets us go.
Just as I am beginning to feel relief to have gotten him out of there, he abruptly stops and turns around. He points to his feet and begins screaming, “I left my Perry shoes in there…I have to go get them!” He adores his Perry the Platypus tennis shoes – his favorite character from the cartoon Phineas & Ferb. (If only Perry were here right now)! Before I can stop him or say a word to him, he darts back into the building. I run after him and can see that he is plowing his way through the crowd to get to his beloved Perry the Platypus shoes. As I head to the door, it appears that my friend is holding him…it looks like someone is yelling at him…I run inside…the place seems to be in an uproar…my heart begins pounding…why do so many people seem to be upset? I feel so helpless, I am ready to lose it myself now because I know it can only be because of my son. My heart sinks to the bottom of my stomach as I realize no one there has any way of knowing he has a poor sense of space, and that when he’s under stress and overloaded, it’s nearly impossible for him to gauge where his body is in a crowd. He literally cannot respond to anything anyone says to him when he reaches that state.
As I enter the building, stress is starting to shut down my own ability to process everything. I start to feel like I’m in a tunnel. I can hear people talking about someone’s child who has been knocked down, but their voices sound so far away. I begin to feel like I’m in another world when I see a man point at Malachi and then yell at the top of his lungs, his face contorting with disgust and fury saying, “Somebody get that kid out of here!” The expression on this man's face, along with the words he is using, and the tone he is saying them with make my blood turn cold. I can only think, “Does he not realize my son is only a child, and that he is having a terrible problem right now?” I have to get my son out of this crowd somehow…oh why are all these people still milling around the entry way?! I just could not seem to get to Malachi fast enough!!!
I finally reach him and help him get his shoes out of the cubby. He is in panic mode now. I can see fear on his face. He darts away from me again, and just as I am trying to run after him, a man blocks me. He identifies himself as a police officer with the Springfield Police Department…a mother’s worst nightmare…her child in trouble with the law! Stress, panic and fear for Malachi took over at that point…I cannot see him! This man who has just identified himself as being from the police department - he could have been the President of the United States of America for all I cared at that moment. My child is in danger and the mother inside of me is in high gear to get to him! This man is yelling at me, determined to fill me in about the details of what my son did to his daughter. Why can’t he understand that my son is having a serious problem and that I need to get to him? What is wrong with him? When I tell him that my son has autism and that I need to get to him…he does not seem the least bit concerned and only continues talking about his daughter…at which point I dismiss him. What kind of idiot would identify himself as a police officer, and then act like this after I tell him my son has a disability and that I need help? If he really is a police officer, why isn’t trying to help us? He can help his daughter - and everyone else there by doing some crowd control, by clearing the crowd so I can get to my son and get him out of there away from everyone!
I walk away from this "police officer" to find Malachi. I finally see him, and when he sees me, he clings to me while people are pointing and yelling at him…I can’t even hear what they are saying, it is all so crazy! (I am serious when I say it was like they were all pointing and saying, “Crucify him! Crucify him!”). Can these people not see that he is just a child? I cannot project my voice well at all. I am unable to make myself heard over the madness of the people who are yelling at us…I feel so utterly helpless and overwhelmed. I know I am on the verge of going into shock (been there before)…and just so that I can be heard, I scream back at them, “HE HAS AUTISM! HE HAS AUTISM! CAN’T YOU SEE HE HAS AUTISM?” Of course no one can “see” he has autism, why am I asking them that?
I am shaking so badly at this point, and as I turn to walk out I can feel my legs shaking like they might give out on me. For a split second, I don’t know if I am going to be able to walk out…but I quickly put that thought out of my head knowing my son needs me to hold it together. He begins asking questions. I see that he is in great distress too, talking very fast in a high pitched voice wanting to know why everyone was yelling at us. He wants to know why the “police man” was yelling at me. He starts generalizing and says, “Police are evil mommy! They are evil. That police man needs to go to jail, he’s evil!” He begins to rant while we walk to the car. As we pull out of the parking lot on to the main road, he continues to rant about police officers being mean and evil. He asks again why people were yelling at me, he asks again why everyone was so mad, he just doesn’t get it! He cannot connect his behavior to the uproar that is taking place inside the building we have just left. As gently as I can, I tell Malachi that when he ran back into the building to get his shoes, he had knocked down the “policeman’s” daughter. I tell him that the man was upset because he loves his daughter very much, and it hurts him to see his daughter get hurt. He says, “I didn’t mean to knock her down mommy. I didn’t even see her.” He abruptly changes the subject and begins saying that he no longer wants to be a policeman when he grows up. He begins rethinking that desire and says, “I don’t want to be a police officer anymore when I grow up. I think I will just be a monster truck driver instead.”
