In our house, Autism is our first language...

And that's why I don't feel bad.

2017-05-22T22:16:00.002-04:00

In May 1995, I met my husband. Didn't like him at first. He was kind of a rude asshole...a show off. But he was beautiful. Slowly, but surely, we got to know each other and built up a friendship. Didn't think it would progress more than that. Shockingly, it did. Didn't think it was last too long, but it did. When we got married, neither side of the family thought it was a good idea. Not sure of the fact that I was pregnant had anything to do with that, but I think because Jimmy and I are both ferociously stubborn, it's been working. My husband is kind. He is hardworking, and a great father. He has built up my confidence, and has assisted me in creating three beautiful creatures to pass on kindness, love, and sarcasm. He has softened me over the years. I still have some rough spots that need attention, but it's only been 21 years. I've seen this man conquer cancer, and then return to a job that is more physically demanding than he should be doing, because he wanted to show the kids that he's not a wimp. He has dealt with a tremendous amount of pain and sickness, and even with a large amount of sick time, he doesn't take it. Again, he wants to be a great role model for our kids and to show that he would do anything to keep a roof over their heads, and food on the table. Our rent and bills are always up to date, even if we squeak by a bit. He supports us all with his kind words, cheers us up when we're down, and (figuratively) kicks us in our asses when necessary. He is a great dad, regardless of the fact that he is non traditional. I think our family is a mix of Married With Children, Roseanne, and Malcolm in the Middle with a dash of Bob's Burgers. Nothing wrong with that. In fact, I'm jealous of the fact that my babies have such a wonderful male role model in their lives. I didn't have that. I never will. I was terrified to marry, because I didn't want to suffer like my mother did, or have children suffer like we did. I didn't know that not all men were that bad. I'm glad I was wrong. People have judged us. People have talked very poorly about us. It used to bother me, but I hear my kids laughing at something so ridiculous that their Dad says, just to cheer us up when he's in pain, and I see just how blessed I am. My boys are wonderfully handsome young men, and my girl has her father's sharp wit to cut anyone in two.

I'd rather be blunt than sneaky

2015-03-28T08:27:00.000-04:00

My husband Jim and I get criticized by 'family' members for being rather blunt with our children. We both have a warped sense of humor, and we have passed it down to all three kids; the neurotypical as well as the ones on the spectrum. Contrary to popular belief, those on the spectrum are capable of understanding sarcasm and humor. I think our bluntness is partially due to our love for all heavy metal music. Let's face it; heavy metal is brutal and in your face...a music not for pansies. If we like our music like this, why not live our lives that way as well? Metalheads know this well \m/.

Most family functions we are forced to attend are riddled with disapproving looks from people when our children come out with their brand of humor, that is probably not appropriate on certain occasions. But, if we are in the safety of our own home, I would prefer that they feel comfortable enough to be themselves...whether it's appropriate or not! As long as they know to be appropriate outside the home, that's fine. For the most part, they know there's a time and place for certain things.

It got me thinking about my own childhood. My father was a sneaky son of a bitch. He was always pulling crap on us and proud of himself when he was successful at fooling his kids. It was a sick thing he did.

Back in the day when you had to go to a video store to rent movies to watch at home (perish the thought now), my father took advantage of a 5 movies for 5 days for $5. He came home with a movie called "Not My Kid". Immediately, I knew what kind of movie this was. It was a TV movie about teens and the dangers of drug addiction. I expressed this to my father, who lied right to my face and said it was a comedy film. I kept arguing, but he ignored me. At the time, I did not see the stupid smirk on his face. He made us watch this movie, which was just so cheesy. It's not that it was a bad movie...I just didn't like being lied to. Later on, he admitted that he rented it to teach us about drugs. Why not just be honest in the first place?

Years later, I had to pick a Confirmation sponsor. My parents were not social people, so we did not have close friends for me to choose from. I asked to reach out to my Godparents in hopes they would say yes. I was told that they refused. Instead, my father lied again and said that some random guy he happened to have three or four conversations with at church offered to be my sponsor. He gave me this guy's phone number at work and sat with me while I called this guy up to ask him to be my sponsor. Thankfully, he said yes, but it was awkward for me. Many years later, he actually admitted that he just said it so I would call this guy. What the f&ck??????

And many years later than that, my wedding. Ah...yes. I asked over and over for names and addresses for my wedding only to be told that he would personally address the invitations and add a note or two in addition. I cringed, but I obliged. Needless to say, we had no one on my side of the church during my wedding.

So yeah...we're blunt and honest with our kids. So what? I'd rather be open and honest than sneaky and conniving and have them hate me.

I've been slowly losing my faith

2015-03-21T11:24:00.001-04:00

Jesse is the only one out of the three to go to Sunday School to prepare for his Confirmation. He hates it. I mean HATES it!

I can't blame him. We live in a very small town. And I've always believed (especially since we moved here) small towns breed small minds. I know that's judgmental, but if you only knew...you would totally understand. There are a few bright spots, but mainly, this place is just terrible for people like us. People who have a weird, sarcastic sense of humor and don't fall all over ourselves because of a silly little thing like an autism diagnosis. Maybe that's the issue.

My husband is not a religious man, and that's okay. I still love him. But I also love God and I really do value my religious beliefs. I was hoping that I could pass that on down to my kids. I had very good intentions...many moons ago.

