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I feel so alone. I am so incredibly sad and feel like a failure.

Posted by on Feb. 5, 2014 at 1:03 PM
  • 10 Replies

I am a Mom of an 8 year old PDD NOS son.  My husband, myself, my 13 year old son, & my 8 year old son live in a town that has an approximate population of 109 people.  We live in a very rural area, it is 45 miles from the nearest town/stores/ammenities. We moved here in June of 2013.  Trying to 'fit in' here would be hard enough if our son were  without his  special needs , but, add the special needs element to our environment, and it makes for an  extremely difficult & ongoing experience. There is little to no awareness out here in regards to special needs, let alone - autism. Last summer I was at our local park while attending a bookmobile event for the kids (library on wheels).  Our regular ed. teacher and her teacher's aide were there.  I was standing alone when they called me over to talk. They engaged me in a conversation with them, regarding my son and his needs.  I told them that I had been homeschooling him, and that he wanted to attend a brick and mortar school as, he didn't enjoy homeschool (We are so isolated that he never got to play with other kids, thus, the reason he wanted to go to public school.)  Getting into a school at our last school district was a horrible experience so I was already traumatized before we moved here.  The teacher asked me, what his 'issues' are and I responded by telling them both that he is on the autism spectrum and that he  is very bright, especially in reading.  I also told them that he has a very difficult time with focusing and holding still and that this might be his most signifigant struggle, but, that he is such a good - loving boy who wants to do the right thing.  They both responded by saying that they didn't have time for another child in their classroom who has issues with misbehaving. They told me that they had a boy (they stated his full  name :- /  ) that caused them a lot of grief the year prior and that he spent most of the year on "The Wall" (it is a form of discipline that they use by sitting the child down outside during recess, and the child must sit facing the wall while all of the other kids play) and that my son would not be getting any special treatment for his misbehaviors.  I explained that he had an IEP and they responded by telling me that they didn't have any experience with autism (not true, they had a child with aspergers a few years back) and that I would be wise to keep my son in homeschool. 

