Nicholas
Nicholas’s Story
by Cyndi Mininni
Do you remember that poem; Monday’s Child?
“Monday’s child is fair of face,
Tuesday’s child is full of grace,
Wednesday’s child is full of woe,
Thursday’s child has far to go. …etc.”
Well, this poem always stuck with me. You see, I’m a Tuesday’s child, and as a pre-child adult, the one word my friends would always use to describe me was classy. I remember looking up when my mom was born and she’s a Wednesday’s child. Boy did that ever fit her! She struggled her whole life and I swore that would not be my life or my children’s life.
New Year’s Eve 2008, I broke up with my then-boyfriend of 6 years. At 35 years old, after many failed long-term relationships, and helplessly watching my drea
ms of having a family, a child, slip through my hands and not be able to do anything about it, I decided to let it all go and just take care of me. In January 2009, I searched for how to become a foster parent and I started going to the gym. I was going to move on and not wait around for another relationship to fail me, and I was going to lend myself to children who already existed who needed someone to help them. By mid-January I had started the classes at the gym, and my foster parenting certification classes started soon after that. I loved the gym I was going to – a boot camp style gym and felt right at home. I immediately hit it off with the owner of the gym and soon he and I started dating. He was charismatic, had the gift of gab and his boot camp program worked amazingly well. I had lost 22 lbs in 2 months and I hadn’t even changed my Taco Bell diet. After about 2 months of dating this guy, we were intimate. Twice. And right after the second time I found out things about him that forced me to end the relationship. Around the same time, I also finished my foster parenting classes. Even though romantic relationships were clearly not working for me, at least I was still moving on towards something that would fulfill me in other areas. A few weeks later I found out I was pregnant. Wait, what?? Talk about mixed emotions. I was happy, confused, now what? I told the guy I was pregnant and to my surprise he wanted nothing to do with the baby. Are you serious? Who does that? A man walking away from their child was something I had never been around. I’m one of 4 and I have LOTS of cousins. Even if people in my family got divorced, they still took care of their children like nothing had ever happened. Now I was hurt and mad too.
I was due December 12, 2009. I had a pretty easy pregnancy. I found out I had to watch my blood sugar, but aside from that, everything was good. I LOVED being pregnant!!! I managed my blood sugar well and I only gained 8 lbs during my pregnancy I didn’t feel Nicholas move around too much, but I just thought that was because I was overweight. My ultrasound and prenatal appointments went well and Nicholas was a “good healthy baby boy with LOTS of hair!” December 12th came and went, no Nicholas. December 13th, no Nicholas. Monday, December 14th came and my doctor said we have to induce. I said ok. My doctor said the 16th, I said no, any day but the 16th. She was in surgery all day on the 15th, and going out of town on the 17th. I begged her “not the 16th, please, not the 16th!” She didn’t understand why I was so against the 16th, but if I had told her it was a Wednesday and attributed the outcome to the poem, she probably would have assigned me to the mental ward.
So, I went along with along with it. I was admitted into the hospital at 6pm on Tuesday, and after not dilating AT ALL, my doctor decided against inducement and on Wednesday, December 16, at 7:35am, I delivered Nicholas through C-section. It’s a good thing too because Nicholas’ left leg was bent so far forward that even though his foot was in the air, his knee was still facing forward because his hip twisted completed around. Nicholas was born with hip dysplasia. They ordered a harness for him and it was an easy fix. My hospital stay was easy, Nicholas never cried. After 3 days of healing, we got to go home.
