They like me… They really like me!

The other night there was the usual tuck in routine. The reminders and partial hugs. There were lucky kisses from Johnna and caressing Sammy’s nose. But as I walked away f3om the rooms Sammy called out to me. I went back and she says “people notice me this year.” Her eyes were excited and asked what ahe meant. This 10 year old girl having such huge desire to have friends and fit in looked at me with such joy and pride to tell me…

“People I don’t know their names say hi Sammy. They know my name even if I don’t know them. People notice me now!”

It was amazing. I have not seen her so excited with exception of recognizing she has been friends with her bestie for 2 years and her friend that moved to New York came back to AZ. Those 2 wonderful friends are great but go to different schools. This joy now was in her every day routine. When I asked her why people might be noticing her this year she told me…

“I have more friends this year. I have 2 friends! And they help me and talk to me and I’m not alone at lunch with tag t recess. I have 2 very good school friends”

She typically will attach to someone who is nice to her and then in 2 weeks that person stops spending time with her or interest. They might say hi but then ignore her. Each one would be a new best friend and each one would be a heartbreak. Year after year with only one exception that we actually met outside of school. And with each time she’s come home and finally remember the name the next week would be sadness and fear.

As you can imagine the first time she talked about the one friend over 3 weeks ago I was mentally preparing for the separation. And 2 weeks into it Sammy’s drawing recess buddy was replaced by tag. But the new friend still sat with her at lunch and talked about roblox. At week 3 tag was the new obsession and it was always with another friend. Some times her drawing buddy joined them too. Now at week 4 my Sammy has made a huge leap.

Sammy feels noticed! She feels recognized for being herself. She feels confident at school and on the bus and on the playground. For the first time I am hearing stories of her conversations at school and the fun they have all 3 together. She even recognized that they will all go to the same middle school. She was able to tell me some background to her drawing buddy too and she wants to give them our phone numbers to play outside of the school setting.

Today my Sammy seems like a tween and I couldn’t be happier. With the moodiness and meltdowns and other challenges she may face day to day this big emotion and change shows that peers make a difference and social needs are a necessity. She knows we love and care For her with all our hearts but that connection she has made is bigger than anything else right now.

May it continue and fluctuate this year and the future to show growth and maturity that we some times wonder if she can reach. And as she feels new emotions, makes more friends and meets struggles perhaps she will have more confidence to recognize that she is still noticed and loved! Of the joy of such passion for friendships!

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What to do? Harsh reality of our lives

A French fries on the dashboard. A solitary remnant of an explosive situation. It mocked me as I drove home a couple weeks ago.it reminded me of the last 2 hours of extreme emotions from calm to confused to surprised to scared to embarrassed to frustration to concern. I tool it’s picture at the stop light to make it’s reflective reminder subside until I could find it again and take on a deeper reflection of those 2 hours and how you never know what simplistic idea can result in unleashing a beast inside of rage and despair. And how that beast can turn back to an innocent ladybug with tears and regret.

Thursday afternoon routine is me picking Samantha up from school and heading to any stop for a snack as we gear up for Speech Therapy. This session went well and she happily played on her iPad as reward before we left the waiting room to make our next stop at the psychologist. Some days 2 snacks will get her through these hours of appointments. Other days her speech therapy results in a hunger that can only be met with a more substantial meal. This was one of those days and I happily agrees that we would go through the Wendy’s drive-thru and get her the four-for-four meal that she prefers. She joyfully and emphatically repeated how hungry she was the entire 15 minute drive. I jokingly chanted that we were on our way to Wendy’s and no way to go faster. I figured I was on top of things. I was meeting her need that would keep the peace as we meet with the psychologist every week and talk about the days past and the goals ahead. I was not expecting what happened next.

