I can’t believe I’ve survived the first month of home school once again. Iggy was really excited about learning colors today. It seems as if once he starts to learn he doesn’t want to stop. Seeing how learning boosts his self-esteem makes having to argue with everyone about socialization well worth it. When a neighbor asked if he was in preschool. I answered no, smiling, patiently awaiting the barrage of negatives I’d assumed she was going to toss at me. She replied by saying, “Great, good for you! I don’t blame you one bit. I’m glad my grandchildren also don’t attend school with the non Christian Liberals either. Their main goal is not to teach the children, but to turn the children into gays who will vote for them” Then she smiled, winked, and walked away. I stood there silently thinking, really??
In the 1980′s I hung out with my teenaged uncle and his tough skate punk friends at age 9 so there aren’t many things that shock me or shut me up but I will admit that elderly lady did both. I’d wished I’d had a snappy witty come back or a sarcastic “Ravenism” to hit her with but I felt myself just feeling ill not only because this woman thought the worst thing her grandchildren or any child could be was homosexual, but because my child is homosexual and as his mother I must equip him with the tools to live life with autism as well as teach him how to effectively deal with people like her.
Recently I read an article, “I have zero expectations about my daughters future relationships by Heather Voss (offbeatparents.com)
In the article the author explains why she won’t place expectations on her child opting to allow the child to be who she is meant to be. What a great idea! I thought to myself. You mean there are others like me who don’t buy into the idea of placing their child into societies mold? I recalled all the years of torture I endured from my maternal family as they repeatedly tried to fit this gifted sporadic ADHD child into the mold of preppy genius who sits still. So you’d assume I, Raven, crusader of the unusual would have embraced her 15 yr. old sobbing son whom she’d just discovered was dating a boy. Nope, I’m ashamed to say I reacted with stupidity and fear. I thought I’d failed him. I remembered the moment I held him in my arms for the first time and imagined an athletic handsome man with a wife and kids just like all the other suburban Stepford drones I’d claimed to distance myself from. I didn’t realize until I talked to my child how hard it was for him to carry this elephant we had placed upon his head. He’d discovered his sexuality at 12 and now had the difficult task of trying to blend in with the so called normal non-aspie kids and pretend to be the perfect heterosexual son, just as it was difficult for me to sit in gifted class an imitate the normal kids. I used to sit quietly trying to pretend that I was seriously studying ancient Rome just as they did when in reality all I wanted was to get up, run around the room, and yell, ” I am Spartacus!” My mother also thought having an ADHD child meant she’d failed in some way just as many of the parents I’ve met through the years who have children with autism feel they have failed when the pediatrician gives them their fate.
Once again we never consider the child’s positive possibilities we only think of our dreams that have been deferred. Over time I have taught myself to think ” out of the box”, as my hubby says. After having many conversations with friends both gay and straight I found that my fear stemmed from literally watching a dear friend of mine die on the street because his intolerant parents disowned him. Only 16, at the time, I felt so helpless. I’d wondered how could someone do this to his or her intelligent, talented son who’d never been in any trouble. I cried daily because I didn’t want my child to suffer the same fate, until my husband told me what happened to my friend happened not because he was gay but because the people around him who were supposed to protect and support him threw him out. Only then did I realize I had a big part in my child’s life success, just as with autism. I am proud to announce, a year later, my son and I are fine. I love him just as I always did because he is the same boy he always was and his being homosexual doesn’t change anything. He is still an athletic, handsome young man who someday will have a husband (legally, if my state allows) and kids. If that makes him happy, then I’m happy as well. By the way all the aforementioned expectations are his . Also by writing this I am in NO WAY suggesting autistic people have ANY correlation to being Gay or vise versa. I’m just writing MY story about MY child, who happens to be both. He’s also a gymnast and played soccer I see no correlation there either (wink). I do however see a correlation between parental acceptance and lifelong success for any child.
