Summer time is… fun? It sure is!

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The end of the school year is filled with anxiety of the future. What will happen this summer and what will happen august 1st to start middle school. We are fortunate to celebrate Sammy’s birthday May 26th, right after school ends. It is a positive and happy transition to the summer with sammy as the focus.

This year we had a fun friend filled bbq and birthday cake for sammy as we waited for May 31st trip to San Diego for SeaWorld fun! 20190531_090949The roadtrip is always a challenge but we have learned what works for both girls and that it is ok to stop 3 or 4 times just to stretch. And routine locations are key however this trip we chose to go to cracker barrel in yuma instead of Denny’s.  20 minutes of screaming until the realization could sink in to Sammy that she does like cracker barrel. Instead of the hotel room being ready early we had to kill some time. We chose to drive to Coronado Island. Some yells and crying until we crossed the bridge and saw the ocean. We played and headed to the hotel which was ready at least a little early and then we hung out for surprise of their aunt angie and uncle chris joining us. It was quite the first day. Overall… fun!

20190531_163534As we made our way to SeaWorld the next morning we find out their entry routine had changed. Th entry used to be open to the touch pools 15 minutes before opening. Lucky we had bubbles for line entertainment for her as well as kids all around. The guest line is mine and Sammy’s task asap. We waited to get her pass and as she waited and repeated “I get to ride the Rapids right?” We found out that her innocent statement about her tonsillectomy in January resulted in a pass only good for sky tower (apparently SeaWorld has a 6 month post anesthesia policy for ride limitatuons). Sammy got so upset she just kept asking about the Rapids, raising her voice and flapping her hands. Tears in her eyes as she pleaded with me. She heard the lady telling us the limits but tried to ignore it. Then the paper was handed and she lost it. The lady doing her job tried explaining she could still ride it but that flared things more. I had text my husband right before the full meltdown that I needed help and he came to assist as i had to move sammy from the service desk and reached for all calming tools. Tears in my own eyes as she bit her fingers and screamed. J promised to take her to the Rapids first thing and she obliged by getting up and clapping as we made our way to the rest of the group.  We had angie tell sammy the surprise of lunch with the orcas. It helped a little as sammy obsessed on Rapids and ran off to be briefly lost and then found.

20190601_132431When calm returned and her voice and body language relaxed we had a very lovely time of fun and family and rides. She got a special sight of the orcas for a lunch buffet and we got a little splash as the whales came to the side of our table.

We had a great weekend and for our family it was overall a huge success. But I think we all felt good to get home and start our summer weekly routines of groups and lists and friend fun times scheduled.

20190522_183406.jpgas we hit mid June Sammy tells me she likes her schedule. I figure she means her morning group 3 days a week and 2 days a week with cousin Sophia.  What we got figured out was she meant her checklist for electronics time. She had resisted its creation but it gave structure to the rest of her day and although she lost electronic time one day for her behavior (meltdown about lunch) she overall appreciates the routine of things and her sister follows with her own schedule too.

20190606_151309And sister is good for other things too. Knowing they will always have sibling rivalry 8 also know that Johnna has Sammy’s back and support her when she can. Part of turning 11 and heading to middle school means 2 more vaccines.  Shots are hard for most kids but with sammy it has taken 2 nurses and 30 minutes to do just one. The doctor’s office wanted to get 2 done at one appointment. Johnna said she would go to help sammy and sammy asked for a pill to help too (she has one for procedures and labs). With the help from both and a very patient nurse, Sammy was able to get both shots and only took 25 minutes.

20190511_084513As we near the end of month 1 of summer vacation we see challenges overcome and the importance of family. It will be a whole new transition the last week of July but for now we can enjoy swim parties and friends, air conditioning and movies. The routines are in place and filled with chances for fun fun fun. So often I will say OVERALL it was great and that’s what we are hoping for… an overall good time to be had by all.

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Autism. Any Questions?

The famous saying around autism is if you have met one person with autism, you’ve met one person with autism. It defies the stereotyping of people being verbal versus non verbal to some verbal. It dispells the idea that there is no eye contact or always swaying and flapping hands. It means that like all people no 2 are axactly the same. And as Autism Awareness month approaches and I will bombard Facebook with quips about support, I also open things up to questions about our family with Autism.

And a family with autism amongst it is just one family with autism. We adjust and adapt to our daughter Sammy’s needs and challenges. We see how it effects all of our relationships amongst ourselves and with others. It effects the way our Johnna sees the world and how she, even without autism, is effected emotionally in her own growth and social interactions.

So this April ask away… any questions about how we deal with day to day, with life with a tween,  work and juggle appointments, the ups and downs. You can call.  You can email. You can text or Facebook or comment here. I have been open about the life we never knew we all would have and we are lucky to have had and continue to have support from family and friends along the way.

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Time flies. Having fun?

The seconds keep ticking by and year follows year after year. What started as a couple and their puppy became a family of 4 with their dog. It was over 12 years with our family dog Pickles.

