Special Needs Spotlight || Daniel, Desirae, Christian, Christy, + Michael

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Miggy: Kate, welcome! I am very excited to have you here today as I don’t think I’ve ever featured a story quite like yours. Not only do you have a background in special needs education, you went on to adopt 5 children (biological siblings) who all have been diagnosed with various conditions. And to top it all off, your husband is a recent amputee. Disability is a very big part of your life. I hardly know where to start, so I’ll just ask will you tell us the story of how you and your husband came to adopt your 5 children? Did your background in special education come into play?

Kate: When Rob and I got married, I also became a stepmom to his 3 sons. I’ve always wanted a big family and we thought we’d start having more kids within the first couple of years of marriage. Over time, it became apparent that we would not conceive our own children and for us, adoption would be the way to add to our family. I became familiar with the plight of international orphans with special needs, specifically in China. At the time I was working at a tuition free, Christian therapeutic and educational center for infants and children with special needs. I travelled to China twice in the Spring of 2010 with some of my coworkers to provide training to professionals working with orphans with special needs. Ironically, in between those two trips to China my husband saw a news segment about the need for families to adopt sibling groups from the foster care system. As we learned more about siblings living in separate foster homes, we committed to keeping a group together. We weren’t looking specifically for kids with special needs, but we were open to a wide variety of children. Our main goal was a sibling group, initially 2-3 children. We amended our file to increase our maximum number to 5 after seeing several larger sibling groups. The following month, we were matched with our kids. At the time our kids were 4 year old boy/girl twins, 3 year old boy/girl twins and a 2 year old boy.

Miggy: You mentioned that at first you just thought there was a general delay among the children, but over time they’ve each received a diagnosis or two. Can you tell us about these diagnoses and how they affect the children and your family as a whole on a day-to-day basis?

Kate: Although I try to not to treat my children as a whole unit, they do share some similar characteristics. All 5 have been in speech therapy and occupational therapy. Four have been in physical therapy. These therapies were part of an attempt at early intervention to close the gap, created in part, by an unstable home/family life during their early years in foster care. After having the kids home with us for 5 years, we still weren’t seeing the progress expected from typically developing children. At that point, our pediatrician referred us to a local center for child psychology to obtain evaluations. In the summer of 2016, I dipped my toes into the waters of becoming an “official” parent of children with special needs. I went to 5 separate intake appointments, 5 appointments for 2-3 hour evaluations, and eventually my husband and I sat through 5 conferences to learn that our children meet the criteria for intellectual disability. To be honest, I have a really hard time saying that. There is still a part of me that thinks they can “catch up”, but it also explains a lot of the struggles they have with learning. Four of the kids also have sensory processing disorder, but it looks a little different for each kid.

Our oldest son, Daniel, had a lot of medical issues as an infant, including tracheomalacia which led to placement of a tracheostomy and a G-tube. He was off of his trach by age 3 and was eating orally by age 4. When I read his file I assumed these conditions were part of the reason we’d been matched, as I had dealt with both in my career as a special education teacher. Daniel also had gross motor delay. He wore AFO’s (orthotics for proper positioning of his feet and ankles) and used a gait trainer at age 4. At the time, we didn’t have a reason for his delays, which also included speech/impairment and general developmental delay. A few weeks before we finalized our adoption, Daniel had a seizure. The ER doctor admitted him for an MRI because his CT scan was abnormal. At that time, Daniel was diagnosed with partial agenesis of the corpus collosum as well as seizure disorder. His MRI also showed enlarged ventricles, also known as ventriculomegaly. This condition was noted in his initial medical file as a pre-natal diagnosis, but was said to have been resolved. These congenital brain abnormalities likely played a significant role in his early developmental delays. Daniel’s seizure disorder was controlled by medication for almost 5 years, and he currently is not any medications. If he does have a seizure again, he will likely remain on medication for the rest of his life.

The only other significant medical diagnosis are congenital heart defects (ventricular septal defect and subaortic stenosis) affecting our middle son, Christian. Similarly, it was mentioned in his medical file that he had a heart murmur but it had been resolved. Thankfully, our pediatrician heard the murmur at our initial appointment and referred us for testing. Christian is followed by a pediatric cardiologist. The defects are not affecting the heart function, but he’s monitored closely and future surgical repair may be necessary. These medical diagnoses don’t seem to affect our day to day lives, but they certainly take up some of my mental energy. They are always there, and always need to be disclosed to anyone caring for our kids.

