Braggy Moms

I always said I wasn't going to be one of those parents that constantly talks about their kids. Turns out I'm one of those parents that constantly talks about their kids! I realized this the other day when a friend asked me what support I had in dealing with Levi having autism. Turns out, one downside to living in a small, rural town is that there are limited resources available to us. We could attend support groups, but we'd have to drive into Kansas City. Right now, that's not a practical solution for us. I have some wonderful mom friends on Facebook that also have children on the spectrum. They're great to share stories with and ask questions and vent frustrations. I'm very thankful for them and for Facebook for allowing us to communicate with each other despite the fact that we lives miles apart. I also have this blog that allows me to vent my frustrations and detail my proud moments. Writing about our experiences has been a great therapy for me. Also, we're very fortunate to work with a great ABA therapist each week. Although she works primarily with Levi, she begins each session by asking how things are going. I've been able to share many things with her and receive some great tips/advice from her in return. However, my biggest "support" has been me sharing my experiences with anyone that will listen. I've become a mom that constantly talks about her kids! I want those people close to us to understand the person that Levi really is, but has trouble showing. So I talk about him. A LOT! And I'm very fortunate to have some amazing friends that let me talk about him. They share in my laughs and provide shoulders when I need to shed tears. My family is my world. Being able to share them with others is one of the greatest gifts that I've been given. If that constant talking makes me one of those "braggy moms" and that bothers you, unfriend me! Otherwise, thanks for sticking with us. It's been an adventure and it's only just begun!

Venting update

After airing my frustrations the other day, I decided to contact the SpEd Director for our school district. Fortunately, I was able to sit down with her this morning and address those frustrations. SO HAPPY that we had this conversation! We're going to increase Levi's speech and occupational therapy minutes for next school year. We're also going to explore some new options for future summer school sessions. She also went over how his new teacher has been adapting her lessons to meet his learning style - he's a VERY visual kid so he'll be getting lots of visual prompts. I feel so much better about the direction we're headed in at this point! Lesson learned - advocate for your child and what you feel is best for them, but do so in a productive manner! So very thankful to have my kids enrolled in our school district! Couldn't ask for a better group of people to work with!

Venting post

Haven't been on here in a while, which seems odd considering I haven't been at work since May 18! You'd think I'd have all kinds of time now that summer vacation has rolled around, but somehow I've managed to keep myself quite busy cleaning the house, doing laundry, shuffling kids to summer school, attending PD events and, most importantly, entertaining Lorin and Levi! Sounds easy, yes?! It's actually been a bit of a downer. Having the kids at home has given me ample opportunity to see areas of strength and weakness in Levi. Unfortunately, I've been hung up on the weaknesses lately and am having a hard time getting past it. His language continues to be a major challenge. So much of what he says is still echoing. When he does offer spontaneous speech, most of what he says is unintelligible. Ugh!!! It's so frustrating to not be able to understand your own child! He has come up with a variety of strategies to help us understand him, but I wonder how effective these strategies will be when he's in the classroom. He's so smart, but how is he going to show others just how smart he is if he doesn't communicate with them? Our local school district has been great in providing him with services and working towards goals, but is this setting truly what's best for him? Is being mainstreamed the best thing for him? Would he be better at a facility that works solely with special needs students? Somewhere where he can get one-on-one help? But if we do that, then he learns how to function in an environment full of people like him and that's not "real life". I hate this "work in progress" thing that he brings to the table with him. I want to see positive results RIGHT NOW! I want some sign that says "you and Brad are doing the right thing". I want to ask my son "how was school today" and get an answer rather than him repeating back to me "how was school today". Ugh!!!