Nicholas was such a great baby!!! He was always content, never cried, and slept through the night 
after 1 month. At 3 months He went from his bassinet to his crib and the transition was seamless! I breast-fed Nicholas until he was 4 months old. My milk had stopped coming in and I switched him to formula. That’s when everything started changing. Nicholas began to start having constant issues with gas, bloat and constipation. I tried 6 different formulas and I settled on gentle-ease. He was still having issues, but they we mild in comparison to the effects of the previous 5 formulas. Nicholas wouldn’t roll over or really move too much at all when we did tummy time. He had no interest at all. Even though his eye contact was there and he was 
connected to me socially, Physically-speaking it was like he was a preemie. I had spoken to his doctor about his development and he said it was normal, nothing to worry about. At 7 months old, still not sitting up, but very much into me, Nicholas began what turned into 6.5 years of constant, repetitive sinus and ear infections. From age 7 mos to 12 mos, he had 8 ear and double ear infections back to back to back. He was consuming antibiotics like I consume water and he was still dealing with his gut issue. At 9 months, Nicholas had a 2 week break from infections and the ENT doctor said let’s place tubes in his ears (this would be the 1st of 4 ear tube surgeries in 4 years). He put the tubes in. A few days later he was sick again and on another round of antibiotics. 10 days later we had his well-baby check-up. Because Nicholas was so far behind in his vaccines, his Pediatrician said he needed to be caught up. On his last day of that round of antibiotics, Nicholas received 4-5 shots with a total of 8 different vaccines. (I didn’t know at the time that 2 weeks needed to go but from his last dose of antibiotics before he was to get shots). That night Nicholas came down with a 103.2 fever and held it for 2-1/2 days, after which he broke out into a rash covering his entire body. I took him to see to the doctor and was told it was Roseola and that it was going around. That’s when Nicholas stopped looking at me, stopped cooing, oohing and aahing. It was like someone turned his switch off. I didn’t exist is in eyes anymore.
At 7 months old, Nicholas still had not yet been able to sit up completely. He started walking while holding on to things when he was 12 months, and began craw
ling after that. When he crawled, his right hand laid correctly, but he rotated his left hand backwards (palms down, fingers facing him). He couldn’t chew anything and I remember at Thanksgiving (11 months old) my sister in law at the time set out a fork and spoon for him and I said he wouldn’t need that because he wasn’t able to feed himself, and her response, with a real snotty tone, was “he should”. I gave birth to Nicholas when I was 35. At that time, my youngest Bruce or nephew was 15 years old. I didn’t have anything to compare him to. I knew something wasn’t right, but the doctors kept telling me he’s normal, so what could I do?
When Nicholas was 12 mos old, and by this time had completely wiped me out of his social circle, I contacted a good friend of mine who has triplets (one of her girls has autism) and I asked her what autism was. At the time the only thing I knew about it was that the child stops looking at you. (My friend was the only person I knew up until that time who had a child with any kind of disability. I’ll be honest, kids with a mental disability freaked me out and I avoided them like the plague! I’m not perfect, just honest). My conversation with her lead to me to a speech therapist at the local ISD, and eventually Nicholas started Early-On, an intervention program the school offered on Wednesday’s to help kids who needed a little extra attention. I thought, oh this is going to be great – they’ll be other kids like Nicholas and It’ll be good! I HATED it!!! Bringing him there each week was as a constant reminder of who my son wasn’t and what he couldn’t do. Nicholas was all over the place, like a feral animal, and I was the poor (figurative and financially) single white mother who couldn’t control her biracial child. A child with no father. I was a statistic. (I still up until that point don’t know how that happened to me). And I was also just entering a world I had made every effort to avoid my whole life, and knew nothing about. I knew each week early intervention would bring me to my knees, emotionally speaking. The staff had come to realize it too and stepped in to offer me extra encouragement and support. Wednesday, once again, had become the day of the week I loathed. 
Shortly after Nicholas started the early-on program, I received a call from the coordinator at Nicholas’ school saying “there’s a doctor here from U of M and she comes down once a month for free evaluations and we had a cancelation, would you like to come in with Nicholas?” I didn’t understand why they were asking me but I said sure and went on in. (I wasn’t in denial that something was “wrong” with Nicholas, I just wasn’t aware of how “wrong” things were, or were about to get!)
As soon as the doctor (Dr Nelson was her name) laid her hands on Nicholas, she said he had Ehler’s-Danlos Syndrome and Hypotonia. “What? What the hell were these???” I thought. …And so started our journey of rehabilitation services of constant O/T, P/T and still some speech at school. I was already not getting child support, and now I was taking extra time off work. I had no money, I was so far behind in my rent and bills, every day I woke up was a nightmare. What was happening? And why was I having to do this all alone???? By this time, I was already on my journey of a steady downturn into depression and isolation.