Staring at the menu I realized I had not eaten lunch myself so I would get a four-for-four that I would eat a bacon cheese burger and get a cheeseburger kids meal because it is made exactly to her liking of only ketchup. I could have a small drink of sprite while she enjoyed her regular size Fanta. Felt like a win-win as I ordered. At the first window and for what feels like the first time ever, the employee repeated the order quite loudly and Samantha understood that her four for four was not going to have her cheeseburger with only ketchup. There was no turning back. She screamed instantaneously as the employee finished repeating the order. She was infatic that the cheeseburger in the kids meal was smaller than the cheeseburger that came with the other meal. I calmly asked Maya the Wendy’s employee to reassure us that the cheeseburgers were the same size. Her response, as my daughter screamed louder and louder was that she did not know since it was her first day. She then made the comment that when she was younger ” if we didn’t like the food we didn’t eat.” I very kindly said it must have been nice to not have autism. Her response as Sammy started kicking the seat and hitting the car door was that of Shame and perhaps she will think twice next time before she adds her personal feelings but that’s a whole different discussion.

I made it to the next window with a car behind me. The intensity of Sammy’s screams made it difficult to hear the lady at the next window. She handed me the bags first as I try to find Space to put the drinks in the front seat. There was no way I was handing a full cup of soda to a meltdown in the backseat. As I place the bags of food on the passenger side of the front seats I had no time to stop Sammy from reaching the bag of kids meal and smashing it with her fist in the back seat. I put the cups as steady as I could and grab the bag from her. Perhaps that’s when my French fry friend landed on the dashboard, but I am not for sure. All I know is I wanted to get the 5-minute drive out of the way to the psychologist parking lot. I wanted to turn the car off and keep us safe. I wanted the screaming to stop and the kicking to cease. I wanted her to eat something as sometimes that can ease her stress in these moments of hanger.

I put the bag on the floor of the front seat. She angrily kept forward and grabbed the other. It flung to the ceiling and crashes down on my seat. I had made it the one of 2 blocks. She tried to get the drinks but I successfully blocked her with my arm. I made the turn… focused on parking any which way in the fairly empty lot. Put the car on park and faces my little beast.

She was twisted airways and kicking the window of the car. She seemed faster than lightning and stronger than a grow man. She whipped around all feet and arms, thrashing out of control. It was surreal. It was terrifying. It was near comical when a brief moment occurred and she fairly calmly asked for her cheeseburger. I obliged in hopes that the sustenance would release somw of her emotional pressure. She took it gently in her right hand, looked me straight in the eyes, and smashed it with her left fist.

I was quiet. She can’t understand anything in this mode. I removed the item, drove to an actual parking spot and waited. She eagerly picked up fries and chicken nuggets off the seat and floor. She held them close and tight in her hands. She put a fry in her mouth and glared at me with such disdain it was heartbreaking. But no screaming.

We sat there in quiet and thick emotional bewilderment. I was disoriented finally. My shoulder hurt from a kick so hard I blurted profanity earlier. And I looked at the great divide that was the parking space to the office courtyard. I wanted to get to safety. I wanted a reprieve from a 30 minute piece of insanity. I wanted someone else to see, hear and help with this intense situation about cheeseburger orders.

She munched on a nugget. Perhaps she could follow direction. perhaps she could get to the familiar waiting room and color while she finished what little was left of the order. In a calm yet stern voice I directed her get out as I quickly got out to head to her side. I felt like this was a win. That we can review and move forward. I was wrong.

Her glare was back and she bolted into the parking lot or the front sidewalk. She would not stop. I had to nearly tackle her you prevent her from walking off into the distance. I gracefully bear hug my daughter is a right direction and got her into the courtyard. She promptly sat down and started throwing rocks. As I attempted to shift her back up she resisted. Demon scream just a random sound and it took three tries to get her in the door. Once in it took three more times to keep her from walking out. I felt bad for the couple and their young son as I force my daughter into the small waiting room. They were there for their own reasons and I could see there was compassion in the mother’s eyes. She even offered to hold my purse and at one point help to block the door. But I managed to get her in and block the door. As she looked around at this familiar room she proceeded to shove all the magazines off the corner table just as I removed the plant and tip it over to hide behind. Once there she proceeded to eat the remaining few fries and asked for the fanta. I looked and hadn’t realized that they all.of this I had been carrying the drink.

