The Hardest Thing- Part 1 of 3

Today there is a temporary break in my self depricating humor and blaming the worlds woes on celebrities and gravity. If you want something to make you smile you want to check out the categories  ” it’s juicy” or  ”potpourri”.  Today I am going to let you in to one of the most personal issues of my life. It’s a long post and probably not funny to anyone. I don’t apologize.

18 years and 6 months ago I had my second child. My son. I was married to a guy that wanted a second child, in a marriage that was logically impossible. Yet we had a second child.  I remember the Dr’s saying emergency c-section. I remember there being talk of low apgar scores. I remember my husband saying something about me producing a retarded kid.  Needless to say I had divorced aforementioned dirt bag before my son was 6 months old and my oldest had just turned 3.  But this isn’t about that man. It’s about another man.

My son, who is by legal and physical standards a man.   This may end up being a post that causes friction, but it’s my life and my story, I can take your judgement. I am well practiced.

See with my 1st child, my daughter, I was the perfect mom, she talked, walked and read early. Brilliant. Manners and just perfect. Clearly thanks to me and my awesome parenting skills. I would see moms with bad kids and say to myself, seriously?  With my son from the beginning something didn’t set right with my mommy radar.  He would never cry. As long as I didn’t touch him and there was nothing moving or making sound. Trying to nurse him was like a wwf match.  Turning on his mobile over his crib was like stabbing him with needles.  I ran to my pediatrician with my worries.  He told me not to compare the kids, this was bad, and therefore I took that as I am a bad mom.  I had no clue just how bad of a mom I would turn out to be.  My son at 11 months was put in the 2 year old room at nursery because he was hurting other babies.  Another doctor. Another blow off.  By 2 1/2 he had been asked to leave from 10 plus daycares, and they would always say, ” but your daughter can stay”.  NO.  We are a unit, this is all we have, and we will fight to the death to stay together. I never had a break a night out or even sleep.  See he didn’t sleep.  He instead rocked and pulled his hair and banged his head.  I took it all because at least 3 doctors had blown it off as me being a stressed out young divorced mom.  My point of epiphany was the night I was setting at the kitchen table playing solitaire, sounds normal right?  Wrong. It was 3am and I was watching my  son sit in the living room surrounded toys, the family cat accidentally got to close, and next thing I knew my son was eating the cats ear.  This is not a joke, he actually bit the cats ear off.  Then took it out of his mouth and threw it.  At that moment I realized that  other babies slept, other babies didn’t get kicked out of daycares every month, other babies do NOT let a cat claw their face off while they bite it’s ear off. I was not comparing my kid, no matter what any Doctor said, there was something seriously wrong. Another Doctor.  This time.  Autistic.  This time explaining the fact he wouldn’t’ communicate or touch or make eye contact.  I was so relieved I knew what was wrong I could work around it.  I lined his room with kindergarten nap mats going up the walls, I removed his door and placed a sheet of plywood on it’s side that I could barricade him in yet still see him. He wasn’t stupid, a baby gate would not stop him.  When he was around 18 months he unscrewed a screw with a penny. I immediately made a decision. I left my job in the legal field, uprooted my 2 small kids and with $30 hard earned dollars and no sleep.  I drove to a childrens TBI hospital 2 states away.  Did my son have a TBI, ( that’s Traumatic Brain Injury) no.  But it was the closest thing I could figure out to do.  I got a job where I learned to work with TBI kids as a Behavioral Technician, I took in everything and applied it at home, redirection, visual cues, holds.  The holds were important since he had already broken my nose and knocked out my front teeth by this time. Doing a “therapeutic hold” wrong can result in serious injury to both the child and the adult.   The thing is, he improved. I worked hard to teach him eye contact, verbal communication and sadly trained empathy. The last thing on that list makes me the saddest.  Most people have empathy, those that don’t usually end up in prison.  A doctor there, saw him about 6 months into this routine. I cued my son to do all the right things.  This Doctor said, Aspergers ( high functioning Autism) with severe ADHD. He wanted to put him on meds.  I said no, the fact he had went from Autistic diagnosis to Aspergers was a sure shine I could help, he would be ok.  At a Dr’s appointment a few months later, the Doctor said to me, ok he’s diabetic and needs insulin shots twice a day. I gasp, then immediately asked him about the needles and dosage.  The Doctor stopped and said, why were you willing to give him insulin for diabetes but not medicine for his other physiological issues ?  I told him the truth, that I didn’t want to drug my kid up with the new “disease of the day” medicine so my life would be easier. There I sat taking him to Doctor after Doctor trying so hard to help, yet I had formed such a strong pompous opinion about children on medicine I would accept the fact maybe my kid truly needed any? Come to find out my son didn’t really have diabetes, this was the Dr’s way of making a point.  He won. I put my son on meds that day.  I continued to work with my son, the internet wasn’t around and I couldn’t find any support groups, here I was a single mom with 2 kids, 1 of which was really a handful. I can’t count the packed grocery carts I left in stores because some stimuli sent him over the edge and I had to get him out of there immediately, or the way I wanted a shirt that said, ” I’m not a bad mom and he’s not a bad kid”  I was constantly judged. Judged in the way that I had judged all the other parents when I had only 1 child and she was perfect.  See my son looked perfect, so therefore no one knew, they just saw a bratty kid and stressed out mom.