Cheez-Its, M & M's, and a Slinky

Levi and I went to our weekly ABA therapy session yesterday. Thankfully, I spent most of the hour giggling to myself as I watched him, rather than holding back tears like I did last time I took him in! That boy is one very smooth little stinker! To begin, the therapist put 4 objects on the table. She named each of them as she showed them to him so he'd know what to call them. Then, she said to him, "Levi, give me the flashlight". At this, he closed his eyes and turned his head. She repeated it. He kept his eyes closed and now turned his body slightly away from her. This continued for another few minutes until he was sitting with his back to her and his eyes closed. At this point, I'm thinking to myself, "Oh crap, here we go again". But then she tells him, "Levi, give me the flashlight and I'll give you an M & M". My precious little stinker promptly opened his eyes, turned to look at her, and handed her the flashlight! From here, therapy progressed rather smoothly as Levi continued to do as asked knowing that eventually he would be rewarded. At times, he even asked for the reward before he would do what she was asking. I nearly fell out of my chair when I heard the therapist tell him "Levi, point to blue" and he answered with "I want Cheez-Its". They repeated this back and forth until she gave him a Cheez-It. After eating the Cheez-It, he picked up the blue card and handed it to the therapist. My grandmother would say he was being a "pill"! He did very well yesterday, learning quickly to say the name of objects that he wanted in order to earn a reward. For rewards, he got to choose either an M & M, a Cheez-It, or a few minutes to play with a Slinky. It was very interesting to watch all of the things that he could/would do and say in order to earn his rewards. When it was over, the therapist gave me a few suggestions for how to use this method at home. I feel like I'm bribing my kid to get him to do what I want, but if that's what it takes I'll do it. Plus, his therapist assures me that it's not really bribing, it's simply "reinforcing desired behaviors". Who knew that Cheez-Its, M & M's, and a Slinky could be such powerful "reinforcers"! Gotta go! I have to run to the store to stock up on Cheez-Its and M & M's!

Therapy, round 2

What a difference a week makes! Brad took Levi to his ABA therapy on Monday. Apparently, he responded like a completely different kid this week. Brad said he talked with the therapist, followed commands that she gave him, and completed one and two step directions. After this session, the therapist said she's ready to move him up into the 24-36 month set of tasks. Way to go buddy! Brad and I have known all along that he's very capable we just weren't sure how to get him to show others that he's capable. Apparently, he just needs a little time to warm up to new people and/or new places. I'm so relieved that he's already warming up to his therapist and showing her what he can do. I'm really looking forward to taking him back next week and watching him "strut his stuff" for her. Thanks to everyone for the kind words and prayers in response to my last post. Our first therapy session was a tough one and it really took the wind out of my sails. I really appreciate all of the support. Thank you! On another note, Levi is having a lot of success with his PECS app at school. He's starting to communicate with the adults in his classroom without having to use the app. He's used it enough that he's learned what to say and will now engage in spontaneous "conversation" with his teachers. He still does a lot of echoing, but he is starting to make simple statements and ask questions. I can't imagine how frustrating it must be for him to want something and not have the words he needs to ask for it. I'm so glad that this app is giving him a way to communicate! Another cool thing about the app is that it puts the word with the picture. Because of this, I think he's starting to recognize some of those words. He loves letters and signs so I'm thinking it's just a matter of time before he's picking up a book and reading it to us!

