Category: difficulty making friends


It’s been a long time…I shouldn’t have left you…without a dope blog to step to…

SORRY!!!!  I wanted to open the blog with the statement “It’s been a long time since I’ve written anything here”…and the song “Make Them Clap to This” by Erik B and Rakim flashed across my head!! (Dangers of my AADD brain).

Anyway as you know my wonderful Aspie Wife delivered a wonderful baby boy (our 4th) amidst the usual drama which revolves around our lives. Mom is doing well and recovering from her Synthesis Pelvic Dysfunction with the help of this fantastic Chiropractor where we live (originally from Long Island NY), and plenty of bed rest, even though she keeps trying to over do it.

The labor went well with the use of an Epidural (the first time she’s used it), but the recovery time afterwards has been kind of insane. Despite all our repeated speaking to the doctors and nurses in the hospital regarding her paradoxical reactions to medication, they gave her Percocet, both before and after her delivery. Before she had the baby, we were regulating her intake at home and she was taking half a pill every 3-4 hours instead of the prescribed 1-2 tablets every 2-4 hours as needed. At first she was doing great on it. Then after the epidural, they increased her dosage at the hospital to a whole tablet every 3-4 hours. The day she came home, she continued that dosage, but almost immediately after started having EXTREME panic attacks. I’m talking about staying up till 3 am walking around the van in the parking spot in front of our house drinking a gallon of water, vomiting style panic attacks.

Well of course her being the Aspie minded individual she is, started researching the next day and lo and behold, found out that Percocet can cause panic attacks in those who are already prone to having them! Well my wife had severe panic and anxiety disorders earlier in her life, which we’ve told the doctors…AND I mentioned her reactions to the doctors and nurses at the hospital every chance I got. I’ve come to the conclusion that they just don’t know what these medications can do to people. That the sales reps from the drug companies don’t tell them, and they being the busy professionals they are, never get a chance to research it so they just don’t know before prescribing these meds. It’s the only scenario that makes any sense.

Anyway, we’ve more or less gotten through that stage as the meds left her system. The new baby is doing well, and I’ve had enough time on the books to take off till the end of next week to help her recover. It amazed me that the size of a newborn pamper is about the size of my smart phone!

Phone vs Pamper

I’ve been able to do SO much clean up in the house to get ready, although I still haven’t built up the strength to go into the Cave of Aspie-ness which is the boys room. it took me 3 days to clean out the baby’s room! (remember the a/c hasn’t been working up there all summer so it’s been throw it upstairs and I’ll deal with it later all summer).  The a/c STILL is not working but now at least once I go through the Aspie Cave with a blow torch and a light saber, I can get to the point where I can call someone to take a look at the a/c unit without being MORTIFIED about the state of the house.  I’ve been doing laundry for about a week and am finally at the end of the tunnel in that battle. I fixed the shower in the upstairs bathroom so the boys don’t have to use ours downstairs anymore (go me!) and I went  through the dark vortex which is our laundry room and you can actually walk in there again! I went through the linen closet and still have a large bin of crap to go through and decide what’s staying and what’s going to the laundry room …and I still have to go through my closet and drawers and throw about 80% of my crap away. Also MAJOR victory the Thomas the Train bed is GONE from my living room! I was finally able to get it upstairs and Tot’s asleep in it now! Let’s hope he lasts the whole night up there!

Luckily the boys all love their new brother, especially Tantrum Tot. However, we’ve hit a snag. (You just KNEW that was coming didn’t  you guys?) Tantrum Tot has become increasingly more and more difficult. His meltdowns are coming more frequently and he starts screaming and fighting me and his mother and brothers for the slightest provocations. He gets mad and starts throwing things around (with uncanny accuracy and strength for a 2 year old), and he’s been physically attacking us while screaming at the top of his lungs. The other day after picking him up from day care, we went through the drive through pharmacy (those are COOL, they don’t have those in NYC), and next thing I knew I was hit in the side of the head with his toy phone! He knocked my blue tooth device smack off my head! My wife of course busted out laughing even while in shock…thank GOD I wasn’t actually driving at the time!

This is what hit me on the side of the head!

This is what hit me on the side of the head!

The frequency and the intensity of these episodes is VERY concerning for us ESPECIALLY with an infant in the house. It’s been emotionally draining for both me and his mother. The boys don’t/can’t understand what is going on. A trusted Psychologist we know told us to physically restrain him during the more violent outbursts while verbally trying to soothe him. I had to do that the other night and it left him in tears being comforted by his mother and me near tears because I HATED to have to do that to him, but he was really getting out of control and his new brother was in the room and we had to act immediately to ensure Aspie Baby wasn’t hurt.

