Category: autism spectrum disorder

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I’m Tired

I don’t remember the last time when I spoke the words “I’m tired,” and that was all I meant. Whether it was to someone or to myself. I’m tired has replaced I’m okay, I’m all right, I’m fine which often was retorted with, “Are you sure?” Sometimes followed with unsolicited advice which honestly was never much help in climbing out of that headspace. I’m just tired has replaced I’m exhausted. It’s replaced I’m sad, I’m depressed, I feel broken. It’s replaced I feel hopeless. I’m not sure at what point I am tired became so much more in those two words. It creeps in the darkness of the night stealing sleep or causing nothing but sleep. It has no shame on a warm sunny day and still keeps coming at you with clenched fists. Frankly, most times talking about how I feel traps me there and I want to escape it and I have therapists for that sort of thing anyway.

I suppose I may not just be tired and after so many years like this it feels as if this is who I am now. It’s not all days but it’s closer to that being true than not. Sometimes saying I’m tired, is to not burden those you care about with something you can’t help feeling. And after so much time has passed and those feelings are still there the compassion dissipates from the ones you need it from the most. It is not intentional to hurt but the truth is, sometimes it does.

Maybe I don’t have anything positive to say and I am a jaded, cynical pessimist. And life experiences and jacked chemicals in my brain created the monster I feel I am now. So no, I won’t complain about my day, the physical pain I’m in I try to ignore and fight through or for the mental warfare inside of my head just to be told to chin up or buck up or to play the one up game with people I’m not trying to compete with, especially a game where every one is the loser. To be asked how I am and for the response to my reply to feel like nothing more than a brush off, an obligation to ask but no substance behind it. And yes, I already know that someone else has it worse than me but I still have to live this life in this body, in this mind.

I miss truly enjoying things, things I used to or even new experiences or even something so simple as chasing after dreams. To be trapped in survival mode only because the chemistry in my brain is faulty. Some days, not all days, I go through the motions only to get to the next day and only to do it all over again like Bill Murray in Groundhog Day or Sammy in the “Mystery Spot” episode of Supernatural. But I haven’t given up yet and that should count for something shouldn’t it?

So yes, I’m tired.

 

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Archive: The joy of a sleepy child

I rock my son in my arms as if we were listening to a sweet melody. His cries bounce of the wall begging for me not to coax him into sleeping. He loathes napping and bedtime as if I were kicking his favorite little puppy. He whines, pleading that I stop trying to make him as sleepy as he actually is. I lay him down in bed with a bottle and his favorite blanket, whispering sweet words to him. He fights, arguing every step of the way as if sleep was his mortal enemy. His eyes grow heavy and in reaction his hand reach up to rub them. Will he sleep? I wonder.

I hold my son gently in my arms reminding myself that this is just one of the many gifts that come along with children. Exhausted my hair lay a disaster, high above my head. My eyes are surrounded by a dark blanket, a sign that I have been without sleep for far too many days in a row. A nap could change my entire day and the only thing standing in the way of that is the perfect bundle of joy wrapped in my arms screaming bloody murder. My socks are mismatched and I was sure the substance on my shirt was either spit up or formula but not entirely sure to which one it was.  Reluctantly, I lay him in his bed as my arms feel as if they will fall right off of my body from the length of time I held his weight in them. I tried to hold him until he fell asleep, but I was in no condition for an endurance run against this little man.  I glanced in the mirror to see my disheveled appearance knowing this wasn’t the first nor the last time, I wasn’t going to give two shits about my reflection, mocking me. I sat waiting for him to tire himself out and fall asleep into the much needed nap he deserves, I deserved. As I am just about to give up and free him as he wishes the space around me silences and I know he has finally passed out. I dance in celebration. I debate on taking my own much needed nap or one of the other million things I could do while he lay sleeping. I peer into his crib to see his sweet angelic face, at peace. I crawl into bed and close my eyes, excitedly. Minutes pass and there I lay awake. “No, no, no.” I growl at myself. After I had made a mental note of my future to do list and had dwelled sufficiently on the past twenty-nine years of my life, I begin to drift asleep. “Momma.” I hear from cage that holds my son. My eyes snap open fearfully and as his soft voice begins to babble I sigh and pull myself from my bed and approach my son. I find him siting, staring up at me with a smile that could melt the coldest of winter’s. Even his baby blues were smiling, as if to say, thank you mom. I needed that. I reach in and lift him up into my arms and he holds on to my neck before I bring him to the floor to escape and cause whatever havoc he will, on the house. His laughter fills the house as he plays with his favorite toys and though the circle’s around my eyes darkened slightly from the ordeal I throw my hands up in defeat. There’s always bedtime, I think to myself. Who needs showers?