We have only been on the road for a few minutes at this point when we hear sirens in the distance somewhere behind us. Malachi begins to scream. He is terrified and convinced that the police are coming after us. For a minute, panic takes over. I see an entrance to a subdivision and have this crazy urge to take my son and hide with him somewhere. Hide? Really? Yes! I kid you not…it is in this moment I realize the lunacy of this whole situation. Reason takes over once again and I am able to collect my thoughts. (It helped that I saw the police car head in the opposite direction). I spend the next few minutes trying to calm Malachi and reassure him that the police are not coming after us.
Something inside of me snaps. Malachi can get so easily stuck on ideas about things that are sometimes very difficult for him to get “unstuck” from. I know that I have to do something to prevent him from getting stuck on this idea that police officers are evil and mean people who yell at his mom when he is having a problem. I want him to have respect and confidence in police officers. I do not want to give time a chance to get any of these awful thoughts about police officers stuck in his brain. I have no idea where the police station is. When he hears me calling information to get the number, Malachi launches into hysteria and screams, “No! Mommy! Please don’t take me to the police! Please don’t take me there!” He is crying and screaming at the same time. In a calm tone, I reassure him, “Malachi, you are not in trouble. Police officers are not mean and evil. Police officers are here to help us when we have problems. They are not going to arrest you because you are having a problem, and they are not supposed to yell at me while I am trying to help you. I am going to take you to the police station so that you can meet some nice police officers.”
I don’t know if half of anything I am saying to him registers, but he appears to calm down somewhat. As I drive up and down the street looking for the station, he is saying things like, “Life is hard mommy.” “I have a problem mommy.” “Why do I have these problems?” He still does not accept that he has autism. While trying to gently help him connect his behavior with the pandemonium we left behind us, I mention the “A” word. He will not let us say the word autism in his presence. When he hears someone say it, he promptly yells, “I hate that word autism!” He has overheard someone somewhere saying that he is a “special needs kid” and that he rides the “special needs bus.” He decides tonight that must be the reason he has problems. He is talking nonsensically now. I look at his face and see defeat…I know that I have another tough job ahead of me. I will need to find ways to help him feel confidence in himself again. I will not let him feel this way about himself…but at this moment it seems that nothing I say is registering – but we never know what our kids are registering, so I continue to tell him that he can overcome his problems, and that he can beat autism…he doesn’t protest this time about the “A” word.
We finally arrive at the police station. I share the events of the evening with the police and express concerns for my son with autism in a public setting. I ask them about public policy and procedure. They inform me that they are actually in the process of getting training in Crisis Intervention. They inform me that police officers are trained to properly identify themselves, and the man who identified himself had shown no badge, had given no name, and was in civilian clothes. He tells me the man doesn't sound like a police officer, and that they get reports of people claiming to be police officers all the time. I share with him that sometimes the emotions of being a parent can take over reason and logic! I (How well I knew). I tell him that the main reason we are there is so my son can meet a nice police officer and get out of his head the idea that policemen are “mean and evil.” I tell him I want my son to grow up to have confidence in and grow up with respect for police officers. The officer is so kind and patient with Malachi’s countless questions. They talk about police cars and criminals for awhile, and then Malachi emphatically tells the officer that the “other” police officer needs to be arrested and go to jail! The officer gives Malachi a tour of the police station. On our way out, the folks at the front desk give him crayons and a coloring book. I can tell that my son’s fear of police officers has been replaced with confidence, and that policemen are no longer “mean and evil” people in his mind. My husband has joined us at the station. In the aftermath of a meltdown, our son sometimes becomes extremely fatigued. He is unable to walk now and my husband has to carry him out.