FB_IMG_1549634507279She had the patience to grow up with 2 little sisters. Sammy would poke her in the eye and Pickles would lay there and let her (we stopped her tho). And as those years went on the bonds grew stronger.  The strongest was between Johnna and Pickles. Sammy loved her too but attention to each other was more hesitant from both. Perhaps social awkwardness from sammy was noticeable or perhaps didnt know how to act with her. Either way was a love and unspoken connection that was mutually understated.

FB_IMG_1548972211892At the end of January our beloved pickles got sick. The vet called me the day after blood work and the prognosis was not good. She compassionately told me Pickles had 1-3 weeks to live. With some 1 on 1 time with her that afternoon my husband and I decided to tell the kids the next evening after fun plans with friends. The news was taken with extreme results aa expected although Jognna started crying uncontrollably, Sammy internalized the news. Her breakdown occurred later with anger. We did our best to support both girls and our beloved doggie. We focused on enjoying the time we had left, treating her to fun and food and that her body would tell us when it was time to say goodbye. That time would come a week later as Pickles would try to get up and lean to the right, unable to walk.20190130_173947My husband and I held our loving pet thru the night, talked to her and waited to see what the morning would bring and how to tell the girls that it was time to take her to the vet to have her forever sleep.  It was one of the hardest things I have ever done . Pickles continued to lean to the right and only able to take a few steps at a time.  There was a visual for them both to know she was not ok. Both understood that 12 1/2 in dog years was old and we reflected on our lives thanks to Pickles.

Johnna stayed at Pickles’ side and said she wanted to go with us to the vet. Sammy had a harder time and wanted to go to grammie’s house while we went to the vet

We made it clear to sammy she did not have to go to weekend group.  She demanded to go as she hadn’t been for 5 weeks. When the driver got there in the evening she snapped. She got in the van and broke down. They calmly brought her back into the house and for 3 hours she sobbed. She finally felt the lose and although she would not let us physically comfort her she did yell and scream and cry and started her grieving as we all continued our own and supported each other. It’s been 7 plus weeks now and there continues to be moments of sadness but she made a break through 4 weeks in. Her sister Johnna is still having a tough time but opens up well when she feels the sadness or heard a song that effects her.

We are both proud of our girls for their love of our dear Pickles who will never be missed and has no replacement. And we are proud of them for taking in their new baby fur-brother Buster. Johnna is his favorite play toy and sammy is his favorite smuggler which surprised us and her. She feels she may be bonding with him and when he is older it seems her bedroom will be his favorite place to sleep.  He will never replace Pickles but he is a new sweet and energetic puppy soul that pur family needs.

20190223_202437.jpgAnd Johnna pointed out that our new long time furry Buster was born in the Year of the Dog just like Pickles was so that’s something special to her. I agree! He came to our lives quickly with little intent to open our hearts so soon,  but feeling he is just the right fit for all of our lives. And time will fly by again from pup to senior dog as we will all face our growth and changes.  We will welcome life changes and learn, love, and laugh!

Family Pet… the love, the loss, the laughter

 

1 1/2 weeks ago our beloved 12 year old pooch, Pickles, got very I’ll. We stopped everything and took her to the vet, blood work and results were not as anyone including the doctor ever expected. What was thought to be kidney failure or something was much more severe with low blood marrow. 3 possible causes and 3 terminal situations. No treatments would be successful the doctor said, only increased suffering and side effects with no certain chance of recovery. Our choice was clear and we needed to find a way to tell our girls.

We waited for a the next night after fun day Saturday last weekend. As we broke the news we knew Johnna would take it the hardest. That’s here up in the pictures. Pickles’ favorite after me. But sammy… we just weren’t sure. As Johnna belted out in sadness and disbelief, Sammy internalized and shrunk into the couch, quiet and fingers to her lips. Both asked good questions between silence and Johnna screaming. Could the doctor fix the dog? No… and we said the details. How long will she live? 1-3 weeks. Could she just get better on her own? Not likely but she did eat and entire leather shoe and lived.

An hour and so later Sammy started processing and bolted to her room. Johnna continued wailing off and on, holding pickles and all her snuggles. It was Sammy’s turn to scream and cry. She yelled that she didnt want to look at her because it was too sad. She would not accept hugs and she was mad at us for telling them. Another hour later and she was wanting to join in on snuggle time but only touched Pickles on the head and curled up in her own blanket cocoon. We tormented our own emotions about telling the girls but felt it was right since we are pretty open.

Although Johnna continued with tears off and on the next day, Sammy was up and cheerful, saying she felt better. The next five days Pickles was almost her own self and we gave her extra loving and treats and snuggles. Sammy would kiss her on occasion and talk to her. We had talked about how her body and habits could change any time and we needed to enjoy the time we had. Then Thursday night after both girls and my husband were asleep Pickles gave out.

She appeared to have a stroke and I woke my husband frantic. We both knew what it meant and we started calling our jobs and giving Picklea cuddles, lunch meats and loving with tears. We mentally prepared for telling the girls there would be no school but we would be saying goodbye to our sweet dog. Johnna cried and sat with pickles on the floor talking to her and hand feeding her bacon and eggs. Sammy said ok and she wanted to go to grammie’s when we went to the vet.