I moved back near my family and got a new job, and got my son tested for the EIP at the school.  ( early intervention program).  I was crushed when he didn’t get in, because at the time the law required a physical defect, he had none, only a sketchy barrage of  mental diagnosis, and ADHD was new on the scene.

My family would try to function around him, but it was impossible for them. They would offer to take my daughter places, but there was never a time my son was not with me, or at the “current preschool” while I was at work and work only.  The new doctor said he was ODD, DD, and ADHD. oh goody more letters, but said she saw no signs of aspergers clearly the other Doctors were wrong. Wow he’s cured from the ones I thought were so bad?  Well those symptoms that stuck him in that category were gone.  I can handle hyper.  Not a biggie.   I had no friends anymore, we didn’t have play dates, and some family functions lost my invites in the mail.  We lived a life of solitude. But around this time a friend of mine stepped up from the shadows, he flooded me with info he had found on this new thing called the internet. He printed virtual books and techniques and diets.  This friend was not a parent. Yet when my son spat in my face and spewed cuss words like a tiny George Carlin, my friend took it, and handled it. I had worked hard to implement all Behavioral techniques and my biggest motto was. I have to teach him no matter what his disability that he HAS to function within the rules of society, or he couldn’t  be part of it. My friend got that and backed me on it.  Around that time the current pediatrician spent 3 minutes in my 24/7 life. During a visit my son bit her on the butt.  She instinctively turned and slapped him in the face. I had trained my instincts not to react. But it caught her so off guard she just reacted.  She broke down in tears apologizing and trying to hold my son and tell him she was sorry and he in turn was a Tasmanian devil. She calmed herself a bit and then said, ” how do you do it” my answer was, I don’t know.  I spent the first 4 years of his life covered in spit, bite marks and bruises. I just got used to it.  Was there a door number 2 I didn’t know about, another choice? I refused to hurt or be mean to my child, I made that decision before my kids were ever born, when I was the child being hurt.   That doctor refereed me to this specialist in another state who was the CHIEF of Pediatric Psychiatry of a HUGE and prestigious teaching University, she managed to get me in the next day when he had a 3 month wait list.   My son jumped out of moving cars,  he could un-do a cars eat, any car seat on the market, I repeat he was not stupid.  The long drive coupled with the long wait and the change in his schedule spelled utter disaster.  The oh so important Dr asked me to let my son out of the therapeutic hold and let him loose. In less than 4 minutes he had knocked over a filing cabinet, tore up the mans desk and ripped the Doctors socks, and bit the man.  This prestigious doctor looked called nurses to remove my son so he could talk to me.   He flat out told me to give up, stick him in an institution and shut the door. I couldn’t find words.  He then took it a step further and said, I see you have another child, a daughter who is older and fine.  I managed to nod.  He then told me how we would all be murdered or at the very  best my daughters life would be so compromised by having a brother like this around her she would be on drugs and sleeping around by 13.   I don’t know where it came from I mean this man had more letters behind his name than are in the alphabet.  But I didn’t feel like the worried mom anymore.  I was a tiger protecting her young.  And the following words flowed from my mouth.  ” Doctor I am in awe. In less than 10 minutes of what I deal with 24/7  you managed to diagnose my son and predict our futures. You are good sir.  So good, I ask you this, can you tell if I am going to pay your bill?  I can tell you. I am not, and the fact you would suggest this of my child as if he were a pair of old shoes disgusts me.  However if you could use your psychic fortune telling powers to give me the lotto numbers that would be worth the drive.”  It sounded strong, I took my son and left like a strong mom.  But I wasn’t strong, you see, I cried the entire 2 hour drive home, like a baby, crying for my baby, not just my son, but my daughter.  As I drove over the long bridge I remember thinking, I can’t throw him away, but I can’t do this, everyone says there is no way.  Is he suffering, does he realize it, will this really be his life forever?  Thoughts of driving off the bridge seemed almost sane. I mean. I couldn’t lock him away, I couldn’t let him suffer, and I couldn’t let him go alone. We would both go, together. I brought him into this world gave him life and held him, and would hold him as we both left it.  Then my daughter came into my mind.  My beautiful daughter with her entire life ahead of her.  How could I abandon her?  I couldn’t any more than I could him. We would fight.  Together.

