Hi! My name is Maisie. I’m a 22-year-old nursing student from St. Louis, MO. In the fall of 2017, my life fell apart with the onset of several mental illnesses. I’m currently rebuilding my life and learning how to live in recovery. When I’m not in class or therapy, I’m usually hiking in the beautiful Arkansas mountains, making art, or spending time with my wonderful friends.

Miggy: Hi Maisie and welcome! I’m so glad to have you here today discussing a really important topic, your journey with mental health. When did you first start to experience symptoms and what did they look like? What were those first days (months, years?) like before you got professional help? How did you cope and what did you days look like?

Maisie: I believe that depression and anxiety have affected my life from the time I was a child, but things didn’t get serious until my junior year of college. In August 2017, I returned to school, excited to participate in my sorority’s recruitment process and start nursing classes. Almost immediately after moving into my apartment, I started having “episodes” which I now know were symptoms of Conversion Disorder, also called Functional Neurologic Disorder. These episodes looked like seizures and included major confusion, slurred speech, extreme fatigue, and the loss of use of my legs and left arm. Of course, everyone was very concerned. I saw many specialists around this time, but testing revealed no obvious diagnosis, which caused me to feel so confused and defeated, and honestly quite hopeless.

With those overwhelming feelings and continued physical struggles came suicidal thoughts. To deal with life, I adopted several unhealthy coping skills. I would drive for hours through extremely rural areas late at night with no cell service. I also started self-harming and engaging in disordered eating behaviors. Truthfully, I was barely surviving. My days were a cycle of trying to hide my downward spiral from my friends and family, and my nights were filled with fear and unhealthy behaviors. Long story short, my suicidal ideation got so severe that I finally ended up hospitalized, thanks to my friends and the wonderful counseling and psychiatric services (CAPS) office on my school campus. I was shocked that I needed hospitalization. That was the first reality check for me, the first time that I realized how serious things had gotten.

Since then, I’ve been hospitalized several more times due to suicidal behavior, and eventually ended up at a residential treatment center in May 2018. I credit that facility and its staff with saving my life.
 
[readmore title=”Click through to read more about Maisie and her mental health journey. You will be glad you did.”]

Hi friends–Miggy here. When I don’t have a current spotlight I like to feature one from the archives. This spotlight happens to be the very first one I ever shared from an disabled adult–in other words, a first-hand account. I love interviewing families who are going through this special needs journey as their perspective is a valuable one, and in those early years we, the parents, are the voices and advocates for our children. However, I’ve also learned that as close as I am to my daughter, as much as I’ve experienced with her, I will never fully know what it’s like to walk in her shoes. My perspectives around disability shifted and opened up even more due to the many adults who have generously showed up in this space to share their valuable perspectives. Catherine was the first disabled adult to reach out to me and I’m so glad she did. Happy Friday. 

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Hi Miggy!  Thank you so much for having me!  My name is Catherine, I am 22 years old and
I’m from Merseyside in the UK.  I have congenital muscular dystrophy (CMD), a broad umbrella term for muscle-wasting diseases, which vary in severity and progression with every individual, but all present themselves at or soon after birth.  My subtype of CMD, as yet unknown, is progressive in that I’ve lost skills and abilities as I’ve got older, and affects all voluntary muscles in my body. This means that I have very weak muscles and therefore require 24-hour support with all day-to-day activities and use a
wheelchair to get around.  My respiratory muscles are also affected by muscle disease, so I use a non-invasive ventilator via a nose mask while resting or during sickness to support my breathing and a cough assist machine to prevent infection in my lungs. I also experience chronic hip and back pain due to my scoliosis.

Since leaving university last year, I live at my family home with my dad and older sister, though I am currently looking for my own place. I’m an employer to four full-time paid carers (caregivers), who provide my 24-hour support. I’m also hoping to get a part time job or voluntary position soon.  I enjoy socializing
with friends, eating out, going to the cinema, shopping, doing arts and crafts, iPad, reading and watching TV and films. To relax,  I mostly use my computer to surf the Internet, play games and watch TV shows on demand; I especially like it because it’s something I can do independently.

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Miggy:  Catherine, I am so excited to be doing a spotlight first with you today. You are the first person I’ve interviewed who is not a parent or sibling of someone with special needs, but who actually has special needs themselves. I am so thankful to you for lending your experience, perspective and voice today, so thank you.  Let’s start with your childhood, at what age were you diagnosed? Do you remember the first
time you really understood that you were different from other kids? Can you take us back to that realization and the thoughts and feelings you had?

Catherine:  I was diagnosed with my condition at around a year or eighteen months old, so I can’t ever remember not being disabled, especially since I’ve never had the muscle strength to be able to crawl or
walk.  I went to special needs nursery from age two, so I’ve been surrounded by peers with a huge range of different abilities, both physical and learning, from a very young age, which I think made me aware that everyone is different very early on in life. This, coupled with the fact that I have three older able-bodied siblings, means that I can’t really remember a time when I didn’t realize that I was different or had limitations compared to other people.  When I started mainstream primary school at age seven or eight (in the UK, primary school starts at age five, but I was educated at a special needs nursery/school from age two until age seven, when it was decided that academically,  I would do better in a mainstream school. This was at a time when mainstreaming special needs children was virtually unknown), I began to get very frustrated and upset that I couldn’t keep up with my classmates at playtime and in P. E.  I also felt quite isolated and alone, since I was the only disabled student at the school.  Thankfully, my peers were immediately very accepting of me, seeing me rather than my wheelchair/disability, and myself, my classmates and my teachers found ways to include me in games, activities and lessons.