Today we had to take the Tot with us to Walmart to go grocery shopping since we don’t have a sitter anymore. We HAD to go to Walmart even though we both can’t stand that place…because it’s the only place where they have electric scooter/chairs my wife can use due to her pelvic issues. While he was well behaved for him, he still had a few tantrums (not meltdowns) and caused some more of the hair on my head to go gray. When we got home, even more meltdowns and another violent episode. I gotta tell you I’m getting very very concerned about this. They seem to be increasing and my emotional ability to process them is decreasing. If any of you could steer me towards any good articles on dealing with this I’d really appreciate it!

Anyway I’m going to go try and lay down in between feedings. I can’t wait till this one’s schedule is right!

Today my wife and I went to her cousins house for her daughters 14th birthday. Her cousin and her husband are the only friends we have down here and if they didn’t live an hour away from us we might see and hang out with them more.

My wife’s cousin’s husband is Mexican. He’s a cool guy…he was an architect in Mexico, but can’t work as one here. (don’t get me started). Anyway, her cousin is cool people. She works from home and takes care of their two teen and pre-teen daughters. Needless to say they are all NT’s and they don’t know about my families Aspie-ness.

The husband had some of his friends and relatives over for the party, (my wife is the only family her cousin has down here). There was food, (barbecue and Mexican), music, (I had no idea before today that Mexican’s listen to Merengue music like us Puerto Ricans do), and the kids were in the pool. Now my wife and I sat apart from everyone else, his family usually is very “stick to themselves” when they are there with anyone else (so my wife’s cousin tells me)…but we didn’t mind too much, because it gave my wife a golden reason to NOT have to interact and spared her a lot of pressure.

I was sitting there, listening to the music, eating the food when I realized how much I missed having Spanish culture around me. I’m Puerto Rican from New York, and though I don’t have a very strong cultural identity (i don’t speak read or write Spanish, and I can’t dance Salsa or Merengue etc.) still being  in NY you can’t help but be around it some point. True this was the Mexican culture, but it was similar enough to invoke those feelings. I also felt sad that I didn’t feel connected to what was going on around me.

My wife and I have NO friends out here. We don’t interact with anyone. I don’t hunt or fish and can’t even fathom how that is even entertaining. I am not Mr. Fix-It or Mr. Mechanic in a land of people who were raised building, plumbing, farming, hunting and fishing and working on cars since they were 3. I have NOTHING in common with any of the men down here.

For my wife it’s even worse! She rarely does anything other with her hair than throw it in a pony tail, and usually wears shorts flip flops and a large v neck tee shirt whenever she goes out or stays in, and doesn’t really worry about her appearance too much after that. She doesn’t put a huge priority on cleaning house, or gardening, she doesn’t like shopping or doing girly things like that and has absolutely no  interest in getting together with the girls to gossip. On top of that at least during the day I get to leave the house and go to work and interact with people while she stays at home and feels like a house hostage.

I say all that to make this point. As I sat there feeling disconnected and sad about it, it hit me how my wife and other Aspie’s feel like this every day. Seeing the world go on around them, and not being able to interact with it, and when they do they don’t quite feel connected to it. They will never be able to experience it the way we NT’s do.

I’ve spent my whole life feeling like an outsider. I didn’t have a strong enough Puerto Rican identity for my culture. (To this day I get poked fun of for not speaking Spanish). I was always an outsider wherever I went. We moved around a lot and didn’t stay in one place for any amount of time. We were dirt poor. I never had cool clothes or even new clothes. I was easy pickings for the bullies to make fun of. I had a speech problem. I wasn’t allowed outside and my dad though he lived with us was hardly home to teach me to throw a football around, or hit a ball etc. so I sucked at sports and didn’t know the rules or how to play any of them. I wasn’t allowed to listen to music or go to movies so I had nothing to talk to anyone about. I was lonely my whole life.

But I learned what to say in what situation. I learned the correct social cues and etiquette and eventually even how to understand emotional effects on human behavior and reason out why someone would act a certain way or even predict how they would react if I did a certain thing. So I learned how to survive adapt and blend even if I didn’t feel I ever belonged anywhere.

My wife can’t do that. My sons can’t do that. Nor will they ever learn to. They will forever be disconnected from the world at large. They will never quite fit in. They will always feel like they are in a room full of people yet be so lonely it’s heartbreaking.