 

Drea

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When nightmares feel all to real

Most of my nightmares consist of me running, forever it seems. Being chased or chasing someone or something. Thankfully in my dreams I have stamina and the endurance to keep running. I often wake up with my legs feeling sore at times. I also tend to get into these grand battles, always fighting. Winning some, losing others.

Last night this was not the case at all, there was no running or fighting. Just panic and blood. It felt so incredibly real it took several minutes this morning to come to terms with the fact it was not real at all.

 

*Warning: Not suitable for all ages*

THE NIGHTMARE
I did not feel well and I couldn’t really explain how but it was different than my everyday pain and mental & emotional struggles caused by the 8 x 11 page list of disorders I bare. My heart was racing, my stomach turning. I stared into the mirror in the bathroom attempting to rid the awful taste of something horrible about to happen, out of my mouth. I rinsed my mouth out with mouthwash and as I spit five teeth coated in thick blood mixed with Listerine, fell from my mouth into the sink with a clank which seemed to echo. I covered my mouth with a shaky hand, attempting to bare my weight on the counter with the other. I coughed, choking on the blood and in reflex spit more blood into the sink. Followed by more teeth. My eyes widened. I gathered the pieces of myself I had just lost and I ran out into the house barely audible saying, “ER, watch him.” Referring to my six-year-old son. An argument or barter system would have played out if the blood had not been all over the outside of my mouth, leaking out into my hands as I spoke.

I drove myself to the ER as I always did in such situations. Salt stinging my eyes, begging a being I don’t believe in and even hate not to let this be it. My son needs me. My mind screamed, pulling into the ER, nearly colliding with a parked car parked over the line as people who drive SUV’s and other large vehicles always seem to do. I stumbled out of the car and into the emergency room doors nearly collapsing on the security guard. He caught me and partially carried me to the check in desk. I attempted to check in but when I spoke my words were colluded with blood and more teeth flew into my hands. I could only painfully stare into the woman’s eyes with trembling lips. Begging for help through my glossy eyes.

They took me back steadfast and most of the doctors in the ER came to see my strange condition. A specialist of sorts with sleek blonde hair pulled back into a low ponytail, tugged at her white coat while examining me. Her demeanor was cold and she made no effort to ease my discomfort or mental turmoil. She walked away to speak with the attending claiming my “infection” of sorts was due to a drug I most likely injected. So much judgment leaked out of her skin. Injecting myself was something I had never done and as I attempted to explain no words fell from my lips, only red and white. Unfortunately the only way to treat this insatiable infection was to know the specific strain and I had taken no such injectable drugs. For a moment death would be imminent. I began to thrash unwilling to accept this carved out fate. They attempted to hold me down and as ordered searched my body for needle marks anyway. I tried to tell them but was unable to speak clearly and so while they searched my skin I wrote in my own blood on the white bed sheet, “no injections, only medical pot.” Something I use to treat my disorders.

At this point my family and friends had begun to start showing up at the ER demanding answers on my condition. It seemed to always take something extreme for a response of care by action and not only empty words. I am not sure who it was who was actually able to speak with the doctors and chose to race back to house I live in to find my “stash,” as the doctor called it. Maybe my lack of faith to believe someone would think to do so. By some wave of luck the medical team was able to test the contents to find one of the glass mason jars of marijuana was in fact laced with a deadly substance causing rapid decay in my body. They began inserting the treatment into my IV and I felt it burning inside of my skin. Now I needed major surgery to remove the infection in my mouth and replacing all of my now missing teeth. They claimed they were optimistic in which the infection hadn’t spread anything further. At this point, I was not.

Assuming the treatment was working, a elderly woman with a limp wheeled a computer on a cart slowly and a stack of paperwork since I could not speak, into my room as naturally I had to apply for a medical credit card to pay for the expenses before they would start anything as they already screened that my insurance would not cover the “cosmetic” tooth replacement.  I filled out the paperwork. Twice, because I kept dripping blood accidentally onto it.

I handed the paperwork to the woman, suddenly dropping on the edge of the bed clenching my stomach as a sharp pain followed by cramping erupted through me causing me to vomit. I puked up some strange large mass of sorts that I honestly thought was an organ I might need. Finally, the doctor decided to start the surgery regardless of the status of my potential medical credit line. She up’d the dose of the treatment as they rushed me down the hall.