The former director of the religious classes made anyone who missed church feel like they should just end it all and burn in hell. She had the kids memorize prayers even I didn't know. And if they didn't memorize them, they would not advance to the next grade up. WTF? I always felt that prayer should come from the heart, not mimicked like some sort of Nazi general. (Yeah, I know, but again, you don't know what we've been through here). When Kelly was set to make his Sacrament of Reconciliation or Communion (not sure which) she had the entire class come to the altar to be presented to the congregation. I feared how Kelly would be in a chaotic type of situation, but all in all, he did better than I expected. Sadly, in a newsletter shortly after, a lot of people were 'shocked and appalled' by what they saw and how the children were disrespectful. Of COURSE, I took this personally and felt she was attacking my kid, but honestly, there were others who were very rude and obnoxious. I felt she should have confronted those parents individually rather than being passive aggressive. See what I mean about small towns and small minds?

Kelly and Harley do not attend church anymore because they were exhausted with the restrictions that were put upon them by this lady. I don't blame them. But it wasn't just this lady. It's the entire congregation.

Because I know how my kids can be, I feel the safest place for all of us (as far as distractions) is for us to be upstairs in the balcony. A few times, we would be late and there would be people in our normal seats, so we made adjustments. One time in particular, an entire family saw we were there, and without words, just got up and moved downstairs as far away from us as possible. I held back tears. I didn't know if it was because they didn't want to deal with minor incidents with my autistic boys asking question after question with voices well above a whisper, or because she just didn't like us personally. The funniest thing was there was another lady with her son that came about 25 minutes late (no I'm not judging, it's just a fact). We were still in the balcony, but in different seats. She approached us and said, "You're in our seats." I looked over at the other empty seats and as confused and kind of giggled. She says, "I'm not kidding." WOW! So, we uprooted, because I didn't want to fight in God's house. Sadly, there wasn't enough room in that open seat for all four of us, so Kelly sat on the floor. The lady says, "You can sit here," to which he responded, "I don't want to sit in your seat. I'm not kidding." LOVED IT!!!!

I know I'm all over the place today, but please bear with me. I have too many thoughts in my head to put down, which is why I'm not always blogging or even writing in my journal anymore.

I'm sure you're wondering why I just don't switch parishes. Well, according to the Catholic church, I'm not allowed. I can't take my own time, spend my own gas money and travel 10 minutes to a more open and understanding church. No. It's all about supporting our local churches. So, until Jesse makes his Confirmation, we are stuck.

There are many more stories I can tell, but like I said, I'm all over the place. My mind goes in a million directions trying to keep my wits about me. I can only try each week to be open to my congregation, but it is short lived by little things, like dirty looks and interruptions of prayers to chit chat. Yeah...that really happened.

God Bless :)

The system failed my son

2015-02-07T10:49:00.000-05:00

Kelly was diagnosed with Asperger's at the age of 4. Although I was stunned by this, I was not entirely surprised that he was not the same as other kids. It's sad, though, how we had to find out this information.

The short version of our story will probably end up long. But the gist of it is, Kelly was a slight behavior concern in pre-K. The teacher felt he needed to be on Ritalin, but also felt that there was abuse in the home. There was a witch hunt where I was pretty much convicted and sentenced to an invasion of my home to make sure I was parenting correctly. I was told that there was a possibility that my children could be taken away if the house was dirty, there was not a fully stocked fridge/pantry, etc. These were things that we did anyway, but to have someone invade your home...especially with a newborn that keeps you up most of the night and having to be wide awake for the occasional uninvited guest was stressful. I don't know how we got through that time.

Anyway, tests, tests, and more tests conclude: Asperger's Syndrome.

The school makes accommodations, but only to alleviate any responsibility of the teachers. Rather than force my son to write out his answers, or notes, or essays, they give him a personal secretary, or 'Scribe' ("that means, they write it out for him" some teacher told me as if I were an idiot) to do ALL the writing for him. Some teaching, eh?

After a hellish 8th grade year, we insisted he be moved to a program that would actually FOLLOW his IEP. What a f*cking concept! Teacher's doing their JOBS!!!!!!

So he goes to BOCES and does amazing! He has friends, his teachers like him a lot. He really grew into a wonderful young man. Not that he wasn't wonderful, but...you get the idea.

Here's where the system failed.

He has taken a NYS Regents exam twice, only to fail, and why? Guess....

Because he was never given the task of writing his own essays!

So, we have a third try, or he cannot get his diploma.

Where was I in all this? I tried and tried to get him to write things out on his own. But when he comes home at 3:30 and making him write things out doesn't get done until close to 10pm, it's difficult. I tried, but I had no support from his school.

So I guess, I failed him, too.

Time to start cramming. He's so close, and wants to give up, but I won't let him. I can't let him down again.

But F*ck You to L********* M**** Central School for taking the easy way out. If he had to repeat a grade, so be it. I would have understood.

Family in blood only.

2015-02-07T10:36:00.001-05:00

I never grew up with an extended family. This was all thanks to my father. He was such an asshole to everyone that they pretty much gave up on him. It always bothered me. We used to get mixed messages from him. There were times when he spoke so lovingly about his siblings and parents. And then, everyone was 'out to get him'. I mean EVERYONE. Especially his own kids.