Our older daughter, Desirae also has central auditory processing disorder. We were referred to a local clinic by our speech-language pathologist, and I had to push for testing. They didn’t want to attempt an evaluation because of her diagnosis of intellectual disability, even though it is possible to have coexisting diagnoses.

Our younger daughter, Christy has childhood apraxia of speech. I can’t count the number of times she is overlooked or left out due to her inability to speak clearly. People who are familiar with Christy can understand most of what she says, and her siblings can always understand her. I’m proud of all of her communication and the hard work she does in speech therapy every week. We are purchasing a communication device for her next month and I am excited about the potential for an expanded vocabulary and less stress for her.

Our youngest son, Michael has ADHD and I hate the stigma attached to it as much as anything else. It’s actually a tricky diagnosis for someone who also has sensory processing disorder and intellectual disability. We are constantly evaluating our parenting approach to find the best way to help him meet his full potential.

Miggy: In addition to your kids, your husband is a recent amputee and so you’re also managing life with a physical disability. If you feel comfortable, will you share how your husband came to be an amputee and how this new change has impacted his life and your family’s life in general?

Kate: Rob has had diabetes for over 20 years. As a complication, he has poor circulation in his feet. He developed an infected wound on the bottom of his left foot in February 2015, which led to a partial foot amputation when the infection reached the bone. Continued complications and multiple hospital stays eventually led to an above the knee amputation in August 2016. The impact on our family comes in two varieties; it was very hard on the kids each time Rob was in the hospital. I can only imagine how much the inconsistency of caregivers in their early years played a role in their ability to understand why Daddy was gone, while I assured them that he would be home as soon as he could and we visited as often as we could. Additionally, we are blessed to have a fabulous support network of family and friends. However, taking on 5 children with varying levels of developmental delay and due to a traumatic situation, is not an easy task for anyone. It was hard for the kids to be separated from each other if I sent them to different houses, and it was hard on both them and me if I needed to be away overnight. Especially in those early days following his surgery, it was difficult for me to be with Rob and away from the kids, it was difficult for me to be with the kids and away from Rob. I look back on those days as a time of survival, day by day and an opportunity for us all to grow stronger.
As we now have distance from those hospital stays and unknown prognosis, we deal with changing roles. For a time, the entirety of any physical aspect of taking care of the kids or our home fell to me. It was hard to navigate being a caregiver to our children as well as to my husband. My own self-care was put at the bottom of a very long list and in the past year I have really been working on my own restoration. At the same time, we were all dealing with the life-changing amputation, especially Rob of course. He’s fortunate to have a wonderful, local prosthetist and he quickly regained much of his independence, as he returned to work even before acquiring his prosthetic leg. Now, Rob walks unassisted most of the time and uses a cane occasionally. Our family life is sometimes shaped by Rob’s inability to walk long distances, as well as my inability to manage the kids in a large public space. If it’s raining or icy, we may skip going to church because it’s hard to navigate the parking lot and the kids. At this point, we wouldn’t take a family trip to the zoo or an amusement park. But we did tackle IKEA during our spring break! Rob also hit a milestone as he was able to get in and out of the hotel pool and join us for family swim time. One of his big goals was to be able to take a walk around the block with the kids, and he does that often! He spent a year attending physical therapy multiple times a week. It’s been inspiring to see him work so hard to regain independent walking skills. We live in a one story home and our friends built a ramp on our front porch steps before Rob was home from the hospital. Our home is small and we talk often of moving or building a new home, and now we talk only of floor plans with all bedrooms on the ground floor. I am not away from home overnight very often, but for a while I couldn’t be gone. In case of an emergency, we felt like Rob would need an additional adult to help with the kids. I think all parents have a mental list of things they think/worry about, we’ve just added a few to our list.

Miggy: What are the biggest worries you have for your family? What are the things your family does really well that others might not notice?

Kate: I worry about the level of care our kids may need as adults. I am an optimist at heart and a believer that God can heal and provide anything and everything. But I must also be practical as we plan. When we consider our future housing needs, we not only think about Rob’s physical challenges but we also think about space for young adults who may need support to live independently. We currently have a garage apartment that could be utilized for our adult children. I also worry about the financial aspect of supporting our children into adulthood, should that be necessary.

