I decided that this would be an interesting series to write on because it’s applicable not only to Brett’s forever family but also all families adopting through Reece’s Rainbow. If you’d like to do a guest post for me, email me at daughterofeve at peacefulwaters dot org.
So… onto my experience.
If you had told me in October 2008 that I’d be giving birth to a preemie with developmental delays and autism, I would probably have taken off running in the other direction. After all, there was no way that I could handle a kid like that. I mean, I could barely take care of myself while I was pregnant and I had no clue how I’d manage if I had a kid who needed more help than the average one would.
Twenty-some weeks later, I lay in an OR on the maternity floor of Benefis East where my *fabulous* perinatalogist was doing an emergency c-section to save both my life and Daniel’s from the effects of the HELLP Syndrome ravaging my body. My husband Jon was gone on a business trip and I had thankfully made the 25 mile drive into town on my despite my kidneys not functioning well and my blood pressure skyrocketing. Not able to care for me or for my impending delievery, I was ambulanced 90 miles south to Great Falls. I was so sick that the whole “baby-in-NICU-for-months” scenario had not occurred to me and I wouldn’t have been able to comprehend it if it had. I spent the next week in tears when the magnesium sulfate and anethesia wore off as I contemplated how I was going to take care of my NICU baby who was born at 1 lb 15 oz. With the help of the awesome NICU staff, I learned how to care for him and he showed his prowess at beating the odds when he came home from the hospital after only two months instead of the 3-4 that they were predicting.
Fast forward a year when my mother-in-law politely informed me that Daniel was way behind the curve. Every other doctor had told me that he would catch up by the time he was two years old though I failed to see exactly how that would happen. With a referral from my doctor to the outpatient physical therapy services at my local hospital, we started getting physical therapy for Daniel to help him learn how to sit up. Four months later, occupational therapy was added and we got hooked up with our local Regional Center, the agencies that take care of people with developmental disabilities in California. The people doing the Regional Center assessments explained to me why my child wasn’t speaking or eating like most 18 month olds did (lack of development of his mouth muscles) and for the first time in a year, I stopped feeling like a failure of a mother. Daniel finally sat up and started army-crawling at 20 months and these were VERY BIG DEALS.
When we moved up to northern California in February 2011, Daniel ended up in the PICU at UC Davis Medical Center a week and a half after we arrived. I think the doctors and residents in the PICU were completely puzzled as to why I wasn’t panicking and kept saying that he would pull through — he was intubated and almost put on ECMO after all. I knew better after the NICU stay — Daniel was a fighter and I knew that he was giving it every thing he had. He ended up making a full and complete recovery though he was on Lovenox for a few months to fight a clot that had developed in his leg from the central line.
We got re-hooked up with the Regional Center up here and he had the benefit of Easter Seals staff working with him from July until his third birthday this April. It took a huge burden off of me because I had people working with him who were trained to do these things and who refused to let him just sit there. Even better, they taught me how to teach him certain things so that I could work with him between sessions. He finally walked at 2.5 years old (another VERY BIG DEAL) and made huge strides in his fine motor skills.
In January 2012, he was diagnosed with autism. As painful as that diagnosis was for me, it explained the speech delay and why he acted the way he did. The Regional Center got me trained in ABA methods for working with him and he started preschool in an ABA classroom at the local school. He has made progress in being able to sit still just in the last few weeks and I can’t wait to see what we find after he has been in that class for two years.
Did I mention that I was diagnosed with fibromyalgia in the midst of all of this? Yes, I have an autoimmune disease and I’m juggling a special needs kid. Gabapentin helps with the pain and I’ve learned to work with the fatigue. Phone calls to the SSA and insurance companies can be made sitting down and it’s actually beneficial for me to take Daniel for a walk, whether it be in a stroller or with him just holding my hand. He will not sit still for church and I’ve learned that when he starts getting fussy to just take him for a lap around the block. It gives me some movement which helps with the fibro and it refocuses him. It is hard to lift him and days when I have migraines or bad joint pain are hard but I’ve gotten it controlled enough that those days are getting rarer.
Another thing I’ve learned is how to be incredibly persistent. Medi-Cal (California’s iteration of Medicaid) is an absolute pain to navigate and it can take *weeks* to get things done. As Daniel needed Lovenox and I needed it paid for by someone other than me (it’s $4000/week), I started leaving messages on both my worker’s voicemail and that of her boss and whoever was the acting manager that day. When the SSA started stonewalling me, I would call and ask to speak to every level of the chain of command I had spoken to the previous day – plus one. It was incredibly frustrating but it gave me an outlet for my anger to work on making sure Daniel had the best care he could.
These are just my experiences in the last three years. Some people have an easier time and some have a harder time. My point in having this series is to help adoptive parents to know that having a kid like Daniel or Brett can be done, even if one has an autoimmune disease like mine. In fact, Brett might be easier than Daniel in terms of advocacy and care because you aren’t dealing with the sensory issues or the lack of speech. (Language barriers are so much easier to overcome than an inability to communicate at all.)
I’ll be publishing more on this topic later. In the meantime, please consider donating to Brett’s adoption fund so that his forever family can bring him home sooner than later.