Christi Johnstone: One Woman’s Story of Adoption, Special Needs & Balance

Sometimes life brings us gems. And HerScoop is happy to share one of them with you — mom-of-two Christi Johnstone.

The 39-year-old Arizona blogger has been married for 17 years to her longtime love Rick (see the fun photo we slipped into the slideshow of the cute couple). Christi is sharing her journey toward parenthood, adoption, special needs and balance in HerScoop’s latest Inspirational Mom segment.

Mom to daughters Bella, 10, and Grace, 3 in April, Christi opens up about the joys of adoption and advises hopeful parents to “put yourself out there.” She goes on to share the life-changing delivery of her first child, to the niggling “what ifs” of adopting a second child.

“We have an open adoption and remain in contact with her birth family, who are the most amazing people,” Christi shares. “There simply are no words to describe the gift of adoption.”

And not to mention her multi-talented career path! From a family therapist, to jewelry designer, to baking blogger at Love From The Oven, Christi finds success in all that she does, including organizing an upcoming fundraiser for “Team Grace” at the Apraxia Walk in Arizona.

Continue reading Christi’s inspirational story of unconditional love, finding passion in work and balance in life.

HS: Tell us about your adoption journey toward your daughter Grace.

CJ: “When I had our oldest daughter, I had some fairly severe complications the day after being discharged from the hospital, including severe postpartum eclampsia, acute pulmonary edema and congestive heart failure. Within a day of bringing home my daughter, I was back in the hospital in a cardiac care unit, unable to see my daughter (due to the nuclear medicine tests I underwent, as well as it being RSV season) with my husband at home, with our days-old daughter, being told to prepare for the worst.

Once I was stabilized, my cardiologist strongly advised against any future pregnancies, telling me it would be better for my daughter to grow up with a mother, than with a sibling. Strong words for sure.

For years we were very content to be a family of three, but the question of “what if” always was there. We decided that we would regret it if we never tried to adopt, and that if it was meant to happen, it would.

We found an adoption attorney and decided to pursue private domestic adoption, which meant it was up to us to find a birth mother. I went into “marketing mode,” started a website about our family and our hopes to adopt, told anyone and everyone and passed out adoption pass along cards to anyone who would take them.

Within a few months we were contacted by a young local couple who was considering adoption and found our website. We met with them, fell in love with them, and by what is truly a miracle, they asked us to be their adoptive parents.

I can’t lie, we probably had the most simple, straight forward and wonderful adoption anyone could dream of. We have an open adoption and remain in contact with her birth family, who are the most amazing people. There simply are no words to describe the gift of adoption.”

HS: Tell us about Grace’s special needs.

CJ: “When Grace was about a year old, it became clear that she was falling behind in meeting her milestones. While everyone told us not to worry and not to compare, I was not comparing her development to anyone’s, but knew she was not meeting the developmental milestones that she should be. That nagging mother’s intuition was also there, and wouldn’t go away.

After a lot of “wait and see” attitudes from doctors, we eventually ended up with an evaluation by early intervention, which did reveal that she was extremely delayed in speech and social development. We started working with a speech therapist, who after a few months made the observation that Grace appeared to have all the signs of a condition called apraxia.

In many ways, Grace’s delays (lack of speech, lack of gesturing, lagging social skills) fit the criteria for autism, but those who worked with her all said they didn’t feel it was accurate for her, but they didn’t know what the issue was.

After our first speech therapist went back to being a SAHM full time, we started with a speech therapist who specialized in apraxia. She was hesitant to make the diagnosis of apraxia, as it’s not one that is made quickly nor is it usually made under age three. We started multiple speech sessions per week, in addition to multiple occupational therapy sessions, while also going through a number of medical tests (inpatient EEGs, brain MRIs, genetic screenings, developmental pediatricians).

After ruling out many issues, it became clear that Grace did have apraxia, and a severe form of it. To put it simply, apraxia is a motor planning problem. The mind knows what it wants to say, the mouth has the ability to say it, but it cannot send the message correctly. It also affects Grace’s limbs, so waving, pointing or sign language are all just as challenging for her. Her mind knows what to do, her hands are capable, but the message can’t connect the two.

