Tag Archives: Autism

I need anger management…

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I need to vent…

My daughter receives services through our county and it’s called the Autism Program. They have group sessions at a place called The Hub. There she has a social worker (H**),  a masters level clinician (A**), a bachelor’s level clinician (S**2), and a handful of various therapists. Well, starting at the beginning of this year we got a new masters level clinician in charge of our case. The woman previously was “S**” and she was AMAZING. Kept me super informed on everything. Never had an issue when S** was our one in charge. Well, S** took a new job and so we got the new lady, A**. And I don’t like her. At all. My daughter was supposed to be getting 4 hours of group a week, and 4 hours of 1on1 in the home a week. When I was working I couldn’t be there during her in home sessions but my mom stayed here with her. There were 3 times I had to cancel because I had to work and my mom had appointments. 

Well, at her annual review A** informs me that because *I* hadn’t been participating (which, I don’t anyway as I have two younger children to occupy while they’re there) and the cancelations, they were going to punish my daughter by taking a day (2 hrs) of 1on1 away. (And then I get fired the next day, lol) 

Well, I had a meeting with the caseworker, H**. She agreed it sucked, but it was policy. Ok. Supposedly tells me my daughter’s annual test at HealthWest (the county mental health facility/program that the autism program is run through. It is not at the Hub) is the next day. Well, I don’t ever recall this information ever being informed to me so we miss it. I get a text from Hannah the next day asking what happened. She says she will try to reschedule. 

I bring my daughter to group at the Hub the next day and A** comes out all huffy, going, “She can’t be here since you missed her test and ypu never rescheduled it. She can’t have services until she’s reevaluated.” And leaves.

So, of course my kid freaks out on me when I make her leave with me. And she can’t have services until she does this test and they score it. Okay, I get that part. So, I call this morning to find out what the hell is happening, and her test isn’t until March 22! OMG. 

This is insane! And to punish her because of me? And the test, no one ever informed me about, when it was scheduled in the first place! That’s kind of a huge deal and I should have been informed before the day before anyway. Which I wasn’t. She never said anything about it being scheduled. Let alone the next day! And A** could’ve called me or had someone call before driving 30 mins one way to get there, just to make her leave, make her have a meltdown, and then walk away and not even tell me anything. 

I called the testing place myself today to find out what was going on and they told me that A** rescheduled it for March 22 after I missed it on Thursday!! Ugh!!! She knew Thursday evening that Avila could not come to group on Monday. 

She’s supposed to graduate out of the program this fall anyway but damn!
 I’m really upset because I feel like A** (and H** both) really dropped the ball on this one, and now Avila is the one that suffers. I never missed anything when I had Sheila. I miss her so much right now. I’m so frustrated with Amy ever since I got her. I tried being understanding, being thrown into Sheila’s caseloads and trying to build a relationship with all those families. But now I feel like she doesn’t matter anymore because they anticipate her graduating in the fall.

UPDATE:  H** calls the next day informing me that there has been a cancelation the next day at 1pm! Yes! 

Avila’s Chicago Adventure – Part 1

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I took Avila to Chicago for her first trip this past weekend. We went from Friday, March 11 through Sunday, March 13th. This trip was about 5 months in the making – if not longer. I purchased a Stephen Amell VIP pass just before Christmas and we gave her the ticket for her 4th birthday. I explained to her how we were going to go meet “Casey Jones, the Green Arrow” as she calls Stephen Amell (since those are the two major roles he plays and Avila noticed as much in the TMNT2 trailer and was beyond excited). She was really excited to meet him, and we had decided she was going to wear a Casey Jones and Green Arrow crossover costume.
Avila: Casey Jones/Green Arrow

Anyway, we also purchased a CityPass to go to the museum, aquarium, and planetarium. Those three places were the most important to visit to her, so I told myself to just let her go at her own pace.

