The End is in Sight

Callie girl turned 18 almost a month ago.  That means we now have 3 adults with intellectual disabilities living under our roof. Three adults who will need a place to live and people to care for them for the rest of their lives. Chad, our oldest, is 44 and has lived with us since he was adopted at the age of 8 at then end of 1982. He’s lived with us for 36 years, longer than any of our other children. He is not A child, but he is OUR child.

As we began to think about moving our kids in to adult living situations we contemplated many scenarios. When Chad moved in he was very, very busy, not yet toilet trained and he would run away from us on the regular. We thought – if we can just make it till he’s 16 we could look for a group home. Then he aged and mellowed and we got a little better at this parenting gig and 36 years later, here we are.

A week ago we heard of a group home opening that sounded like a possible fit for Chad and  we scheduled a tour. As we got ready to go our emotions started getting away from us. 36 years ago we were counting the time till he could go and now we felt like we were in a tug of war – he should go but we don’t want him to, we’re not ready for him to. It wasn’t the order in which we saw these three moving out. Chad is by far the easiest to live with now. He goes to an amazing day program and we just thought he’d be the last to move out. It also wasn’t a good fit. It just didn’t feel right. Thankfully we have a social worker who assured us we didn’t need to jump at the first opening that came up. She assured us when we find the right place we will know. Hopefully she is right and we’ll be ready.

Every morning he and our dog Ruby connect and as I watch them it reminds me how much I’ll miss him.

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Every day since 1983 we have picked out his clothes, helped him dress, made his food, showered him and brushed his teeth, tucked him in to bed, done his laundry, cleaned up his messes, gone to IEP’s, taken him to countless dental, doctor and therapy appointments, met with social workers and made plans, gone to movies, shopping, special olympics practices and meets, redirected his unacceptable behaviors, taught him as many tasks as he could master and have attempted and continue to attempt to teach him many he never will.

We knew some day we would have to “retire” from these daily tasks, but the reality of that being sooner rather than later is hitting us. The reality of having to trust someone besides  the two of us to care for him, for them, as we have all these years is hitting us. It’s the hardest thing the we, as parents of kid’s who are vulnerable and dependent on others, are going to have to do and that is coming from someone who has survived the death of our Shannon, who was severely disabled. It may sound weird, but we got to finish caring for her. We were able to care for her to the end. We will not be able to do that with the three that still live with us. We are going to have to trust others to do that and we are still trying to wrap our minds around that.

 

She’s 18 and All That

Callie turned 18 last week. Yesterday the court visitor came to deliver legal papers to Callie telling her that we were seeking legal guardianship for her so we could continue to care for her and make decisions for her as we are now. She asked Callie if that was okay. Callie, the AMC (after medical cannabis) version, calmly answered her questions as best she could – it’s Friday, no school on Saturday or Sunday, we’re sitting at the table, in a chair, it’s after school time – basic questions presumably to test her competence.  For those who know her you will be amazed that she held her usual handful of roller coaster pictures and didn’t once – not once did she talk about them. That’s our AMC girl. It’s amazing.

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When we go to court next week she will have her own court assigned lawyer to represent her and it’s a he so that should be super interesting. We should take bets on how long it will take before she asks him for a kiss. I give it about 2 minutes and that might be waaay too long. Although many other behavioral concerns have abated, pursuing kissing is still an issue at school.

We have bumped up her cannabis dosage a bit since we began. We’ve left the nighttime level as is since any sleep issues she’s had have basically waned and oddly enough she is more wakeful during the day. We used to catch her sleeping on the regular in the afternoons after school. Now I’m thinking it’s because she wasn’t sleeping soundly and in spite of sleepiness being a possible side effect of medical cannabis it is not for her.

She does have an increase in appetite – but – we are better able to get her to eat healthier foods now. She was very persistent about eating carbs – chips, cereal, crackers, granola bars etc. Don’t harp on me about – then just don’t have those in your house – because there are 6 other people who live here, one who struggles to put weight on and sometimes, for us,  it’s ok to have those things. Now talking her in to a healthier choice is not a huge battle that we rarely won. Now she’s reasonable and can be cajoled in to eating beans, broccoli or meat first and then having a small bowl of chips.

We also ventured out two places before cannabis I wouldn’t have tried. She wanted to go to a Halloween store. She is generally very specific about what stores she will go to and why she wants to go – either a dollar store or a thrift store for princess books or coloring books . That’s it. We walked around the store and looked at the displays and then I talked her in to taking a brisk walk, all walks are brisk with Callie, around the mall. We bought nothing. It was a pleasant outing – again pleasant outing not generally a descriptor for being out with Callie. Usually more like stressful, exhausting or whew glad we got that out of the way.

Now that she is 18 she is also eligible for leisure activities designed for adults with intellectual disabilities. I signed her up for a pumpkin craft. I knew we might have to bail if someone “annoyed” her with their sounds or she decided she didn’t like the craft, but none of that happened. She did get up and danced to the Halloween music they were playing in the background a time or two which was perfectly acceptable and she was finished before anyone else and she asked one person to kiss her but….overall it was quite the success.

So onward and hopeful we go.

 

 

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.

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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.