Callie’s Road

Our girl Callie turns 18 this week. Here’s a short synopsis of where we’ve been and where we’re going with our girl. The road has been long and arduous but now we have renewed hopefulness.

Callie arrived to us via the Texas foster care system. She was 2 yrs. and 9 mos. old. She was a micro-preemie born at 23 weeks and weighed just 1 lb. 6 oz. and spent her first 246 days in NICU. We were told she was abandoned in the hospital and so had no one to visit her or care for her but hospital staff which, we were told, were too busy to hold her or comfort her. Her list of medical issues is vast.

  • Respiratory Depression
  • Acute renal failure
  • Retinopathy of Prematurity
  • PDA – Patent Ductus Arteriosus – surgery to repair
  • Cor Pulmonale – enlargement of right side of heart
  • GERD – Gastoesophageal reflux disease
  • Pulmonary hemorrhage
  • Apnea of prematurity
  • BIH – Bilateral Inguinal hernia – surgery
  • IVH – Intraventricular Hemorrhage or brain bleed Grade III

It’s a frightening list and she also had a G-tube placed in her abdomen for liquid feeds before leaving the hospital.

All this she endured without consistent family by her side. We were told visits happened for awhile at the beginning but tapered off and eventually stopped. There are a million reasons why that could happen but all that matters to me is that Callie survived all that trauma alone and that is not something you ever get over.

Trauma takes it’s toll – forever. It shows itself in a variety of ways. It saddens me that there are many people think those who’ve suffered trauma should “just get over it”. I have no trouble reminding them that this will remain with her forever and you’re lack of patience/understanding will not make it go away. She has huge issues with sound sensitivity. It makes sense to me that with all the hospital sounds – beeping, buzzing, alarms – that bathed over her during those 246 days now cause any sudden sounds to bring her trauma to the forefront. For a long time she had a “fight or flight” response. Thankfully we found that noise canceling headphones and those help a lot with that, but sometimes she simply has sensory overload and can’t stop her response. It’s our job as caregivers to sense that and help her avoid being overloaded. Sometimes it’s possible and sometimes we are blindsided by it. We do our best and try to make sure others who care for her do as well.

During our first years with her we were able to stabilize her health with a progressive team of medical professionals especially a doctor that helped us heal her gut – long before gut health was a thing. Callie got off all her meds, and she came with many. No more asthma or gut issues.

Medically she was stable, but she had many other struggles to overcome. Although she craved human touch, she could barely stand to be held at first. Slowly but surely she tolerated it and eventually she sought out hugs and laps to sit upon. Now she seeks physical touch, maybe not always appropriately, but I remind myself that it is better to teach appropriate touch than to have a child who can’t stand to be touched.

She was neither walking nor talking when she came. Walking was thwarted in her foster home due to being cribbed and car-seated most of the time.  She accomplished it quite quickly once she was freed. Talking on the other hand was another story. She wasn’t just not speaking she wasn’t making a sound – any sound. She didn’t yell, scream, cry, babble, nothing. There was no purpose in sound making as there was no one to respond to her sounds ad thus she had stopped.

Fortunately we found an amazing speech pathologist who worked with her and taught us how to encourage her to make any sound, then specific sounds, words, sentences and she was on her way.  This is not to say that her language and speech skills are at her age level or that everyone can understand her at all times, but she can communicate her needs most of the time. The most difficult language issue we have with her is that she isn’t, thus far, able to answer the “Why?” question. So when she does something harmful to herself for instance if we ask – Why did you cut your lip? – her answer is – Because I cut my lip. For me that is the most difficult part because then we’re playing mind reading games and that’s never accurate.

Over the last 8 years, basically since puberty started, her behaviors have become more severe, less manageable. She has become self-abusive. She cuts her fingers, lips and other body parts with scissors. She bites and picks at her lips and fingers. She has little tolerance for other’s sounds – chewing, coughing etc. She is more insistent, repetitive, aggressive in her requests well demands. Her attention span shortened as well as her patience. She threw herself off of a speeding ride at an amusement park miraculously without severe harm. Terrible road rash, but no broken bones or stitches. It has become unsafe to take her to many places.

