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.

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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.

Has it really been 4 years?

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See that little girl sitting with her proud daddy? That curly haired girl just finished her last day of kindergarten.  She just said good bye to a stressful 180 days of turmoil, teasing, struggles and delayed supports. She had tears and anger that afternoon as she grieved the routine of the school year coming to a close and anxiety about the summer.

Now see that daddy… Well he just found out 2 hours earlier that this sweet and beautiful girl has autism. He just had a lesson from a psychologist on where to go, call, and therapies that would start 3 years later than they should have. He just had his wife crying even though the test results were not surprising. He just looked at his other daughter and wondered if it would be her future too. He just drove from downtown in disbelief of the overwhelming information he was bombarded with in a 30 minute meeting.

And taking the picture… a mom terrified of the future. The mom who told the doctors for the last few years something seemed off. The mom who just a year ago scheduled the first of many psych appointments for her then 5 year old. The mom who made sure every teacher, family member and friend understood the differences she saw but fell to silence or second guessed herself for “over thinking” things. The mom who marched into that last day of school, looked the demeaning and competitive  teacher in the eye and said “Sammy is autistic!” And started the planning for services,  updated IEPs and tram of professionals that would forever be part of the entire family’s lives.

As I reflected today on the experience it was clear that things were missed for 2 years at least by the medical and educational professionals.  I know I pushed for answers that wouldn’t come. And that first psych diagnosing all those letters (OCD, ODD, ESD, ADHD) and said by parent review she appears autistic but not in line with the teacher’s info who knew her only 1 1/2 months didn’t show that. I should have pushed but how was I to know or feel after hearing all those letters.  And btw that same psych refused to see her after she was diagnosed with autism because she didn’t do the diagnosis!

So okay… it was more than 4 years ago that we recognized the challenges Sammy was and would face. Despite our own dismissal of set backs being related to her new baby sister when Sammy was 3 years old, the hindsight is there. And I  guess in the end I think of 4 years ago as a new starting line and every day we help Sammy make it to the finish. The track is hilly, curvy, bumpy and sometimes 20 miles long and other days 5 miles. The day to day 4 years later are patterned, happy, loud, and fun with all Sammy has learned so far and all we work for as a family. Do I cry some days… yes! And do I doubt some days… of course! But most I am proud of how we live, love and laugh every day.

 

Mother’s Day: We’ve come a long way in a year

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A year ago we feared a fish tank in the living room becaus random objects might fly by. A year ago Johnna had to use her locked door technique while a rampage of aggression consumed the house. A year ago I cried by myself nearly every night in concern for what my daughter’s futures may hold and how to get through just one day at a time. A year ago we started weekly psychology appointment into therapy routines and lab work, Sets, and three new docs to Sammy’s list. We had new diagnoses and a new life in out new home.

Today I sit patiently waiting Sammy to return from her therapeutic weekend. I sit with a calm Johnna after one on one time for breakfast and farmer’s market. Today I relax with my feet up while my husband vacuums and mops the floors after feeding the fish in the 60 gallon tank in the front room. Today is Mother’s Day… A reflection on motherhood, life with special needs, appreciation for support from family and friends, and the knowledge of knowing my girls will be brave, safe and secure in their futures no matter what they shall be.

Will there be crying and screaming as Sammy returns this afternoon? Likely. Will I cry after a long day of mothering? Sure will. Shall there be continued sessions and constant therapy for years to come? Absolutely. And appointments with new and old doctors? Yep yep. That is part of our lives,  my life. And only a PART of it…

There will also be hugs, kisses, and love. There will be laughter and tears of pride and joy. There will be creativity and crafts and drawings galore. There will be family outings full of fun. There will be family dinners where we share our days. There will be time at the park and swimming. The days with friends and Bbq. There will be family celebrations whenever possible. There will be no stronger love than my love as a mother.

So happy Mother’ Day to all who care for their children, children’ children and children of those around you. Reflect on that love and compassion since last mother’s day and be proud of the growth and strength of those around you in just 365 days. It is amazing to look back, to look forward and to enjoy the present.

 

Missing my Bitty Boo

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Yesterday Sammy left for her first full therapeutic weekend with behavioral health. She looked forward to it all week and anxiously awaited her pick up. We were lucky to squeeze in a kiss on her cheek that she allowed.away she went with her backpack full and not looking back. She seemed confident and excited to meet a new group of girls. We are all so proud of her and that she is brave to go into the unknown since that has always been such a hard thing for her to do. And now we wait for Sunday afternoon when she returns home ready to share her weekend adventure.

But more than ever I find that I miss my Bitty Boo.  Although it is a new found freedom to do things like the shark tour at the aquarium with my husband and her sister, I wonder how she is and what she is doing. I get extra snuggles with my little one as she gets to pick a movie without a screaming disagreeable Sammy crying in the back ground. Yet I miss the goofy comments as we go through the list of movie options.

The house is clean and laundry done. Errands complete by the second night. I sit with nature shows on while Johnna does an art project and even the dog has been bathed. I am relaxing with a tall glass of cold water and pieces of Hershey bar. I’m texting with friends and there is an overall sense of calm in the entire house.  Ahhhh…

And I miss my Bitty Boo.  I miss her smile and her laugh, her begging for a chore to earn more iPad time and getting her meds ready each night as I get mine from the cabinet. Don’t get me wrong… I am happy. I am happy she is socializing and enjoying new things. I am happy that she has this opportunity to attend and it does not effect our checkbook. I appreciate the team that works to bring this together.

Tomorrow I will be excited to enjoy the first half of the day finishing some things around the house and relaxing some more. Then I will be excited to watch for the van to pull up and see that smiling face come racing in to tell us how bummed she is to be done with her fum weekend but brag about all the fun things she did. The fun to have sisters reunite and share stories. Sammy’s joy in knowing she is going to a birthday party soon after. The dog going crazy with love of the family back together too. Will there be screaming?  Maybe. Will there be yelling? Likely. Will there be tears of sadness? Probably. More importantly there will be quick hugs, dismissed kisses, loads of smiles and the patterns of our loving family. That is what I miss.