The morning of Friday, March 11th finally rolled around and I woke Avila up at my mom’s, where the kids and I stayed because of Matt working so early in the morning and Avila and I leaving at 7am. We drove the 3+ hours to the city of Chicago and parked at Soldier Field as my Uncle Steve had instructed (he’s from Chesterton, IN which is an hour away and his wife’s brother lives in the city).

Avila and I walked to Shedd Aquarium first and only had to wait about 15 minutes until they opened, since about twenty minutes into the journey I remembered the time zone change. We skipped the line and went right to will call to pick up the CityPass and map. I let Avila lead the way and take as little or much time as she wanted as she peered into each tank.
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From 9am CT until 12pm we were at the aquarium. Avila started whining and wanted a hot dog so we went out and over to the Field Museum of Natural History to view the T-Rex fossils.

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We walked around for a bit, Avila held a T-Rex tooth, she looked over some different antlers, and decided to make our way up to the second floor and visit the Sue Store and made a few purchases. She started whining about half way through the Asian bears exhibit when we went back downstairs so we made our way back down to the bottom level, in which we came from and hit up the Underground Adventure exhibit on our way out. It was pretty interesting and Avila didn’t have any sort of sensory overload meltdowns either, which is always a plus. We went outside and got some hot dogs, chips, and Avila-safe pop and ate our food as we made our way back across the street, through the park, and back through the parking garage at Soldier Field. Avila whined some more that her feet hurt and I put her on my shoulders just after we crossed the street and she was nearly ran over by a Segway Tours guide and her group. I sat her in her car seat and called my mother, to check in with her and texted Matt an update. Avila sat quietly as she watched Max and Ruby on the DVD player in the van and ate her lunch. I charged my phone, finished my food, and contemplated our next moves. I reorganized my purse and our bag of souvenirs as I waited for Avila to see what she wanted to do next. It was around 1pm local time (so 2pm at home) and we talked to Matt as he was picking Iris and Jensen up from Grandma Bea’s house at 1:30pm Ct (2:30pm at home).

I asked Avila if she wanted to go to the hotel now, or if she wanted to go to the planetarium and of course she was game to go to Adler Planetarium. As soon as we got to the park spot after leaving the parking garage, Avila said she couldn’t walk. I hoisted her up on my shoulders as I silently cursed myself for not bringing Jensen’s single red umbrella stroller with us. I lugged Avila’s 50 lb. butt on my shoulders across the street, pass the museum, pass the aquarium, across the street, and down to the end of the road to Adler Planetarium, and up the steps. My extremely out-of-shape self nearly collapsed (perhaps that was my lungs?) as I took her off my shoulders and she happily danced her way inside to exchange our CityPass for admission tickets. We were just in time for the 1:45pm show and we got seats in the front and Avila kept asking when it’d start. About five minutes into the show I had her sit on my lap and she curled up and slept for the remainder of the show. Afterward, we sat there until the staff made me leave, and I woke her up and we went exploring.

Adler was by far our favorite stop and it was definitely worth the trek we made to get there. I would absolutely carry her heavy butt any distance to bring her there again; she absolutely loved it and it was definitely worth it. We looked around in the room with more information on the planets, and even had a to-scale planets hanging up, with more info on the planets. Avila’s favorite planet is Mercury because it’s the hottest, so I made sure to snap a picture and we went to the Children’s Explorer part. Avila spent the next three hours just playing in all the different areas of the kids’ part and I loved watching her run around, press buttons, pretend to be an astronaut, and inform me of facts she’s learned about the planets. She had me read every sign to her, although there were ones I know she read first. Anyway, we played there for awhile and I had to forcibly remove her from the premises because we had at least an hour drive ahead of us now back to the hotel.

I carried her back down the steps, down the street, through the park, through the parking garage, and only let her down once we reached the van. I even made her ride the elevator on my shoulders. She was mad at me and she likes to dart off and doesn’t listen and has no sense of danger so I wasn’t taking any chances. I put her in her seat, gave her a snack and her Ninja Turtles blanket and informed my mom and Matt we were heading to the hotel. I GPSed the address and we made our way out and to the village of Rosemont. There was construction on the highway we had to use, but it was nothing compared to the outpouring of people that were on their way (luckily in the opposite direction) to the Trump rally and I was glad we were getting far away from that mess. Later I’d find out it was shut down and I was still glad we were no where near that mess of traffic, people, and idiocrisy.