I am handed a packet with a form to file my complaint with internal affairs. If this man is a police officer, I am told an investigation can be conducted. At the bottom of the complaint form there is a question, “How would you like to see this complaint resolved?” In spite of the tremendous pain his words and his actions caused both my son and me when we were already in the midst of a crisis, I feel very badly that my son knocked down his daughter. I have great empathy for the pain this man was obviously feeling for his daughter. I understand from my friend who was there, that the man’s wife tried to get him to leave my son alone. She told my friend that she works in a daycare where there are some children who have autism. I am so grateful that she thought enough of my son to tell her husband to leave my son alone, in spite of the pain she had to be feeling about her own daughter. When my friend told me she showed this concern for my son, it took some of the sting out of the horrible words I heard her husband say about him.
I failed my son by not recognizing sooner when it was it time for us to leave. By giving in to his pleas to stay longer I set him up for failure. The events of this evening are entirely my fault. He depends on me to structure his world, and though it started out great, we should have left on a high note when things were going well. I did not make a graceful exit with him. He is not to blame for anything. If there is any “resolution” I could ask for, it would be to ask that every law enforcement official on the force of Springfield’s finest be given training about children with developmental disabilities who are prone to meltdowns and other disturbances in public settings. For the protection of our children who are having meltdowns in a public setting, as well as for the safety of others who are in the vicinity of a child (or adult for that matter) having a meltdown, I think it’s of the utmost importance to put public policies and procedures into place. Strangers who see our children having a meltdown should not just automatically assume that what they are seeing is a product of poor parenting, or that they just need some good old fashioned “discipline.”
In closing, I would like to make a couple of suggestions for “resolution.” I don’t know if this is within the power of law enforcement officials, but perhaps it can be the start of dialogue within the community. When you see a parent struggling to control a child, don’t become part of the problem, either help or walk away. In fact getting out of the way - far, far away is probably the best thing you can do. If you are a parent, I will not be in the least offended if you grab your child and remove him from the vicinity of my son. I care about your children, please care about mine. Please give me room to work with my child so I can remove him from your presence as quickly as possible. Hurling insults and making derogatory remarks about my child and my parenting skills while I am struggling to help him will only hold up my progress in getting him out of the situation. There is so much more to say on this subject, but I have poured out my heart and have probably said enough already on this subject, maybe too much. There needs to be more dialogue on this subject. I will leave that to the professionals...and the police.
Once again, I want to thank the very kind officer who took time to make a difference in my son’s life.
It is often said that the power of the pen is mighty...but yesterday, I discovered just how powerful a piece of paper can be! Yes, a common, ordinary, simple piece of paper - with or without words or pictures. Thankfully, my car can be quite the traveling clutter box of assorted toys, various pairs of shoes that my son refuses to keep on his feet - (along with hats and gloves he refuses to keep on his head or hands), and a large stash of various kinds of paper, newspapers, magazines, and junk mail that never quite seems to make its way into the house!
To make a long story short, we stopped at a store on the way home from his weekly therapy visit yesterday. Without taking time to think about it, I allowed him to take a couple of his beloved Hot Wheel cars in with him. Yes, you've probably guessed it already, he lost one of them. We searched high and low throughout the store, retracing all of our steps in search of it, several times - it was just no where to be found!
Suddenly, he began breathing hard - the first red flag that a meltdown is in the works at its beginning stages. We managed to work through it enough so that we could walk out of the store...it wasn't a perfect exit, but I was very proud of the way he held it together long enough to describe his missing Hot Wheels car to the sales clerk at the front desk. She promised him that she would call him if they found it.
He held it together fairly well - until we were in the vehicle driving home where he began coming unglued! I looked in the rear view mirror and saw that he was in real distress. His face was red, his eyes were filling up with real tears (he RARELY ever cries), his voice was getting louder and louder with each angry statement he made - and with each statement he made, being on the highway in heavy traffic began making me more and more nervous.
I remembered a strategy his psychologist had taught him (and us) that he could use when he felt overwhelmed by anger or frustration. She had helped him put together a list of things he could do to "get the mad out" when he started feeling overwhelmed. One of them was taking a piece of paper, wadding it up and then throwing it, (preferably in a trash can). I looked down and saw some newspapers and began handing him pieces of it, instructing him to wad them up, and then telling him where he could throw them...i.e., the back of the car, the side windows, the back of my seat and his seat, etc.