Therapy

ABA therapy is the "it" thing in autism right now so Brad and I have been encouraged by several people to try this with Levi.  After much searching, we found a therapist near us that our insurance has finally agreed to cover.  We finally went in today for our first session.  To sum it up in one word:  BRUTAL!  The therapist is starting by doing a screening to find out Levi's strengths and weaknesses.  From this, we'll work together to develop a plan for him.  Today, she began this screening.  She worked with Levi in the play area while I watched on a TV in her office.  For an hour, she asked him to point out body parts; pick up certain toys; repeat things that she said; point out objects on picture cards.  For an hour I watched in disbelief while he did very little of what he was being asked to do.  I cannot tell you how frustrating this was.  Some of the stuff she asked him to point out (shoulders, sheep) were things thjavascript:void(0)at I wouldn't expect him to know because they're not things we've taught him.  However, he knows some of his body parts (eyes, ears), but didn't point them out.  He knew some of toys (ball, car), but didn't pick them up.  At times, he got frustrated and began to get teary eyed.  Other times he turned his head and tried to pretend like the lady wasn't there.  And when it was all over, the therapist told me that what she completed today shows him having the language skills of an 18 month old.  My 4 years and 6 months old son has the language skills of an 18 month old!  I realize that today wasn't a true reflection of his strengths and weaknesses.  He was in a new environment being asked to do things by a total stranger with mom and dad nowhere in sight.  I know that one assessment given over a one hour time period doesn't give a true picture.  I know that he's perfectly capable of doing some of the tasks that he was ask to do.  I've seen him do them.  But watching him not do it and then being told that his initial evaluation shows that he has the language skills of an 18 month old was horrifying.  I know this little boy and the things that he can do.  I know that he's smart.  I know that he has the desire to communicate with people.  I know that he feels love and is capable of returning that feeling.  But days like today make me question whether he'll ever be able to show these things to other people.  I f 'in hate autism today!  

Doc

Levi and I took a trip down I-70 the other day.  This trip took us through Sweet Springs, Missouri.  Passing through there, I couldn't help but notice the I-70 Community Hospital and every time I see it I immediately think of Doc Lea.  I miss that man!  I don't know of any other doctors that can diagnose your illness by the answer you give to the question "what color is your snot?"  I remember a time that Brad split his forehead open at work.  We went to the local ER, but they gave us an ice pack and told us it'd be about an hour.  Not pleased with that answer, I called Doc to see if he could stitch Brad up at the office.  He told us that it would make his day!  So we headed into his office and he and Mina got to work stitching Brad up.  I sat in corner reading a magazine, which Doc could hardly stand.  At least a dozen times he said "get up here and watch this, you don't know what you're missing out on".  He was like a kid in the candy store while he closed Brad up.  While I'll always remember these things, it's the way that Doc helped me battle anxiety/depression that have left a very special place in my heart for him.  The summer after I had my tubal pregnancy, I started having horrible chest pains and often had a difficult time breathing.  I was convinced that I had some horrible illness and was on my deathbed.  After being rushed to an ER by a friend, I was told that there appeared to be nothing wrong with me and I should check in with my regular doctor.  Unfortunately, at this time Doc Lea wasn't covered by our insurance so he wasn't my PCP.  I went to my doctor and after about 15 minutes of conversation was told that I was depressed and handed a prescription for Prozac.  I threw it away on the way out the door because no part of me believed that all of my symptoms were in my head.  As soon as I got in my car, I called Doc's office and set up an appointment.  I went in furious and told him how ridiculous my visit with my PCP had been.  For the next few weeks, Doc ran every test that might possibly explain what was wrong with me - chest x-rays, blood work, stress test, etc.  Every time the tests came back showing nothing was wrong, Doc calmly told me what we could do next.  Finally, Doc called me at work one day to tell me that my latest round of tests had shown that nothing was wrong.  I was finally starting to realize that maybe it was in my head and I told him this.  His response?  "It's about God-damn time you realized that.  Come see me after work today and we'll figure this out".  He knew from Day 1 that I was suffering from panic attacks.  He also knew that I wasn't on board with that diagnosis.  Rather than force it on me, he waited very patiently for me to come around to it on my own, knowing that's what it would take to get me the help that I needed.  Doc helped me to understand that there was nothing wrong with me and that depression/panic attacks are not something to be ashamed of.  After he diagnosed me, I continued to see Doc up until he closed his practice and went to Sweet Springs.  Sadly, Doc passed away a few years ago.  I wish he was still here so he could see my Levi.  I often wonder what advice and suggestions he might have.  If nothing else, I'd like to see the look on Lorin's face when he asks "what color's your snot".  Thanks for everything Doc.  I miss you!