My mother and I were never close, due to her untreated mental problems; she could be quite verbally abusive and cold towards me. My mother was paranoid about what others thought. I should have the perfect manners and be the perfect child because as she always told me as long as I lived in her home I was a reflection of her. Although I tried my best, total perfection was an unattainable request for a ADHD daughter and I fell short of her expectations 99.9 percent of the time. Every time I failed she would berate me by telling me what a perfect mother she’d been and how she didn’t deserve a child like me, which made me feel like the crud underneath a moldy board. I was helping my son Bowie (16) with a problem when I realized that I never came to my mother for help because I never wanted my imperfections to make her feel as if she were an imperfect mother.
Every time I went to my old Facebook page I was reminded of sitcoms from 1950-80. On Facebook all kids are perfect always smiling, always beautiful, report cards perfect, and popular of course. They all have funny, cute, witty, sweet sayings, that earn their parents at least 20 or more likes, which is like receiving an Emmy in the Facebook universe. They never have to raise their voices or scold these perfect kids because they are perfect parents. When is the last time a parent posted “My son just had a meltdown in the check out line at Lowes! (smiley face!)” Or “My son just told me he is gay! ((hugs))” yet those scenarios are also a part of life as a parent. I think we rarely post such things because of our need to be perceived as the perfect parent. We have this crazy idea that if we are not Ozzie and Harriet, we have failed. As a child who suffered from hyperactivity disorder with a mother who had zero patience for me and now a mother of two autistic children, I learned the whole parents must be perfect to be a great parent perception is false.
Its 7:30am and I’m standing in the bathroom listening to the local news while Iggy snores lightly in my bed after having one of those nights where he refused to sleep because he wanted to watch SpongeBob, one of his obsessions, at 9:30PM and sat in his bed discussing this with himself til 12am. This happens often and when it does I sit with him or bring him to my bed. Yes, I know allowing your preschooler to sleep in your bed is ” Just wrong” and a satanic act for a mom but sorry Super Nanny in this house we need to sleep. At 6 am right on schedule is Bowie who panics every morning about things he did or said the day before and how these things will affect him, is up as usual, and in panic mode. With patience and a calm voice I reassure him about his day. He usually doesn’t go through this every morning but recently he has started discovering his sexuality this has opened the door to a whole new world of panic and problems. Dating and sexuality is a strain for any 16 year old but throw autism in the mix and you’ve got one hell of a roller coaster ride for both mom and son.
Once I’ve convinced him the world will not end anytime soon he starts his day. I spend the next 30 minutes alone to write and shower without hearing Mom! or Mommy! I check Facebook and I am overwhelmed with all the posts of perfection. One mother has posted a video of her child singing a song about what a perfect mom she is. Some mothers write blog length statuses of the wonders of motherhood and how they thanked God for the opportunity and only wished they had more children. While Iggy is screaming in my ear, “ SpongeBob Mommy! I want, play SpongeBob!!” I say to him SpongeBob what Iggy? He replied loudly, “SpongeBob GAMES mommy!” I returned to my Facebook to post this because it was cute (in my opinion anyway) instead I receive this comment from a friend, “We have to work on please and thank you; some little cutie needs a slap on the hand?”
Well excuse me if he’s not Mr. Manners but since it took us 2.5 years working everyday just to get him to say anything; I’m happy to say I’m quite proud of his rudeness. The more I read the other mothers posts on my page the more I became more than a little annoyed. How dare they judge me or my children when not in any of their post did I ever see anything about how much they loved their children. I only saw post after narcissistic post about their perfection as mothers. The Icing on my already rancid fruitcake was a post on mother’s day that read, ” Happy Mothers Day! Hope your enjoying your big break today? Having abnormal kids is so hard and you manage to make having two look so easy. You’re the perfect autism mom. ((hugs))” I was taught to always be the proper charming southern lady and say, “thank you” when someone complements me, but this wasn’t a compliment. I asked myself the question. Why can’t we just be honest about who our kids really are as well as who we really are as parents? Well right now in the words of my son Bowie ” it’s about to get real”.
