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.