Monday, September 19, 2011

A Rant On Behalf Of Autism Mommy -- "Why do they look at me like I have 3 heads?"

I'm. writing this note on behalf of my wife...  Here's the deal and HER rant of the day.

My wife is a stay at home mom. This is by choice. No, I dont make a ton of $$ and yes we could probably use a 2nd income, but with Kyles challenges we made the decision that running his schedule and his life is a full time job.

So, how come every time we begin a new school year people look at her like she has 3 heads when she explains that we don't need a school bus for Kyle, that she will drive him to and from each day?

"Is Kyle afraid of the bus?"

"No he's fine on the bus. Takes busses on school trips with no issues..."

"Well if you ever change your mind and work up the nerve to put him on the bus, that option is always open to you."  All this is said to her like she's a worry wart...

So why do we not put Kyle on the bus?  Well, ok, worrying plays into it a little...  Every year there's a few stories nationally about a non-verbal asd kid left on the bus for hours...or dropped off at the wrong stop..  So that plays a part in why she doesn't put him on the bus...

The other reasons?

 1) it gets her out of the house ad starts her day nice and early. If the bus was involved she fears that she'll get stuck in a rut of sleeping late and staying in all day...

2) Her driving Kyle means that she knows EVERYONE and they know her. And she can rely on daily interaction with his teacher or aide on how his day went, even for just 60 seconds... instead of relying on his "communication notebook."

I think that #2 reason scares teachers the most sometimes. You would think they would want an involved parent, especially for our ASD kids.  But sometimes I think they want to just be left alone.

Like today, his first day at his new school, the wife stayed up til 3am wiring a detailed note explaining all about Kyle, his meds, his likes, his dislikes, etc, etc, etc.   She does this at the beginning of every school year and sometimes even coming back from break.

Well wouldnt you know it, the teacher looked at her like she had 3 heads when she handed her the note (and 4 copies for the rest of the staff). "Wow that's very efficient."

She also got the "3 head" treatment when she mentioned that she'll be driving Kyle every day. My wife said to me afterwards "what is so strange about driving your kid to school?"

And she got the "3 head" treatment when she asked if she can accompany the class on some, not all, but some class trips. (They do life skills trips to supermarkets and restaurants twice a month.)

"I'll have to ask if that's ok. No one's ever asked to come with us before.."

My wife to me afterwards... "What is so weird about wanting to go on my kids school trips?  Dont they want involved parents?"

That's all I got. I don't know how to end this blog post but it's just frustrating.  And this is a good school!  

What do you all think?

23 comments:

  1. I to am a SAHM to my 4yr old (on the spectrum) and 2yr old sons. Running my oldest sons therapy, school, and after school social programs is a full time job. We to made the choice for me to be a SAHM. I to choose to drive my son to/from preschool each day. I get the "look" too. Most moms and families are trying to do is to "support" the staff and teacher while our kiddos are in school. I think the staff and teachers sometimes run into parents that well maybe go overboard on their attempt to support the staff and teachers. Leaving the teachers and staff a bit weary of us parents who only want to be helpful and supportive.

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  2. At his age and being non-verbal, I don't see anything wrong with it. He is HER child after all. He does not belong to them even for the time that he is in their care. Now as he gets older...towards middle and high-school the idea is to try to move them towards some level of independence. It's all relative depending on the child...each and every one is different. You and your wife know him and his needs best. Always follow your instincts!

    Hooray for you being a daddy blogger!

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    1. Yea at my school program it seems like once you walk in the door your not the parent anymore!

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  3. I'm a "work outside the home too" Mom and I also sometimes take my lunch hour to eat with my child, drop by school when I can, send in treats often (for students and teachers) and LOVE to go on trips when possible. I ask to be notified by phone of any "out of the ordinary" activity that happens at school (fall, extremely bad day, running down the teacher with a bike(yes it happened!)because my non verbal child can't tell me and I may need to follow up on something. I like to meet his many school therapists ( they interact with my kid why shouldn't I get to know them?) Teachers and admin. often act like I am a MARTIAN!!! YES I am cautious with my children (all of them) but I'm not a freak! I love them and want to share in their lives. I esp think this is needed in the case of a non verbal kid. I don't know why they act like it is SO strange? I get comments about "cutting the apron strings" because I'm cautious about who I allow into my severely autistic child's life? He's fiercely Independent and is allowed free reign in areas he is familiar with (friends homes, our church, etc) so I'm crazy because I won't let him go un- escorted into a middle school hall bathroom? I don't think so! Okay my Mommy rant is over too! But not my involvement in my kids education...whether they like it OR NOT!

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  4. I found it rather irritating that the teachers in my son's old school thought that I would be glad to be rid of him for some of the time. They put it nicer, but that was the main point. God forbid that we may actually understand and love our children and want the world to see them as we do. No your wife is not crazy. In fact, with all that you guys have on your plate, I think you are quite sane.

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    1. You know i read this blogg and saw your post and i agree 100% God gave us these children and kyles mom is a super mom like us, and if people would get that they would understand we love our kids and the ones that are "Special" makes us work harder the schools can get bent my wife and i gave them there chance now My wife stays home puts on her cape and home schools them and we get more out of them than the schools do.We didn't have kids to "get time away from them"

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  5. Keep up the hard work!!! If you keep doing what you are doing, you will eventually come to a teacher that appreciates all the hard work!!!!! You are doinga great job keeping everyone informed and advocating for you kid. keep it up!!