Fast forward to September, when school was to begin.  I called the special ed dept. and explained to them the conversation that took place.  They apologized and said it shouldn't have taken place that way and that the conversation was not appropriate.  At first, I felt comforted by their reaction, but, my feelings of comfort didn't last very long.  When we started our IEP meetings, I could feel a sense of animosity from the spec. ed. teacher. She basically doesn't see autism in my son - At All. I should mention that he has an official diagnosis of PDD NOS.  She started taking a very condescending attitude toward my husband and myself. It felt awful.  We went through the evaluation and they found our son ineligible for autism services but, eligible for ADHD (my son has never been diagnosed with ADHD.)  When I asked about his sensory dysfunction the special ed teacher told me that sensory issues can stand alone.  I also talked about stimming, ie,  obsessively picking his nose, obsessively smelling the tops of his hands, and constant whistling.  She said that was related to his ADHD. I asked about his being a literal or rigid thinker and  his use of precocious language -things he says are like,  "I stand corrected" or " I will resume reading my book when our weekend break comes to an end."  or "Well, that was most certainly a entirely  inconvenient experience!"  According to the spec ed teacher, all of the above is very 'normal' and "All kids do that".  So now the teacher's think I have over exaggerated on the entire situation. I volunteer in certain events at school, and while I'm there, the teachers avoid me like the plague.  I have even gone so far as to look the teacher's aide in the eyes and say, "Hi, how are you doing?" and she gives me a look of disgust and walks past me without responding to my greeting.  It's awful.  The regular ed teacher is able to conjur up a smile and quickly get away from me.  The town is such a small place and there is a lot of gossip that takes place out here, and I've really provided a big ole' chunk of fat for them to chew on with trying to spread autism awareness.  Recently, I have become 'friends' ( I use that term loosley) with another mom out here. She knows everyone in town. She seemed so friendly at first, but, now that I have spilled my guts to her about our son and all that we've been through, all of the wonderful accomplishments we've seen from  him as a result of his former ABA therapies and his special diet (GF, Sugar Free, & Casein free) , but that ultimately, he still needs some supports. She looked at me like I was a 5 headed alien.  Speaking to her about how isolated I feel out here and how hard it is to be treated like an outcast while I am at the school, has backfired on me. I get a strong sense that she basically thinks I am an attention seeker and she can hardly tolerate conversation with me. Also, I feel like  other people in this town have since adopted her attitude. (I no longer speak of my son or any of his needs.)  I am a member (secretary) of the PTO out here ( only 4 or 5 members) and yesterday was our meeting for the month of February.  There was a new mom that attended the meeting.  This mother has a daughter with special needs.  I was introduced to her and she could barely even look at me or acknowledge anything that I said.  She kept her conversation exclusive with the other members and wouldn't engage with me. I sensed a certain resentment from the women in the room as if to say, "you are only seeking attention - you're son doesn't have anything 'wrong' with him- and this woman's little girl has legitimate struggles." They discussed field trips and that there could be accomidations made for her daughter to ride in the car with her mom since she was afraid to ride the bus.  There were a few other mentions made of her special needs and how she deserved to have her needs met. All of this was perfectly fine, except I had a feeling of  - why can't they accept my son? They look at him like he's just a naughty boy. BTW: my son is a STICKLER for rules.  He has a heart of gold and just wants to do good things. And let me back up a bit and say, that overall, he is doing well in school, he comes home a happy boy.  THIS IS WONDERFUL!  But, I feel like there is a stigma attached to me now as a parent and noone takes me seriously and I do feel like that resentment from others does spill over to my son sometimes.  The other day I went to pick my son up from school it was earlier than usual because we had an appointment in town.  When I got there, the substitute teacher who is at the school almost everyday, just helping out, walked up to me with my son. My son was expressing to me that he  didn't want to leave early & he wanted to stay through the end of the day. When I told him that he had to leave early, he melted down (crying), &  the sub teacher looked at me and said, right in front of my son, " See mom, he IS normal and he just wants to be with normal kids."  How does one respond to that?   I just went on to another subject and then quickly left the school.  Previous to this incident, this same substitute teacher said  to me (we weren't at school when this conversation took place.) "I think that autism has become an overused label that is given to kids who's parents don't know how to discipline."  OUCH! I calmly told her that I didn't agree with what she said. I explained that Autism is a broad & complex spectrum and that no two children are alike. I said, " Let me put it to you this way, If you've met ONE autistic person, then you've met ONE autistic person. No - two are going to be exactly alike, but, you may see a common thread of characteristics that run through all of them. " She just stared at me for a few seconds and the conversation ended.

I feel lost out here and there is no leaving this place for quite sometime (we purchased a home out here, which by the way I LOVE my house and the area is gorgeous - which is my saving grace.)  My husband doesn't want to leave either.  He thinks that I just need to 'buck-up' and face this.  I am trying to but, I question myself constantly. Am I overreacting?? Does my son really have Autism,  Or am I just delusional???  I am feeling so confused. I feel like I've made a HUGE mistake trying to spread autism awareness out here. I am feeling like I wish that there was a rewind button and I could just erase the conversation I had with my 'friend'. I feel like such an idiot.

**sigh** 

Can anyone relate?

by on Feb. 5, 2014 at 1:03 PM
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Replies (1-10):
hockeyfans30
by Member on Feb. 5, 2014 at 1:26 PM

Oh, my heart is breaking for you!!!!  :-(  That has to be soooo hard to deal with!!!  I wish I could give you a real hug right now!  I have experienced some of the same things, such as last year, my son's teacher was HORRIBLE!  She truly believed he was just a bad kid and that he was doing everything on purpose to annoy her or something!  She pretty much accused me of being a bad parent and acted like I was a moron!  It was before his ASD dX, but we were on the waiting list for the testing at that time.  He did have an ADHD, sensory processing disorder and anxiety dx already though.  She still just really thought he was an attention seeking brat.  it SUCKED!!!  It made me question myself as a parent!  It made me question my son!  It made me question everything!  I nearly pulled him out of school to do online schooling, but he struggles so much with social skills, I knew I had to keep him in a public school.  :-(  So, fortunately for me, his teacher this year is a complete 180!!!  She is AMAZING!!  She totally gets my son and has worked really hard with him to help him overcome his obstacles!  He is thriving this year!!  She has made so many accomdations for him, even before he officially got on an IEP.  Everyone loves my son!  Except for his teacher last year.  I wish I had some advice for you, I really do!  Will he have a different teacher next year?  It stinks that you aren't closer to resources!  :-(  It is so hard when people don't understand Autism!  I wonder if you could print some of the posts from this group and show people?  That there are hundreds of other kids out there who face the same struggles?  Hundreds of parents out there who are dealing with teachers who think they are full of crap!  They have NO IDEA how hard it is to always have to defend  your children for doing things they honestly cannot help!!  I dont' know, but I will think on it some and if I think of anything else, I will try to post.  In the meantime, know you are not alone and we are here for you!!! 