It was a strange feeling watching them as I felt myself leaving myself in a way as they put some sort of mask on me to help knock me out while someone else injected me with something but from my point of view it just felt like the ice queen specialist was putting a pillow over my face to smother me and I wondered if that would be so bad? I choked trying to talk through that mess, trying to say my sons name. I tried to smack the bed to draw anyone’s attention to it but I’m sure it only looked as if I was tapping at what I had already written as they were wheeling me down the hall toward the OR. It read, “single mom, autistic son. All he has. Please.”

I woke up in the dream alive, in a panic after the surgery. Wanting to see my son, to hold him.

Immediately I shot out of my own bed, actually awake. Not sure if I was in reality or not. Not realizing for a while that I had been dreaming all of those horrible moments.

Unsure which was worse.

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Today was a hard day

Today was a hard day. Days similar to today have tried to break me and sometimes I think where I find my strength is keeping it all deep inside of me wrapped up tightly with all the other things I bury for the sake of others.

I often write about how being bipolar feels to me. How depression binds me. I tend to shy away from sharing the part of what it is I actually go through to heal, to survive. The experiences themselves I hide only showing the pretty words strung together in a useable quote. To protect myself, to protect other’s maybe. Not today. Today I had to start over with a re-assesment of my mental health and well-being. I have come quite far from when I started my self-care just over five years ago. Yet, I cannot seem to do more than survive. 

I walked into the office feeling the same I do most days though it’s hard to describe. I mostly go through the motions of what needs to be done to get to the next day only to repeat the cycle. Lying to my brain that tomorrow, we can breathe, we can relax, we can have a good day and maybe we can do something we want to do without criticism, without guilt, without a time limit as my time has not been my own for such a long time now. So, I walk in and sit down and BamBam the therapy dog climbs up his giant stairs onto my psychiatrist’s desk and sits right in front of my face waiting for his pets.

Isn’t he adorable? So sweet and seemingly concerned of my well being. Throughout the session I would watch this look overtake my doctor filled with sadness, concern and so much empathy for what it is I endure. I was uncomfortable, I didn’t understand why? It seems that look is gone from so many familiar faces it was unrecognizable. Conditioned that what I endure is not as bad as it feels or not as severe because I am strong, because I survive, because I am a talented actress and the best performance of my life, is my life and because I am shown that I am selfish making such an experience feel unworthy. I fought tears during the 90 minute season as if crying was painful, or not allowed but really when I start I often cannot stop. Sure sometimes I want to be held, in silence but mostly I prefer these moments are when I am alone. I feel myself betraying myself by doing such a thing in front of another human being. Every part of my being screams to stop, Stop, STOP! I do temporarily, at least until she pokes another trigger.

I have control issues. Anytime I have “let go,” the consequences have been astronomical and I carry them always. They are as much a part of me as my bones, skin and blood is. The things that break me in session, are the same things that have been slowly killing me, making me sicker physically and mentally. It is part of who I am, to feel everything so intensely or feel nothing at all. I’m not really sure if that is part of my personality at this point or just a combination of Bipolar Disorder and all the other labels slapped on my chart. The main triggers, are naturally things I am not in control of. I drift while she types, watching BamBam now in his tiny dog bed, belly up and snoring louder than something so small should be able to. The third time she mentions how difficult my situation must be due to my son’s autism, I correct her firmly. “He is not a trigger.” My love for him and his for me is unconditional. WE accept each other exactly as we are. No one else does that. Maybe that is why the bond between mother and son or father and daughter seem to be so strong. I explained and she accepted.

After adding another diagnostic issue to my chart she asks cautiously if I would be wiling to see a trauma therapist. (Meanwhile I can still see my regular therapist.) Now of course how far I’ve come seems minuscule at this point. She says something along the lines of, “I know to you, you may not think what you have experienced is trauma but it doesn’t have to be physical to be considered trauma. You show classic sign of PTSD from the trauma you have experienced (specifically these 2 instances, including the sudden seemingly random onset of your disorder almost 18-19 years ago) and you have been in survival mode ever since.” My eyes filled quickly and suddenly. So much truth is, hard. I answer her questions, telling her things I would never tell another soul (but I want to feel better, so I do.) Telling her things I have told other’s but had received no reprieve or true help besides empty words, disinterest, judgment, etc. Blah, blah, blah.

We make a plan of action, the best we can with the hand we are dealt. BamBam wakes and comes over to me to say his goodbyes. I leave physically exhausted, mentally drained. Today was a hard day.

