Baby Sister

How do you explain to a 5 year old severely Autistic boy that he is going to be a big brother? Hmmmm . . . .

I’m about 22 weeks pregnant with a baby girl and my boyfriend and I are extremely excited about it. I’ve wanted another baby for a long time so this is like a dream come true.

I have told Evelio that he is having a sister and I tell him that often. He likes to push and lay against my belly as well. I just don’t think that he really understands what having a sibling means. I’m kind of nervous about how he is going to deal with having a baby around.

My sister just had a baby 3 months ago, and he’s really good with him. However, I am Evelio’s mother and he’s had me all to himself for 5 years. I’m not sure he’s going to be okay with sharing me with a baby. It makes me kind of sad for him because I just know that he’s going to be so confused. I never want him to feel as if I have replaced him. What if he wonders why he isn’t “the baby” anymore?

I know that he has a problem with aggression and this is going to be a huge adjustment for him. All I can think to do is to talk about the baby often and hope for the best.

Today, Evelio was lying against me with his head on my belly. I guess the weight of his head was bothering his baby sister so she started kicking. After she kicked his head about 3 times, he lifts up his head and gives me a huge smile and flaps his hand and says, “taaaa”, and lays his head back down. I’d like to think that he realized something was “in there” and it made him smile. I asked him if he felt his sister kick him and repeated it to reiterate the fact that he’s having a sister. Of course he didn’t respond, but I thought it was a good idea to bring up his sister while he had just felt her move.

I’m hoping he bonds well with her and I know a lot of time will have to be put into their relationship. Wish us luck!

School Speed Zones and Yellow Shirts

Something heart-stopping just happened and I just need to get it out.

Beforehand, people should note that Autistic children are NOTORIOUS wanderers. My son is not an exception. He will set his mind on going somewhere and, if he has more than 2 seconds supervisor-free, off he goes with no regard to his surroundings. Now, he hasn't wandered away in probably a year. However, today, he felt the urge.

I just got home, so I didn't shut the front door. I left the big door open and only shut the screen door and forgot to lock it and set the door alarm. Evelio was watching Thomas the Train and I took him to potty. Then, I had to go so I sent him back to the living room where I assumed he would resume his movie. I was in the bathroom for probably 30 seconds. My sister was in the kitchen preparing a bottle for her brand new 6 day old baby boy. I came out of the bathroom and didn't see Evelio in the living room. I asked her where he was. She said that he had come out of the bathroom, but that she didn't hear the screen door open. We spent probably 10 seconds checking the other rooms in the house. I then ran outside and looked down the street.

My heart froze in my chest as I saw his bright yellow t-shirt in the middle of a busy street in front of the school that is a block and a half from our house. He was stopped in the middle of the street flapping and jumping. I'm betting that seeing the cars' wheels spinning caused him to "stim-out". Anyhow, I took off running, bare-footed. The cars were slamming on their brakes in order to avoid running him over. Luckily, it was right between 4:00 and 4:30 pm, so the school speed zone lights were flashing so cars were going very slowly. It was also extremely lucky that he was wearing a very bright yellow tshirt that made him easy to see.

He made it across the street and I lost sight of him. At this point, I was going into hysterics. I was running as fast as I could possibly go and I couldn't see how I could catch him. Some kids were walking down the street and asked me if I was looking for "the kid in the yellow shirt". I frantically said yes. They said "He almost got hit by a car!" I nodded to indicate that I knew that, while continuing to run. They then told me that he ran toward the back of the school. I ran around the corner and I saw him. Across two parking lots and down a flight of cement stairs, and across the playground, where was he?

At the swing set, climbing on a swing. I finally got to him. I was shaking so bad, I felt lightheaded and felt as if I was going to pass out. I threw my arms around him and just held on to him. He kept pushing me back and trying to put my hand on the swing chain to communicate that he wanted me to swing him. I started walking him back towards my house, when a special education teacher, who just so happens to work at Evelio's school across town, was pulling out of the parking lot and recognized him. I explained what had happened and why I was so shaken up and in tears, and thankfully, she gave us a ride home.