We got to Embassy Suites in Rosemont about an hour and a half later, and we got up to our room. I showered and Avila called room service, and ordered herself chicken fingers. I got on the phone and okayed the purchased and ordered myself some chicken quesadillas and was happy we didn’t have to go searching for a bunch of stuff.

I decided we should go pick up our badges and passes for tomorrow’s FanFest early and we made our way out and around to the convention center, via the pedestrian overpass. I wasn’t paying attention too well on my way in so once we got the passes and our bands for the next day, we went to leave. We made a right instead of a left and Avila started complaining her legs hurt. I was starting to get frustrated that I’d have to carry her on my shoulders again, as I wandered in circles, lost and getting late at night. A woman and her younger son was coming back towards me and said, “Nope, wrong way, this doesn’t go back to the parking garage!” I sighed and hoisted Avila on my shoulders. I explained I was headed back to the same place and could I just follow them around at least please? She agreed, and we headed back. We had to go to the same hotel and we finally made it to the parking garage. They went ahead and went down to the ground floor to go back to their room and Avila and I got in our car and rook it to get gas and hopefully pizza.

Well, we got into the Mobil gas station and instead of trying to navigate and make a bunch of left turns in the dark on busy and unfamiliar roads we went through the McDonald’s drive-thru that was next to the gas station, and went back to the hotel. We parked for the night, changed into pajamas, and we called my mom and Matt both, to let them know we were safe in our room for the night. I set my alarm, and made sure all my extra batteries and phone were charging and I crawled into the bed, to snuggle my fast-growing baby, and fell asleep quickly.

 

Go here for Avila’s Chicago Adventure – Part 2: Heroes Vs. Villains FanFest (Day 1)
Go here for Avila’s Chicago Adventure – Part 3: Heroes Vs. Villains FanFest (Day 2)

The real Avila

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Oh, where do I start on this? I’d like this post to kind of give the history of Avila, and something to link back to to “catch you up to speed” on the wonderful being that is my precious first-born.
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I was not looking to have kids, to even settle down, when I found out I was pregnant with Avila. I was partying every day and had been having severe problems with excruciatingly painful periods. The doctor I started seeing put me on the birth control Seasonique, which reduced your time of the month to 4 a year. Well, when I went in to get my first refill after taking the first three months’ worth of doses, they said, “You’re not getting a laporoscopy or a refill because you’re pregnant.” My doctor even tracked the nurse down and was like, No, there’s no way. My first reaction was, Well damn I shouldn’t have stopped and got that pint before this appointment after all. So, you can see how my priorities were at the time.

Anyway, I told Adam, whom was the guy I was seeing at the time. He suggested I get an abortion and that pretty much solidified the fact I didn’t want anything to do with him anymore. Yeah, just tell the adopted girl to have an abortion as a form of birth control. Okay. Not.

Adam, whom was 11 1/2 years my senior, already had three children from two previous marriages already at this point. I tried to be cool and make things work anyway, for everyone, especially the baby’s sake,  but that just wasn’t happening obviously. The breaking point was when he called me selfish, and unfit, because at 6 and 1/2 months pregnant, I was going to absolutely still camp out in line for the Hanson concert that was only 45 minutes from our town. More on my Hanson addiction later, but just note that we basically broke up over a Hanson concert and I’m more than absolutely okay with it.
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Contrary to his belief, neither Avila, nor I died there in the front row or in line. I got pictures with them afterward and they signed my onesie I had bought for the baby.