I remember when my Confirmation was approaching. I asked if he knew my Godparents' address. A few weeks went by and I was told they said "no" to my request that they would be my Confirmation Sponsors. My father pushed me to ask a complete stranger that he had just met to be my Sponsor. Sadly, Joe was killed in a drunk driving accident shortly after. I always felt horrible about how I resented having to ask him because I really did not know him. When he died, I remember feeling so guilty. I felt that my bad thoughts and feelings caused this to happen...somehow. Of course I felt this way. Anything bad that happened was always my fault. Just ask dear old Dad.

In June 1990, I was pretty much forced to telephone all of his and my mother's siblings to invite them to my graduation. I didn't want to, at first. They were just as much strangers as Joe was. But I did it in hopes of maybe reconnecting. I feared if I went in with a better attitude than I did with Joe, everything would be okay. After all, my poor treatment and attitude were why Joe was in that car in the first place.

They all said 'No'. It broke me. I resented my father even more than I already did.

At the same time, I remembered that my cousins were all about the same age as me, and were also probably graduating at the same time. After a long time of pouting in my room, listening to my Megadeth cassette, I felt an overwhelming feeling of empathy. First time ever, I think.

My father had some choice words about this. He would not let it go. I lost my empathy.

You see, even if you have the best intentions in your heart, some people make it so difficult for you to speak up or act upon it for fear of ridicule, and in my case, verbal and emotional abuse. Even physical, should it be necessary.

Who am I kidding? It was always necessary

Fast forward about 5/6 years. My fiancé and I are planning our wedding. Jimmy knew about my family nonsense, and still wanted to marry me...what a shock!

My mother-in-law asked for addresses from my father for invitations. I trusted that he gave them to her. In all honesty, I didn't really do much for my wedding. We were rushing to get married before my belly popped out :) Between working three jobs, and planning our wedding, I left the invites to my future mother-in-law.

A few weeks go by and MIL tells me that my father has not given her any addresses, and that she was willing to pay the postage for all of them...which she made herself, thankfully. He asked that instead, she give her the invitations, and he himself would get them sent, because he had a few personal notes he wanted to add. She obliged.

No one responded.

I was f*cking furious over this.

In anger, I wrote a very hateful letter to my uncle. In return, he and my cousin responded, and rightfully so. I let them have the last word because if I wrote another letter, it would be even worse.

After my son was born, I really started taking a long, hard look at how thing really were. Whenever I held that little baby boy in my arms and looked into his eyes, I couldn't imagine passing on certain rituals; the ridicule, the abuse, the blame on everyone around them...even my own child. I refused. I made the decision that it ended that day!

The letter I sent my uncle hung over my head, though. I had read his response, and my cousins. I read them over and over again. The more I read, the more I reflected on the crap I was told to me by someone who claimed they loved me. I ended up tossing the letters out, because holding them meant I would just feel worse. I figured someday, I would put myself out there and apologize to my uncle for hurting him. I didn't mean to...really.

I always believed there would be enough time. It was a new experience for me to actually own up to the times I was wrong. In addition, I was absolutely shy and unsure of myself. Besides, I was so horribly mean.

When my uncle passed, I really wanted to go to his funeral and see the family to apologize. I knew that face to face, I could do it. And with Jimmy by my side, I had someone to lean on. Someone who believed in me. Someone who could absolutely vouch for me.

The obituary never named my father as a brother. Everyone else was listed but him. I found that hilarious! I found out later it was unintentional, but still...bravo! I went to sign the online guest book, and saw a rather peculiar message that was directed at MY UNNAMED FATHER being sent condolences from some random people in New Jersey......WHAT??????

I immediately contacted the proper people running the page and said that the person from NJ was a family member trying to cause the family more grief, and if they wanted to speak to me, to call me, and left my number. They immediately emailed me back and thanked me for keeping an eye out for the family, took the posting down and I never heard anything else about it. After that, one of my brothers left a message on my machine explaining that our father wanted all of us to attend the funeral as a family. That was when I decided not to go, because I knew that if my father pulled some online stunt to hurt the family, he had other plans to make the family feel uncomfortable and only hurt them more. Against my husband's suggestion, I did not attend the funeral.

At that time, MySpace was popular and I decided to reach out the only way I was comfortable. I searched for my cousin that I hurt to apologize and give my condolences. She surprisingly accepted my friend request and we started emailing back and forth. It was nice. We made a 'date' to my family (husband and kids) to meet with her and her family. I was quite excited.

The very first thing that came out of all of their mouths was "We don't have any money to give." WTF? That's not what this was about. This was about family, not desperate times or a need to get dug out of a hole we put ourselves in. However, I understood, since that was the only way my father contacted any of his family was when he dug himself so deep and exhausted all of his financial resources, that rather than going out and getting a job, he became a beggar. Or he made Mom beg.

I thought things were going well, until dear old dad decided to harass one of my cousins at her place of business on Father's Day. She knew that he did it on purpose, and quite frankly, I know that as well. He will always deny this, but even when he 'accidentally' hurts someone's feelings, he does it in such a way, that you just know he's fully aware.

I was then pretty much dismissed by my extended family that I just started to get to know. I was hurt, but I understood. It still hurts.