She is on three different medications for attention, impulsivity and mood issues. All have helped and some were tried but the side effects weren’t tolerable. They help some, but still her anxiety levels soar and often taking her places seems like a long-shot gamble that could go all kinds of south – and have. I have had to chase her down and lie on top of her to keep her from running in to traffic when the “fight or flight” adrenaline surge hits. Even at home when we have company or our grandchildren over we are on constant vigilance. It is exhausting. For all of us. I am now 63 and don’t think I could catch her anymore if she ran and we just can’t care for her forever and living choices for someone with her needs are limited.

In August our state added Autism to the list of qualifying conditions for the use of Medical Cannabis. Callie just received her official diagnosis of Autism one year ago today. We didn’t need convincing. We’ve read about families who have had great success with their kiddos and frankly we had nothing else to try. Behavioral therapies, sensory diets, gluten-free/dairy-free diets – we’ve tried just about everything. Again, there was some success or improvement with each one but not enough.

We went through the process to register her and last week saw the dispenser. We started her on low dosages Friday night. She slept like a log and has every night since then. Not at all usual for her, but lack of sleep seemed like a minor problem to us amongst all the other concerns.

At school on Monday she had her IEP and only a couple staff members knew and every one who didn’t wanted to know – what was up with Callie today. She was a completely different kid. She was calm and relaxed – words NEVER used to describe our girl. They even had a fire alarm and she calmly left the building before it went off, which is in her plan but she’s never happy or calm about it, and waited it out. They could not believe it.

We were extremely hopeful about it, but it is a far quicker and effective treatment than we could have hoped for. And yes, it is early to jump to the conclusion that this is the silver bullet, the panacea. The thing that makes the world safer for Callie and Callie safer in this world. But hope was elusive before and now feels like there may be cause for it.

Now, perhaps there are those who have strong negative feelings about medical cannabis. That’s fine. We also had a daughter who had severe cerebral palsy – intractable pain – over the last few years of her life. Nothing helped for long and it was excruciating to witness. How I wish we’d had cannabis for her. How much better her life might have been, shortened or not, if she’d been able to live it without constant, constant pain. Unless you have lived through or with the hopelessness you feel as a parent caring for a child who is clearly living a pain-filled life with no relief and no hope for relief either physically or emotionally then perhaps you can’t understand and if you can’t I’d ask you to reserve judgement. We want Callie to live her best life and I was not willing to say no to anything that might help.

If you are on board with the medical use of cannabis I’d ask you to advocate for it to become legal throughout the US because until it is legal we have to pay out of pocket for it , about $200 a month, as it’s not covered by medical insurance like any other medication. We can have her on all the psychotropic drugs we could get for free. That just doesn’t seem right to me, but as tight as our budget gets, like any other parent we will find a way to cover what is necessary for our child’s health and well-being. I also know we have resources other parents may not have and so they can not take advantage of something that might change their child’s life for the better and that is not right.

Now we are days away from her legal adulthood. We have filed for legal guardianship, as we have for 5 others in our family, and will go to Social Security to file for disability and listen to the interviewer ask her a million questions she can’t answer – Do you own land? Have you worked for the railroad? – I mean it’s a ridiculous list of questions for a kid with reams of paperwork that’ll tell you she clearly qualifies. We’re also not allowed to answer for her so…it’ll be a story I’m sure. If they let her start talking about roller coasters, an obsession – we could be there for awhile.

 

 

 

Just Wanna Blend

I was looking for a fabric the other day with lambs on it for a project for my daughter and this was the only one I could find.

Dictionary.com defines Black sheep as:

  1. sheep with black fleece.
  2. person who causes shame or embarrassment because of deviation from the  accepted standards of his or her group.

