How do you take this and bring it to a sleep study? How do you alleviate her anxiety about going… no matter how much I tell her the wires are all things she has experienced for other doctors? No needles or special pills are needed. Expect the staff to be patient and kind. Mommy will be with her. But nothing brings relief as it gets closer.

The unexpected for anyone is stressful. I reflected today at I got my 10th mammogram how nervous I was for my first one so long ago. I imagine she feels like that only ten times more intense. We all provided support and reassurance. Besides… her daddy did a sleep study few years ago and nothing hurt right?

Well it was more intense than she expected. Yes there were wires for her chest and head but also 2 on each leg. And a strap across her tummy and one across her chest. And those wires on her head had some for her face. There had to be one on her neck for her breathing and one on her shoulder for co2. Nothing about the amount of plugs was in the “what you can expect” brochure. And especially not the nasal sensors needed to watch your nose breathing patterns. That was the toughest of all!


What would take 10 minutes took her 60. The nasal cannula needed another bribe. And I was proud of her for verbalizing the reason it was so hard… her nose is VERY sensitive to things in it. It is the reason she hates to blow boogers out when she’s sick. She would rather suck them in and throw up after a few days. (We encourage the blowing but once she starts you better have a full box because she has to do it until all boogers are cleared)

So there she was all hooked up and Netflix in hand after a quick room change due to technical difficulties. She zonked out at 2 hours past her normal bedtime. As for me, I was asked a million times if I wanted to lay on the bed with her or hold her hand, sit with her in a double chair. I listened to the tech ask sammy if she wanted me to do those things. Both of us knew the answer… no. In moments of stress her sensory issues heighten and she does not want to be touched. Don’t get me wrong, she wants me there in a separate chair near her but just not to touch her. I learned this years ago when she was just a toddler and yet I still offer.

It breaks my heart to not be able to comfort her physically with my embrace, hand holding or kisses but I have learned to respect her answer and she has learned to tolerate my questioning it and attempts. With every appointment and public meltdown I find myself having to explain to the people around her that it isn’t comforting to her. My mom brain hugs her in thought alone. But she did ask me to bring a chair next to her bed even when we had to change rooms and she was falling asleep. And I did while I watched her eyes close and slumber take over with half the bed empty except her wires.
And I journeyed to my sofa bed which did get some blankets on it. And I lay there watching her bed while I fell asleep snoring only to waken her slumber with my exhausted sleep every hour. And I would waken to the room door opening as the tech made adjustments to computers and sensors. It was a long short night from 10pm-5am. One we both would like to forget but now she knows for future reference what a sleep study is like. We hope to hear positive results in the near future so we can finally move forward with her ENT for adenoids removal and now possibly tonsils.

You see, it wasn’t a “just to see” kind of test and she knows it is to be sure before surgery that we know exactly what the doctor needs to do. And it’s for that reason I would do it all again if it meant one less or one more medical need to be done with certainty, not an assumption. And that’s what sammy took away from it… so we know for sure for her best sammy. It is her understanding that after things like this she gets help in an area and feels better. So she too is hoping that o cent this is all said and done she won’t be so congested and have difficulty with sleeping all the time. And I sure hope that is the end result for my sweet girl.


Friends make a difference… for my kids and me

We made it through the fall break. The time where patterns change and routine takes away side to a more flexible schedule. To some it is a pause in school year while to those of jazz us it is a fearful transition with the unknown ahead. But what we did know was that we were going on vacation with friends and family. What we did know was Upon Our return we’re going to see more friends and have more fun. And when the break was over it was time to see full friends once again that we had missed during break.

Friends friends friends… for the first time there is longevity starting with natural friendships. What does that mean? It means a friends ahe has fully made on her own. Her other friends where we met at therapy are awesome friends! Don’t get me wrong. We love our time with them. But all these years it has been an effort to make friends on her own for Sammy.

The pattern is this… She likes someone at school. The kid is nice to her and Sammy gets obsessive and inflexible to trying differwnt things and in 2 weeks it is a crash, no longer does that kid have the patience for Sammy’s energy. She gets sad and then maybe another kid is nice to her… for 2 weeks… And then done. She has given our number and email out so many times and then begged me to check my phone over and over and over just waiting for the kid to reach out to her. And nothing. It would break her heart and mine.

In 5th grade this year for the first time she has made two friends that have been of conversation in our home for more than 4 weeks. This Friday is the Pumpkin Walk at school and although one of them has told her he would not be there her other friend might. All week she has talked about how we can meet her friends at school. She has talked about having other friends because these two kids have their own group of friends also. She is being recognized because of this in her world. It lightens her eyes and bring such smiles to her face. It is a beautiful and wonderful thing to hear her talk about the future in middle school next year and being in the school with these two friends.

As I reflect on her past and look to her future I see hope in her day-to-day life. I see a chance for her to grow emotionally as she is more surrounded by her peers. Why is this your different? There is a love for her feature and a year of therapy. There has been a new social group that last 48 hours straight. Those things alone are not the full reasons I’m sure but I know how important they have been to guiding her in this new direction.

Her long standing friendships with 2 kids outside of school has helped as well. It’s a chance to be herself and be part of their lives on both of their terms, not because they are stuck at school together. They have grown together these last couple years and are at ease. And she looks so forward to getting together and their tume together shows all of their changes and comfort with being together. The ability to copy those skills with strangers is a challenge but one that she may overcome. The joy of friendship brightens her spirit!

Do I worry how she interacts? Sure. Do I fret the day she comes home in tears because one friend said something mean? Yep. Am I on eggshells whenever I ask about her day and recess? Absolutely. Because I too went through the pains of every kid that stopped talking to her, didn’t call, or didn’t invite her to a party. And I will be hopeful that these new binds will last and I will be here for her if something takes a wrong turn.

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!

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.