As I sit here, I am still shaken up. I can only just be so thankful for school speed zones and the fact that he was wearing a bright yellow shirt. What's crazy is, I can't understand how Evelio remembered that there were swings at the school down the street. When he has "escaped" the house before, he has always run the opposite way from the busy street. He has only been to the swing set at the school one time in his life. That was in March of 2011. That's almost 2 years ago. I have no idea what triggered that memory. All I do know is that he knew exactly where he was going and made a B-line for it.

I can just be thankful that he is okay and no one hit him.

Regression?

Since Evelio has started school (October 1st), only the very first week was great. But, the rest of the time has been a nightmare. Evelio has had two incident reports already, plus a call home yesterday because he was having a "bad day" and the teacher wanted to know if I could pick him up. I couldn't though because I didn't have the car.

Anyway, he actually received the first incident report on the 9th, which was only his second week of school. He was angry because the rest of his class (only three other students), were going to PE and Evelio is not allowed to go. I was not aware of this before as it was NOT discussed during his IEP meeting. When I asked the teacher why he wasn't allowed to attend PE with the other children, she said that PE is mainstreamed with other kids and she didn't feel as if he could cope with organized activities. She asked if I felt that he should go to PE. I said that he should be able to go with an aide and be allowed to run some energy out while the other kids played their kickball or whatever they are doing that day. Anyway, the other kids were going to PE and he was angry that he could not leave the room. He proceeded to "charge" at his teacher a few times, which she deflected whatever blow he was throwing at her. The fourth time, however, she missed and he kicked her a few times in her arm and caused her arthritis to flare up and her arm to swell. She was unaware that it was an arthritic swell at the time. The next day, she arrived at school and noticed that her arm was bruised purple and black and was very painful. So, after a half day, she went to the Emergency Room clinic. The doctor there informed her that it was a flare of her arthritis and that her bone was not broken and advised her to take the next day off. So, she filed the incident report, and, in Evelio's second week of school, he had landed his teacher in the ER.

The second incident report came home today. I was very surprised to find it in his backpack because his teacher did not call me at the time of the incident. This made me upset. I feel that in serious instances such as this, she should call me straight away. Anyhow, the incident report stated that Evelio was eating pretzels and it was time for lunch. The teacher's aide stopped giving Evelio the pretzels, which angered him. This resulted in him "biting the teacher's aide on her inner thigh." The recommendations from the teacher and the principal were to "shorten Evelio's school day."
Now, let me remind you, Evelio only attends school for four hours right now. When I read that the bite was to the "inner thigh" I immediately reacted with "How in the hell did Evelio even get to the teacher's aide's inner thigh?? I called the teacher and explained my concerns. She said that they were both standing and that the aide had Evelio's hands in hers so that he could not scratch her, so instead, Evelio bent over and bit her thigh. The teacher also told me that the bite was bad enough to draw blood. I still am confused as to how he was able to get such a tight grip on her inner thigh while she was standing up, and how she was unable to block the bite to begin with. I understand that he acts fast, but I still don't see how that happened.

Anyhow, I expressed that I completely disagree with shortening his school day because his behavior was not caused by a long day at school. It was caused by refusal to give Evelio pretzels, so I feel that shortening his school day is an inappropriate intervention. I believe that his day is already short enough and that by shortening it more will only inhibit his progress more. The teacher said that she and the principal recommended this because Evelio seems to get more easily agitated after about 10:30 am. I began to explain that, by sending him home early, Evelio is taught that if he hurts someone, he gets to go home. The teacher said, "Well, when he starts injuring people, there's not really much we can do. We are going to try to change the ways in which we re-direct him and say alternative "no" words." I then began to get extremely over-emotional.

I cannot help that I come to tears when things like this happen. It's extremely difficult to know that your child is behaving so badly that he/she is unable to attend school. I voiced to Evelio's teacher that it seems as though people are going to continue to give up on him because he is out of control at times, but how is he going to improve if he is given up on. It seems that every time a problem occurs, the first reaction is to shorten his day. It's like they believe spending even less than the already scant amount of time they work with him is really going to help him learn.

