Another holiday complete. Can we breathe now?

Going to reflect as decorations are put away. I had a sadness inside as the ornaments went into their boxes and stockings are stuffed away for another year. I thought of our holidays trials like meeting santa… a bit stressful yet all were glad we went to the special needs sitting. And the constant cries of when, where, what and why. But there was laughter. There was love and there was friends and family.  We had days off to focus on the meaning and be together this year.20181202_100054so the warm fuzzies and craziness are packed away in cozy bun after bin as we look to the new year tomorrow. Tomorrow. 2019! A time for birthdays, new schools, new appointments, and so much more! So we settle in tonight for new years eve.

Candles are lit. Sparkling cider is ready to pour and Princess and The Frog are in the TV.  There are giggles and calmness. The dog lays on her blanket chewing on some Christmas toys. Dinner will be leftovers and only fireworks will be on TV later. Ahhhhhhhhhhh.  So for right now, this very moment, I finish typing to cherish this time and look to 2019 not for appointments, school, work and doctors but for a fresh year of love, achievements, friends with laughter and family!

 

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HAPPY NEW YEAR EVERYONE!

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My Bitty Boo. She’s got it all!

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Since she was 2 weeks old it has felt like test after test after test. Sammy has more specialist than I do. She has cardiology for murmurs and a hole in her heart. She has neurology for her autism, seizures and ADHD. She has an endocrinologist for her high-risk Hashimoto’s and puberty onset. She has a psychiatric nurse practitioner for her behaviors and anxiety. She has a psychologist on a weekly basis for her behaviors and her mood depression, and anxiety. She sees an occupational therapist and a speech therapist. She has a lovely primary physician and dentist. She recently added a genetics Dr which showed no signs of genetic cause for her autism, seizures, or any other intellectual disabilities. And she has Dr Richardson ENT. She is her ear nose and throat doctor. We see all of them routinely. As a matter of fact,we see her ENT tomorrow… tomorrow we hear all about sammy’s obstructive sleep apnea and the surgeries needed to fix it.

We knew by chance on a brain scan that Sammy’s intense sinus and allergy and cold responses were related to a 90% blockage from her adenoids. But what about the snoring and what feels like a lifetime to me for pauses in her sleep some nights when I check in on her? ENT felt tonsils should come out. I said prove it. Sleep study accomplished and now we head into the holidays planning surgery. Fingers crossed it is for after Christmas and before SeaWorld mid January.

And with each new specialist something new can come up. New perspective on causes of her behaviors. New tests to try and focus in a different area of her needs. A new time for her to display all her traits due to nervousness. It takes several visits to the doctors and specialists before she starts coming in calmer and more cooperative. And a new person to shed their light on her life and ours. I too get nervous about it. We have been thru many who either pushed pills only or felt it was “just her autism” and dismissed her color spots or chewing or staring off (3 years of seizures they said she didn’t have) and never took the time for getting to the core of what causes any of it.

What’s the point of this listing and rant you may wonder? Well for this tired mom to vent. It’s a time to see the complicated world of medical needs people face. This is our world with Sammy. This is a mere part. It doesn’t include the therapies and counseling. The pharmacy tracking. The behavior coaching. The fear of insurance issues… which is big right now as one of the major children’s hospitals is working on contracts with BCBS into December and department of developmental disabilities restructures coverage plans for Medicaid in October 2019. Dont forget school… the IEPs and METs and REDs. The school versus home life challenges. That meeting is Tuesday.

We will always strive to find the best we can for sammy. To find a way to make her world calmer and enjoyable. And to help her learn so she can meet her goals. Right now she says her plans are to get a job at McDonald’s when she’s 16 and then work at Safeway and have her own apartment. She plans to use her scooter or take buses (public transport goal for us in 2021). She dreams big too but she is already seeking a life of routine and schedules. And we praise her processing every time. Because we know that something as simple as being at the mall to see santa at special caring santa event and walking past the movie theater on our way out doesn’t mean she’ll agree with a spontaneous showing of Ralph Wrecks the Internet. It wasn’t on her schedule and despite wanting to see the movie, it was just too much for her to handle. We came home. No biggie.

So this started as a response to her genetics and sleep study results and it will end with a sigh of relief that we can do all that we can for her and still find time for fun and family and friends. We can enjoy the season of Christmas with the right mind set and planning. And we can accept that we expect the best and worst to shine through her during high energy and anxious times. We accept the world we live in and all that entails because we couldn’t love Sammy any more than we already do. With us and her sister hyde her side she will shine on her world and be able to handle all she must in her future.

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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!

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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.
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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.