Then the friend I mentioned early well he was our one outlet, sharing this internet with me, coming up with ideas, being patient, being tolerant.  And one day this friend, well he saved my sons life, sort of. My son had gotten to the top of a slide ( normal for a 5 year old yes) but decided it would be a great idea to just jump off the side from the 8 foot top.  My friend managed to beat me to the sliding catch.  He wasn’t my friend anymore, I was in love.  Long story short, our friendship blossomed from there and that became my husband in less than 2 months. Yes the husband who is the brunt of so many jokes and posts on my site. That guy.  ( I highly suggest to any single ladies, that you marry your friend, if possible, it’s awesome)  He will always be the secret super hero of my life, the one with the cape that only I can see.

I put both my of our kids in private school and took a teaching job there to pay for their tuition.  Smaller classes, more understanding, more dedicated teachers,  I explained everything upfront so there would be no issues. Unfortunately even with 2 dedicated parents in the picture working 24/7 to help him, we weren’t able to get him thru even kindergarten. His poor teacher actually quit after having him in her class. The antics and problems are just too many to list.  In lieu of you probably needing a comic break I bring you this story from Kindergarten.  He was being picked on constantly by older kids. ( shocker right? it’s like they can smell the weaker ones)  so he was hitting them, and we would get called into the office.  I would explain no matter what you are not allowed to hit people, your hands can not touch other people, if someone breaks that rule, let an adult know.  The next day, same thing, but he kicked people.  Same speech but no kicking people.  The next day, same thing but he spit on the people,  same speech but no spitting that’s not only wrong but seriously gross dude.   The last day.  Sister Mary called me out of class, and there sat my son, not mad or upset but instead almost smiling.  Sister Mary told me he was being chased and ran to the top of the monkey bars,  when the bullies got under him, he had urinated on them. WHATT????  She was in tears but my son was smiling.  ” Momma I did NOT, I peed on them, because that’s not hitting, kicking, or spitting.”   I told you he wasn’t dumb.  It’s wrong but you have to admit its funny.  We scrubbed the playground for punishment and I had to add,  you are not allowed to pee on people to his long list.  I shared this with you because seriously.  Even though this post sounds all depressing, and horrible, we laughed, we laughed every day, we laughed about how we kept the silver ware in a locked box on top of the fridge instead of in a drawer. I think that is how we all stayed sane to whatever level we did stay sane.  I never let my children know I felt sorry for them, because this wasn’t a normal life, I made them feel proud about how special our life was, and what a strong team we were.   But on the right day for a short period, he could pass for a normal kid.  Despite a child psychologist telling me he was the next Hitler. That guy didn’t get paid either. But the point was, he was improving, he could pass for normal, or whatever the hell society thought was normal.  There was never a week that there wasn’t a meeting in school about his behavior problems.  Both parents went every time.