Yes, being a mother is a gift. I wanted both my boys and I love them both dearly but lets face it sometimes they are a big pain in the butt. My sons tire me to the point of a nervous breakdown daily and as a parent if you claim to have never contemplated running away with the circus or became angry at your children congratulations you’re the parent of invisible nonexistent kids. I have a teen (who I’m insanely proud of) that is aspie, gay, and suffers severe panic disorder and a moody preschooler who will only eat cheese and pop tarts. I’m not perfect, sometimes I lock myself in the bathroom for 10 minutes or longer until I hear Iggy at the door saying, “ Hide and seek mommy, I find you!” and nothing in my house is perfect. I clean it up; Iggy puts it back on the floor. For those of you who have never had the pleasure of cleaning up with an autistic child remember that old saying about shoveling snow in a snowstorm? Well there you go. I’m not trying to be the perfect mother just a mother who loves and supports her children. I don’t feel I deserve a medal for that. I gave birth to them; its my duty. I don’t post my thoughts for popularity or complements so don’t patronize me because I’m the parent of autistic children.
I know my children are special and I love them just the way they are. Its not comforting to be told, “they will grow out of it”. No, they won’t and guess what I wouldn’t want them too. Being autistic is a part of who they are and I’m fine with that because I’m a mother I want them to be the best version of themselves not because I want acknowledgement but so they can be happy and live their lives to the fullest, that will be my biggest reward. So no I didn’t spend Mother’s Day having a fancy expensive dinner in a restaurant where my children aren’t welcomed. I ate McDonalds, watched about 20 episodes of SpongeBob Square pants, and talked about what the highest score ever in Sonic is because I’m the mother of two autistics and this doesn’t somehow magically disappear on Mother’s Day.
So to the friend who commented that my son needed a “slap on the hand” I replied,
” I’m not perfect and I’m not pretending to be and to be honest I don’t want my children to think I’m perfect I want them to see that sometimes mom is vulnerable, she cries, she fails, she’s human. So when they feel helpless, or cry, or fail they will know they are human and best of all they will know they can come to their mom because she’s human too and I hope your kids can do the same ((hugs))”
dictionary.reference.com/…/mainstreamin…Mainstreaming definition, integration of children with special educational problems, as a physical handicap, into conventional classes and school activities.
When Bowie was first diagnosed a pediatric nurse took my hand and told us not to worry because there was so much help out there for families like us. She told me Bowie would need speech therapy and a “team”. She quoted the Americans with Disabilities Act proclaiming my child’s right to a free education that fits his special needs. After her lecture we left the doctors office with our hands over our hearts humming, “My County, Tis of Thee” feeling empowered with knowledge knowing we had nothing to worry about. I would just work with my team to give my son a happy healthy life. Watch out world here we come…
Until my ex received a 900.00 bill a month after Bowie started speech therapy. The bill was shocking enough on its own but what floored us was when we looked at the insurance column of the bill it read, “amount paid 0.00″. I immediately called the billing department of the hospital who told me they filed it but our insurance didn’t pay for that type of treatment. The hospital then told us to call our insurance company. I called and a “pleasantly” rude woman explained, “Honey we don’t cover that, that’s a behavior problem not a medical problem.”
There we were already stretched in the financial department because my ex wanted me at home with Bowie since he had other problems because he is also a preemie. As I gave myself a migraine worrying about how we would afford this massive monthly bill in order to give our son the best treatment possible. I came to the conclusion I’d have to go back to work to help pay for all the therapy Bowie needed.
I recalled how much my parents worked to afford my own speech therapy for ADHD. I also had a series of tutors and extra curricular activities because my mother expected me to go to Harvard ADHD or not. After 6 months my mother was told by the therapist that I needed medication because I was incapable of focusing and my social skills were not improving she then advised my parents to place me in Special Education classes, as it was called in the 70′s. What she failed to tell my mother was I was painfully shy due to being tormented daily by both teachers and students because of the way I talked, which in my opinion couldn’t have helped my delay any.