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So we took our time. We talked about Valentine’s presents which coincidentally was a black lab build-a-bear for johnna and light fury for Sammy. We obliged as we took sammy to grammie’s as she requested and the toys were stashed. Johnna clung to her Pickles look alike in tears. She went with J and I to the vet and we shared our tearful goodbyes there together. I got myself as composed as possible to join my youngest and husband in the lobby. I held her clay paw prints and vial of fur and clenched it close as we drove home before picking up Sammy who had been asking about a new dog earlier and throughout the past week . We talked as a family.minus one… about Dammy being sad and expressing it differently, internalizing and maybe looking dismissive to us on the outside but sad on the inside. With that said Johnna asked that we go pick her up.

Sammy looked at me with tears in her eyes as she hugged her light fury. It was done. Pickles was gone and there was no turning back. A piece of their innocence disappeared before me and tears in my eyes met Sammy’s.  She sat down and as tears flowed she refused a hug or kiss or any physical contact despite my asking for myself from her while so sad. I stead she asked grammie for a brownie and both girls sat and ate and laughed.

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We looked at pictures from pup to today. Above is her first sniff of Johnna coming home. These sisters have been buddies. They have spent all their lives with Pickles. Johnna even felt it wasn’t fair because I had Pickles for 12 years and she only had her for almost 8 (johnna will be 8 next month). So we will continue with stories and pictures and hugs. I have cleaned up her dog dishes, blankets and put her puppy collar on the new toy Pickles and her paw prints up on the shelf. Now we wait. We wait for the moments her.missing presence effects us…. walking into the house to barks and kisses. Begging as we eat our dinner. Whining if she felt her food had to happen Right Now. As I miss the clicking of her nails as she follows me with laundry swapping and chores back and forth. When I go to bed tonight without my legs being snuggled and leaned in to. Now we remember how lucky we were to have had her in our lives and what a precious doggie she had been, full of kisses and love every day. She will always be our good girl. And despite the emotions of the day Sammy wants to go to her therapeutic weekend away that she has missed due to her tonsillectomy. Its risky but she is adament and we are allowing it while we stay on call 8f needed and we updated her team of the situation. No one knows how it will go but we will be ready for her, for Johnna and for ourselves to mourn and grieve our lovely poochie fondly referred to as Pickly Poo.

The Good and the Bad Days… support means a lot of things

For a month we reviewed the need to have Sammy’s tonsils and adenoids removed. Her swollen adenoids caused issues for some time and that sleep study showed obstructive sleep apnea. So we scheduled and we waited. And as time grew closer Sammy was willing and able to talk about her fear and ask some very good questions.

Since she has been through ear tubes, endoscopy and oral surgery she has been aware of some of the processes done for anesthesia.  She wanted to know about preop med to calm her, what type of mask for the gas, does the iv have to stay in, how long will it take, what will she wear, and if she could talk afterwards.  We got all those answered. We reviewed them each day in last week. A weekend away helped ease some of the stress too.

Then today was the day. She couldn’t sleep the night before and even with her pre-procedure valium she was up until midnight talking about it. We watched a movie. We talked we tickled her back and rubbed the bridge of her nose. Finally she was able to sleep at least for a few hours. And no biggie… she would sleep a lot after her surgery. Being scared was ok and I would be with her every stage of things that I was allowed.

We were on our way and she kept busy on the iPad. From start to finish every staff person we interacted with at banner desert surgery center was sweet as could be. They had read the autism info and quirks. They took each step of even the simplest weight and height with calm and patience. They asked her before starting a process. They listened when she would say for the tenth time that this is her biggest surgery and she would list off her past procedures. They answered my questions and Dr. Yvonne Richardaon was sure to tell the OP nurse to have suction machines off before they brought her back… she is well aware of Sammy’s auditory issues.

As soon as they could the doc came out 40 mi and yes later. All went well and sammy was sleeping still. The recovery nurse brought me back to a recliner room where I could wait for her to wake up. She listened when I suggested she secure the iv as much as possible from past experience. And before I knew it sammy was in the room with me, eyes mostly open and doing great. Her pre op comments of not wanting a popsicle were heard and they brought ice water. She saw her iv and didn’t panic as fluids dropped. Sammy did great!

Short time later as she sipped her water and talked about how her throat felt weird and how happy she was that she could talk, she mentioned the people who “pushed me in the special room ” helped her feel strong. She said she didnt like the mask they were using but they helped her be able to put it on. And she was sincerely grateful. I am too!

The IV came out and she was allowed to help in that as much as she could. Deep breaths and only teary once the whole time. Did the pre op versed help? Sure. But the staff did the best I have ever seen. And as susan the nurse wheeled her to the car she handed sammy a thank you card signed by all the staff we met… thanking her for letting them take care of her today. She opened it immediately and it too made her happy. And made me tear up.

As we go they the ups and downs the first afternoon home I feel so lucky to have had this experience with my Bitty Boo. And as she swallowed her pills this evening with anxiousness awaiting the sensation, she finally took the first and smiled. It felt just fine even if it felt like something was in the back of her throat it didnt hurt and she confidently took the remaining ones with no pausing.

Today was a good day. Tomorrow? We shall see but we can get through anything together.

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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!

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.