It was amazing! After awhile, I could see the tension leaving his body more and more with each wadding and throwing of the paper. Pretty soon I saw him starting to smile. Not too long after that, he was really smiling and saying, "This is kind of fun!" Finally, the tension started leaving my body! Driving down a busy four lane highway with an angry kid on the spectrum who is about to burst is a little unnerving...thank God for the papers I had been allowing to pile up on the seat next to me! Thank God the strategy Malachi's therapist taught him gave him an effective outlet for feelings that he was having difficulty managing at that moment.
By the time we got home, he had pretty much forgotten about his missing car. Not too long after that, we received a phone call from the lady at the store telling us they had found it. Whew, what a day! I'm not glad it happened, but I do value the opportunity he had to exercise self-control enough to tell the lady at the store about his missing car. Even though he started falling apart in the car, he made it out of the store safely. (I think the store building will get over being called stupid). While in the car, he had an opportunity to practice a strategy he had been taught to help him manage his frustration - and he discovered how powerfully it worked! So, overall, in spite of everything, there are many positives to pull from what happened.
The pen may be powerful, but I'm a believer with an eyewitness account that there is probably equal - if not more power in paper!
Life can be very raw...sometimes very ragged...leaving you on the edge asking questions like, "What now? How the heck did I get to this place? Where do I go from here - and is there anybody that cares? That understands? Who can help me through this?"
During my military service I did a tour in Alaska. While it was a phenomenal experience, at the same time it had some downsides. I mean, come on...how many tons of snow do you really want to look at for 10 months out of the year? The winters were too cold and too long...with short - really short daylight hours. There were two main roads in and out of the state, (that I felt comfortable enough to drive on) that greatly limited one's driving options...and unless you had a Humvee or knew a nice Bush Pilot, you were pretty stuck right there in Alaska! I put a lot of miles driving up and down those highways, back and forth between Anchorage and Homer in the deep of winter just to give myself that feeling of "getting away from it all" for awhile.
It was usually a one day trip down and back. I'd drive down to Homer, a little fishing village with not much to offer in the way of entertainment, eating, sports - or even shopping. No, it was definitely not the Mecca of Alaska! It was really kind of ironic how getting away from one of the very few big cities in Alaska, to go to a small fishing village gave me a little "breather" and a feeling of escape for awhile. It was just different, a place to get away from my reality. However, after awhile, even that didn't help relieve the feeling of isolation and being "stuck." As beautiful as Alaska is, in the dead of winter, it can really start feeling like the proverbial fishbowl! Depression set in, along with loneliness and discouragement. Military life is not easy. It's very stressful in fact, and not for the fainthearted or weak.
The same could be said for being the mother of a child with special needs. When reality sets, and your life becomes altered in ways you could never have imagined in your wildest dreams, take heart. There may not seem to be many roads to travel on, and though you are surrounded by people, you may still find yourself feeling isolated - and very much alone on your journey. Fear may try to creep in, depression may try to set in...an overwhelming sense of hopelessness may take over - and it may seem nearly impossible to shake it off. Saying that life can be raw is one thing, but feeling and actually living the things that make it so raw is quite another.
Cliches aren't helpful when you're standing in a valley, struggling under a heavy load that seems nearly impossible to bear. A sympathetic ear is nice, having someone to talk to can help, getting away from it all and taking a leisurely drive down the highway can also help. But when you return from the little get away, and when the supportive friends who care go home, you are still left facing your reality...that inescapable reality that nothing short of a miracle will ever change is still there. What will hold you together? What will help you through? Though you discover options and resources, and though there is help and hope, the common denominator of it all is you.........you.........you.
You have to begin looking at yourself differently in this new reality you find yourself in. From this point on, it will not matter what others think of you, it won't matter what others say about you, it will not even matter if you find yourself alone, nothing else will matter except being everything you need to be for the sake of your child. If you are one that is easily tossed to and fro by the winds of difficulties and challenges, just find an anchor somewhere and hold on, stand fast, and don't let go. People will misunderstand you, they will misunderstand your child, they may not like you - or agree with you, but if you know what you are doing, and you know what you are talking about, and you have the right attitude, you'll be surprised at how your strength and tenacity will be the fulcrum that can affect the positive changes you hope for.