My parents wanted what was best for me and agreed to tour our special classes. What my parents learned was at my public school Special Education was where they dumped all the kids no one knew what to do with. The classes were a mix of delayed learners, Down Syndrome, ADD/ ADHD, and discipline problems we were all herded in the same room, which was a travesty as well as a disservice to each of us. When my father asked why. He was told they just didn’t have the resources. After the tour my parents became insistent that I would not end up in there.
My mother an RN and avid reader considered herself an intellectual and my father was a radical hippie who believed in “power to the people” so they decided they would give teaching me a try. They bought books, flashcards, and this case of laminated worksheets. They removed me from first grade and began teaching me on their own. I also attended a daycare that I loved for social interaction. In about 3 weeks I started to thrive and my mother had to purchase more learning material to keep up with me by 2nd grade I was placed in a private school at an advanced level because my parents equipped me not only with knowledge but self esteem.
Then the light bulb in my head switched on, “I’ll teach Bowie on my own” Of course I would work with professionals to evaluate his strengths and weaknesses then go from there. I then introduced his father to the idea and he agreed. We were young and very naive to what we’d just signed up for. I’m not referring to agreeing on DIY therapy for Bowie. I’m referring to the backlash from well-meaning medical professionals, teachers, friends, and family members.
My ex’s stepmother gave us our first negative response when he told her and she explained, I was not a therapist. I was a social worker that worked in retail during college and Bowie would not receive the proper treatment from me. From that point on everyone warned us of our stupidity and how we were hurting our sons’ future. My own mother told me she disagreed with my methods saying yes, it worked with me but Bowie wasn’t me. I kept teaching him and his vocabulary and skills kept improving as the naysayers kept right on coming.
We were confronted at every family get together or accidental meeting. My then mother in law even mailed applications for preschools to us. This hailstorm of negativity continued until finally my ex broke under pressure and agreed to send Bowie to a private preschool.
Bowie was a rambunctious sweet talkative little boy who loved greeting everyone, tumbling, playing hot wheels, and video games. He was a playground favorite and had one best non-Aspie friend who is still his best friend today. After a week of school he became silent and withdrawn after a month he started screaming and crying every morning begging us not to send him there but everyone continued to tell us just keep sending him there, he would adjust.
Then we came early to pick him up one day and I peaked unto his classroom to see our son curled up in a corner while kids called him names and threw toys at him. As a mother I didn’t even think I rushed into the room, whisked him off the floor, and he never returned.
For the next 2 years I tirelessly taught him at home using flashcards, games, books, crafts, movies, the library, public television, and toys. I also found a tumbling class he loved for social needs. During those 2 years family members shunned me because they felt as though I was hurting Bowie. It wasn’t easy or for the faint of heart there were days I’d cry because I couldn’t reach him or I felt I was failing. Then he would walk up to me holding a Hot Wheels car swaying from side to side and say, “Four tire mommy, one, two, three, four… Bo do it mommy!” then I knew I was doing something right. Bowie reentered private school at 6 he was moved to the 2nd grade and is still doing fine.
My dad loved tattoo art and had many tattoos. My favorite tattoo on my dad was of a koi fish. Swimming up stream. He always told me it was a Chinese legend that some courageous koi are brave enough to swim upstream against the waves of the Yellow river to the Dragon gate when they reach the Dragon gate their reward is being turned from a fish to a dragon.
When dealing with a special needs child we need to realize no matter how much graduate school or medical school someone has attended or books they have read they will never know our child as well as we do. As any parent of a special needs child knows they are all different. I have two sons on different ends of the spectrum they have strong similarities but they are different in so many ways. What worked with Bowie doesn’t always work with Iggy. With Iggy I have to develop a whole new way of teaching. I have a friend whose child thrived in therapy, loves his special school, and doesn’t want to be mainstreamed and another whose daughter can’t wait to be mainstreamed into regular classes at public school with her friends. We must also realize that our situations are different as well. For some of us the only “team” we will ever have is a few friends and our partners. We each have different income, families, levels of patience, insurance companies, and schedules. Ask questions, do research, get advice, gather all the ammunition you can to battle this because you will need it, but never let anyone tell you what is best for your child.