It is so hard to watch her attempt time and time again to make a sound or get her hands to cooperate to work, as the desire is there and strong, and her body doesn’t cooperate.

We are very fortunate to not only have an amazing therapy team, but to also live in a time when devices such as iPads can be used as augmentative communication devices. While Grace can only say a few words, she can tell us exactly what she wants to eat, play or do using an iPad with an app created for children with communication disorders. The only downside is she is still very much two, and loves to throw things – so we have to be careful with the iPad – it’s a costly item to throw!”

HS: Since you were not seeking to adopt a child with special needs, and Grace does have special needs, how have you learned to adapt?

CJ: “My husband and I had agreed that we were not interested in pursuing a special needs adoption, as we weren’t sure that we would be up to the challenge or how it would impact our older daughter. We passed on a few potential adoption situations because of this. We did not expect any special needs with Grace, her birth mother had a healthy pregnancy and we spent time with her older birth siblings who were all right on track, and even ahead.

So it certainly was a bit of a surprise, but given our amazing adoption, I know this little girl was meant for us, and that whatever challenges she may have, we were meant to do everything possible to help her with them. There are days that I am sad that we aren’t spending our mornings at the park or at playgroups, and instead are in therapy, but this is our life and we embrace it.

If anything, Grace’s challenges draw us close as a family, as we are her translators to the world, we have to read even the tinniest little cues to help understand her and meet her needs. We are all so tuned into her, much more so than I think we would be if she did not have special needs.”

HS: Do you have any regrets?

CJ: “I look at my amazingly sweet, silly and beautiful daughter, and how could I have any regrets? Sure, our lives are taking a different path than I had pictured, but life can always change in the blink of an eye for any of us.”

HS: Tell us how Bella feels having a younger sister. Did she adjust well to the new addition?

CJ: “Bella is an amazing big sister. With seven years between the girls, she has always been very nurturing and motherly towards Grace.

I often worry about the stress that having a special needs sibling has on her, but for each moment I worry, I have moments where I am filled with awe and amazement at the compassion and maturity that Bella not only shows her sister, but that I also see her show other children.

Over the summer she attended many of Grace’s therapy sessions, and she could probably give many speech therapists a run for their money in her ability to work with Grace in the exact same way that our therapist does. She has taken an interest in speaking out against bullying at school, and has made an effort to be-friend a number of children in her school’s special needs program.

She also sees the way that technology helps Grace communicate, and the wheels in her head are always turning, looking for more ways to help Grace. With her love of science and concern for others, I wonder if one day we will see her solving medical mysteries or finding new ways to help people with disabilities.

While I feel that we are so blessed to have Grace as our daughter, I also feel that Grace has been blessed with the most amazing big sister possible. I do look forward to a day where Grace can repeat back all of the words Bella tries to teach her, and I am so thankful that one of her first words, before Mama or Dada, was “Be-Ba” – for Bella.”

HS: Tell us some of the greatest misconceptions about adoption and about a child with disabilities.

CJ: “I think one of the greatest misconceptions involves the two topics. When people find out that Grace has special needs, they often quickly assume or ask if her birth mother used drugs. I find this very upsetting, because I know her birth parents, and what incredible people and amazing parents they are and how concerned they were for her well being, both while pregnant and after. Many people do not realize that yes, you can still adopt domestically, as so many people adopt internationally these days.

People also think that adoption has to be incredibly expensive, which also is not always the case. People are confused as to open adoption and do not realize that in many situations it can be a wonderful, positive experience.

When it comes to disabilities, people always say to me, “I could never do what you do.” I whole heartedly do not believe this to be true. You do what you have to do for your kids, and when it’s sink or swim, you just swim — simple as that.

People also don’t realize that in many ways, Grace is a normal two year old – some days very much a two year old! And while she has special needs, to us, it’s just her normal. Sure, there are days where I worry about the future and I am sad for the things she can’t do, and I grieve the “normal” things that she doesn’t get to do, but she is such a happy little girl and that is what matters most.

