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.

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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.

She’s baaaaaack!

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First therapeutic overnight complete. Sammy came home smiling, hyper, excited and anxious to go back to the house for another overnight!  Yeah! But that’s not all… She came back extra frustrated with her sister’s every move and sound.  She came back craving 1 on 1 time with me which I did for an hour and loved. But any other moment was stressful.

Despite taking her for her special Andy’s custard and lots of “I missed you sooooooo much” she kept an underlying tension once home. She stimmed a lot with hand rubbing repeatedly on the couch. She chewed on her lower lip, a tic she has formed in the last year when stressed. And with every sound her sister would make or what she would say, she would get angry. It was like a set back in behavior to a year ago.

Then she showed her sister a toy she found in the van on the way home. A blue robot cat or some sort. I asked when she first got home if she was allowed to have it and she played it off as being ok. Little did I know that toy would result in an hour of screams and tears.  She later showed it to johnna and told her the origin of the toy from the van. Who knew johnna would stand up for whatever child might be missing this little toy cat. But she did and the hittig and screams began in full force!  Both girls yelling their ideas at once.

Johnna resigned to her bedroom in tears of sorrow.  I tried a gentle push toward Sammy having permission from the group caregiver but the sobbing continued.  Finally leaving her to her own calming I found Sammy in the corner of the kitchen, squatting down and screaming at her daddy. He was now in the loop about the toy and asking that she agree to tell the caregiver so they can pick it up. She bellowed in fear and anger. She thought she would be in trouble if they found out. When she as calmer I tried to give an example of it being her toy gone missing but she didn’t budge. I tried empathy for any kid who may only have that toy and be missing it. No difference other than screams and running across the room, curling up on the floor and begging to not tell them because they wouldn’t let her go back and she really wants to. She was reaching for anything she could to throw at us. No calm tones or redirection would help. We had to back off, make sure johnna didn’t go near her and ignore the behavior.

Now 2 things came to mind: why was she so afraid of not going back and what was it about the toy that she was so adamant to keep it? And if this was how she’d be when she got back would it be worth it? Well it finally calmed and showers were done when she came to see me in the other room. She apologized for how she acted earlier and after she had something for dinner she was feeling better. “I must have been hangry” she told me. Ok… fair enough so I broached the subject “so I can tell Miss Shawna about the toy and send her a picture?”

She stopped and stared at me. Her eyes went glasses over and her lips tense together.  She slowly answered that she would just bring it back next time she goes. I reminded her it would be 2 weeks and someone might want it sooner.   She looked down and again with reluctance she agreed and I proceeded with texting Miss Shawna with a description and picture. She let me put it up on the shelf so it won’t get lost too.

What did this lengthy and intense return to home mean for us? Now we know to have more than a little snack ready when she gets home from the weekend program and she need  to eat before any other function of the afternoon back home. Will it work? We shall see. Will it be worse after 2 nights away? Who knows. What we do know is she enjoyed the program, she waited an hour with her group to be seated at a restaurant and that was hard for her, and she knew another girl’s name already (if she has it right, not sure). All wonderful things.  And all worth trying again to see where this goes.

When she gets home next time I may have a taco bar or grilled burgers or even simply a lunchable and Apple ready for her. It’s nice to know there will be a next time and the call is out to schedule the next therapeutic weekend for her and for us.

Leaving her in strangers’ hands

20180406_095844.jpgall the excitement of a sleepover with the goals of a habitation and OT provider. Sammy was approved for and started her therapeutic weekend today. If it goes well she will attend the next one for the full weekend.  Good reviews, certified company and staff, years of experience in a group setting and good staff to client ratios. She  finished archery and the time was set to take her to meet these ladies and other girls for a 24 hour getaway.

She was happy to go and all her tools packed for little things and times of stress. In preparation for this I had sat with her and told her this wasn’t because we don’ want her home. She relieved my anxiety with her prompt response “I know. You want me to be my best me and learn new things. ” so I felt pretty good taking her there and enjoyed our drive together. But then I walked up to the door with her bags and all her meds and it hit me…

I DON’T KNOW THESE PEOPLE

The staff were friendly. The other girls were around the house and some greeted her and told her which room shed sleep in at the house. She ran around the house to check everything out and after a quick hug she was off to the back yard and spinning a hula hoop. The rest were going to get ready to bring handmade blankets to a local nursing home. The meds were reviewed and I left feeling good about the intro and her acceptance. But…

I DON’T KNOW THESE PEOPLE.

I sighed, called my husband to update on the drop off and felt the tightening of concern hit in waves on the way home. All the quirks and what ifs that I didn’t share with them. Did she understand the pills well enough? Maybe the day will go well but what about the morning? Our goal is twice a month for these weekends so I have to get through the doubt and fear that is surely more intense then anything she is feeling.  So tonigh I enjoy my youngest daughter, go out to dinner and hang at the park to keep my mind from the little uneasy voice about leaving my Bitty Boo with strangers in hopes their experience and her capabilities can mesh to make friends and fun times while learning more social skills and emotions management.

Tomorrow she will return home via the van and we will get her perspective, her excitement and hopefully her feeling of care and acceptance. Tomorrow the hope is to feel that with each weekend she will feel more and more comfortable and the staff and kids will no longer be strangers. It’s Good for her to be around others and it’s good for me to have the separation and trust for others with my precious girl. Hoping for no dramatic dreams about it tonight and joy with her return.