And if you find your child requires you to swim up stream don’t be afraid to do so remember you are your child’s superhero.
Keep thinking for yourselves,
The Raven RagDoll
It’s Sunday and I’m sitting in the family room writing, listening to the rain, mixed with the slamming of a gazillion car doors. Church time in suburbia! Mustn’t be late for church or God will dock your heavenly pay.
No, I’m not anti Christian or anti anyone. I’m just a woman who grew up in private Christian schools where I was told lies about God daily and taught that God was an angry wizard wearing a white robe that glowed golden light who punishes those who don’t vote conservative. I was afraid of God and church for years because I was taught my feelings, thoughts, and loves were all against Gods rules. I decided to read the bible for myself and the more I did the more I learned that Gods rules had been manipulated, although they use the term translated, to fit their needs not Gods. I continued to read more and I began to form a relationship with God that works for me.
When people become concerned about my boy’s spiritual health. I tell them
I support my kids’ choices. My eldest Bowie is Jewish, like his father, and loves his religion. We teach Iggy about God and he is exposed to all religions and given the freedom to choose when he is ready.
I look at the clock on the computer and its screaming, “time to get the kids up”. I think time is my enemy it makes me feel as if I’m the white rabbit from Alice in wonderland, “Oh dear! Oh dear! I shall be too late!” It doesn’t help that it takes about 30 minutes to get my autistic sons, who never sleep at night, up and dressed.
Bowie, my mini me, whose life resembles a teen soap opera, kept me awake because he suffers from severe panic disorder and little Iggy, who hates sleep, normally stays up way past his bedtime talking and playing alone in the dark (autism, you got to love it).
I love my sons but honestly some days I swear they could force Super Nanny into the witness protection program.
Bowie (16) is high functioning, superior at anything math related, plays soccer…but struggles with social cues and is hyperactive. He is climbing the same mountain as any other teenager he just has an extra boulder in his backpack.
Iggy (5) is an exact replica of my uncle who we now know was autistic but he was never diagnosed. My uncle, like my son, was a loud energetic soul that feared nothing. My autistic uncle made a huge impression on my life. He taught me we are all normal in our own way. He also taught me we only live once so be yourself while you are here. I often think of my uncle when I watch Iggy spin. My uncle loved anything that made him spin.
The love of my uncle’s life was my Gran. Gran was so patient with him and loved him for who he was. Sometimes I think she, my dad, and I were the only ones who did.
I often draw strength from Gran when discouraged. When Bowie was diagnosed Gran told me not to be sad all children are the same they all make you laugh or cry at some point. It’s up to you to see their strengths as well as their weaknesses.
I never realized until how golden my Grand’s advice was. When my uncle was small he lived for music. He’d sit in a corner singing (very loud) for hours on end or he’d talk your ear off about musical instruments and when others would place their hands on my grandmothers’ shoulder and whisper, “ Kate, we are so sorry ” she would reply, “Sorry?” “Sorry for what?” my child can play 10 instruments without lessons; I’m not sorry about that.” What Grand was saying was we spend so much time being sorry for what our children are not that we forget to grateful for what they are.
When people look at my Iggy and see a child that speaks out of turn, rarely listens to instruction, and constantly repeats the same action they automatically feel sorry for us but he is also obsessed with running, making movies, video games, graphics, and puppets. When I look at him I see an Olympic sprinter, a film director, an animator, and a puppeteer.
With Bowie I’m constantly being told that he is different and again people are so very sorry that he will never be prom king or quarterback. I say that’s fine with me. I see a kid that has mastered abstract algebra at 16 and who has loved to jump, tumble, somersault, and vault since he was a toddler. So what he probably won’t be prom king or quarterback, but he just might be Albert Einstein or Bart Conner.
Keep thinking for yourselves,
The Raven RagDoll