I guess that after I graduate with my Bachelor's in Special Education, I'll just have to stay at home and teach Evelio myself. I feel so heartbroken and lost right now. I feel that all the progress he made while away at school has just gone out the window. This type of behavior is making me feel as if there is no hope for my son, at least while he's at home with me. And this is a heart-crushing feeling. I really want to believe that this is just a phase and one day we will be much farther down the road of progress, but when you have three consecutive weeks of this type of SERIOUS behavior, it's is almost impossible to believe this way. I'm just in tears.

Do You Believe in Magic?

I have been seeing a lot of graphics and such with the words, "If I could snap my fingers and be non-Autistic, I wouldn't. Autism is a part of me." There are variations to make the saying fit "my son/daughter, sister/brother and so on.

If I could snap my fingers? . . .

I realize there is a lot of controversy associated with this question. There are many people with Autistic family members and Autistic people themselves who are offended at the thought of taking away their Autism. They view their Autism as an integral part of who they are, and without it, they have lost a part of themselves, sons/daughters, etc.

However, I would be lying if I said I wouldn't take away my son's Autism if I the choice was possible. Or at least change the severity of his Autism.

What I try to explain to people when I speak about this subject is that if Autism doesn't just affect Evelio's personality. It's not like he's just anti-social, or has weird tics that are harmless. If it were only that, I believe I could cope just fine with it and I would more than likely view these effects as unique personality traits. And there are some things as a result of his Autism that are personality traits about him that I love and would prefer not to change. Some of these are:

• When he bursts out laughing for no visible reason. Just because he views an ordinary thing as hilarious, or maybe he's picturing something in his mind that is insanely funny that he just can't keep his giggles in. His laugh is certainly infectious and I often find myself laughing like a maniac with him. I wish that I could see what he is seeing.
• When he is in a lovey-dovey mood and wants nothing more than to cuddly with me and sing "ay-ya-eee" over and over, or put my hand on his leg and pat it to let me know he wants to be patted, or tells me "tee-tah" in a soft quiet voice because he wants to be tickled. When he's in these moods, he doesn't care who's around or where we are, he just wants love and he is determined to get it. He will kiss me over and over and hug me tight.
• When he's running back and forth in front of our TV and flapping his hands and making all kinds of crazy, random noises. He is just so very happy and it makes me so happy that I actually tear up at how he has no idea that he is different and is just a happy-go-lucky kid.

But, there are things that I would take away in a heartbeat if I could. Sometimes, I just wish so hard that I could take away all the things that give him so many problems and the things that ensure that he will never have an independent life. Things like:

• Not being able to communicate in the way that he needs to. I am not talking about verbally communicating. I would LOVE for him to start talking, however I have come to terms with the fact that he might never. I just wish that he had some way that he could express himself so that he wouldn't have such a hard time.
• Getting so frustrated that he cannot communicate effectively that he is sent into a meltdown. It gets so severe that, honestly, when I look into his eyes, he doesn't even look like himself. It seems as though he's lost control and some inner, powerful rage, has taken control over him and he is somewhere trapped in the back of his own mind, helpless.
• Simple things, such as the vacuum, or a flickering light, that send him into a frightened meltdown. Whenever this happens, it usually turns into a four to five hour session of screaming, crying, and self-harm consisting of slapping, scratching, and banging his head on the closest object to him. Sometimes it involves throwing things and trying to break things and tossing chairs over.
• The fact that he is SEVERELY developmentally delayed. He is five years old and his mind is like that of a 9 month old to a 18 month old. He is in a class with three other children with some type of disability and his teacher has told me that the other kids try to help him. This gives me the impression that he is even behind them developmentally and they are in first grade. This is a big issue that hinders his future and is EXTREMELY depressing for me.
• His anti-social tendencies scare other children and he is likely never going to have friends. He is happy with being loving with me, Robert, my sister, and a select few ADULTS; however he is NOT at all interested in being friends with kids his own age, or any kids in general. He usually tolerates other children, but they do become his "punching bags" when he is frustrated. It hurts me to know that he will likely never feel the bond between friends, and also makes me worry about the relationship between him and Robert's kids and if I ever have anymore children.