She is a ray of sunshine and manages to be one of the funniest people I know, even without words. She has so many positive qualities, and is much more than her disabilities.”

HS: What’s your best advice for families who are hoping to adopt? And what’s your best advice for families who have children with special needs?

CJ: “For those hoping to adopt, the best advice I have is put yourself out there!

It was terrifying for me to start going up to people I casually knew and share our desire to adopt. It felt so private, it’s like sharing your deepest dream and putting your heart out there.

But every time I did, not only was I met with a positive response, but I soon learned that almost everyone has a connection to adoption somehow. From the clerk at the grocery store to the secretary at my daughter’s school, the more people I shared our story with, the more people I had supporting us, cheering us on and keeping their ears open for any possible adoption situations.

You never know who’s sister’s co-worker’s best friend might be considering an adoption plan, and you won’t know if you don’t share your dream.

We created pass along cards, which are basically business cards with our photo, our desire to adopt, and our contact info. People would take stacks of them and hand them out, leave them at restaurants, give them to friends – it really was amazing. Network, talk to everyone. Tell everyone.

As far as advice for families with special needs, this is an area I don’t feel well equipped to give advice in yet, as I’m still learning myself. My husband and I have probably gone out to dinner twice as a couple in the past 18 months (and we are talking a one hour dinner at Chili’s!), and I know that’s not good.

I rarely see my friends anymore. I’m not good at letting people help, as I never want to burden anyone. I have let my world get very small, and that is not good. I am learning that special needs parenting is not a sprint race that you just buckle down and get through, but instead it is a long term journey. My goal in 2013 is to let people help out and to maybe even try to get a ‘sitter once a month to just get out. In the meantime

I have tried to accept that I need to lower my expectations. The house isn’t always clean as I want. I often don’t get around to sending birthday cards or thank you notes. I forget to sign and return permission slips to school. Some weeks I let my daughter buy a school lunch twice a week and feed the girls takeout pizza more than once.

I’m learning that the high standards I’ve always held myself to may no longer be realistic, and that I can’t beat myself up over it. So rather than give advice, I’m still working on learning to take it myself!”

HS: Please tell us about your multi-talented career path (from being a therapist, to jewelry designer, to baker & blogger).

CJ: “Prior to having Bella, I was a marriage and family therapist. I loved my job, but knew it would cost most of my income to pay for child care for Bella, and we made the decision that I would stay home with her instead of returning to my job as a therapist.

I’ve always been pretty crafty and I started making jewelry as a hobby after she was born. My hobby quickly grew into a business and for about seven years I had my own jewelry company called Sentimental Silver. It was fun and creative and I was fortunate to receive some fabulous press and even have celebrities wear my handmade pieces.

After Grace was born, the cost of precious metals started to rise. When I started my business, silver was $12 an ounce. It eventually went up to almost $50 an ounce. It was right about that time that we realized that Grace had special needs and it became apparent that between her needs and the rising cost of business, it was time for a change.

That was when I started my website, Love From The Oven, a baking blog. I have always loved to bake, and figured I would throw my hat in the blogging ring.

Love From The Oven uses many of the skills that I had used at jobs over the years, photography, marketing, networking and website design. I thought it would be fun, and maybe I’d earn a few dollars. It quickly grew into more than I ever expected and I now not only get to bake and share it on my blog, but I also get to create recipes for and work with a number of companies that I love.

While it seems like a big departure from both counseling and jewelry, career wise it is probably the best possible fit for me. I absolutely love it – and feel blessed every day to do something that I love so much, and be able to earn a living in the process.

I won’t lie, it is hard to balance the blog with being a stay at home mom to a kiddo with special needs, but it’s worth it. Next year Grace will start preschool, which will give me more time to take on more projects and explore new ones. Much like being a special needs parent has just become a normal part of my daily life, being a blogger has become a normal part of my life as well.”

For more from Christi, check out her baking blog Love From The Oven and check out her fundraising efforts for the upcoming Apraxia Walk in Arizona.

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