Tag Archives: Autism Mom

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! 

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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)

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.