AND THE WHEELS ON THE BUS GO...
By Teresa Conrick
I am no wimp. I have had my share of hard days but have learned to survive, to take it on the chin. I am no fan of the lemons into lemonade propaganda, but instead investigate those damn lemons and find out if they could help or hurt. So, it was with great surprise that I found myself out in the cold, Chicago morning, clutching Megan's hand as we caught a glimpse of her little, yellow, special ed bus gone.
Why, you might ask? Let me rewind to the start of this event.
I am a divorced parent. What that means is that I am among an increasing group who are finding themselves alone or with shared duties in caring for their autistic children. Not the rosy "I do" we had planned but a tough and courageous call to duty. As a result, I split responsibilities, but let's be realistic as it is hardly ever an even split. The morning bus ritual is solely mine as Megan lives with me. It is a marathon of strength and determination to get a nonverbal teenager dressed and ready every day. It is not always pleasant and is as stressful as you can imagine. The stress has to do with time.
Time is not kind to a single parent who needs to get Megan on the bus, get Mary up and drive her to her school, and get myself to my school where I teach an alternative high school program.
This on top of researching bacteria and its ongoing role in Megan's "autism" as well as moderating yet another Yahoo group.
But single tough redhead was not prepared for the cold reality that not everyone cares. Maybe some of you who follow the ND creed don't care and if so, skip leaving a comment. I found out not everyone cares by calling the bus company to try and decipher what had happened. A new manager came on the phone to tell me that the bus left. No sh** Sherlock. I smelled the fumes. What she added as I fought back the tears is "That we cannot wait and had to move on".. .as I stammered, "You couldn't call?" And then the hammer, "We expect you to be ready!"
Expect..expect? Did she just land her UFO last night? There is no expecting in our autism lives. I keep expecting to see accurate studies being discussed in newspapers, journals, the nightly news; true, justified epidemic numbers being taken seriously; research that parallels what ails our kids with millions of dollars available; CDC and AAP investigating why kids like Megan are so sick and how to truly help.
Instead the flash of yellow became synonymous to yet another departure, abandonment, refusal, and desertion. Now I was angry. No one was going to tell me that my daughter was not worth waiting for, that we would be left behind. I told this new manager that I wanted her to explain to Megan why she let the bus leave without her, that Megan did not deserve this unkind act. She instead paused and quietly told me that they would have the bus return. Concern about her job or remorse in a bad decision? I'll never know but it is our pursuit of truth and justice that will color the landscape for our kids and their future. Buckle your seat belts: it's going to be a bumpy ride.
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Teresa Conrick lives in suburban Chicago with her two redheads, Megan 14, severely affected, and her 12 year-old neurotypical sister, Mary. When she is not teaching, she is researching bacteria, metals and biofilm development in autism with Dr. Anju Usman. She also moderates a yahoo group called The New Autism Paradigm.
Well... this was going to be a short post until I read what's happened since my 17 month old breastfeeding daughter went down for her nap at one this afternoon.
I know I have all kinds of stuff in my body floating around that Sam is getting. BUT she is healthy - the healthiest of my four (the other three had vaccines although not according to schedule). My four year old daughter nursed for two and a half years. I believe that this warded off the worsening damage that would have happened from the few vaccines that she did receive and did cause some damage. Long story... writing it for a chapter in a book. Oh... just so you know - before my youngest was dx'ed - I was on track to become a midwife. Lots to that as well. I speak in terms and the boob is good. I stopped early with my younger son as my older son is also on the spectrum so that assessment is in my eyes correct. I was determined to nurse my older daughter even tho' I had them both running around crazy while I would do so as I had totally "figured that out" by then. Nice comment Joe. Good thoughts, questions, and insight.
Theresa,
I can not tell you how many times I have been on the phone to special ed transportation calling them on their crap! Bus came early - bus came late - new driver - blah blah blah... this year alone I've requested four times due to their error that they make a special trip to pick my Nathan up and transport him to school (he's outside of his home school which is four blocks from our home). My kid is going to school - one time they actually had the gall to ask me if I could bring him in! Ummm... his school is a fifteen minute drive from my house! With two to three other kids in tow - I THINK NOT!
It takes parents standing up and not putting up with the schools inability to hold IDEA to the governments promise of 40% funding through IDEA for special ed children and this includes transportation. Humpf! They've never paid (the government) more than 16% to my knowledge. Insert some colorful whatever :) Add to that the nightmare of IEP's... I think it's funny... at this point - first name basis with the Director of special services and everyone in her office - and they will talk to me - but damn they don't want to. That's just how it goes when we advocate for our kids! Anyone in Vancouver WA need help with Evergreen? Or Vancouver? Let me know :)
Where did that short bus go? It better be making a short trip around the block and be picking my kid up for school!
Theresa, she did just land her UFO! She has no clue and I do hope she has one now. Keep in mind... four special trips this year - five times as many phone calls before they got it... I too have asked - why didn't she call when she was supposedly sitting in front of my home? She has my %$#^ phone number - she's called me before! No response. Ohhhh geesh... I made such a stink now all the drivers want to talk to me personally. Fine with me... here's how it is...
Now the short bus waits... and sometimes waits and waits... :) It takes time sometimes to get him out the door... dressing issues... yep!
Thanks for sharing.
Ang
Posted by: Angela Warner | February 21, 2008 at 11:51 PM
The cause of the autism epidemic is in two refrigerators. The refrigerator at the home has bottles of formula and the pediatrician's refrigerator has bottles of DpT and MMR.
My breastmilk was loaded with mercury. One of my friends also had her breastmilk tested, and it was also loaded with mercury. She calculated how much mercury her baby would receive if she continued breastfeeding...and it was huge...