Miggy: Tell us a little about growing up in your family. How did your parents help and encourage you through the years? Do you have any siblings?  If so, how did those relationships shape you and
your perception of yourself? Do you feel like there’s something your parents or your family did really well as you were growing up?  

Catherine:  As I mentioned above, I grew up with three older able-bodied siblings. My parents treated me the same as them, obviously I needed more physical help than they did, but I was never really spoilt (well, maybe a little, since I am the youngest!) or wrapped in cotton wool. This made my disability just a
regular part of life, which I think has influenced my acceptance and positive view of my disability.  I’m particularly close with my two older brothers, especially since our mum passed away when I was thirteen; as I am closest in age in to them, they were my role models growing up, and I always aspired to be just like them. This meant I was quite a tomboy when I was younger, always wanting to join in with the boys on their video games, and we were (and still are!) very competitive! I think this competitive streak has definitely benefitted me as I’ve grown up, it’s helped me become ambitious and determined to achieve my goals despite the barriers my disability may put in my way.  As I’ve got older, my brothers and dad remain very close and have been my biggest cheerleaders, encouraging me to pursue my dreams, pushing me to achieve my potential and reminding me of the bigger picture and how much I have already achieved when I’m finding things difficult.
 
[readmore title=”Click here to read the rest of Catherine’s interview”]

Happy Friday! When I don’t have a new Special Needs Spotlight I like to run an old one from the archives. This one is from 2011 and features a sweet boy named Sam who has severe food allergies. I know a lot of people, myself included, have sighed or rolled our eyes when schools were first becoming “nut-free.” I really didn’t understand the severity, but also I had this “why do we have to change EVERYTHING for 1-2 kids?” attitude. WOW…has my perspective changed. It’s one thing to have a child with a medical condition but it’s another thing to have a child with a life-threatening medical condition that is dependant not just on your vigilance, but on the vigilance of others who may have no connection to your child at all. Back in 2011 this interview was pivitol in helping me become more aware of food allergies and how supportive we as communities need to be for children and people affected by them. Enjoy and have a great weekend! XO–Miggy

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My name is Emalee. I am almost 32 years old. I am a licensed marriage and family therapist. I have been married for almost 11 years to Mike. He is an attorney in Salt Lake City. Our son Sam is two years old. We also have a naughty dog named Atticus. My husband and I went to grad school after we were married, and so we postponed having children. In 2007, we found out that we were pregnant with our first baby. We miscarried that baby right at the end of the first trimester. If you wish, you could read about that experience on Molly Jackson’s blog, www.agoodgrief.com. I had the priviledge of being her first guest poster. About a year later, we found out that we were pregnant again, and again toward the end of the first trimester (after I had seen that precious heart beat on two separate occasions), our baby girl died. Four months later, I found out that I was pregnant with Sam, my son, who has SEVERE food allergies. He has had anaphylaxis 10 times in one year (he is only 2 years old), and has even been hospitalized. He is the light of our lives and is named after the Old Testament prophet, Samuel. His name means, “God Heard Her.”

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Miggy:  So your son Sam, suffers from very severe food allergies.  Although this isn’t typically thought of as a special need, it certainly has altered your life and the way you care for your son.  So how do you classify your Sam’s condition and how do you explain it to other people so they understand the seriousness?

Emalee:  I have not really thought about how to classify Sam’s allergies. He certainly does have “special needs.” He is allergic to: eggs, peanuts, tree nuts, wheat, oats, green beans, peas, white potatoes, grapes, bananas, pineapple, coconut, and avocado. No, I am absolutely not kidding!! Think about eliminating all of those foods from your family’s diet. It is a challenge to come up with meals for Sam. I also have to prepare and carry around all of Sam’s meals if we are going anywhere. I just do not trust that other people will not cross-contaminate (see the avocado story below for an example) and even if they were very careful, I do not know if food will be available that Sam can eat. He also wears a medi alert bracelet sometimes (it is really hard to get a 2 year old to wear a bracelet—even if it does have cool animals on it), and I always have to carry Benadryl and two epi pens (which inject epinephrine which is adrenaline). Also, many kids who suffer with food allergies have asthma and eczema. Sam has both. I have to carry an inhaler and have a nebulizer in my home. During the winter, I try to stay in as much as possible because the air in Utah can get very dirty. I have not found anything to manage Sam’s skin really well. Any help I could get with that would be great.

I have had to really advocate for Sam by educating people about food allergies. Many people think about food allergies the same way they think about seasonal allergies. They think he may sneeze a lot or get a runny nose if he ate a peanut. Sam’s food allergies are life-threatening. If he eats the foods to which he is allergic and is left untreated, his throat could swell preventing breathing and/or his blood pressure could drop and he could die.
 
[readmore title=”Click here to learn more about raising a child with severe food allergies.”]