Not only that, but outside of this house, they really don’t have a hope of ever being able to do so.

Thank God for the online community. For places like WordPress or Blogger or even Face Book where they can meet other Aspies, share similar experiences, come together and have some sort of solidarity. For cyber-friends and circles. There is hope, they can see they are not alone. They can reach out across miles, states, countries or continents and FIND others like them who can show them they are not as alone as they think.

Thank God for all of you.

I was reading a blog from Autism Daddy, who is one of my all time favorite bloggers (aside from my wife Aspiewriter of course). On his page he had a link to this post on Autism Parents & the Guilt Factor, which I thought was simply amazing. It was written by Jene Aviram of Natural Learning Concepts.  It is an excellent article that I think all parents and family members of people on the spectrum should read.

Autism Daddy made the point that this writers blog doesn’t seem to be widely circulated, and after reading this article I just thought I’d help in spreading the word around. I thoroughly enjoyed the article and hope you do too.

This paragraph especially got to me:

4. Acceptance
On asking adults with autism “What’s the single piece of advice you would give to parents of autism spectrum kids?” the answer is almost always a unanimous “Unconditional love and acceptance.” For just a moment, view your child’s perspective. Almost every action gets corrected. Almost every behavior is modified. Method of play is considered inappropriate. Self stimulatory behavior is often halted. Your child is constantly being told to think, talk and act in a way that is foreign to his inner nature. It can’t be easy to keep one’s self esteem intact. I certainly advocate teaching as many skills as possible to help your child function in life. However, it’s essential your child knows you believe he is perfect just the way he is. It’s simply unfortunate that others might have difficulty understanding him. Your child should intrinsically know the reason he’s learning new skills and altering his behavior is not because you want to change him, but because it will help others relate to him, grant him acceptance and allow him to lead a more productive life. The next time you feel guilty about not correcting your child’s behavior or mannerisms, remember that delighting in your child’s unique qualities is just as important as teaching appropriate actions.

I tend to yell at my oldest a lot. He automatically reaches the end of my patience from the word go. It’s not because I’m frustrated with him…it’s because I’m so frustrated with me…because I can’t teach him things that will help him NOT be teased, or NOT be ridiculed.

As a child I was never the one who fit in. I was the poor kid in second-hand clothing who had no idea what was going on in the world. Most of the time I didn’t have a TV, I wasn’t allowed to go to movies, trick or treat, go to parties (not that I was ever invited), participate in school activities or after school activities etc. etc. I hungered for acceptance, did things that I thought would get me that acceptance only to find out I was being used later on. I was the one everyone teased and who never fit in.

I never wanted my kids to have to go through that, and it was my job to teach them things to make sure that never happened. My kids however, are harder to teach. Every time I see my oldest, and try to teach him something, he doesn’t get it. Or can’t stop concentrating on the things he’s pondering to receive it. Our communication is blocked, not by language or understanding but by blocks I can’t understand or circumvent. My frustrations aren’t with him…it’s with my own failure. Luckily my kids still seem to love me. Sometimes those little acts of love they show me comfort and teach me much more than I think I’ve ever imparted to them.

This is why when I read this post I had to share it. If even one other person besides me gets something from it, it was worth it.

“They” were wrong.

This is an excellent post I found. Had to share it. Will comment more on it later.

Enjoy

Mark

I truly enjoyed this post. One I liked her stance on her kids privacy. I don’t agree with it 100%, but still I admire the points she made.  I admit to not thinking of this topic from her perspective before.

Two: I understand how the health care professionals got it all wrong. All those people examining her kids and completely ignoring what her concerns were. We have been through the exact same thing. One specialist even went so far as to tell my wife, it’s all in your head…your symptoms are made up!  And this was a specialist…(we have since come to find that a very well respected doctor in our community and him were good friends, to the point where the specialist gave the other doctor’s wife a horse! But when the doctor’s wife went to the specialist, she went for one visit and never went back because of the way she was treated by him.)

If you have suspicions, that what you or your kids are going through is autims related,  gather you facts! Do your own research! Go into that office armed forearmed with foreknowledge. I admit that I was beginning to lose hope of ever finding out why my wife had the issues she had. I had honestly NEVER heard of some of the things she was complaining of, like hearing the filaments in the lights or smelling the trash from outside when I couldn’t smell anything, or needed sunglasses everywhere.