Exhausted and frustrated I looked her in the eye and said “it’s my fanta now. Get some water from the cooler.” And although it may seem wrong, that statement felt good. That fanta tasted good as the sweat dripped from my forehead and I enjoyed this somehow unspilt orange sugary drink that I typically loathed. Her posture calmed and straightened from the beast to a girl of placating sympathies. The sorry was said over and over. And she tried to snuggle after she peacefully placed the table upright and replaced he magazines to their usual spots. I was not ready to forgive. My emotions were still heightened and I slowly and deliberately let her know I was not ready. She accepted this fate as the psychologist welcomed us to our newest discussions of restitution and forgiveness.

Now I did forgive her after we got home and all the sad and ooey gooey apologies continued. And the car was supervised as she cleaned every piece of Wendy’s debris from every crevice, including my lonely dashboard French frie. I provided her the relief of forgiveness and my ability to allow amendments to the process as well as the reasoning for my ordering method. And perhaps there is no better time to face such a demon as right before you see a psychologist that helps make sense of the madness.

But the harsh reality is this… How can I tell what will set off such an explosive and enclosed situation? How do I explain to my doctor that my bum shoulder has been damaged into shock from a ten year old who didn’t like how I ordered our food at Wendy’s? Well… you never know what innocent process might have this result, you hope it never happens in others harms way and you tell the doc a brief “my daughter had a meltdown in the back seat a week ago and kicked my shoulder blade.” Then you move on with an ever present question of when will this happen again and how can I handle it different because you can’t rely on your daughter with autism to control her emotions at all times. But you don’t eat that true on the dashboard… gross!

Thank You Young Man… 1st Day of School

Good morning for first day of school went smooth and Timely. Sammy got ready like a champ. Her backpack and her sensory tools and her first day of school lunch all set to go. She ate a good breakfast and she got on the bus just fine. I was one Happy Mama!

After school there were some challenges that she and I both were able to overcome. It lasted a while but slightly expected after having what her teacher called a great day at school. She was smiling when I picked her up and she talked about her day a little bit period. Even her speech therapy and psychology routine appointment went well. With that said there was one thing that keeps coming to my mind about her first day at school.

When asking about any people she knew and her classmates, she told me that there was a nice boy sitting next to her in school today. When I asked what made him so nice she told me that classroom had gotten pretty loud. She was starting to cry at her desk. This young man added her back and told her that everything would be okay. There are two things that stand out regarding this scenario. One is that she allowed somebody to touch her while she was upset and it didn’t cause her to escalate. But the bigger meaning is that this young man took the time to reassure her without even knowing who she is and made an effort to help calm her down. That is an impressive action for us to see from both a young man and my daughter. So much so that I made sure to tell the teacher how much that meant to us as Sammy’s family. I want to encourage this young man who continue that compassion and caring for other people. Will Sammy remember his name today? Maybe not. But she will sit at her desk comforted that somebody would care about how she felt. As we learned the more details to the situation, the teacher noticed her getting upset and when she get her noise cancelling headphones. While waiting to get the headphones is when this young man assured her headphones would be there soon.

I am proud of her and I am proud of her classmate.

Back to school blues

No matter how we talk, prep, encourage and praise a new school year is stressful. The plan… Back to bedtime 30 minutes earlier, talking about lunch possibilities, get sensory tools for the backpack, let her pick as many of the school supplies she can, and invest in a gum company for the upcoming supply of chewing needs. We even have an accommodation for meet the teacher early so it’s calmer and quiet. We have her habitation provider meet us so we can be freer to talk to the teacher. I bring notes, advice and an open mind to the new person responsible for my Bitty Boo.

Well… the confidence of heading from Johnna’s classroom toward her own diminished with the last turn in the quiet hallways and she lowered her head, stuck her tongue out of mouth, gripped her hands super tight, turned and walked the opposite direction. Kate followed and talked calmly with her while we met the teacher in the room. Johnna was excited to recognize Sammy’s teacher’s son and we went about our updating routine, communication needs and encouragement that he seek put her prepared tool kit and speech to text supplies for the first day.

We could hear Sammy outside the door and I peeked put. She was almost ready. We brought her the colorful strip to write her name on for her desk. She hid behind her dad and sat there. She eventually wrote it in hiding and the teacher offered to leave the classroom for a minute so she might go in and she crawled in, mumbling and baby talking then yelling because someone else was there, the teacher’s 4 year old. As she went under a desk we decided that would be hers and put her items in it. As she finally stood and looked around she got calmer and her teacher had quietly re-entered the room.