Then, suddenly, out of the blue, I go to the store to get a few things to bring home, and I hear someone yelling for me. I usually don't respond, thinking they were calling another Jennifer. But they weren't. It was me. And it was one of my cousins. Someone who dismissed me because of something that my father did to her sister. Someone who simply cannot be a friend to me because of my father. Nothing I personally did, and something that I did not condone, but something HE did...not me. But I was connected to him, so I became shit.

She runs up and hugs me like we're family. I had a million thoughts racing in my head. One thought was to just say, "F*CK YOU" and walk away. But that's not the person I have grown into. I may have been raised that way, but that's not me.

We had some polite conversation briefly, and I smiled and nodded when appropriate, but the entire time, I was just so resentful. I hated her and the rest of them for abandoning me. And not once did she ask how I handled my mother's passing.

We said our goodbyes, and I cried. I cried like a baby. But maybe it's for the best. If they see my father in me when they look into my eyes, that is their problem, not mine. I am not him. I am me. I discipline my kids with love. I support my kids on anything they need. I don't dismiss the special education needs because it would make the family 'look bad'. I make sure they get the services necessary to get them where they need in life. I embrace their humor. I enjoy my kids.

And the extended family can go f*ck themselves.

6.15.2013

2013-06-15T19:27:00.001-04:00

I'm not going to lie to you. I am a slacker. You can tell by the lack of upkeep on this blog. Sometimes, I get so caught up in my own nonsense I forget I have a place to vent a bit and maybe be of comfort to someone else in the world. Not that I've seen a lot of traffic here. My own fault, I know.

My latest vent is this: About two years ago, at the insistence of the school system, I applied for SSI benefits for my youngest boy who has PDD-NOS. I really saw not point, as we were not financially suffering at that time. We squeaked by and such. I honestly only applied to prove that we did not qualify.

Turns out, at the time, I was wrong.

My son was granted a certain amount of benefits to supplement our costs of his special care. It helped quite a bit, considering we were purchasing special foods just so he would eat. I mean, you have to understand that we ended up making two dinners per night because this child will not eat the same as anyone else.

So, we get these benefits for over a year. I am now told that they have overpaid me and they want over $2000 back immediately. I have no problem paying off my debts, and if it was not meant to be, so be it. I will be happy to pay the money back to SSI.

I am a little peeved, though. In the last few weeks, I have gone grocery shopping numerous times, scrimping, saving, couponing and really holding back on unnecessary items so I can make a $35/month payment back to SSI. In addition, I have medical bills piled up for myself and my husband because the insurance has increased our deductible to some outlandish amount that we just cannot afford. This is not what I'm peeved about.

Three weeks ago, my husband and I were standing behind a woman with a brand new Iphone, a HUGE diamond ring, expensive clothes, about $30 or more in dog food, and what does she pay with? An EBT card. Government money. Just today, my husband saw a guy counting $50 dollar bills, and pull out an EBT card.

What are we doing wrong that we cannot get any assistance for our son? I don't make a lot. My pay is $9.79/hour for a 35 hour week, and my husband only makes about $5 more per hour. We have three kids and live in subsidized housing where we pay the maximum rent due to our income. I see a lot of neighbors with brand new cars and food stamps, and we can't even get benefits for our son.

Honesty isn't always the best policy. This is what these circumstances have taught me.

I will continue to scrimp, save and coupon for my family. I will continue to not buy any necessary clothes, and if I do get sick, I will make sure to tough it out, because I cannot afford a $50 copay and the expense of medication.

Accommodations

2013-01-27T21:03:00.000-05:00

I read a bit ago about how parents of children on the autism spectrum usually take jobs that allow them to be flexible to accommodate their children's needs. I fully agree.

I'm not saying I'm better than anyone, because I know I am not. I'm aware of where I stand and what my place is. However, I have minimal college, and believe I'm quite skilled as far as office procedures and things of that nature.

Over the years - since 2004, when I finally returned to work after my two youngest were born - I went job searching. Not 'career searching'. I needed flexibility to work around not only my husband's schedule, but my children's needs. I began working nights at Walmart. Not my dream job. Who in their right mind says when I grow up, I wanna work at Walmart and get crapped on? No one.

But I did it. And I was good at my job. I showed up, did my work to the best of my ability, and sometimes above and beyond, punched out and went home. 7 hours a night, 5 days a week. I had a routine that all the kids could handle.

After awhile, management actually took a liking to me and offered me 40 hours a week. Instead of working 4-11, I'd be working 2-11. Couldn't happen. They said they'd work around my schedule. Still, wasn't happening. Didn't need that kind of stress. I'm not polite when confronted by angry customers. As a cashier, I can bite my tongue and call a supervisor to handle the rest. As that supervisor, there is no way I can keep my temper from erupting.

I tried going back to 'normal' 9-5 hours working for the county's labor department. It was a new position and they didn't know what to do with me. I was BORED! Most people would love to sit and get paid to do nothing. Not me. I liked being busy. The time flies and you feel accomplished. That lasted all of 2 months, especially after considering summer daycare costs.

Worked as a cashier again, but if I was scheduled for 8 hours a week, I was lucky. That 8 hour paycheck would have union fees/dues subtracted and barely paid my gas for the trip. I also found that if called to come on to work on a scheduled day off and I refused, my hours were shorted the following week, sort of as a 'punishment'.