I remember reading The Girl With The Dragon Tattoo and thinking WOW this girl sounds like my wife and watching Bones and saying hey that reminds of you, when Dr. Brennan was interacting with Agent Boothe.

When she showed me her research on Aspergers Syndrome we KNEW…we had found it! Getting the healthcare profession on board was another chapter….but in the end she got the doctor that mattered most on her side. Now, knowing what we do about Asperger’s we can SEE it developing in our children. We can see their symptoms and how they are displayed and KNOW what they are.

Today we had a VERY encouraging pair of meetings, first with the teachers in his school, and second with the director of special/gifted services in the school district. The results, is that the school is starting the necessary steps to have my 8 year old evaluated and we started the process to have my 13 year old evaluated, and got information for some people in our area who sponsor evaluations for our 2 year old.

I am very encouraged. But for those of you who are still struggling in this area…gather all your research, and show it to your doctor. Go to your school board, (not the school, but rather find out where the faculty of your school districts are located and go directly to them yourself with your research).

Don’t take no for an answer. Keep perservering. It’s ok to have your doubts too…so make sure you’re convinced. If not, keep researching and either still your doubts or choose to keep looking. But don’t let anyone discourage you.

I love my kids. I never in a million years would trade any of them for anything. From the oldest to the youngest, though as I have mentioned they can give an aspirin a headache and leave Mother Theresa in tears, they are mine, I made them and I love them.

That being said, they drive me insane in that special way that only someone you love so much can. In particular, today we are going to talk about taking them out to eat in public.

The past two weeks at work I’ve had a schedule that my wife absolutely hates…I’m usually off Saturday and Sunday’s, but this schedule not only do I have to work the weekend but three days of the week go in from 1:00 – 9:30. It’s exhausting for my wife, and for me as well. Well I came home from work and my wife who had been left alone with the darling little terrorists (remember folks I use a lot of sarcasm), for too long said we’re going out to eat, I already told them we can go to the Mexican restaurant with the arcade.

OK, it’s not so bad. it’s not that big an arcade, the games aren’t that loud, and other people’s kids are there running around too so my kids look more normal. It’s not as bad as Chuck E. Cheeses so off we went. I couldnt blame her.

Now I want to say right off that for my kids, they behaved excellent that night! Not a lot of complaining, not a lot of drama. But let me list some things that went on and you may be able to grasp a bigger picture.

  • My 13 year old was told to move over cause he parked his big old self in the middle of the bench in the booth and I couldn’t fit. (He seriously never thought that I had to sit down too), and when he tried to move, found out his foot was caught between the bench and the table leg. His feet were crossed like he was doing third position in ballet or something. HOW the HECK did he get his feet like that and stuck no less, simply by sitting down at a table?
  • My 8 year old, while sitting down eating what constitutes a full meal for him (tortillas dipped in cheese dip) started sliding off the bench till his legs were under him, his back was on the front of the chair, and his head was barely visible above the table while he CONTINUED to dip and eat. I watched him sit there for a full minute and a half and finally told him to sit up like a human. To which he blinked looked around, sat up and continued dipping.
  • Both my 13 and 8 year olds devoured 2 baskets of tortillas and 2 servings of cheese eating ravenously like my wife and I hadn’t fed them in 2 years. (Yes we have fed them and Yes we did get stared at.)
  • My 13 year old while devouring his chips and cheese dripped cheese ALL over our side of the table.
  • My 2 year old terror was quite the happy boy. They have one of those rides with the cartoon characters that go around in a circle like a merry go round, and they had skee-ball. (No I don’t know how it’s spelled or what the name of the game actually is. It’s the one where you throw the balls up the lane and try to get them into the different scoring holes). He spent most of the night on the merry go round thing and part of the night, climbing up the skee ball lanes and throwing the balls in from under the glass. And then he climbed INTO the basket ball game and started taking free throws from right outside the glass partition.
  • And of course neither his mother or I could sit for more than 3 minutes at a time, until we had to get up and walk him around again.
  • And no evening would be complete if my 13 year old didn’t knock over his drink completely drowning the table. He does this EVERY time without fail. I’ve considered taking his adult sized drink privledges away and making him use a travel cup with a lid from now on.

All these things were NOTHING. If this was as bad as they got every time I would never consider writing  this blog post.

Now let me just say that I have sat in restaurants and watched other people’s kids and some make me ponder why can’t my kids sit like that when we’re out? The youngest is in the high chair, eating his fries so nicely. The others are sitting there talking animatedly, yet still not so loud that everyone can hear them ABOVE the sound system, and they listen to to their parents and you wouldn’t glance twice at them.