15963044.jpg

In case I haven’t been clear. I’m white and this daughter is African American with dark skin and she has not caused shame or embarrassment in any way shape or form. Ever.

She has a hysterical sense of humor and I held the fabric and thought about the jokes we could make and almost, almost went to the cutting table. I looked at the line and saw two African American women there and put it back. Not out of fear of what they might say or think, but because looking at them reminded me of the message I did not want to give my girl.

Micro-aggressions hit my kids in many various ways. They are in a racial minority, being adopted whether trans-racially or not is a minority and being part of the LGBTQ community is a minority. I catch myself as often as I can but still slip up and say something about how Cousin Jeff is just like Uncle Joe or your friend Sue looks just like her mom. You get the picture. When you are adopted, trans-racially or not there are constant reminders that you are different. It is on me to minimize my contribution to that and I admit that I am still learning, apologizing and correcting myself on the regular.

Yesterday my girl said she came out of school with a new friend whose mom was waiting for her and she said – oh, are you adopted too? Mutual adoption high-fives occurred. Of course I didn’t even have to ask her about their race because obviously their races didn’t match, otherwise there wouldn’t have been immediate recognition. Always happy when those serendipitous acknowledgements of – I’m not alone – occur for my kids.

Over the summer I was out and about with Callie and she draws a lot of attention wherever we go. She wears neon pink sound protectors due to severe sensitivity to sound and walks very quickly, not always aware of obstacles, including people, in her way. She can be loud or ask awkward questions or get into people’s space. She makes an entrance everywhere we go.

I remember thinking on one outing this summer that I would just like to walk around like most everyone else and blend, just blend. Sometimes you just don’t want to stand out like the black sheep on this fabric. Sure sometimes people like to stand out from the crowd – fly your freak flag – be unique – we encourage that in this family, not that we have a choice really, so embracing is generally the best strategy, but sometimes though, you just want to be part of the landscape and just melt into the crowd and rather than being observed by other people be the observer for a change. Let your eyes scan the crowd rather than feeling them all on you.

Senior Pictures

Last weekend we had senior pictures taken of our two graduating girls. They are 9 months apart in age and became sisters when Callie was 2 yrs. 9 mos. and Little Sis was 2 years.

Quick note about the names of my kiddos. I will be using real names mixed with pseudonyms. It may not make sense as people who actually know us will know who I’m talking about but that’s what I’m going to do. I will be using Callie’s real name as I plan to blog about her often. There are reasons as to why that is acceptable to me and reasons as to why I won’t do that with other family members and that’s enough said.

My girls are different in so many ways. Callie has intellectual disabilities, autism, anxiety etc. She had a real difficult start to life as a micro-premie who was essentially abandoned in the hospital. She’s had a really tough time, but she persists like no other. She is truly amazing.

Little Sis was with us at 6 weeks, was cared for well before she came to us which is not to lessen the trauma/abandonment that all adoption may bring, but she is an overcomer like no other. Don’t get me wrong, it’s not been an easy road, but she is in an amazing space now and we are so very proud. She is smart, sassy and super secure in who she is.

Taking their pictures was bittersweet for several reasons. Whenever your kid is taking senior pics you just can’t believe that time is here. No matter how many times you’re here and we’ve been here 10 times before, our first was our long term foster son in 1988.  Also bittersweet as the last girl we graduated was our Shannie whose senior pics popped up on my Google “Rediscover this day” – today. She died about 7 months later and senior photos, let’s face it eventually they’re not all that important, but these….these were never more important to me. Especially important is the photo of the three of us – her dad and I. Neither one of us was prepared for a photo but I was never happier to be photographed in my less than perfect glory because it’s the last picture of the three of us that we had taken where she was happy and feeling good.

In homage to their big sister each of my girls wore a special necklace of mine in their dress up outfits picture that Shannon also wore. Little sis who isn’t particularly sentimental also wanted to be sure they took a picture together, holding one of Shannie’s stuffed lambs, sitting in front of Shannie’s apple tree. My heart was full seeing them in that space honoring their sister.