You can't change other people, often you can't change your situation, but you can change your approach to it. When something doesn't work, don't give up, just keep trying. Answers will come eventually. Perhaps not the answers you had hoped for, but if you are able to open up your mind to new possibilities and a new reality, you'll find that reality can be bearable and even quite pleasant. You'll learn to discover joy and peace in a new way. Happiness comes packaged a little differently in this reality. There will be points of joy along the way that will recharge and refresh you. They will often be unexpected - cherish and savor each one of them...they will give you inspiration and help sustain you to make it to the next point of joy. They will make everything you go through seem worthwhile.
What has helped me is learning how to pace myself, and how to set realistic goals. I figured out pretty quickly that I was only able to live one day at a time, and that worrying about tomorrow or next week, or next year - or my child's future wasn't helping me make the best of the current day. It was a real drain on my energy and focus. Then I discovered that when I did worry about certain things, things changed before we even got to them, so all that worrying was for nothing!
Things change, people change, the world changes nearly every day. Nothing is constant or for sure. As hard as I try to give my son consistency and a routine to rely on, then he up and changes on me - and I simply have to adjust. Anchors and outlets become important. Outlets are stress relievers. If I don't find ways to relieve the stress, it builds up and I bust. Finding ways to relieve stress are not just a luxury for us. They are an absolute and critical necessity! You think you don't want to take time away from your child? You think you can't afford it? You can't afford not to! It really will make you a better mommy - and it will help you keep your sanity.
Everyone has their Anchor, something or someone that helps them through. Find it and hang on. My anchor is Jesus Christ, when I have done all to stand, he is the one who holds me up! Pace yourself, take things one day at a time and be encouraged in your new reality. Look forward to the new joys you will discover on your journey, they are there. Take heart and be encouraged, it is NEVER as hopeless as it may seem.
They say it takes a village to raise a child. We seem to live outside that village. Far, far outside the village - like up in the mountains, or at a remote location somewhere! For those who live with autism everyday, you get what I'm saying. For those who don't, it's hard to explain. Our children's autism often keeps us living on the outskirts of "the village" or mainstream society most of the time.
We still have to travel into "the village" and get supplies, run errands, and go to various meetings and other appointments just like all the other villagers. Those trips can turn into an epic saga! Now that Malachi is getting a little older, it's getting easier. Ongoing therapy, and years of taking him out to public places so he can practice being out in public are starting to pay off. We still have tense moments in public - but it's getting a little easier.
I'm determined to help my son become a social person, capable of appropriately interacting with people in the mainstream of society. I purposely plan outings so he can learn and practice how to do that - and ignore the stares and comments of strangers and onlookers. My kid has to go somewhere to practice! I refuse to stay confined to a remote location on the outskirts of the village. What is life going to be like for him when he grows up if we just stay in the comfort zone of home all the time around everything that's comfortable and familiar? I've committed myself to the extra miles I have to travel each day on what's been called a journey. It is a journey, and some days you just never know where you're going to wind up! The other day I took him to a local thrift store with the idea of letting him shop around and get a feel for what it's like to make purchases. He's learned the money system, and has a pretty good grasp of how to read prices. I want him to appreciate the value of a dollar and be able to go into a store and spend wisely, so we talk about how much things cost and how he can get the most for his money.
The owner of the thrift store was watching and listening. I can only imagine how I sounded asking Malachi over and over questions like, "They're asking a lot of money for that...do you think it's worth what they're asking?" Or I'd say, "You can buy that brand new for almost that price. Would you rather just spend a little more and buy it new in better condition?" Or, "Are you sure you have enough money to buy that?" Or, "You can't afford that honey." You get the idea.
I thought I was doing a great thing. Could we have afforded the items? Well, yes. But the idea was to give him a certain amount of money so that he could practice shopping and learn how to spend within that amount. The owner of the store came over and struck up a conversation with us. A rare thing happened. He really opened up to her and answered her questions quite pleasantly. (Sometimes he can be a little grumpy with people who ask him too many questions)! Questions like, "What's your name? Did you know your name is the same as one of the books of the Bible? What grade are you in?" He patiently answered all her questions, and even asked her a few of his own!
