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Challenge: Kids with Special Needs

M.o.C.h.A. Seven - Second Chances

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She was a powerlifter in high school. Confident. Outgoing. She just knew that big things were in store for her life despite coming from a broken home without a father and being from a community where people didn’t always wander too far from home after high school.
She came home after one semester in college homesick and feeling defeated. After enrolling at a local university close to her home and getting a small part-time job at a bar and grill, a man entered her circle that would change her life forever.
The next part of this story gets complicated, sometimes overwhelmingly sad and M.o.C.h.A. seven shared so much of her heart with me that evening most of which shouldn’t be repeated here. But I will say that despite what challenges this relationship brought into her life, despite what little self-confidence she had left in the end and despite the years she lost from having to quit college … in the end she was given a gift. A gift that only God could have strategically placed in her life with His perfect timing. A baby boy.
Mainly because of how strained the relationship was, this pregnancy was so difficult for M.o.C.h.A. seven. She was physically sick most days, stressed, anxious, and worried how this baby would be received by his father.
Despite how unhealthy the relationship was, the pain of a nonexistent father of her own pushed M.o.C.h.A. seven to keep working to save a relationship that could not be saved. She wanted a daddy for her baby, no matter what package that came in. She was willing to sacrifice her own happiness, safety and sense of self to give her baby what she thought he needed.
It wasn’t until she was in the delivery room staring at her baby boy kicking and crying on a baby warmer while they cleaned him off that she knew and felt for the first time in her life true love, real love.
He was such a great baby. He ate so well and never cried and M.o.C.h.A. seven describes such a deep and real devotion to her little son. He was beginning to babble and recognize his name and would turn his head while sitting in his bouncer when his momma called out to him. But just like he would hear his name loud and clear, so would he hear the ever present turmoil in his home. His mommy and daddy were off and on with constant arguments followed by multiple apologies until finally M.o.C.h.A. seven walked away forever.
M.o.C.h.A. seven moved in with her mother and got a job at a bank to support herself and her little son. M.o.C.h.A. seven explained that she had always envisioned herself working at a bank since she was a little girl. She enjoyed the atmosphere and genuinely felt rewarded and useful by helping others and was ready for her second chance at a better life.
Her son was now about ten months old and the babbling, the turning his head when called by name, the eye contact, it all stopped.
M.o.C.h.A. seven would sometimes find her son sitting, staring off into nothing babbling and laughing to himself as if he was enveloped in his own secret world in which she was not invited. At one year of age he still wasn’t walking and at his two year well-baby visit he met zero milestones.
The pediatrician recommended that M.o.C.h.A. seven take her son to see a pediatric neurologist and what a disaster of an experience that was. One of the first things that the pediatric neurologist ordered was an electroencephalogram (EEG). This is a test commonly given at first visits with pediatric neurologists to rule out any abnormalities present in brain waves. During the procedure, electrodes that look like small metal discs or leads with thin wires attached are placed on the patient’s scalp using an adhesive. These leads help to detect changes in the brain electrical activity which can help with diagnosing seizure disorders, etc. However, this little toddler was crazy strong and wrapped his little hand around the wires and literally ripped off the leads that were placed on his forehead and scalp. The pediatric neurologist, the expert, the one person that should know what to do and HELP families with children like this said, “I can’t help you if he doesn’t sit still.” M.o.C.h.A. seven, now frustrated and angry went right back to her pediatrician to ask for another referral for someone, anyone that was actually willing to help and not make her feel like such an inconvenience. This time around she was referred to a child psychologist who quickly gave the diagnosis of autism spectrum disorder at the end of their first long visit.
Home-based speech and occupational therapy were approved and started immediately. By three years old her little son was able to begin at the local Head Start program but seeing as the school day was shorter than her work day, M.o.C.h.A. seven’s little boy still had to go to a daycare after school for several hours. He was three. Not potty-trained. Completely nonverbal.