Bobcatridge
by Carol on Feb. 5, 2014 at 1:56 PM

Oh boy, can I relate.  I am in no way as rural as you but we are rural enough that I can appreciate the issues.  We chose not to send DD to the nearest town's public school because of the reports about the schools.  Instead we chose to send our daughter to a private school - a 40 minute drive away in another town.  My husband works in that town so he drops her off in the morning.  I pick her up.  We tried a carpool for awhile but my daughter really needs the time with me to recover/meltdown from the school experience.  The parents at this school have barely anything to do with me.  They might say hi but will avert their eyes and disappear as quickly as possible.  The teachers are better but now even that is messed up.  My DD has aspergers, generalized anxiety disorder, and major depressive disorder.  I use to think during the last two years if she moved towards depression that I could give a heads up to the teachers.  My DD was severely traumatized in first grade by the principal (now middle school director) who thought that way to handle special needs kids was to punish them constantly and severely and then their special needs would go away.  What this principal did could fill a book and it still makes me angry and frustrated.  Recently the middle school director called my daughter into her office and my DD went into a panic attack/meltdown/etc (first one since first grade).  I think it is something like post-traumatic stress syndrone.  This middle school director overreacted and tried to get my DD expelled.  Fortunately, we managed to avoid that but in the process the middle school director told all the teachers.  So now the teachers are acting strange and I am afraid to talk to any of them because I might things worse.  It is a mess and I feel truly alone.  So I can truly understand your loneliness. 

I am glad your sone likes school.  I hope that continues for him.  Anyway, HUGS just because you need some.

mypbandj
by Jen on Feb. 5, 2014 at 8:37 PM
1 mom liked this

I am SO sorry. People in small towns can be closed minded and mean. I don't live in a rural town myself but I am in Kansas and there are small towns all over the place and I do work in them. We were holding a playgroup in one town and decided to invite another small neighboring town to come. They did but then all the moms for the town we were in stopped coming. My boss said it was because they didn't want their kids playing with the kids from the other town. I was like WHAAAA???? 

confused

I didn't believe her. I told her that sometimes moms just move on because their kids are older, etc. My boss made us segregate the playgroups and have one JUST for the townspeople. So we did. And guess what?? ALL those moms came back!! I could NOT believe it. We live in 2014 and people still act like this???

frustrated

I grew up in Washington DC and so I'm used to diversity and all that good stuff. When I tell that story to other people who are from this area, all they can say is YEP, that's how people are!! 

My dh wanted to move to smaller town but many people warned me not to. They said that my kids were too old and that they'd never be accepted. Isn't that CRAZY??

It sounds like you made 'friends' with the town gossip and now everyone has been talking about your family and made up their minds about who you are and how your parent. Frankly, it disgusts me. I'm SO sorry. You could pull your son out of school and homeschool but that isn't going to help. I hate to say this but can you just move? It shouldn't have to be like this, it really shouldn't. My heart is breaking for you right now. 

shell3m
by on Feb. 5, 2014 at 8:50 PM
1 mom liked this
Oh hell no!! Eff them people!! Stand with your head held high and keep fighting for your son. I actually had a whole school system against me more than once and I kept doing what was best for my son. Now the school and bus depot know better than to mess with me. I would have told that woman....well not in my son thank you very much....if you hold your own they will get used to you after awhile and move on. You are just the new thing to gossip about for now. You are a good mom..good wife...a good person...DO NOT let others' small mind get to you. Remember walk with your head up with a smile on your face and let your kindness shine through. :)
JTMOM422
by Platinum Member on Feb. 5, 2014 at 8:52 PM
1 mom liked this

Oh momma. Small towns can be a blessing and a curse at the same time. I am glad to hear that your son comes home happy from school. Just think of all the good things that have come out of his therapies that others don't see the autism as you see it. I think one of the problems is that when people think of autism they think of Rain Man. They think all autistic people should behave and act like him. Or they think they should be flapping there arms and talking to themseves. They don't understand and that makes them unaccepting of it. I wish it could get better but if you aren't willing to move I am going to have to agree with your hubby and you will just have to accept the way things are unfortunately.