Our kids have the usual sibling issues, teasing and pestering one another, arguing and fighting over places to sit and games to play. But what might go unnoticed, is the fierce love and joy they have for each other. Biological siblings, separated for years in foster care, fully bonded in their forever home.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Kate: Because all of the kids had speech delay, they had a hard time saying Christy’s name for a very long time. It sounded like “chee-chee” and that became her nickname, often shortened to Cheech. We still call her that pretty often, very normal to us, but we get a few looks from unfamiliar people!

One of Rob’s favorite tricks is to rotate his prosthetic leg, from the knee down, a full 360 degrees. It’s unsettling even when you know it’s his prosthetic leg. Also, the kids have called it his robot leg even before he had it!

Miggy: How can people best approach or respond to your children, either individually or collectively? Is there something you wish other people knew so as to avoid awkward or hurtful situations? What about your husband now that he has a visible physical disability, is there something in particular he wishes people would do or not do?

Kate: As strange as it may sound, my kids need firm boundaries, especially with strangers. My kids are exceptionally friendly and that is generally received well. However, due to social and emotional immaturity as well as some attachment issues it is important that we enforce boundaries that may seem harsh or unfriendly. Due to intellectual disability, my kids need specific instructions given repeatedly about approaching people we don’t know in public places as well as appropriate interaction with people we do know. It would be helpful in the adults we encounter could respect the boundaries I am setting, rather than a well-intentioned, “Oh, he’s fine. I don’t mind.”

Miggy: Kate, having been a special ed teacher you came in with a lot of knowledge about various special needs, but I would assume (and maybe I’m wrong) that being a mother of children with special needs is a whole new ball game. What is the biggest lesson you’ve learned since becoming a special needs mom?

Kate: You are correct, a whole new ballgame. At the time we adopted our kids, I had been a special education teacher for 13 years. And I had no idea how hard parents have to fight for acceptance and inclusion. I knew all the joys of teaching kids with special needs, and hardly any of the heartache. Although not a policy of the center, our children were required to be evaluated before being accepted into a childcare program. My sister-in-law invited our children to attend vacation bible school at her church, where she would be volunteering. Without any discussion, the director of the program would not allow my children to attend unless I remained on site. These early trials impacted me greatly. I also didn’t know how lonely it would feel at times. When Daniel’s testing revealed congenital brain abnormalities, I nodded my head as the pediatric neurologist said words I’d read in a student’s file but had never used to describe my own child. No further explanation was given. After the first conference at the psychologist’s office, I took the evaluation to a coffee shop and poured over the details. I was thankful for some answers and energy to move forward to help my daughter. At the second conference, I ugly cried as I realized I would sit there and hear similar information about each of my kids. I was overcome with the mountains before us. Times five.

I’ve only recently begun to process special needs parent as a part of my identity. It feels out of character for me, a person who dedicated her career to working with kids with special needs, to hesitate to embrace this role as a parent. Part of me is still in the denial stage, it’s important to admit that. This interview is a bit of an announcement, the first time I’m publicly giving the topic so many words. I want to respect my kids and their stories, and I also want to stand alongside the mothers who do this sacred work. I need to reach out to those further ahead on this parenting journey. When my kids started school this year (after homeschooling for 5 years) my most healing time came at a coffee shop conversation that lasted for hours, with a mom whose son is a sophomore in high school. I didn’t know how much I needed someone to look me in the eye and tell me this is hard work and it will be okay. One day, I hope to sit on the other side of the table and provide hope to a mom of littles.

Kate, congratulations. You officially qualify for super hero mom status. You are the real deal. As I’ve learned over the years, not all special needs situations are created equal and the challenges you face with your children are significant. Adopting 5 children in general is no small feat, and then to add traumatic backgrounds and multiple diagnosis… I just want to give you a trophy, a hug and a lifetime supply of chocolate. And while there are a lot of challenges, it’s clear that there is also a lot of love. You are a warrior mama and wife, and I’m grateful you, your husband and your children found each other. Thank you for all your valuable information and wisdom. Probably my favorite was when you talked about sitting across the table from a mom further down this journey than you and how meaningful that was to you and how you hope to one day be able to do the same for another mom. I’m sure you’ll get that chance. And I’m sure that your interview today will be just what some mother who is struggling and feeling alone out there needs to read. Thank you so much for sharing Kate. God bless you and your sweet family.

Wow. I’m still amazed. As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.