Finally, I got a job at my kids' school! Sadly, it was in the cafeteria, but the hours were perfect! I could get them off to school and be out of work when they were dismissed. Snow days and such...no problem! Mama's here. My only issue was the staff I worked with. Oh, I couldn't stand it! Small towns breed small minds. The lack of acceptance of others who are different sickened me. I kept to myself, did my work, and went home. I was never invited to go bowling or out to a bar. Not that I'd go, but at least give me the chance to say 'no, but thank you anyway.'

I was at my wit's end and decided to attempt to make a change. I applied for the open Teacher's Assistant position, but was turned down because the other applicant had more experience. However, because they promoted a Teacher's Aide, it was perfect for me! And yes! I got it!

That enthusiasm was short-lived when I realized that I would always be looked at as the 'lunch lady' and not someone who was attempting to make an actual career choice - I wanted to teach. I needed help, guidance and encouragement. I got none of those from my superiors. Five short months after I began, I was given notice that due to budget cuts, my position was terminated as of the following June. This news was during my mother's stay in the hospital - she had a heart attack and hit her head as she fell. I heard the news about my job, but didn't give a damn. Luckily, I'm employed at a school that assists students with varying disabilities. This has helped me so much with my boys. It's a bit trying some days, but I'm back to planning what I originally planned...maybe get my degree and move forward. Sometimes, it works out after all.

Hey! Look what I did! I did good, Huh????

2013-01-27T20:56:00.001-05:00

Many years ago, I was introduced to a particular song that saved me from doing something so ridiculous and selfish. Because of that song, I am still here today. The lyrics to that song helped me understand that someone else felt as alone and betrayed as I did...and he made it through.

In 2004, I was honored to introduce myself and stumble over my words as I tried to thank the musician for everything. Being shy and unsure of myself, my words did not make it out of my mouth. Fortunately, I had posted on his forum, and he graciously responded. I still have a copy of that..

In recent years, I have lost a lot of respect for this person. Mind you, I am all about finding religion and trying to walk the path of righteousness, but with this person, it seems to be a tad pompous..

On a few occasions, I see Facebook posts that boast about a good deed he had done for someone. A lot of the 'sheep' respond with their praises, but I have to wonder...isn't doing the good deed praise enough? Doesn't the most Important being already know what you've done? Why are you boasting on Facebook, Twitter, or your own personal forums? What exactly are you trying to prove..

I feel, as functioning members of a civilized society and just plain being decent human beings, we should all pass along a bit of kindness and, if at all feasible, go above and beyond expectations to help each other out a little. Whether you are a Christian, Jew, Muslim, Atheist...help out your fellow man, people! We're all on this sinking ship together...may as well make the best of it, right?.

In some way, I hope to instill this sort of value in my children. I can see bits and pieces of it. I see the way they do little things for each other. I dropped off the boys at school and waited for them by the bus, because they were at each others' throats the entire morning. It was a hellish start to the day. While waiting at the bus, I saw my oldest son by the bus door looking for the youngest. He then motioned for him to get in front of him on line so they can sit together. I know this is a typical sibling thing, but it really meant more to me. I didn't mention it to either of them, and they didn't mention it either. .

I've also seen them all at one point do a kind deed for a stranger. They never once ran over to me to tell me about it. They just did it and it was done...end of story..

This is what it should be. You do what you're supposed to do to spread a bit of kindness for another person. Maybe let them ahead of you at the check out...maybe just smiling at them. It all helps..

Just don't let me see it on f*cking Facebook, okay???

Both a blessing, and a curse

2012-01-10T19:02:00.000-05:00

I want my children to be smart and speak eloquently. There is, however, a limit.

Jesse has discovered a program called Wordgirl, and some other program that escapes me. Every episode teaches kids at least one new word. Jesse watches as many as he can.

Then, he finds a way to place his new words into everyday conversation to see how we react. If we don't, he explains that he used a new word and it means such and such, and aren't we proud of him?

Tonight, he used at least three new words and bragged about it.

He tells me that his one Teacher's Aide told him that he 'swallowed a dictionary' because he's using new words. I thought it was silly. Then, I read what his teacher wrote in his notebook - "Jesse is being very silly today, and even though we are proud of him for learning new words, he is driving us CRAZY!"

I can't argue. I agree, but what can I do? I got my wish. He's learning and maturing. And for right now, he's driving us all insane.

When does it all even out?

If I had the choice....

2011-11-24T08:28:00.000-05:00

I heard a heartbreaking story from a father of a disabled son. 30 plus years ago, when his baby boy was born, the nurses called him aside. His son was born with no hand. They showed him a baby whose mother abandoned him and offered to switch the babies, and send the 'bad' one away.

He said no. That baby boy (the bad one) is mine.

Can you imagine?

There have been many days/nights where I thought, "Why me, God?" I thought I was being punished for something I did years ago. Having children with issues is not an easy task for anyone. For a very long time, I honestly thought it was a punishment.

How wrong I am.

I've endured a lot over the last 38 (almost 39) years. I live in constant self-doubt, but I seem to pull through with limited scarring. Looking back, I've realized those challenges weren't so bad.

11 years ago when our oldest son was diagnosed, all I saw was darkness. I saw no future. I felt nothing. I was numb.

Looking back, those challenges weren't so bad.

If I was faced with a decision to switch babies, there is no way in hell I could do it.