My first child has autism...my second, only bottle fed, no vaccines, is NT. I don't believe in that connection.
Posted by: Barbie Hines | February 21, 2008 at 11:39 PM
It is possible, however, that breast-feeding may mitigate against whatever environmental assault is occurring and causing autism, provided, of course, that the breast milk is not contaminated as well.
Posted by: Sandy Gottstein | February 21, 2008 at 04:21 PM
I find it hard to believe that the lack of breast-feeding is a major factor. I was born in a non-breastfeeding era (I am now 58) and there is virtually no autism in my generation.
Posted by: Sandy Gottstein | February 21, 2008 at 04:18 PM
The stress of 'can we get our child ready in time' and the stress of 'will the bus be here on time' was too much after about a week. We were already uncomfortable about possible events that could transpire without our knowledge on the bus anyway. We began to transport our child to and from school and eventually the school agreed to reimburse us for it.
Posted by: biomedmama7 | February 21, 2008 at 03:35 PM
Hi, Joe, I nursed Bella, my third, longer than either of her sisters - a full year. She has two older sisters with autism who would have been called a handful by an octopus. But what I was I feeding Bella in my own breastmilk in addition to the good things? I fear each feeding increased her toxicity as it lessened my own.
Posted by: Stagmom | February 21, 2008 at 03:17 PM
The cause of the autism epidemic is in two refrigerators. The refrigerator at the home has bottles of formula and the pediatrician's refrigerator has bottles of DpT and MMR.
May I suggest that you make a list of the biological ailments found in regressive autism. Now I suggest that you search the internet for bottle feeding as a risk for each of those disorders. (PubMed is one place to search. Another is "Reasons to breast feed" on the Internet) There is one I did not find. I may not know all the biologicals.
Tanoue, in 1989 reported "These results suggest that early weaning may contribute to the etiology of infantile autism."
I sent that to a pro-vaccine group and they came back with "It has not been replicated". In my opinion the biologicals are a replication.
Somewhere, someone suggested that perhaps bottle feeding was a villain and that breast feeding is benign. I agree.
Why are those with a developmentally disabled child so likely to have another developmentally child. The younger child is more likely to be bottle fed.(Burd) Can you imagine breast feeding a baby with a developmentally disabled child loose in the house?
Joe Herr
Posted by: Joe Herr | February 21, 2008 at 02:41 PM
Teresa,
How ironic - just two days ago the same thing happened to us. Our 10 yr old son has been having a real problem keeping his clothes on (yes, even in February in Minnesota) has been tearing up his diapers, and melts down at the slightest thing on school mornings.
Timing is EVERYTHING - we do not dare wake him up too soon, because he knows his routine. If we get him ready too soon and he looks out the window for the bus and it is not there, he will take off all his clothes, rip his diaper, and we have to go through a 5 minute process all over again.
Worst thing is when the bus is late. I have told the bus company many times they HAVE to call us even if they think they will be 5 minutes late.
Most days things work smoothly - and I thank God for every day it does. Most people do not give it a thought, but a smooth transition to school for us has been something we waited 5 years for (had to homeschool).
Thanks for writing this and using the metaphor of abandonment. So fitting.
Tim
Posted by: Tim Kasemodel | February 21, 2008 at 12:34 PM
Thank God that Megan has you as a voice. You are an inspiration.. Keep up the excellent work.
Posted by: Sue | February 21, 2008 at 11:02 AM
"Instead the flash of yellow became synonymous to yet another departure, abandonment, refusal, and desertion. Now I was angry."
Teresa, you said it. Its time to switch roles and have other entities experience these very same feelings. What's that phrase again, "enough is enough?"
Posted by: No more | February 21, 2008 at 10:12 AM
As a parent whose marriage has miraculously survived the stress of autism, I salute all single parents who are not only the sole care givers for their special needs kids, but continue to fight daily for the benefit of thousands of affected children. You are inspirational.
Posted by: Karen | February 21, 2008 at 09:46 AM
Sheesh! I didn't even double dog dare you to write this! You hit the nail on the head for us single moms of kids with autism! thanks!
Posted by: Heidi Roger | February 21, 2008 at 08:32 AM
thanks, Teresa for writing this. It expresses what so many of us are living at the moment.
Posted by: Maurine Meleck | February 21, 2008 at 08:18 AM
My son came home yesterday from school (kindergarten) and informed me his teacher called him a liar. He had spilled his crayon/pencil bag on the floor. The teacher's note said she asked him TEN times to pick up the mess. He continually said, "I don't know how." The teacher called him a liar because, "Of course he knows how to pick up his mess." I was livid! I immediately called the principal and we discussed the situation. She informed me that calling a child a liar is not acceptable and the matter would be dealt with. Of course then she spent some time trying to excuse the behavior by telling me how "frustrated" the teacher is - not with my child she said... I asked the principal how it is possible that with an autism epidemic - one in 150 (conservatively) children affected - a kindergarten teacher has no idea about autism or how to deal with these kids. I suggested they get informed (I am sending in a stack of books today) and gave her some resources. The last thing I did was write the teacher and inform her that my child has a hard enough life living with his autism label, the last thing he needs is to be labeled (falsely, cruelly, and in a derogatory manner) a liar. I need to move from this area. The school system's overall philosophy on autism is that it is a mental disorder - they have little to no tolerance for allergies (never mind that I have the medical tests to prove my point), sensory issues, and the fact that my child's immune system is so shot he ends up missing school every time another kid sniffles. The looks I get - the overall vibe at this place - it makes my skin crawl. How can this be??? How can teachers and other professionals who work with our children (they see the number of kids affected) not be actively trying to learn everything they can to help these kids be successful in school? I'm fed up.
Posted by: Jeanne | February 21, 2008 at 08:07 AM