In all of my conversations with M.o.C.h.A.s, I have laughed and cried and gasped right along with all of my new mommy friends as they describe and relive some of the most disturbing mannerisms that our children exhibit. However, nothing compared to what M.o.C.h.A. seven would describe to me that evening.
When this sweet boy was three years old, he began fecal smearing. I understand this should be self-explanatory but for sake of clarity this involved literally reaching with both hands into the back side of his pamper, grabbing handfuls of feces and wiping and spreading it EVERYWHERE. Walls, carpets, chairs, floors, desks, etc. You can imagine this behavior was especially disastrous when displayed at school and even more so at daycare due to sanitation concerns, increased need for manpower in cleaning labor and just straight up inconvenience. M.o.C.h.A. seven’s son was kicked out of every daycare in her city and usually with large fines and bills for carpet cleaning and/or total replacement, furniture repair and/or replacement and not to mention pure and painful embarrassment.
Oh dear reader I can’t really describe the pain in this woman’s face as she relived this time in her life. This was her dream. Her son. The little boy she named after a legendary UFC fighter. Her Superman. Her one and only true love. Her strong son. There is not a way to truly comprehend the sadness and loss and grief that autism can bring when it presents in such a dramatic and disturbing way. She clearly remembers the day when she physically and emotionally broke down and accepted the reality that this would be forever. After a long day at work, after making dinner and while she washed dishes, she went looking for her son after a few minutes of uneasy quiet. She walked into her bathroom to find her son and his feces everywhere. Everywhere. On the walls, the cabinets, the toilet out and in, the towels, the shower curtain, the floors, the sink, the mirror. Really think about that for a minute. Envision the work and time it will take to clean all of this mess after a long day of work and making dinner and washing dishes and preparing for the next day. Just about the time you are ready to put your baby to sleep and have a warm shower to recuperate for the next day. Imagine for a moment the smell, the gag reflex the absolute frustration. She remembers just curling up in a ball on the bathroom floor and weeping. Defeated. Exhausted. Lost. Alone.
The loss she felt was all encompassing.
She assumed her son would be amazing at everything.
Her defender and protector.
But that would not be the case.
She would be his defender and his protector… for life.
It was not until prekindergarten with the help of a devoted teacher, an invested special education department in a highly recognized school district that through a picture exchange communication system (PECS) and visual schedule this four year old boy was potty-trained.
Another positive turn these first years of public school was the realization made by this young boy’s father. His son needed him. M.o.C.h.A. seven says that even though they have been separated for many years and even though her son’s father has a new relationship and has moved on with his life, they actually co-parent very well. There is an understanding that they are both so needed and so critical to the physical, mental and emotional well-being of the son they share. So regardless of their past, good or bad, they both work together to give their son his best life and to give his daddy a second chance.
By the time her son entered first grade, M.o.C.h.A. seven had moved up to a banker position and was interacting daily with people and families from all walks of life. To her surprise she began noticing that there were many families that had special needs children in her community and she found herself talking and advising people and families about much more than finances on a weekly basis. She had the idea of starting a support group for her town. It started as a Facebook page with resources and encouragement and then eventually became a nonprofit support group with actual meetings. At first, the turnout was great but even though the numbers were there, the interaction and involvement was not. M.o.C.h.A. seven found out quickly that although people were so eager for help and advice and support, they really weren’t so eager to actually share their very personal and sometimes very painful stories. Most people are shy, timid, worried about how their stories will be perceived. They dread the judgment. Don’t we all?
As M.o.C.h.A. seven spoke about this support group I had instant flashbacks to my first time at a small support group in my town. Although the person in charge was so well-intentioned and smart and helpful, as a mom dealing with a new, lifelong scary diagnosis within the last week of my life, the support group was honestly way too overwhelming, terrifying and too soon for me. I remember listening to the topics and discussion in pure shock as I envisioned all that could potentially be the story of our future.