He asked her some simple fun questions and we helped highlight her love for bugs and dragons. She may not have made eye contact but she did give a high five when asked and our 30 minute meet the teacher time was over. And it went well all things considered. We praised her for talking to the teacher and giving him a high five.

We left with a brief chat with the principal in private as he placated us with “she’ll be fine once she sees her friends.” And I reminded him of her heartbreak as kid after kid declined her offers of friendship or took our phone number from Sammy only to go days and days with her repeatedly asking me if anyone called and they hadn’t. Her one kinda friend didn’t socialize much herself and the return to Sammy doesn’t bring the joy of rejoining friends. He listened and stopped the untruth with a nod and agreement to the challenges faced last year.

Sammy was down the hall joyfully ready to leave. We rejoined them and headed home. We went out for dinner and ahe had her favorite… crab! She finished her evening reward time on the iPad and went agreeable to bed at school bed time only to obsess and have extreme anxiety about starting school later this week. The picture shows her efforts to try and disengage with her favorite things. It didn’t work.

2 hours of tears, talks, repositioning, and changing from bunk to bunk to floor. She finally was able to shore at 10pm. Tonight was positive conversations in the afternoon and evening. Routine reviewed for the first day of school. She could do it with a good demeanor. She ate a nice dinner and talked about healthy snacks for school. Then bedtime came, seemed calmer and boom… every item thrown from the top bunk. Tears and reflection again on the fears of going back Thursday and this time I provided reassurance and melatonin. And only one hour of anxiety about the process of Back to School.

Every year… beginning and end of the school year. We try to duplicate what worked in the past and focus on her positives and favorite things. And every year my heart breaks watching my Bitty Boo struggle. And as she gets older, now 10, she becomes more aware of her challenges and Want a to hide from thwm and those who don’t know her well enough to see her smile, hear her laugh and watch her create amazing pictures and crafts! May this year prove to be the one with a connection with just that one kid that can support each other as she faces middle school next year. Someone else that can take away that loneliness she battles all school year long. Maybe this is the year.

What’s A Mom To Do?

See that smiling face. Look at those sparkling eyes. That is the face of a very happy Sammy Lynn. Her future is bright and full of Mystery. And picture after picture with milestone after milestone brings joy to us, her parents. I can capture so many smiling pictures. I can dream her dreams and wish upon a star for that bright future to this day. I can post the fun we have and the successes we see. Because I love this girl with all my heart and will do anything to help her through life, to learn how to face life’s challenges and make new friends. Sure… I do all that every day for my Bitty Boo.

But it comes with significant decisions. Choices in training, therapies, doctors, case managers and education. I don’t know what to do. How would I. Sure I worked with people with disabilities for years but I didn’t know their day to day lives. I didn’t realize how intense every day could be. Result… lots of appointments, referrals, recommendations, and meetings. And the meds… oh the meds.

It started so long ago… Well 5 years. And I was desperate to see her smile so bright again. To not see her struggle and scream and cry for hours. To be able to focus and learn. To interact and verbalize her emotions without chewing on everything and anything. To see her smile bright.

I have fought long and hard. There have been services and trials, success and set backs, meds and no meds. Pharmacy calls and doctor emails have become a normal part of life. There is a 6 page document I created to track all specialists, agencies, and tests. There is a full page list of current medications I update as needed and lists her conditions. There are IEP binders used year after year to review and update hee education needs too. And there are countless times of explaining her birth, my pregnancy, all of her firsts which people listen to or read in disbelief as she was counting, highly descriptive verbally and brilliant about colors. She walked early, taped early, rolled over very early, and loved loved loves crafts and ladybugs. And each time I have to recall those milestones it reminds me of the first picture, of the girl with everything possible ahead of her.

But this is not our reality. This is the life right now and how we have to consider every possible resource, services, therapy to try. The fury, outbursts, anger and intense emotional episodes that can happen in the blink of an eye. Her concept of consequence is minimal. Her ability to recognize the trigger, keep positive and calm herself are minimal. And after any outing where she does keep it as inside as possible, like school or group, it explodes out of her at home. So medications have become part of life.