I must also mention that our photographer is a young woman who has taken all our family photos and was also Shannon’s personal care attendant for years. I’m forever grateful for her and her gift of photography which captured our beautiful girl and her smile – the way we want to remember her.

_MG_6662.jpg

 

More than Serialadopter

I have thought and thought about returning to blogging. A couple of the sticklers I wrestled with, still wrestle with, is how to protect the privacy of members of my family and rethinking my own identity. When our Shannon died almost 3 1/2 years ago I changed. I began to change over the year or so before her death as well let’s just say there was a lot of family stuff going on both before her death and since then. Some of it is shareable and some of it is definitely not my story to tell. I want very much to honor that as well as to speak my own truth and I wasn’t sure how I would I do that.

I was also not at all sure I wanted to continue to use the name Serialadopter for a couple reasons perhaps most importantly because my view of adoption in general has evolved. But, the reality is I am a serial adopter. I’ve adopted 9 people and caring for them has been the driving force in my life.

I always know I am second best because the desired scenario for any child or parent is always that they would be born into a family who planned for them, was prepared for them and even if they weren’t either planned or prepared for those parents would have the support needed to be the best parents they could be. Specifically for the majority of our children, all would be born healthy and all parents would be supported in caring for them. Why would we want anything less for the children in this world? I try to be the best second best I can be and I’m ok with knowing that.

That being said my focus will be different than it was previously. When our Shannon was still alive we knew we’d care for her until we simply could not anymore but now we are getting close to having the last of our 5 children reach adulthood. Three who are still at home will need care for the rest of their lives and we are trying to figure that all out and hopefully, eventually, what life after daily caregiving looks like. Right now it’s totally a pipe dream.

I’m also hoping to share specifically about our nearly18 year old daughter who was just officially diagnosed with autism this past year and her/our struggles with mental illness/behavioral issues and what we are trying and have tried. Which, in short, is everything. More on that later.

Again, the past 4 years have changed me in ways I never imagined. Mostly, in spite of the painfulness of it all, for the better. At least I think so.

 

 

 

Prayer – An Instrument of Peace or a Weapon

Yesterday in a store parking lot I was chased down by a woman who asked to pray for my son. I had Chad with me and my grandson who is 8 mos. I knew she meant Chad and assumed, perhaps, she had a soft spot for people who have Down Syndrome.

DSC04030

She proceeded to tell me there was a website that tells of people being “healed” down to the cellular level with Down Syndrome. She touched him, said a one sentence prayer and quickly went on her way. I was so stunned I didn’t say anything. Here’s what I wish I’d have said.

You addressed me and talked over my son and by doing that you immediately                 demonstrated that you did not consider him a fully human person who should be  spoken to directly as any adult should.

By telling me you wanted to change him to his cellular level you told me he was a mistake. From the moment of conception you think God created a mistake.

You never asked me if I thought Chad needed to be “fixed”. By the way, I do not. He          is happy, healthy and his family loves him exactly as he is. We would miss much of             what makes Chad, well, Chad if you had your way.

We know many other people do not find him worthy just as he is and show it in many        of the same ways you did, but you thought you were being kind and helpful and                 Christlike which, to me, makes it even worse. You used prayer as a weapon to inflict           emotional pain rather than an instrument of peace.

If you were bound and determined to “hunt” down someone whose child had DS, I’m       so grateful you chose me. How devastating it would be for young parents learning and    coping with an unexpected diagnosis to have you approach them and tell them if                they just prayed they could change it all. I know a little something about people                  implying if only  you prayed harder, or the right way, your child would get better. You      create more pain than you  will likely ever know.

If I would have had to explain to Chad what our encounter was about it would have          broken my heart. How do you tell someone that this stranger thinks you are imperfect      and need to be fixed. On the other hand, had he understood, I suspect my words would     have come to me quite quickly to immediately counteract her hurtful words.