I left to pick my son up from school and we went home. Continued with all the things I am supposed to do, have to do to survive. Did all the things I can muster the strength to do with a smile; so my son is happy, healthy and feels loved for being exactly who he is, every single part of him that makes him who he is and allowing him to exist the way he needs ands wants to. My turn isn’t a real thing. It’s a wish list my doctor has on my chart and on this list there are other things she wants for me that I won’t allow myself to dwell on, to want (when I can help it), knowing there is always a barter to be made for a fraction of what I may want and sometimes a punishment of sorts for thinking about myself. Fighting for things I should have a right to, well I do not have the energy, will power or time for such silly things.

Tomorrow I will feel a little better, until I don’t again. Back and forth. My mental illness is a neurological (and genetic) condition I did nothing to aquire and no longer can tell if I deserve. But don’t worry, in a few days I’ll gather myself and be back to the approved version I have been shown, I am allowed to be.

Today was a hard day.

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“I think the saddest people always try their hardest to make people happy because they know what it’s like to feel absolutely worthless and they don’t want anyone else to feel like that.”

― Robin Williams

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Potty training my autistic son

We all know potty training can be a nightmare. There are memes floating around much like this one that we have all seen our friends and family posting on social media.

We all hear about how much better all lives involved, will be once our little one’s are potty trained. Potty training isn’t easy. Potty training an autistic child is an extremely difficult job. You can do this! Your child can do this! I decided to share what is working for me and my son in hopes it may help someone else.

Now, let me state that I am currently still potty training my 5 year old autistic son. This will be our third attempt. I’m happy to say we are making so much more progress this time! For many reasons, he is more ready this time around, so am I and I did countless hours of research to figure out ways to make it easier on not only him but on myself. Parent’s of children on the spectrum have all heard hundreds of times how no two kids with ASD (Autism Spectrum Disorder) are alike. Trying an approach that works for someone else’s kid may not work for yours. So, keep that in mind. Do your research, decide on what techniques you want to try. Try them and if one doesn’t work don’t be afraid to tweak your potty training program but most importantly once you commit to a regimen, do not quit. I know for my son he is all about his routine’s and isn’t a fan of me changing them up. So he argues with me when we do, but eventually he accepts that this is a part of his routine and we begin to make progress.

When your child begins to show signs they are wet with gestures or by removing wet or soiled diaper, this is a perfect time to begin potty training. My son is non-verbal so we use a pecs board or a board in the center room in the house with images he can hand me to request something. As we potty train, we hand over hand grab the picture and help him hand it to me and then go to the bathroom. (Until he learns to do it on his own.) So he has a clear understanding this is how to ask to use the bathroom. He has asked a few times to use the bathroom but we are in the beginning stages of potty training so I am prompted more than he is asking. This the universal picture that we use, as does his ASD preschool teacher, ABA therapists, etc.

·      I recommend starting on a weekend you don’t have any plans or appointments. I put him on the toilet first thing in the morning. I make sure to tell the teacher when I bring him to school, if he went and what time. It is so very important that everyone is being consistent with your child.
·      We use pull-ups during the day (no pants when at home, so it is easier for him to remove his pulp and so I can tell if he has already gone)  and diapers at night.  I take him to the toilet every 30-45 mins. Setting an alarm on your phone helps with this. Have him pull down his pants (saying, “Pull down your pants <child’s name here>”) and he sits on the toilet for about 10 minutes. We have ABA therapists (from Easter Seals) come to the house five days a week and they are doing a slightly different potty training regimen. When they are here they put him in underwear (no pants)  and they put him on the toilet every 15 minutes for 10 minutes. The also encourage him to drink more so that he has to the need to pee more often. More successful times using the toilet/potty makes the process easier.  (I don’t do this because it’s not practical for us but I’m sure if we could he would be potty trained much faster.) My son gets rewarded for using the toilet, we use grape suckers because they are his favorite and the only thing that seems to feel like an actual reward to him. Also, I allow my son to play on his iPad while sitting on the toilet. It keeps him calm and in good spirits when sitting there for so long. I have tried many potty seats. The cars one is cute. It has the ring that goes on the toilet and it’s a potty chair, however in my research I found teaching them to use a potty chair and then trying to teach them to use the toilet is difficult. Because he is 5 years old and 37lbs, sitting on the seat for long periods of time becomes uncomfortable as the cushion seat flattens and leaves a red imprint mark on his skin.

 

This one worked really well. No mark and he would sometimes sit for up to 20 minutes with no complaint but he is a boy and the shield just wasn’t quite high enough.

The one that is the winner in our house is the thomas the engine one. The shield in the front is the tallest I’ve found. You can buy it from amazon, here.