And to date there have been 8 horrific responses to those related to mood stability and anxiety for focus control. 3 have been successful for short periods of time. And the last full combo resulted in significant blood pressure drops. Those had to be reduced in dose (blood pressure alpha blocker and a beta blocker) which resulted in relapse of anxiety and mood issues. It was devastating to know that three weeks after the reduction she would get so anxious again and depressive. Already having therapy for weekly occupational and speech, summer treatment program in place, habitation provider twice a week and weekly psychology visits as well as a routine home life and therapeutic weekend programming twice a month we have no where to go but medication again and tests.

So we wait for the EEG results for her seizures. I listened as her cardiologist says her heart murmur is still ok and oh, by the way, that hole in her heart is good still too (I didn’t recall anyone ever telling me she had a hole from her last 3 echo cardiograms!) And I looked to her psychiatric nurse practitioner for help. A new med out in the world, similar pharm family as ability which had helped in the past but she got to max dose in a year with her behavior returning. So sure, let’s try it in hopes it helps and can wean her off one of the BP ones.

Well… 2 and a half weeks in and it’s back to a year ago for behaviors. 3 major meltdowns in 1 week. One lasted 1 and a half hours. I have watched her struggle, attack me, throw things and chew on whatever she can from Kleenex to a shoe, the seat belt. I have had her sister goto her roo. And shut the door waiting for me to come get her when it’s safe. I have watched her anxiety come out in quick short bursts where impulse control is gone and she has put herself at risk. And I have noticed her patterns change for the worse and reviewed with the psych NP to in fact stop the new medication and regroup next week.

So what’s a Mom To Do? Well this mom will hold her daughter when she lets me. This mom will wait patiently for that new drug to get out of Sammy’s system to help her normalize again. This mom will update all the doctors and therapists with expected behavior. This mom will explain to her 10 year old that her brain didn’t react to this new pill for her progress so it is done. This mom will look to her daughter’s future and continue to fight, research, review and schedule whatever can bring that bright smile to Sammy’s life every day. And if that means trying another medication, them yes this mom will review it and have Sammy try it if it means a calmer and happier life for my daughter.

Fight the dragon or Ride it? The choice is ours!

This picture courtesy of

Adam Orndorf

And when I look at this wonderful rendition of my daughter it makes me smile and fill with emotion for all of her accomplishments in life so far. Her mind and body go through so much in one day. There are the sounds and the touches, the sites and the excitement, and the desire for things to be even and planned and comfortable and calm at the same time. As she tries to tame her daily internal struggles she attempts to present a socially acceptable demeanor to the point of buildup in her own inner fire. She has met a dragon at such a young age and the time is now to tame and ride him into the horizon.

A fight or flight Instinct in everyone is a daily battle for her. We have seen the best and the worst of times so far and every month, every week, every day is a challenge. And it is our job as her family to help her tame her inner dragon and learn to control her impulse and emotions as she grows and learns. This comes with its own sense of urgency and acceptability in every moment. She and we have to be on the lookout at all times for the triggers of the dragon attack and the tools to tame it.

We learned early on that much like her favorite movies and show How to Train Your Dragon that fighting the Beast would be a never-ending battle. The battle was long and hard until we found that we could befriend her own dragon. With the support of everyone around her and the hard work of finding what works and doesn’t, she has gotten control of her dragon. Will he fly off without her at times? Yes he will. Will he buck her off in mid-flight at times? Most definitely as we have seen over the years. But will she put her hand out and welcome her dragon as her friend once again? She most definitely will and does nearly every day.

The anxiety and depression and sensory overload that may cause her Dragon to get the best of her is often offset by her friends and family and medical needs. And as she continues this comfort in her relationship with him she shows the confidence that is needed to accept that support and love. Whether it’s an intervention, a patient waiting game, or a need to throw the dragon a fish or two, she has the tools to train the dragon and now battle those who dare to separate her from his back. And she is learning to be at peace with accepting the things she must do to keep that relationship strong.