As I mentioned in another post, I named Avila after a baseball player. He is named Alex Avila, and at the time I was picking her name, he was the Detroit Tigers’ catcher. I wanted something that was feminine, trendy – but not off the wall, and started and ended with an A. I’m a huge name nerd and I wasn’t going to take this lightly. I needed something that went with Adam’s other kids’ names, but could start it’s own “sibling set” later as well if/when I was to have more children. Anyway, my friend Sylvia (more about her later) and I were at Matt’s  (yes, now-my-fiance Matt) apartment, watching the Tigers game. At this point I am just writing down names that start and end with A, even if I knew for certain I’d never ever use them. Anyway, Alex Avila comes up to bat and I kind of perk up a little to the announcers on TV and stop writing. I said, “Hey, Avila starts and ends with A!” Then he hits a home run. That sealed the deal, Avila it would be if the baby ended up being a girl. Which, we never did find out what she was going to be until she was born. The general consensus was that “the baby” was going to be a boy and his name was going to be Benjamin David-Isaac. Which, is hilarious to me now, writing this over four years later of her birth. Nearly 5 years already since these events took place, which was May 12, 2011 when I found out I was pregnant with her in the first place…

Okay, anyway, I was due January 11, 2012. I had an appointment on my due date, and here we were, no baby in sight. I was dilated to a 3 and my on-call doctor was Dr. Deaton. He stripped my membranes at 10:00 am and sent me home to walk. I paced the living room for awhile, while talking on the phone to my friend Kristin in Lansing. I felt like I had a really slow leak and went to the bathroom. I decided to lay down since I wasn’t feeling any sort of contractions, or a big rush of water. I hung up with Kristin, and called my other friend there named Sunny. By this time it was around 1:00 pm and she advised me to instead go to the hospital. I took a shower and got ready, called Sylvia, and called my mom. By 3:30 pm we were at the hospital and the on-call doctor, Dr. Snider, told me I wasn’t leaving without a baby. Finally! We get settled into the room and they put Cervisil in to make me thin and progress further since I was only at a 4 or so at the time. So we watch at Dance Moms marathon on Lifetime while waiting for the 12 hours it needs to do its job. 4 am they start Pitocin to further my contractions but I’m still not feeling them. They screw around forever with that and finally I’m dilated to a 9. Dr. Schlice, my least favorite doctor, was on-call at this point and they had finally broken my water the rest of the way. It’s 12:30-1:00 pm and she moves the baby’s head around the rest of the cervix that hadn’t completely dilated yet, and asks me to attempt a push. Avila’s head damn near came out and I see my baby has a headful of black hair! Doctor tells me I can’t push anymore and at this point I can’t stop. The entire birthing staff come flying in and my slow ass doctors finally let me push again. Avila came out to her knees and the doctor made me stop pushing. I tried to stop, but I couldn’t and gave a half push and she was clear. Sylvia and my mom were there and before I could even ask what the baby was, she yelled, “We were wrong! It’s a girl!”
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I laid back and thought, “Oh Avila, I love you. I have a girl. I have a daughter.” They placed her on my chest and it was the most overwhelming feeling I have ever felt in my entire life. I’m adopted and so my mom’s love for me is this chosen love, and though it’s very emotional and overpowering in it’s own respect, I have this child, my own DNA.
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My own blood relative. The ONLY blood relative I’ll ever know on this Earth ever (at this point). It wasn’t a feeling I could describe. It still isn’t. That instant I became a mother is just, the single most powerful feeling I could possibly feel in my lifetime. Every single time was the most…the three most powerful, emotional, overwhelming, fearful, loving, cheerful, scariest, greatest, unbelievable, vulnerable, most perfect moments I’ll ever be able to experience in my lifetime.
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Avila was a pretty normal baby. Younger baby anyway. Yet, as she got older, and was doing more things, she wasn’t normal at all. And I knew. Matt came into my life romantically at this point and Avila was 7 months old. He met her at 8 months old. At 11 months, the three of us moved into our first home together. And we have lived here ever since. We hope to find some property out in the country more, house we can fix up some and have horses. We’d more towards Matt’s dad so that’s always good. I love his dad, he’s awesome.