To me, his Autism is NOT just a part of his personality. His Autism completely hinders his current quality of life as well as seriously narrows the possibilities that will be available to him in the future. I constantly worry about what will happen in the future, hope for amazing progress that will allow him to possibly obtain a job through the workforce, and get sick to my stomach when I think about what will happen to him when I'm gone and he no longer has a care-taker.

These are issues that I would not have to worry about so much if he were not so severely affected by this damned Autism. I would definitely be lying if I said I didn't HATE it. It comes down to the quality of Evelio's life, and right now while he is blissfully ignorant of just how different he is, life is good in his opinion I am sure. But, I dread the day that he realizes that he can't do things that other kids and young adults will be able to do. It's not that I mind if he lives with me forever; I will ALWAYS be there for him and take care of him while I am alive even if he wasn't so severely affected by Autism. It's the fact that he will have such limited opportunities that my heart breaks for him. I had so many plans for his future when I was pregnant after I got over the shock of being pregnant at 16. I had big dreams for him and what he would become. I still dream that he will be a great adult, however that dream has changed. I fully intend to help him in any way necessary to ensure that he becomes as successful an adult as he can be.

I love my son just the way he is, however, if I could snap my fingers and make the Autism disappear, or even reduce the severity of his Autism, would I do it? . . .

I'd have to say. . .

HELL YES!

Back To School: Evelio's First Week

Evelio went back to school here in Duncan on Monday, October 1st.

He turned 5 years old on September 28th. :) Went to see Hotel Transylvania and we all loved it! I'm totally buying it when it comes out on DVD!

Anyhow, Evelio's teacher said that he has been doing great in class. She said that he has been VERY loving towards her and has had no serious aggression issues. YAY! He will squeeze her arm when he's either overstimulated or frustrated but he hasn't hurt anyone .

She told me that she's fallen in love with him :). I should have expected that. It seems that everyone who works with him falls in love with him. I guess it's because when he likes you, he gets VERY lovey-dovey and just wants all your hugs and kisses. He really is a very sweet child when he likes someone. His teacher said she already knows that she's not going to want him to leave her class next year. Which he may not considering she's a first grade teacher and he's still considered a pre-kindergartener. Next year it will be kindergarten and he may or may not be with someone else.

He has had a few accidents since he's been at school which I am very proud to report. He has been eating the lunch I send with him everyday also.

He had an appointment with his psychiatrist last Friday and he's up to 53.3 pounds! He also did very well during the doctor's visit :).

I am just so proud of him and I am so glad he's doing well in school. Just wanted to post a short update on his continued progress and reaction to school :).

Yellow Ribbons: Home Sweet Home

Evelio was discharged from Rose Rock Academy on Wednesday, September 26th.

I was set to pick him up at 2pm. My mother-in-law and I arrived in Oklahoma City an hour and a half early. She decided we would wait for the time at the McDonald's down the street (the same McDonald's that Robert and I would take Evelio to on visitation days). I was so impatient. I couldn't sit still. We went to Rose Rock at 1:30pm. I then sat impatiently in the waiting area of the check-in/nurse's station until 2:07pm. Then, Keila finally came in with her intern and discharge papers. Then, I signed my life away and received my copies of everything rather greedily. I was ready to go.

I glanced out the door of the office and I see him. My baby was walking with an aide. She had a duffel bag with all of Evelio's clothes and a huge packet with Evelio's art projects inside.

Becca, his expressive therapist was calling to him from across the courtyard to hug him bye. He ran up to her and gave her a hug. I'm sure he was wondering why everyone was being so lovey-dovey with him. Then I walked out of the office and called to him. He turned and looked at me, smiled, and took off running toward me. I ran toward him too. There wasn't a huge distance between us, but I still felt as though there should be cameras filming this absolutely blissful moment between mother and son so I could watch it over and over again.

