Never Give Up Hope

Photo: A tan grade-school-age girl in a blue shirt smiles at the camera as she leans against a rail at Niagara Falls. As if she is a pot of gold, a rainbow extends from her shoulder upward to the sky.

Twenty-three years ago, a beautiful little girl was born. From the get-go, she was sweet, sensitive, and rather shy. She has grown into a young woman of whom I am so proud. She has worked hard to overcome challenges, and recently told me she is trying to face her fears, and asked me if I would write her story and share it here on the blog, in hopes she can inspire others through their own struggles. Although I offered to publish an auto-biographical piece for her, she wanted me to write her story from my perspective. At her request, and with her approval of this post, I share the following:

Photo: A tiny baby girl, dressed in a sleeper and hat made of white fabric with red and blue hearts, looks at the camera and holds up her hands

The phone rang, and the social worker on the other end informed me that a baby girl had been born 10 weeks early and drug-exposed. She wasn't ready to be released from the medical facility where she was currently staying, but would we be interested in being her foster-to-adopt parents? Of course! When John and I filled out our paperwork, we indicated that we were comfortable with a premature baby, as we had gone through the emotional roller coaster of the neonatal intensive care unit with our son, three years previously, and were familiar with some of the uncertainties that accompany premature babies.

Although she was not yet ready to be released to our care, we began visiting her. It really was love at first sight. The staff at the care center told us that at first, they thought we were her biological parents because she looked like she belonged to us. Even though our racial backgrounds were not identical, and we shared no DNA, it was obvious we were family. We took her home as soon as we could.

Despite her in-utero exposure to hard drugs, and notwithstanding her premature birth, she was remarkably healthy. The hospital admissions we had anticipated over her first couple of years of life never materialized. She didn't even get the common ear infections. She slept well, cried seldom, and was just generally a delightful, "easy" baby. 

Photo: A toddler girl, dressed in a white lace dress, sits on a wooden chair and smiles at the camera

As she started to talk, though, we noticed some difficulties in communication. Though she understood us, the words she spoke to us often didn't make sense, at least not strung together in sentences. She was frustrated if I tried to get her to clarify what she meant, and I was frustrated I couldn't respond meaningfully to her statements. Over time, we learned to use contextual clues and similar sounds in words to tease out what she really meant. For example, when she was around 3 or 4, she asked John, who was washing the dog at the time, if he was going to put the missionary on the dog. Missionary has the same "sh" sound as shampoo. She 
wanted to know if he was going to put shampoo on the dog. She knew what she meant, but she couldn't retrieve the correct word. 

Photo: Youngest daughter, with a head full of spiral curls, sits on John's lap as they read a book together. A black-and-white cat sits on the back of the chair and looks on.

We enrolled her in a preschool program to help with her speech difficulties. She enjoyed the small setting and made friends. At home, she continued to be a delight and was always willing to help. She played well with her siblings. 

Photo: Youngest daughter, wearing a blue shirt and jeans, and with a backpack on her back, stands on the front porch on her first day of preschool.

Photo: A smiling girl, wearing glasses, and missing her top two front teeth, looks up at the camera

When she started grade school, she continued to receive speech therapy, but her needs didn't seem to fit into a neat little box. The frequency in which she mixed up words was decreasing, but word retrieval still presented difficulties for her. School became stressful for her, and often she would be in tears both when I dropped her off and when I picked her up after school. At the end of 3rd grade, the school wanted to drop her from the speech program. Medical professionals recommended she receive additional services, above and beyond what she had been receiving. I was faced with a decision. I could either fight the school and hope that the services they provided would meet her needs, or I could decide to home school her, thus eliminating much of the anxiety and stress she was feeling, and pursue speech help from outside sources. Class size in California (where we were living at the time) increased dramatically in 4th grade, and I was afraid she would get lost in the crowd. I decided to home school, using a charter program. 

It was definitely the right call. We quickly connected with other local home school families. She could tackle the schoolwork at her own pace, and in learning styles that fit her needs. She developed skills in the arts by taking dance and violin lessons. We also found a private speech therapist who really understood her needs, took interest in her, and went above and beyond to help her feel capable and confident.

Photo: Youngest daughter, wearing a white blouse, has a look of concentration on her face as she plays the violin at a recital

I loved spending time with my daughter. Though homeschooling meant that I lost the kid-free time I had previously had during the school hours, I truly enjoyed being able to teach her. She also enjoyed sharing some of the facts she learned with her older siblings (and doubly so when it was something they didn't know!)

Looking back now, I'm glad we had those relatively calm years to develop a good relationship before the storms came. 

When she was about 15, depression reared its ugly head, but it wasn't "just" teenage angst. It was nearly impossible to get her to leave the house. We had her evaluated, and not only did she receive a diagnosis of depression, but she also given the diagnosis of schizotypal personality disorder. I remember shaking in the office, as I learned she was on the schizophrenia spectrum. She was young for such a diagnosis, but the person doing the evaluation had consulted with his colleagues, and they were all convinced it was an accurate diagnosis. 

Photo: The smile on the teenage girl's face gives no indication of the struggles inside

Since that time, her diagnoses have varied from autism, schizophrenia, and the latest, borderline personality disorder. All I know for sure is that my daughter is a strong, brave, kind, loving person. She faces challenges I never have experienced. Before the doctors were able to stabilize her, she would often see "FBI" cars all over the town, and would think people were following us. She could not trust her own senses. The world can be a scary place, and that is even more true when one can see and hear things that aren't even there. Fortunately, over time and with proper treatment, her symptoms have stabilized, and she is learning how to manage life in a positive manner.

We moved from California to Utah, with our daughter's agreement, so that she could have a clearer path toward a more independent lifestyle. She wanted to be independent, and yet she still struggled with some things, like remembering to take her medication. Without her meds, things could go downhill fast. As parents, we wanted her to be independent as well, and we searched for programs that could foster that independence and still provide the services she needed to feel successful and productive. We knew of no program near where we were in California that could help her with that goal. Together, we toured a Clubhouse program in Provo, Utah, and made the decision to relocate. (Click the link to learn more about Clubhouse, International.) John works from home, so we had the flexibility to move. John grew up in Utah, we both graduated from BYU, and John still has family living in Utah, so it was a positive move for more than one reason.

Not only does our daughter enjoy weekdays at Clubhouse, she has moved into supportive housing. The wrap-around services provided to her there have really allowed her a level of independence that she otherwise would not have. She lives in a cute, 2-bedroom apartment with one other woman. House parents are on call night and day for any issues that might arise. A nurse hands out meds morning and evening. A budget specialist helps with money management, and a case manager is available for everything else. Transportation is provided to Clubhouse, and weekly shopping trips are arranged, as well. Clubhouse is across the street from a medical facility that provides both physical and mental health services.

Prior to living in supportive housing, she tried living in an apartment with some roommates who were local college students. That experience stressed her out. She didn't always remember to take her medicine, and she was admitted to the psych ward a couple of times. She has learned that utilizing tools and programs is not a sign of weakness, but strength. She is happier than she has been in a long time, and she is learning coping techniques to better manage symptoms when they do pop up from time to time. I couldn't be prouder of her!

Photo: A beautiful young adult woman, with a future as bright as the sunlight streaming through the window behind her.

She wishes, that by sharing her story, others in similar situations can find hope and courage to get involved in programs that can help them be independent, too. 

(Linking this to Finish the Sentence Friday at Finding Ninee.)