Okay it’s time for my major tip. This tip is primary for potty training boys. There is this company Tinkle Toonz, who makes the musical potty chair. The idea is you hear the music playing once your little one has used the bathroom. The sensor plays music once wet. The owner began selling the sensors from his toilet training chairs on their own once he found out that using the sensors on their own in underwear or pull-ups (cutting a slit in the pull ups and inserting the sensor. This works but the clean up is a bit messy for me.) was working wonders for parents trying to potty train autistic kids. 
This trick I came up with, with the sensor is helping us with potty training on such a huge level I had to share. This is the sensor, the metal part should be facing out. Put super glue on the back in the center circle part (plastic side). Place it on the potty seat centered where the “shield” is. Hold it for several minutes until the glue drys. Let the glue set over night. 

When your little guy begins to pee (even if an iPad is sitting on his lap and you can’t hear or see) the music will begin to play when they do! Don’t forget to praise your child! “Good job going pee in the potty!” or “You’re peeing in the potty, good job!”
Here is a video of how the sensor works and what the music sounds like. 
Another tip: When your child soils their diaper/pull up. Walk them to the bathroom and hand over hand dump the “poop” into the toilet out of the pull up/diaper/underwear and say, “This is where poop goes. Not in your diaper. Poop goes into the potty and then we flush it away.” 
Accidents will happen. If you opt for the underwear route, if they have an accident leave them in their soiled underwear and tell them “this is not where we go potty.” Take them to the bathroom and tell them, “This is where we go potty.” Repeat this three times and make them help clean it up. Hand over hand if needed. They will not like this at all and it gives them more incentive to use the toilet. When the ABA therapists are here I have noticed he has minimal messes at those times as he does not like having to clean it up.
Last thing, no one wants to carry around a giant potty ring when leaving the house. My son is afraid of the normal seat. I think it scares him that he might fall in and he isn’t sure how to sit on it. I found this fold up potty seat that has worked great for us so we don’t have to remain house bound. He will actually go when we are out because he feels secure on the seat. With certain toilets I do have to to hold onto it, so be aware of that. I have this one.

Remember, don’t get mad. Don’t yell but be stern. If they wont sit there for 5-10 minutes it might not be time yet. Give it a month and try again or even 6 months. No one knows your child better than you do. The first time we tried to potty train was a year ago. He was showing the signs of being ready, wanting his dirty or wet diaper off.  But he had no patience or ability to sit on the toilet for any length of time. It was a huge fight and he was often hysterical. So just breathe. Don’t get discouraged. I hope that any or all of this helps you moms and dads out there with potty training! Good luck and Godspeed. 😉

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Love and Autism

I love my son more than I thought was ever possible. From the moment I found out that I was pregnant my life changed forever. When I first saw his steel baby blues looking up at me I was swimming in his love. We had a terrible scare when he was only a month old resulting in him needing surgery on thanksgiving day of 2010. I was a wreck, there was nothing I could do to ease what he was going through and he was too young to explain that everything would be okay, and it was. I remember the first time I played peek-a-boo with him not knowing at his age he would think I disappeared forever but in time he learned to love the game. I watched him hit milestones so proudly all while terrified if I was doing all I could for him. One day I noticed, others noticed really, he wasn’t looking at us. Down the road I found out he has autism spectrum disorder. It was the second scariest experience of my life. He has made such amazing progress through early child development and autism programs. I love him, just the way he is. The way he laughs with every part of his being and smiles as if the world is the most amazing thing he’s ever encountered. Sure he won’t even try this sippy cup idea and loves his bottles as if they are the most important thing in the world, next to his IPad. His iPad that has shown us all how incredibly smart he is though he doesn’t have the words to tell us. He amazes me every day, and drives me crazy as toddlers do. Most days I am only grateful for the blessing he is in my life. Sometimes I see kids his age, tell their mother’s they love them and a piece of me cries for that moment. Its possible I may never hear those words from his lips. My new terrifying thought that wanders my mind. If he never does, he shows me, everyday. I know he loves me. So no, I’m not sad that he is autistic and please don’t aww and give me a pitiful look in response. He is amazing and I will continue to do all I can to give him all the tools he needs to exceed other’s expectations and reach incredible goals he has yet to set for himself. I will shower him with love and kindness so he knows how to treat others. I will set rules and boundaries for his safety and well being and not because I’m scared of the what if’s in life. Just as I was taught, I will teach him to be the best he can be and give him the room he needs to achieve it and the help when he wants it. It’s true when they say your children become your world. They are our world and one day they will be the ones running the world we live in. Isn’t it only fair we do all we can to make it the best possible life they can live? As he hands me his bottle requesting more with that breathtaking smile, I smile back and kiss his forehead. In that moment I feel his love and that is everything to me.

Proud momma