It frustrates me to think she is likely excitedly telling her friends about our encounter without realizing the consequences of her actions, but maybe this will stop someone else from making the same mistake.

Now, excuse me while I go enjoy a superhero movie with my Chad. You haven’t lived until you see the joy he takes in his superheroes. Perfection.

I’m Back

Seven months ago I removed my blog Serial Adopter. Much of it was due to the unauthorized use of a photo of our daughter Shannon, a story I will share for sure, but I won’t share as many private family photos as I once did.  I have often shared too much and so am rebooting. I’ve missed writing and have stuff I wanna say and perhaps some people wanna hear and we’ll see where that leads.

I also changed the name of my blog to I’m the Mom rather than Serial Adopter. My thoughts and feelings about adoption have also evolved and my kids, both adult and minor, can share what they want about that. I do have a couple kids who due to their special needs can not share their stories and sometimes I will share their life experiences in the hope that it is an encouragement to others who are parenting special needs kiddos. I also hope that it will help those who are not familiar with those in the special needs community to raise their awareness and overall make the world a little more accommodating and welcoming to them.

When I speak of the special needs community I use that term because it encompasses a general population vs. a specific title such as autism/intellectual disability/Down Syndrome etc. I ask you to remember that most of what the SN community asks for in life are things we all expect will be available to us – education, family, home, transportation, employment – so their needs aren’t particularly “special” even if sometimes we have to think outside the box to achieve those things.

Lastly the title I’m the Mom comes from a couple of experiences that I’ve had as a mom to children who don’t look like me. One in particular comes to mind. When shopping for a wedding dress with my daughter we sat down at the desk to fill out our information. The salesperson wrote down all the pertinent info. – bride’s name, wedding date etc. She then turned to me and said “and you are…..”. I blinked a couple times thinking, well who do you think I am, and then replied “I’m the Mom”. I forget that at first glance when the race doesn’t match other people don’t connect the dots. It’s just the norm for us.

Being The Mom is a privilege 11 wonderful people have given to me and although I have often failed at that title, I try to remember what an honor it truly is to simply be The Mom.

Dear Typical Mom

Dear Typical Mom,

I’m sorry.

I’m sorry that when we lined up for seats on the Extreme Swings at the amusement park today your tween-age daughter got the seat next to my teenage daughter.

Sorry that your girl was too uncomfortable to sit next to my girl. That she was so uncomfortable that she traded seats with you, and very sorry that you let her.

Sorry you missed an amazing teachable moment with your girl.

You have no idea of the opportunity you missed.

DSC04534

You missed teaching your girl that she should show respect to those who need a little extra loving care. Even if she was too freaked out to sit by my girl you could have, at the very least, modeled it for your girl. You could have talked with Callie, introduced yourself and your daughter – anything to show your girl that you valued my girl.

You missed knowing a girl, if even for a few minutes, that rode the Extreme Swings and then went to the children’s area to ride the children’s swing ride with just as much unabashed enthusiasm.

You missed spending just a few moments with a girl who demonstrates Satchel Paige’s “Dance like nobody’s watching” quote better than anyone. She jammed to a tune while she waited to ride on the Enterprise, a spinning ride that is vomit-worthy, while others backed away from her. I don’t know if it was because they didn’t want to be near her or because she is a brazen, audacious dancer and she never, ever gives the gawkers around her a second thought. She dances without regard to the stares because, well, because it truly is nobody’s business and unlike most of us, she embraces that. I absolutely adore that about her.

I’d say it’s your loss, but it’s my girl’s loss too. Every time she is ignored it is a missed opportunity to practice her social skills.

So, truly, I am so sorry. Sorry that you missed an opportunity to meet a person so uniquely made, a mold breaker to be sure. I know I’m biased, but I’m pretty sure you missed a one in a million opportunity.

Sincerely,

Mom who is proud of her atypical girl