I hear Kelly's laugh and realize that he's inherited my laugh. His sense of humor is pretty warped and sarcastic, and even a bit immature. Just like his mama and daddy.

I hear Jesse talk of things that are way out of his league with such enthusiasm and confidence. There's his dad right there. Full of information that people may (or may not) be interested in.

My daughter, although not autistic, has her days of silliness and her days of 'just leave me alone!'. Just like mama.

I couldn't trade any one of them, even on the worst day - when all three are being so obnoxious due to the full moon.

If I had the choice, I'd do it all again. I'm glad to have the burden on my back because I have found that I am stronger than I thought.

Songs I've deemed Asperger's kids/adults can absolutely relate to - Part One

2011-11-24T06:59:00.000-05:00

Some of those with ASD have learned to look the part of a normal, everyday person (whatever that is). They put on a mask to hide the fascade of their awkwardness and try hard as they can to fit in. Queen's Show Must Go On says it perfectly.

The title alone is perfect! Iron Maiden's Stranger in a Strange Land. ASD people feel like the only one who never received the memo about how to respond appropriately to normal pleasantries of the everyday world.

Paper flowers, I've interpreted as books or journals. Many ASD kids will turn to reading or writing to escape the real world. Don't know if Amy Lee had this in mind when she wrote Imaginary for Evanescence, but this is how I've personally interpreted it.

This is a cheesy one, I'm afraid. But I think a lot of ASD kids feel everyday is a fight to fit in. To me, this is the perfect fight song :) lol

Voluntary isolation

2011-11-23T17:42:00.000-05:00

After attending a conference where parents of some of the students share their stories, I realize we have something in common - isolation.

Speaking for myself and my personal situation with my boys, I relate to this. There are many events that my husband and I avoided early on with Kelly's diagnosis. We were constantly told by people we were being overprotective of Kelly. People judged us and made comments.
"Oh, he's just being a boy."

"How's he gonna learn if you don't take him?"

"Just deal with it."

That has always been my favorite. Just deal with it.

Such a simple demand. But are those advising us on just dealing with it don't ever have to plan quick and painless exits when something sets Kelly off. And not just screams, but BLOOD CURDLING screams over something as simple as a toy not having batteries. He KNOWS that toy makes noise, since he has the EXACT same one at home, but because the mother of this child doesn't like noise, she doesn't put batteries in this toy. So Kelly screams, screams, and screams some more. We finally have to leave.

Then people say we spoil him. What do you do in a situation like this? Hit him? Not how we're handling him, thank you.

He's removed from the situation away from everyone's noise and shouting about 'shutting his ass up' into the car, enroute home to relax with the noisy toy he wants so desperately to play.

How about just dealing with this kind of behavior 2 hours away from home? Are you the one who has to deal with him having a meltdown over anything....bad lighting, weird smells, different people, or a new environment...and have to drive a screaming child 2 hours away?

Without using the word, we slowly became 'isolated' from our family and potential friends. We stay close to home to avoid judging eyes when our son melts down.

Over the years, the meltdowns have subsided. But there are still moments. Kelly and Jesse are on the spectrum, but at varying areas. They may speak autism, but it's like Italian...not the correct dialect. Every area has their own way of saying things that the other cannot understand. And at their ages, they don't want to understand.

Again, we have to take caution during the holidays and accommodate Kelly with his issues - although not as severe, still happen. And with Jesse and his food issues. Either bringing him his own jelly sandwiches or pizza, or having our host/hostess accommodate him and search for the last few slices of bread and a jelly that may or may not be grape, and having to give him the last of the milk, unless we bring our own.

I felt a great sense of relief today when those parents shared their stories about how they felt isolated from the world. I didn't feel so alone anymore.

Ironic, isn't it?

I feel lost

2011-11-16T19:51:00.001-05:00

Common, I'm sure, for mothers with kids on the spectrum, but seriously, I feel very lost. I hear all these stories about how when their children got the MMR, they began showing signs of autism. Really? They can pinpoint it so clearly?

Where have I gone wrong? I don't remember that moment. That moment when Kelly was talking, or at least making attempts at communicating, and then stopped. Or that moment when he was attempting to walk and just gave up on himself. I never had that moment of here today, gone tomorrow.

With Kelly and Jesse, it was a gradual deterioration of certain motor skills. One day, they'd attempt, and the next day, they wouldn't. I believed, at the time, that it was out of frustration for not being able to get that skill perfected. 'They're just like me,' I thought to myself.

I'm told that this was a red flag I should have caught. Um....yeah. I caught it. I told the doctor. He said, "Boys mature slower. Give him time." I did. Then by the time they realize they lost time to do an EXTREME early intervention, precious time was lost.

So where does that leave me? Lost. I did what I thought I had to do. I didn't want to rock the boat too much, for fear of drowning. But maybe that's what I should have done. Rock the boat, begin drowning, and hopefully, someone will throw me a life preserver.

I'll never know, will I?

Eye contact

2011-07-27T08:55:00.000-04:00

Kelly has trouble looking people in their eyes...even with me. Jimmy and I have been trying to get him to do more for himself at places like convenience stores (purchasing the Sunday paper) or ordering his own food. He struggles so hard. I understand his problem. I have the same issues that I struggle with as well.

Kelly doesn't know how to explain why he has such issues with eye contact. And I may not understand his issues, but I can certainly explain mine.