Ok, so Avila was somewhat normal, until she hit around 12-18 months and her “quirks” weren’t just quirks anymore. I have a cousin that also has Autism, so it wasn’t an entirely foreign concept to me. I went to my Grandma, whom has done in-home day care her entire life, and I knew would give me her deep-heartedly honest opinion.
“Grandma, I think…I think she’s, special. Like, {my cousin}.”
“You know…yeah. Yeah, I absolutely think it’s worth looking into.”image

And that’s how that went. I went to our doctor and he was extremely skeptical at first, but I had came prepared, and listed every single instance that had gave me suspicion, and part way through he had agreed that I knew her best, and gave us the referral to Community Mental Health (CMH) for a screening. I was thrilled and terrified. I’m a very anxious person anyway, so all those weeks, those days, those hours, those minutes, those seconds were all so agonizingly  depressing for me. I drove myself insane a million times over and I dreaded the day, and yet, I looked forward to it. I was so nervously excited I could puke; I could finally have answers. I could be doing something for her. I could put this depressing anxiety into something good for once.

Then the day came. We went to the CMH building, met with a very eager lady, and she made me feel confident, just by seeing her. I knew this was right, I knew I was doing the right thing as her mother. And so they tested Avila, and she cried, and threw her fits and had her meltdowns. They hit every trigger for her – and of course, thus hitting every one of mine, but we lived. They had me fill out lots of questionnaires, interviewed me many times, and sign so many forms. As we were leaving, I asked the woman what she thought. She informed me she couldn’t say for certain yet, until she scored the tests Avila did, but she felt that she absolutely fell on the Autism Spectrum somewhere. I breathed a sigh of relief and shame at my feelings and fears for Avila going forward and awaited my letter in the mail. A week or so later, and I got the results in the mail. I ran out to the mailbox, and I knew as soon as I saw the thick envelope. I ripped it open and read that Avila was, in fact, on the Autism Spectrum and had been diagnosed with Autism. She was leaning towards a more Asperger Disorder type, but apparently that’s “no longer on the Spectrum.” So I read and researched every single thing I could about the parts Avila scored really low in to learn what I could do to help. I read a lot about removing artificial dyes, flavors, and preservatives from her diet and decided to give it a go. It was really rough at first, but within two weeks I already had a completely different kid.

Autism Testing is the bane of my exsistance

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So here we are on this windy, wintery afternoon, awaiting to go in for Avila’s annual testing.

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I always feel like a horrible parent at these things. That whenever she can’t do a skill or task, I instantly feel guilty because I feel like I should have been working harder, longer, with her on those things.

She has “high-functioning” autism, but really all that means is, she’s “different” and “quirky” enough to be on the Spectrum, to get the services, to make life that much more different and at times, difficult for us; but she’s not severe enough for people to think she’s autistic, or I have autism parents that get mad because “at least she talks,” “at least she can get dressed,” “at least…”

You know, I always knew she was “different.” I had to fight her doctor tooth and nail for a referral to our local mental health facility just for the preliminary screening, just shy of her 2nd birthday. Yet, she was unofficially diagnosed before we even left the mental health center! When the results did come back, she qualified for the most help we could get her from the State.

I researched, and researched, and researched what I could do to help her. I was never afraid of her diagnosis and in my heart of hearts, I always knew. So, instead of resisting and denying, I took action and put my insomnia to good use. I called friends that I had lived with previously, that have a son that is quite severe and what they were doing. I have a cousin who is autistic, and his grandpa and I worked tirelessly one summer to help him. He had changed his diet and so I started combing the internet. I started reading of parents whom had took artifical dyes and preservatives out of their kids’ diets and it was really helping.

By this time it was March of 2014 and I decided to give it a try. What’s the worse that’d happen? No change and I could go back to buying whatever I wanted?

Well, in two weeks I had a totally different kid on my hands. She had finally came out of her “fog” enough that I could start actually getting through to her. And I started working with her every day, all day.