And although the support from those family and friends are her greatest tool she also needs the medications to help stabilize them when they are not around. And she continues on her Adventure and takes joy in seeing the king of dragons, the combination for succesd. She wisely takes her pills and hopes that each one will give her even more courage and strength to get through the day. Tomorrow she will try yet another pill for that very reason. And as she has grown in her young wisdom she is hopeful that this one will add an additional layer of armor to her emotional stability. She knows what to look for now and how she may change in Mind and Spirit. She has a better understanding of how that same pill and it’s hopeful sway of emotion may also result in a separation from her dragon that she can no longer live without.

As she flies her Dragon into tomorrow and the unknown of medication response, we will support her and watch her and give her the encouragement to relax her grip and fly. To have no hidden battles with other dragons that may appear. To have no fire balls come from inside and flare and light up the sky in terror. May she feel the calmness of a new day with the breeze in her hair and the sun in the sky. As much as we struggle to give her a new pill we know that each opportunity to keep her on the saddle of her dragon is another day of hope that she can be the best dragon rider she can be. Someday she will be dragon master and her dragon will be king.

To be Present, Avoid the Grudge

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People hold grudges. Most people to some degree will hold a grudge for a few minutes or a few hours or a few days. Sadly some people hold grudges for years and years never to recover from whatever made them so upset. It runs in the family. It’s a habit for some people. It is not a way to live or think or model your life after.

Then again there are those that can move right along. And there is something to be said for that relief and release of emotion. In my experiences personally I gave the challenges of living with the knowledge of the grudge and see how it affects others. I have also had the honor of respecting life choices for those who deem the deletion of one who wrongs them from their lives. My job is people, relationships, psychosocial interaction and the chaos that can result from a life of guilt, remorse, regret at the very end.

My home life is one of constant flux while also facing routine and necessity foe love, laughter, tears and fears. If I go to bed upset about something I am destined to wake with that concern only to relive it and process it for the eventual acceptance or need for support. In a world of criticism from people, family, friends in person or calls or texts or social media I find a need for inner peace and struggle for my balance as so many of us do.

So when time seems to get away from me and that balance is nowhere in sight I look around. Little things come to me at the weirdest and most appropriate times. One such time was Monday. It had been hectic with a new routine of my niece being picked up to watch my girls. Some frustrations after a state survey the previous week. The release of a 3 day weekend of fun that was reluctantly over.

As I went about my day feeling grumpy and not ready to face the daily grind I smile and go about it all. I find joy in special relationships at work and rearrange my workload to meet the needs of the day. As I leave I relish the 45 minute car ride to get the kids, hoping the traffic doesn’t come to a standstill. Everything goes off without a hitch. The ride to Sammy’s occupational therapy is full of the usual sibling rivalry and Sammy repeatedly asking a question or whining about something not fully understood by my brain. She sits and plays awaiting Miss Stacy. The routine.

Then, while she is back there and the parents and siblings are collected in a waiting room there was a conversation. I have spoken with one of the mom’s a hundred times. One of the others I have conversed with on occasion and we all share the life of familiarity. It is comforting and you know that comfort as people share their world’s beyond their child with a disability. And there it is… th grudge, the reflection, he past haunting or disturbing someone.

So Monday it hits me… it’s human nature, a common bond. And it comes back to the kids at which time I recall how Sammy lives in the present. She obsessed on the future also and has anxiety about something in the moment but I have yet to see her reflect and hold a grudge. She also doesn’t learn from her mistakes easily or have a reflection of consequences that help her me and but she can truly enjoy the moment, the present, the now. She doesn’t use energy on the past although she may call her new teacher the previous teachers name for 2 months but that’s habit not living in the past.

And if she goes to bed upset or frustrated she doesn’t have immediate reflection on it. Will she jump back on track for an upcoming event or a promise from the day before? Sure. But she won’t stay mad at someone she fought with. She doesn’t dwell on a missed activi4y or event. She simply wants to know her day, her new day. It’s not that she can’t remember and perhaps there is some brain differences (her sister reflects just fine on the previous events in life) but Sammy almost gets a clean slate of energy for her new day.

As I shared this with that other mom Monday, sitting in that waiting room at therapy for the 209th time or more, she shares the enlightenment of her own child’s ability to be in the moment… good or bad. And we envy them. We aspire to be more in the moment and seek an understanding to move forward and let others do the same. A joy on its own that, when I find it and take the time, I can enjoy living now and not worrying about the past or future.