Getting married brought new doctors, new diagnosis and new meds. By now I just asked a boatload of questions about each med and asked if there was any other option and then succumb to the fact my kid was broken and needed meds.  Parenting classes,  family therapy and even solo therapy for him.  They would start talking to us and we would actually give the therapist tips,  we offered advice to other parents, but still our lives were always filled with mayhem and other then our tight little unit of 4 there really were no outsiders, friends or family.  As he got older he in turn became harder to control, and thus we became further isolated.

Maybe that’s why when last year I decided to get on the internet I found it free. No one knew I had a broken kid, no one could hear or see him, he didn’t affect anyone and I could escape into everyone else’s happiness or what they thought were problems.   Like being late for school?  I could be my old funny, crazy self, cracking jokes and making friends easily.  Then in November I started reading blogs. I read blogs that were funny, raunchy, inappropriate, inspirational, and heart wrenching blogs. I read them all. I kept my mouth shut about my past, my child., my pain.  It was easy. Only my real friends know. What’s left of them anyway.   I started a blog and decided it would be a place to be peachy, say peachy things, share a smile or a laugh.  But today it hit me while reading a post about a mom who couldn’t handle the special needs of her child, I saw what people said in the comments.  Recently an adoptive mom returned a kid to Russia with a note.  Clearly non matching socks, cake for breakfast and being late for a play date are huge issues to most parents.  That can just trash their entire day.  I guess I just had a different experience, with different issues.  I felt I needed to write this post. It hurts like hell to relive this. It’s far too long, and there’s a good possibility I will get some very negative feedback, it’s ok. I can take it, trust me when I say, nothing you can say can be worse than the things my own son has said to me, or the choices I have had to make. Choices that tore away a chunk of my soul on a regular basis.  So this is part 1 in a 3 part series.  I think we made it to 6 years old here. The reason for  3  posts are and 3×6-18 and he’s 18.

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8 Responses to “The Hardest Thing- Part 1 of 3”

  1. Wow! What a sojourn. We will need to talk more when I can take some time to write. Very moving. We each, as parents or siblings or caretakers of special needs folks our own stories and experiences.

    I need to also read your next installments before writing back. You are one dedicated mom! Good for you. Good for everyone whose lives you touch.

  2. HengiJon says:

    I am reading along and crying. My son too has all these problems and we work so hard to help him. I hope part 2 and part 3 have a happy ending. Good luck you are a strong mom.

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  5. Derek W. says:

    Peachy, Sandi, my friend… I really don’t know what to say. This was truly an eye opener about what and who you are. I am BEYOND words.

    I knew you were special from the very first words we exchanged on twitter. But reading this makes me think you are supernatural and truly a super powerful woman.

    Even know this brief history of you, I will continue to joke and be sarcastic and share humor with you – I think that we both agree that it helps. It won’t cure, but it helps.

    As the saying going, walk a mile in someone elses shoes before complaining. I think in this one post, I’ve walked to the nearest star and back.

    You have strength I’ve never imagined. Mainly because you were able to – not to HIDE or be ashamed of your past – but to truly own it, and still see the good in life and friends and family.

    Take care and your friends will always be there when they can!

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