I have never “babied” any of my children, and I feel we have done a good job of trying to be upfront, honest, and bringing everything down to an age appropriate level to include them too. So, we started watching Thomas The Tank Engine because she was getting really into trains. They talked about feelings and that was something Avila just didn’t “get.” So we started talking about the trains’ feelings and our own. And now she is one to tell us her feelings… very, very loudly but she’s at least trying to get her points across.

She started liking superheroes and so we started scripting and acting out The Avengers and the Ironman movies. We dressed up and started trying to slowly expand our pretending and imagination. I had always loved writing and making up stories so I just pushed her into that play. It wasn’t easy. I can script every single Marvel movie there is and some days (and some days still) there is not diverting from the screen play. But sometimes, and these times are my favorite, sometimes she makes up a new storyline for them. Once, after The Battle of New York (as found in the movie, The Avengers), instead of going to get shwarma together, Ironman and Thor went to Pizza Hut and ate pizza and cookies. Another time, Thor took Captain America back to Asgard and had him over for dinner, and Captain America was very kind and happy and thankful Thor invited him to his house.

We work very hard to expand her imagination, and we try very hard to give her nothing but facts because she really loves to learn new information. And she’s an elephant, she doesn’t ever forget. So we try to make sure everything we tell her is completely factual and correct. And if I don’t know, I make sure to tell her that I don’t know, but let’s find out together.

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Anyway, back to this wonderful annual testing. I know she needs it. I know it does nothing but help her. I know that it’s good to find out where she is, and what we need to do to help her. I know this. But I still can’t help but feel like I could be doing better for her.

The first post is always the deepest…

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OK, first off, if you are reading this, thank you. Well, thank you and I’m kinda sorry, haha. I’m starting this blog at the advice of my counselor to help me deal with, well, life.

I’m 27 years old, but I’ll be turning 28 at the end of March. I live in Muskegon, Michigan and have been here since I was adopted from El Salvador in 1989. I was adopted by a woman whom was single, and remained single my entire life. My mom is one of most selfless, kind, compassionate people I’ve ever met; and I’m proud to be her daughter, and that my children get to call her Grandma.

I am a mother. I have three children – two girls and a boy. My oldest, Avila, turned 4 years old in January and has been diagnosed with Autism. My middle child is a girl named Iris, and she is nearly 2 and half but thinks she’s right up there with Avila. She is neuro-typical and not only wants to do everything her big sister does, she wants to do it better. So that will be an interesting dynamic once Iris surpasses Avila on skills and abilities. Lastly, there is Jensen. He is my 7 month old son and I cannot imagine my life without him. He is seriously the best baby I’ve ever met. He has slept through the night since, literally, the day he was born. But before you start getting too envious, just note that Avila has yet to sleep through the night; she’s always been worse-than-a-newborn in that respect.

Then there is Matt. Matt is the biological father of Iris and Jensen. We have been friends for about 6 or 7 years now, and going on our 4th year in a steady relationship. Technically, we are engaged and though I have every intention on spending the rest of my life with him, right now the official titles and all the pressure from those titles have sent me into a crazy whirlwind.

Which, sort of circles me back to the reason I’m even starting this blog. This blog is going to be about my journey to finding balance between “mother,” “girlfriend/fiancé/wife/significant other,” “daughter,” “friend,” and simply, ME. Working with the various professionals with Avila and her Autism, keeping our household clean and organized, getting better self-help habits so my children don’t go through the hells I did – and still  do – with depression and anxiety. I’ve had a hysterectomy in November 2015 as well, so that’s a whole other can of worms to add into the equation. Plus, in addition to all of that we have the biggest-pain-in-the-ass dog I’ve ever met, a cat that thinks he is a kid, and two horses that we will be working on getting home once we purchase our first home on property.

So, if this seems like something you want to read for ideas, tips, you feel like helping me, or just want to read about someone else’s mess to make you feel better about yourself, then that’s all great by me. I hope I can use this as a way to make connections to all of the people that are dealing with similar issues, and really help each other in remembering we are not in any of our endeavors alone and that someone, somewhere, can help and wants to help. That’s why I’m here. Hope to hear from you all soon.