I know this will sound silly, but when I look into someone's eyes, I feel like they can read my mind. You know that saying "The eyes are the windows to one's soul"? Well, I believe that. And I can say that I don't want people looking into my soul...especially strangers.

On the flip side, Jesse is very forward with people. He will walk right up to people and tell some interesting stories...all of them true, but inappropriate. I did find that when we properly prep him, he listens quite well.

The example of this is when Jimmy and I had to go take care of bank business. We only took Jesse, and left Kelly and Harley at home. We gave Jesse instructions to sit quietly while we take care of what needed to be taken care of. He was a perfect angel. I praised him for it and he responded, "Well, you told me to."

I'm not sure where I'm going with this. Just a few thoughts in my head.

Bittersweet Meetings....yet again.

2011-07-14T19:18:00.000-04:00

Back about 10 years ago, I was distraught over a comment that our school psychologist made about my situation at the time. You see, my husband was working and I was home with the kids; Kelly, 3, Harley, 17 months, and Jesse, newborn. Kelly was enrolled in the local school Pre-kindergarten program as a way to get him acclimated with the anticipated future at this particular school system. It was a half day program and I believed it was good for him to have a few hours with kids his own age.

Mind you, this was a very stressful time for all of us. The day I brought Jesse home, the twin towers were hit. At the time, I was very confused that this could happen. I just had a baby. This kind of tragedy does not happen, especially while I'm nursing my newborn son. It was a hard concept to grasp.

Anyways, this was the time when Kelly began to exhibit some not-so-great behaviors that were red flags. Some of the 'bad' things (the teacher's word, not mine) were silly - the fact that he wrote on his name plate on his desk, which was paper, was just ridiculous to get upset over. But things like running out of the school were major. No question there.

The very first meeting that was held, my husband attended without me. The school psychologist kind of tricked him into admitting some things that were not true. Yes, I was having some post-partum issues, but I was capable of handling myself. I had a job to raise these kids, and I set out to do the best I could. He made it sound as if I was ready to bust at any time.

The phone call I received the next day was from the psychologist. She was asking some extremely personal questions about me. I didn't want to answer her, and I knew how to answer by not answering...yes, I know that sounds weird, but in all my experience with 'experts', I knew the drill and how to get around their bullshit assumptions and shut them up in the process.

I will never forget what she said to me...."You alone with three kids all day is a recipe for disaster." Those words almost killed me. Seriously. I was doing just fine. The kids needed things, I took care of it. When she asked how I handle the situations where all three kids needed me, I could not answer her. She claimed to be confused. I told her in all honesty, that I am able to quickly access what needs to be done immediately and work my way from there, and the fact that my children were pretty patient if I was busy with Jesse and couldn't jump to their demands. In fact, they were extremely helpful and began to do more for themselves and each other. Bless them.

This, was her recipe for disaster? I say BULL! She was looking for something that wasn't there and ended up bringing the state into my home to 'teach' me to mother. What a load of crap.

Fast forward 9 1/2 years later....the meeting yesterday.

Just when I was able to get over that little comment she made many moons ago, she just proves that she does not deserve my forgiveness.

We have moved Kelly to a more appropriate educational setting, and in the process, we meet with the teachers and counselor and they explain the way things work. Great! Sounds perfect for him! I am confident he will succeed.

During this meeting, I was in the midst of answering questions and the psychologist interrupts me. I turned to my husband and said, "Not like I was f*cking talking or anything." The rest of the meeting, I refused to acknowledge the 'psychologist'. And then, to add insult to injury, as I'm being enlightened on some programs for my boys, 'psychologist' says that I've been told of this before and it 'doesn't seem like I want any help'.

Hmmm....she's so intuitive.

If she was paying attention, the fact that for a long time, I worked nights...when meetings took place. And when I was able to work day hours, the fact that it took HOURS for Kelly to finish homework over the last 'x' amount of years and the fact that we do have three kids and a house to run did not leave time to drop everything to sit in a meeting and cry about my situation. And the fact that the price of gas has skyrocketed and the place for these meetings are out of the way to kind of get up and go. I don't make $50,000 a year like this bit....excuse me....person.

Not that I don't want to interact with parents in similar situation...time is a factor that I don't have, and the money thing...I just don't have the time. And I'm not crying about my situation. It is what it is. I've accepted it, and I am learning as I go. This 'psychologist' needs to keep her thoughts to herself.

So the question is....do I write to her and her bosses to explain my feelings or let it go? I still kick myself everytime I think about the fact that I didn't tell anyone about her first comment.

On the plus side, I know Kelly will succeed. The teacher I spoke with was amazing and understanding and the counselor was also just the sweetest thing. At least something great was accomplished.

2011 has been hard on all of us

2011-04-19T07:51:00.000-04:00

To start off with, my uncle's mother passed away in January. I didn't know her well, but I liked her a lot. She seemed like a fiery young lady of 82 that I could only hope for at her age. Shortly after, my mother came to visit us from California. We discussed Dorothy's passing, and my mother felt I should take the kids to her funeral. I didn't think it was a good idea. I wasn't sure just how the boys would handle death, especially of someone they met twice or three times in their lives. Harley is hard to read. She understands more than she lets on, but I considered her feelings as well.