Here is an excerpt from “Waiting for the Light Bulb” Chapter 6:
“OK first the parent support group. In hindsight, I was totally NOT ready to attend one of these. In total there were four parents, one researcher, one vendor, and the lead therapist I had spoken to earlier that led the group. First on the agenda was a topic discussion focused on wandering and elopement. I sat there dumbstruck as parents told horror stories of their kids wandering out of their homes and not being able to find them for hours and sometimes finding them near bodies of water. I heard stories of elopement during recess where the school staff could not find the child and had to call the parents. I heard stories of wandering and elopement as their children followed certain vehicles or people that interested them. The lump in my throat grew larger and larger and I realized quickly that I was not ready for all of this. I didn’t know enough and hadn’t experienced enough to share or to even start thinking that this was our future. When the topic discussion ended it was a great relief but my mind was now racing with thoughts of tracking devices, giving Isla a cell phone, maybe even a harness or leash for public places? Good God it was too much.”
M.o.C.h.A. seven even got her school district involved by providing parents with a very knowledgeable speaker and visual aids and power point presentations but the turnout was poor and left M.o.C.h.A. seven discouraged.
Again despite setbacks and maybe this project not being as effective or widespread as she envisioned, the most important thing, her son, was improving daily.
The fecal smearing had stopped. M.o.C.h.A. seven returned back to school to get her degree so that she can move up into bank administration. Her mother is her strength and her everything. Her son continues to teach her profound patience and he sees the world so beautifully with judgment for no one. She has learned to be creative and to anticipate and prevent problem behaviors before they start. A great example of this is how M.o.C.h.A. seven decided to prepare her son for the first day of school. In years past, the first day of school with a new uniform and the hustle and bustle of drop-offs proved to be OVERWHELMING to say the least for her son. One particular first day of school required five grown adults having to carry this young boy into the building while he screamed and cried and kicked leaving his momma in tears and in desperate need of a makeup redo. So as the beginning of the following school year approached, M.o.C.h.A. seven brainstormed and came up with the idea to pretend it was the first day of school for several days before school started. She woke up early and dressed her son in his uniform and put on his backpack and let him walk around the house and go to the store and eat meals all while pretending to be at school. Seems so simple right? First day of school that year, he strutted into school like a boss.
Here is a little Q&A with M.o.C.h.A. seven:
When you got the diagnosis, what did you need? A mentor. Immediately. Like that night. I was completely lost with no resources, no training, no idea of what the future would hold.
How do you cope as a M.o.C.h.A.? We have a provider that helps us for twelve hours per week. I usually try to do dinner on Friday nights with friends or colleagues to have time for myself and decompress from my week before giving my all to my son for the weekend.
What do you love the most about your son? He is so loving. Oh and his kisses. He is so very jealous so when anyone tries to get close to me or give me attention of any kind he quickly comes to me and wants to give me a big kiss. It’s the best.
What do you want people to know about your son? He just wants to be treated like a normal kid.
What do you wish people knew about us M.o.C.h.A.s? That what you see or perceive as us being “strong” is not an option or choice. It is our reality.
What is your biggest prayer for your son? To be happy when I’m gone. But also, to one day have a conversation with me. I find myself sometimes insanely jealous when I see moms talking to their children, having back and forth conversations about their day at school or just about how they feel or what they want to do for their Saturday or whatever. I just want him to talk to me. I want to hear his voice say, “I love you mom”.
So I will join M.o.C.h.A seven in her prayers to open her son’s eyes and ears and heart and brain and mouth and vocal cords to speak. Will you join me in that prayer?
Please listen to the last minute of the audio version to hear probably the sweetest recording I have ever heard of a young seven year old boy with autism whispering to his mommy in the wee hours of the night as they fall asleep. The first glimpses into the answer to her prayers.
Thank you for taking some time out of your week to view the world with a whole new per-spectrum.

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