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  6. I'm a teacher- and I tell my parents- COME ANYTIME! I would love for them to come on field trips with us (we take them to the high school for musicals, to the school atrium for performances, assembly, etc.)! I think it is better when parents are involved, and communicate daily with the teacher! You (mom & dad) are doing the right thing! If you want to drive him to school- I don't see who would see a problem with that?!

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  7. Hi! I'm a little shocked to read about the incidents of non verbal people being dropped off at the wrong bus stop e.t.c . I don't know if the bus that collects and drops off the children at your son's school, is specifically a special needs bus or an ordinary one, but even if it wasn't staffed by a driver and staff trained to help special needs passengers I would have thought that the staff would be made aware of the importance of safely transporting your child to school and to your home or the pick-up location. Anyway, there's nothing wrong with or strange about your son's mother choosing to drive him to and from school, the reaction of the teacher seems a bit stupid but it's more of a refelction on how a lot of parents these days behave than anything else.

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  8. Many of the reasons I just took my high-functioning ASD son out of public school. The last of respect or even recognition of the "parent wisdom" we have is astounding. And by fifth grade, it was damaging. Good for you both! :)

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  9. I work in a special needs classroom and we love it when the parents are involved. Some drive their kids some don't. Some parents come on field trips and some we never see. Not sure why they are reacting this way.

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  10. my mom stared driving me to an from school when she found out i was being teasd an stuff bad on the bus i couldnt tell her what was going on .but i rember kids tryig to hit me trip me call me names an so on .i do get looks sometimes like i have 2 heass lol i use to say that .when i notice someone starting lol olr i be like what are u staring at is my brain sticking out of my head or something lol i was in my earlky 20s an could express myself stared to lol

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    1. If my mom started driving me to school after I was being teased, that would make me feel safe and protected, and those things feel good to me :-)

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    2. oh ya i was happy expect the day didnt want to go cuse the teasiung .but i edvencly was put into a privet sped school an was so happy to not be mainstreamd anymore

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  11. Just to say it sounds like the school isn't a good fit. We made a really important decision this year for our son and when we toured placements (he is going into iddle school) of there were any mention of things like. 'Well now that they are getting older we will no longer expect a communication book or mom in the classroom as much" yada yada...we would not choose that program. Yes independence is important but how can we carry over things from school that need to be cone at home without communication. This year we start a new school and we were assured that there is a lot of parental involvement and we are encouraged to be involved, sign upo for the PTA come to special events etc. I will update after the first month how it is going. BUT imo a parent should never be looked at as having 3 heads from the school. If the school doesnt realize parents know their child best than I wouldn't want my kid there. Steph

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    1. sorry about the typos I was typing too fast lol

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  12. Along with the above reasons you gave, the time ON the bus is a big issue why we haven't utilized the bus system. While some kids only spend 20-30 minutes on the bus, our son would probably spend anywhere from 2-3 hours on the bus every day going to and from school. That's on top of the 3 hours of preschool. Add in therapies and that's a huge part of his day that he could either be in therapy or actually playing and having fun. Buses just aren't always a good idea, plain and simple.

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    1. I forgot about that one, time spent on the bus. Wow, that is a long bus ride for your child. My son would be on for about 45 minutes to an hour. We only live 10 minutes from the school.
      You would think the districts would have our kids too and from school a lot quicker considering their issues.

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  13. I just saw this now. I feel like i wrote this. I am a SAHM too. And yes, just like you, we could use the extra income too. But, it works out.
    For a short time after Jace started school, I felt guilty for not putting him on the bus. I was told it would help with his independence and give me ore time to myself. I finally got over the guilt trip. I like taking him to school for the same reason your wife does. I want the interaction with the staff. I want to know them, I want them to know me. Plus, my son is non verbal also, and, I'm sorry, I trust very few people with him and have heard the horror bus stories too.
    Jace is my only child, I can and will drive him to and from school. I enjoy it. He enjoys it, it is all that matters. :)

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  14. I'm in the same boat as your wife. I had to quit working myself because like Kylie my 4 yr old daughter is nonverbal and only attends school for 4 hrs a day. I would love to have a job right now esp with the way the economy is right now. But there is basically nothing I can do right now not only because she only goes to school but a few hours, but these children really do have severe insomnia problems. I tried really hard to work for the first three years of her life and it was absolutely insane!!! It was a night fight between me and my husband on whose turn it was to stay up with her because she would stay up till 3 or 4 in the am every night.
    I also agree with your wife about driving my child to school. Not only does it help to keep a set routine so that my daughter will do better at school, but it also gets me dressed and our of bed. Once I drop her off at school I try to use my time alone running on my treadmill so as to help me keep my sanity!!! That's my way of making myself stay out of that poor pitiful me mood, and make myself get up and face the world and not give up hope.

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  15. My son is also on the spectrum but hasn't started school yet.. he's only 2... however once he starts Pre-K next year he does have the option to take the bus, but I will be taking him and picking him up also, and probably will for future grades.from what I've heard and from what my son's early intervention therapists and teachers have been telling me, the best thing to do when you're a special needs parent is to make yourself known to as many people at the school as you can and try to be involved as much as you can because it will benefit in the long run as far as making sure he's getting his needs met! so I applaud your wife!

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  16. Works for me. I am the grandmother and used to drive to and pick up. It became too much for me so we use the bus. Fortunately, I am able to be involved in other ways and get to meet the parents, etc. that way.

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  17. I am sharing this on my facebook wall!! I too get the third head looks, for the same and similar reasons, all the time; and like your wife I have never understood it!!

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