And some make me ponder why adults aren’t licensed to procreate in the first place. (And then I remember what my kids are like and I wonder if someone isn’t thinking the same thing about mine).

My children are not severely autistic. They speak very eloquently, my 8 year old is such character he can be funny even when being “disobedient.” My 2 year old doesn’t speak fully yet, in fact he’s severely underdeveloped in that area but you wouldn’t look at him and think the was autistic. (Not that there is a way autistic people look, see my past blog to see my stand on this topic). Still sometimes it’s disheartening and discouraging to know that we have to pick and choose where we go, what we do, where we take them and who we can do things with, based on the fact that we know it will be embarasing and/or it maybe simply to overwhelming for us to take them certain places.

I know my wife sometimes may think I don’t cut them enough slack. Or that I would rather not deal with taking them out most places because of the above stated reasons and that is true to a certain extent, I admit it. I don’t like feeling like people are looking at my kids and thinking “oh my God what kind of parents are those?” Especially down here where apparently there is something wrong with you if you don’t go to this church, or am a member of this group, and nobody’s a stranger, cause they lived here there whole lives and never left etc. etc. and so on and I admit I do need to work on that more.

But the other part of that, and I’m willing to bet that I’m saying something that most NT’s feel and may not know how to articulate to their Aspie partners, is that it’s not JUST that. It’s also I don’t want my kids to be made fun of. I don’t want people to look at them and judge them by how they present in this area. I’m damn sure not going to go into a full explanation of social underdevelopment, not being able to interpret body language, tonal values of voice and inflection in conversation,  and seeming indifference of others feelings. I’m not justifying that my kids thinks everyone abides by the same moral code as them and can’t process why they wouldn’t.

I don’t want my kids to go through the finger pointing, the whispers, the judgmental glances. The teasing and the inevitable not being allowed to play with other kids. When we first moved to our new house/neighborhood here my 8 year old was beside himself. He finally was in an area with other kids he could befriend and hang out with. He would wake up head for the door and yell I’m going to this person’s house or this kids house and go. But then one day he came come in tears. He had went to one of his friends house to be met outside on the lawn by the kids father who told him, you can’t come over anymore, my kids don’t want to be friends with you any more. WHO DOES THAT TO AN 8 YEAR OLD? This parent never contacted us, never sent a note asking to please call or discuss anything my son was doing. Nothing. My son was heartbroken. He couldn’t understand what he did wrong.

I would spare them that. I would spare my wife that. And yes I admit, I would spare myself that.

I love my kids, as I’m sure all of you love yours. And quite frankly I don’t feel its worth the damage to their little hearts to have to ponder at night why don’t those kids like me? Yes they have to face these things and grow, and yes they will. I know this more than anyone believe me. But as much as possible, I want them to have a fair shot, and not be written off automatically as odd balls, freaks or whatever.

(I think this might lead into a part II)

Friendship is born the moment one person says to another: “What? You too! I thought I was the only one!”

-C.S. Lewis

I originally thought that I was just going to post this quote as a “Quote of the Day” type thing. But when I re-read it I realized it triggered something in me to write.

On my wife’s blog Aspie Writer, she touches on the fact that she had and still has a hard time socializing, picking up on non-verbal cues necessary for successful social interaction, and fitting in with people.

This has been true throughout our marriage. While we lived in New York, it was easier to deal with this. She had her brothers who would come over and hang out, or we’d go to her Aunt’s house or her Grandmother’s house. (Remember at this time she was not diagnosed yet). I had two friends who would come over and we’d all watch movies or play board games. But making new friends for her was not only hard, it was traumatic.

She’s mentioned in the book she is blogging that I was always something of a social butterfly. (There is much more to this that does not bear going into here), so I had plenty of friends and making new ones was not that hard for me. I have to admit while reading the blogs she’s been posting, it sometimes has damn near broken my heart to read what she had to go through.

Even in adulthood she has been so very lonely.

Now that she’s started blogging I can’t tell you how much it means that she’s discovered so many people who she can relate to. The introduction of “virtual friends” into her world has given her so much happiness. It’s been thrilling to watch her discover new friends and interact with everyone. She’s truly found her niche I think in blogging about her autism.

So to everyone who reads this blog, or came here because she directed you from her blog, or who just finds your way here and then find your way there to her blog and become involved with her there, thank you so very much. And I hope you enjoy reading both of our blogs.

 

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