About a week after my mother and my disagreement on how to handle the situation, I get a call at 1am from Mom's boyfriend that she had a heart attack and fell at work and was in a coma. Not something I expected. Not something I wanted to hear. Within the last four or five years, I reconnected with her for many reasons; mainly, the fact that my children wanted answers that I didn't have. "Dad has a mother that visits, so what about yours, Mom?"

My relationship with my mother was complicated, to say the least. I was filled with a lot of anger and hate for so long. As a Catholic, I felt it was time to forgive. As a mother, I needed to cast aside my feelings and move ahead as an example to my three babies....especially my boys. Empathy and forgiveness are abstract things and is difficult for them to understand. I guess I felt if I could show by example, they would get it.

Sadly, Mom passed away about three weeks ago after being comatose for two and a half months. It's not been an easy time for any of us. My kids know I'm hurting, but I cannot explain to them why. I'm not just sad to see that Mom is gone. I'm upset that the answers I hoped to get, I never did...and now, I never will. But maybe no news is good news?

And so it continues...

My husband Jimmy has cancer. We haven't discussed the severity of the situation with Jesse. He's far too young to understand. It's hard to read Kelly's feelings, but I'm sure he's feeling it, and just doesn't know how to express it. Both boys have been acting out in school, so we know it's affecting them severely. I just wish they could express their feelings in words or some other way so we can work through these feelings. Our neurotypical lady knows far too much for her age. That kind of works to our advantage, though. Not a lot of explaining, but we do give her as much support as we possibly can.

Lord, help us through this mess. We will come out stronger.

Life is tough, get used to it!

2010-12-21T05:58:00.000-05:00

The last three weeks have been trying on all of us.

Kelly, being an 8th grader, struggles so hard in his academics and social life. It pains me to watch and not be able to do anything but give advice. I can't step in and take care of it for him.

I sometimes forget about his Asperger's Syndrome, and expect him to understand when he is way out of line with his emotions. There are days when I have to reconsider why he does what he does. Is it his age or his ASD? It's very hard to tell. The stress from school is causing a lot more tension at home. I'm hoping after the holidays, we can figure out something for him.

Harley, being a 5th grader, is still struggling with her organizational skills. I do what I can to help her, but it's really not fair that I help her as much as I do when I'm supposed to be helping the 6th graders.

She is the neurotypical one and I think I put more pressure on her than I should. I expect a lot! She seems to take on more responsibility than is asked for her. I need to back off on her.

Jesse....what can I say about Jesse. He's just taken an interest in cursive writing, something I tried over the summer and he complained the entire time. When he saw me sign his communication book, he was so impressed. "Wow! How do you write like that?" I tell him I can teach him during the vacation. He seems psyched. I think by 4th grade, it's late, but consider the fact that his motor skills are not quite up to par.

He is such an even tempered kid, that I forget his PDD-NOS diagnosis. HE has a quick wit and a bright smile. There are more days where he tests me, but that's to be expected.

Christmas is soon upon us, and I cannot wait to see their faces when they see what Santa and I, Mrs. Claus, bought for them.

Let it snow

2010-02-25T08:29:00.001-05:00

Here in the boondocks of Livingston Manor, NY, we are hit with day two of an intense snow storm. I think I was more excited to be outside and playing than my boys were. My daughter and I built a lame snowman that we call our 'snow lady' because none of the boys helped us. Not even Daddy!

So what now? My boys think it's gonna be a day filled with video games and such, but no....Mama has other plans. Let's do the major housecleaning today so Saturday is a free day to do whatever.

Alas, comes the fighting between brothers. They share a room. They share autism. But what they don't share is the right way to communicate with each other. Kelly gets easily annoyed when Jesse stims, and forgets that once upon a time, he used to stim just as much. Jesse hates being near Kelly for fear that Kelly will just smack him to show his displeasure. Then I have to be the mean mom that I never wanted to be and intervene.

Sometimes, my temper gets the best of me, and I scream and even spank Kelly. But I have to remind myself that he needs more understanding and that my temper only escalates the situation. So after I count to 100, I take him aside and have a talk in the most calm way possible. He calms down, and apologizes to Jesse. They become friends.

Until next time.....

Avoidance

2010-02-16T11:59:00.002-05:00

I have three children; two boys and a girl. My boys are diagnosed with forms of Autism. I don't tell people immediately, though.

It's not that I'm ashamed. Gosh, no! I adore my children. Seeing the world through their eyes has opened my heart to so many things. Not to mention, they've posed questions to me that I had to actually take time to think of a good answer, or just say, "I've never thought of that. That's very creative thinking."

I don't tell people because I hate the looks I get. One look that annoys me the most is that, "poor you" look. You know, that look of sorrow when you tell someone that someone close to you has just passed on? That's the look I get when they hear 'autistic children'. I don't like it.

It's not necessary to feel sorry for me or my family. This is the cross I bear as a mother. I was blessed with all of my kids for a reason. Maybe God knew that I could have the necessary patience it takes to handle children who are different than the other kids.

There are times that I feel I need to wear a sign explaining their behavior, though. In church, many times, my boys do not behave very well at all. My youngest, especially, will stim so loudly, that most people will actually get up and move away from us. Mind you, we are in a bodaciously small town. Nice, right? Or at the grocery/department stores when they are over stimulated by the lighting, music and smells. Very difficult on a 'neurotypical' child, but for an autistic child, that can drive them over the edge.