At 17 mos old, Nicholas received his 1st autism diagnosis from Detroit Children’s Hospital. Two months later we received his 2nd diagnosis confirming autism from University of Michigan Mott Children’s Hospital, the same hospital Dr. Nelson worked at. This new pediatric neurologist also wanted to do genetic testing through a blood test. 8 weeks later, we got the IDIC15 diagnosis. Then the doctor tested me and 8 weeks later I found out I also have a genetic abnormality on chromosome 15. Oddly enough, I found comfort in knowing that this was passed down from me and not just some fluke thing that happened to him. No bad luck in the draw. No, this was my child and now I felt truly connected to him as his mother.
In 2012, just weeks before Nicholas turned 2, I attended The Son-Rise Program Start-Up class on a scholarship I received from The Autism Treatment Center of America in Sheffield, MA. It was a 5-day program away from Nicholas, where I was surrounded by other Autistic parents to learn how to parent a child living with autism. I was at my all-time low and needed just something, anything, to help me figure this out. I found the class to be more for me than for my child, and by the time I left, I felt like a brand-new person. They taught me that life wasn’t happening TO me, it was happening FOR me and that even though I had some special challenges to work through, the “struggle” was just my perception. That I was in control of this life and how what I thought about it would shape my world. The Son-Rise Program is a 3-class course, 5 days each, and through the help of some very generous donors, I was able to complete all 3 courses. Through what I was 
taught, I ran an almost-full time son-rise program at home for 4 years and socially speaking, Nicholas did great! We eventually ended our program a little over a year ago when I began to realize Nicholas’ autism wasn’t his main thing anymore. I mean sure, we got the IDIC15 diagnosis, but up until then, we really didn’t relate that much to that community. But about a year or so before we ended the program, I began to realize that there was something more that I wasn’t addressing. Nicholas wasn’t just autistic anymore. He was weaving in and out of autism. The IDIC15 was becoming more emergent. I’ll be forever grateful for that program, but that’s not really my community any more.
Nicholas is 7 years old now. In the last 7 years I have moved 6 times (as sicknesses arose from indoor conditions and changes in finances). I stopped working in 2013 because he needed me at home. I went through my unemployment, all my savings and my IRA. In 2015, I had to sell my house after only 18 months of living there. (It was a mobile home and the day I moved out, just 4 hours later, the pipes burst and flooded the whole house). I’ve lived in section 8 housing for a year and have been a recipient of state assistance since leaving my job in 2013. I do currently work, but just part time. I’d give anything to work full-time, even just for the 
mental break, but it’s just way too difficult for me to handle. Just this year I renewed my Realtor’s license and tried doing that again, but that was worse than a full-time job! Lol. Nicholas still gets services and I have to be available to get him there, so I eventually decided to put my license back in holding. Now, because of Nicholas’ diet (mostly plant-based. Eating meat and processed foods constipates him too much) and my own need to lose weight, I’m starting an organic coop in my community. Not to make money, but as a hobby just to get free organic produce.
Nicholas has been in school for 3 years
and he just started Kindergarten this year. He loves it there and I do too! They are working on potty training him and that’s going well. Life a little less stressful this past September when he started going to school full time.
My life is unlike anything I could have ever imagined! We have many good days and every once in a while I have a day that’s so bad I just don’t know how I’ll continue on. But those are few and far between. I don’t have everything I want, but our needs are met and we have lots of love between us. Nicholas still doesn’t look at me as much, but he just started giving the best hugs ever!!! He is such a lovely little ham!!!
I’m so grateful to the friends (now family) I’ve met through the Dup15q organization because without you guys, I would not have been able to get through this life intact! We all have different stories, and the information you all share is priceless, but we’re all on the same journey and I can honestly say, without a doubt, that being in the special needs community, you know – the one I avoided my whole life lol, I have met a higher caliber of people than I ever could have dreamed off. You guys totally rock and I’m so honored to be among you all in this life!! I guess Wednesday’s aren’t so bad after all! ��