Jenibob
by Bronze Member on Feb. 5, 2014 at 9:02 PM

Hang in there.  As long as your son is doing well, happy, healthy, it's all good.  I'd quit trying to educate those that show no interest.  You've tried and they don't want to hear it.  Too bad for them, they're missing an opportunity to interact with a wonderful mom who can be a valuable resource to them.  Their loss.  It's great you love your home and area.

darbyakeep45
by Darby on Feb. 6, 2014 at 6:40 AM

Big hugs mama!  I'm so sorry things are rough right now!

sourpatchmom098
by Member on Feb. 6, 2014 at 8:11 AM

That is terriblle! While i havent gone torugh that extent of ignorance from others ive had a taste of it before. The first prek my daughter went to (before sge was diagnosed but received eary intervention). The prek teachers tried to work with her to their abilities. I think they were more tolerant because its a small town that my family lives in so everyone knew my family and me as an extension. However they didnt know how to handle lelia at all in terms of her behavior. I remember at one point her teacher wrote a letter for me to take to lelias doctor stating her behavior issues and that "she had never had so many problems with any child in her career as a teacher", basically hinting that my child ws completely out of control. I have had responses like this from mny people over the last couple of years including a daycare teacher that she went to breifly( and i mean she hadnt even been there 1 whole mnth and they kicked her out!) I had told them off her autism (PDD-NOS as well) and all of her behavior issues and evrything. Her teacher had been at this daycare for over 25 years, and apparently had no experience with autism whatsoever. this was especially surprizing to me because i work at a fairly large hospital and it was the hospitals daycare that provdes for over 150 children. Everything i explained to them about her they didnt really listen to, and when she couldnt meet with their required expectations, instead of trying to meet her on her level and work with her, they kicked her out

Macphee
by Silver Member on Feb. 6, 2014 at 9:43 AM
1 mom liked this
I live in a small community outside of town of about 150 families. As one mom mentioned, blessing and curse. I have had parents who stared at my kid. He is 7 and also PDD Nos. The dads especially don't know what to make of him. I didn't pay attention to them, never offered information about my son. Unfortunately autism has such a stigma attached to it. I kept socializing, go to church and what not. Rural communities are not called minded, different to anybody is just scary or strange. After months of hanging out, these same families saw good and bad behaviors from my son. They figured out that he wasn't different, but they got to know him first. They saw him have a tantrum and told me to spank him. I redirected him and spoke with him, he snapped put of it. They loved that he never tattled, he always smiled and told jokes. They thought that it as cool that he could climb so well. Then later they asked questions, I answered and a lot of them became more open minded. Rural communities are great because of the warmth. I know you're frustrated and feel alone, but yes your instincts are right. Maybe you need friends where you discuss topics that you're interested in.
I get parents who avoid me at my NT karate dojo. One told me get my kid out of there because he was screaming. Another parent who knows me somewhat spoke up for my son. Ignore, but give them a chance to get to know you and your son.

My husband comes from a small town in NC. He still hasn't used the word autism with his family. But they know our son is quirky, and they call him the brain. Hugs hugs and more hugs.

I sympathize with you. I felt isolated for a long time too, and that sense of loneliness transferred to my son. Keep trying, you are such an awesome mom.
johnns
by on Feb. 6, 2014 at 10:10 AM
1 mom liked this
I'm so sorry your feeling so left out. While its great your son enjoys school- I'm sorry your not having any luck with making new friends. Mama's need pals too! I would like to think you still might have a chance getting to know the other new mommy. Lord knows what them other broads have told her. But once she gets to know you, she will figure out that they were full of crap. Small towns are hard on newcomers- outsiders.
Do you think you need a 2nd opinion on your sons dx? The thing I don't get is when did teachers become doctors? How are they able to even give an opinion on such topics?
Maybe you could addresss the school board. Let them know how you've been treated?
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