Without warning, (or asking) she led him over to the toy area and handed him a bag telling him he could pick out some toys. I was so proud of him, he asked, "How much do I have to pay you for them?" To my chagrin though she said, "Oh you can just have them!" Sigh. There went all my efforts with the exercise in thrifty spending I had planned out for us! He was yelling very excitedly for everyone in the store to hear, "MOMMY! She said I could HAVE these toys! I CAN JUST KEEP THEM WITHOUT PAYING!"
I abandoned my efforts at the lesson. In a last desperate attempt to help him connect getting things to doing something to earn them I said, "Well honey, you've really been a super shopper today. You've made lots of good choices in here, so I don't mind if you accept these as a reward." The storekeeper gave me the oddest look. She just really had no clue. Her heart was in the right place, I greatly appreciated her kindness toward us - especially toward Malachi. After hearing me talk to him about what we couldn't afford so many times - she probably felt moved to give us something! Malachi thanked her and made excited comments all the way out the door that had everyone standing there looking at him, giving each other these knowing looks - and chuckling amongst themselves.
I felt a little down as we loaded up and pulled out of the parking lot. Maybe I shouldn't have expected so much out of this shopping lesson for him. No harm done right? He got some free stuff, people seemed to feel compassion for him, thought he was adorable and cute. But now that he's bigger and older, his comments about things kind of make him stick out and seem odd for a nine year old. It's not quite as cute and adorable as it used to be when he was four or five. I don't want him to "stick out", I want him to blend in. I had just been undermined as a parent in a nice way! They had given him those things because they felt sorry for us - without asking me first if it was alright. I could see in their eyes that they knew he was different.
We need the "villagers" to work with us as we work with our kids. I think though, that we need to work with some of the villagers first and explain some things to them. We need more kind-hearted folks like the owner of this store. She engaged my son in a meaningful conversation that really surprised me. I plan to take him back, but first I think I'll pop in and chat with the owner and just let her know a little bit more about Malachi. She could be a great ally in helping me teach my son important life skills. Maybe she will then talk to her friends, and her friends will talk to their friends...and who knows, eventually maybe the village child raising effort will be just a little more unified!
It's a new year - out with the old, in with the new ... ahem, unless you've got a kid on the spectrum! For these kiddos, it's routine, structure, and all things familiar every day. The same old - same old helps keep life on an even keel. (Along with keeping the peace and sanity intact!). Or so I thought. I'm the polar opposite of my son ... spontaneous, random, adventure-loving ... enjoying spur-of-the-moment-let's-just-do-it kinds of activities. Sigh. Sometimes I miss that. I've tried not to put our son in a bubble, or build a world around him that will leave him dependent and totally helpless to break out someday. If he struggles with something, I try to find constructive ways to get him develop skills to to be an over-comer. I try to look at every struggle, every conflict, every set-back - even the failures as a learning opportunity for growth and progress. Keeping an eye on the future, I'm determined to keep gently, but firmly nudging him toward more and more independence. It's a task that often puts me outside my comfort zone! It's hard work being mom to a kid bound and determined to stay set in rigid and inflexible routines. Kind of like a work-out minus the serotonin boosting benefits...some days leaving me feeling drained, out of shape, and out of sorts!Oh, but the joys of seeing change and progress come through these sometimes agonizing and endless efforts! There's no feeling quite like it when he is finally doing something I have spent weeks, month - even years trying to get him to do (or stop doing). I want to experience more of these moments this year. It will be hard work, but so worth the time and effort it will take. I'm believing God for miracles this year. I have so much to be thankful for, a husband who loves and adores our son. Who loves me and gives me room to pursue my dreams...who makes it possible for me to get breaks and valuable "me-time." A son who tells me I'm "the best mommy in the whole world." Friends I can call who understand exactly what I'm going through without a whole lot of explanation. Best of all, God, who is the greatest friend I've ever had, is beside me each day, every step along the way. His promises are so exciting...filling me up with hope! Thank God for hope, and thank God for his promises.