Anyhow, I scooped him up in my arms and he kissed me right on the lips. The aide handed Evelio's bag and file to my mother-in-law while I accompanied him to the bathroom. After a cup of water he finally went to the potty. Then, the nurse did one last check-over and went over his meds with me three times to make sure I understood.

When Evelio was admitted, he weighed around 47lbs. I believe he lost some at first and then apparently started gaining because now he weighs 51lbs. Maybe it's because he grew much taller. I'm not exactly sure how tall he was when he was admitted but now he measures at around 48"-49" which is around 4'-4'1" tall.

All the way home, Evelio was laughing and making noises. He was playing with the sunlight, trying to wipe it off his Nani Carrie's leather backseat. When we got home this time, there was no freak out. Just a bigger child, happy to be home.

He was in a great mood all afternoon and evening. Had 1 small accident and then spent 20 minutes on the pot doing you know what. He slept all night other than me waking him up every 3-4 hours to use the potty so that he doesn't wet the bed. I'm trying to teach him that if he gets up at night he should try to go to the potty.

Today, I've been up since 6:15am and Evelio since 7:15am. He has been in a fantastic mood all morning (except when I gave him a haircut, during which, if he could talk, I'm sure he would have been throwing some choice curse words at me). He hates clippers. He became a little nervous and placed his hands over his ears when I vacuumed the living room rug because of the noise of the vacuum.

He has had one accident (#1) today, but that was on the run to the potty to do #2, which I am absolutely bursting with pride to say that he was taking himself to do while I was busy printing off -Birth Defect- notes for my -Human Development and Learning- class. I'm surprised I didn't lose my voice with how loudly I was praising him as he sat with his little poop-strain face while doing his business :).

Anywho, as you can tell I am one happy mama. I am so glad I have my baby back. He starts school on Monday, and until then he and I will absolutely be inseparable!

Now, back to my baby! Bye!

The Anticipation is Killing Me!

I am super duper overly excited for Evelio to come home!

His 2-day pass last week went AMAZING.

He was very well behaved, but very, very, very hyper. We had a sticky spot when we first got home. I have new living room furniture and a new desk in my dining room and apparently Evelio was thinking that this was not his house. He was shaking and crying and freaking out. After about an hour in mommy's bed watching "Fairly Odd Parents", he finally became curious enough to explore the house. We have glass-topped coffee and end tables. Evelio is not used to that either. It was so funny!

So picture this, he was standing in front of the TV watching "Happy Feet" and flapping and jumping away. At the same time, he was backing up a little bit with each jump. He eventually ran into the coffee table. He turned around while holding his little backside, (I'm sure the sharpness of the edge of the glass startled him and hurt him a little) and looked at the table with his eyebrows furrowed together. He slowly reached his hand out and touched the glass. He moved his hand around on the glass and then pulled it back and looked at it. He then touched his palm to his lips and then slowly moved it down until it ran into the table again. All the time he had this curious and focused look on his face. I was cracking up. I imagine that his mind couldn't understand why there was something solid there if he could see through it. It was amazing to watch him concentrate and learn about the glass!

Anyway, he was great while he was at home. I took him to the local spray park down the street (splash pad) and he absolutely LOVED it. He loves water.

 

He also did very well using the potty. He had two #2 accidents which I'm pretty sure were my fault (I gave him grapes, which gave him diarrhea). He also wet the bed one time during the night. But he did great with using the potty without having #1 accidents during the day!

 

Since he did well during pass, he gets to come home on the 26th! I don't think time has EVER moved this slowly! I just cannot wait!

 

We had his IEP meeting this morning and discussed his placement for this year. I am super happy that he will be able to attend school for 4 hours instead of 2 that he had last year. And. . . he gets to go to school on Fridays this year too! His new teacher, Mrs. Charitan, is very likable and funny and I love her already! Her room looks fantastic. She only has 3 other students in her class at the moment so Evelio will be number 4.

 

So here's to hoping that the 26th gets here in a hurry or I just might die of anticipation!