Monthly Archives: March 2014

Shopping for Toys

Silas was leading Robert and I around Toys R’ Us. This is the first time that he has walked in a store with lots of people. He was just roaming around going up and down aisles. Even when people were around he didn’t yell at them or even really notice they were there. Super proud of our baby!!

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Mall Walking

Brought Silas to the mall Sunday morning while no one was there except the mall walkers. Nothing was open at the time. As you can see in the video he just was walking around like he owned the place.

Tired of Stinky Diapers!!

The more smelly diapers I have to change, the more I look forward to potty training. Unfortunately, that does not look like a near goal in our crazy adventure. Silas is getting so big, strong, and oftentimes short-tempered. He is only three and is already over half my size. I envy my friends on facebook, because I have no actual friends (sad I know), that post things about how their not even two year old is using the potty. I want that so bad.

Can you imagine what it feels like to get disapproving looks from people when they see your child is still in diapers? I have come to accept these looks but as I have said numerous times, it still hurts. I think all moms and dads want their child to be like every other child. Sadly, all of us with children on the spectrum know that will never happen but that want is still there. Still burning like fire with gasoline that won’t burn out.

Some of you may be wondering, why is it so difficult to potty train a child on the spectrum? Here is a short explanation from TEACCH

http://teacch.com/educational-approaches/applying-structured-teaching-principles-to-toilet-training-susan-boswell-and-debbie-gray

Even in typically-developing children, toilet training is often a difficult skill to master. While the child may have good awareness and control of his body, there are other factors… social factors… that determine how easily toileting skills are learned. Small children do not feel an intrinsic desire to become toilet trained. Rather, they acquire this skill in order to please their parents and to gain the social status of ” big boy” or “big girl”. This social motivation is a critical factor in determining “readiness” for toilet training.

How might the characteristics of autism contribute to a child’s difficulty in learning to independently use the toilet?

  1.     The child’s difficulty with understanding and enjoying reciprocal social relationships would certainly interfere with this process. While other 2- or 3-year-olds might be proud of their “big boy pants” and might be happy to please their parents, this type of motivation is rare in a child with autism.
  2.     Given the characteristic difficulties in understanding language or imitating models, a child with autism may not understand what is being expected of him in the toilet.
  3.     A child with autism typically has significant difficulty organizing and sequencing information and with attending to relevant information consistently. Therefore following all the steps required in toileting and staying focused on what the task is all about are big challenges.
  4.     Further, the child’s difficulty in accepting changes in his routines also makes toileting a difficult skill to master. From the child’s point of view, where is the pressing need to change the familiar routine of wearing and changing a diaper? After 3, or 4, or 6 years of going in the diaper, this routine is very strongly established.
  5.     A child with autism may also have difficulty integrating sensory information and establishing the relationship between body sensations and everyday functional activities. Therefore he may not know how to “read” the body cues that tell him he needs to use the toilet. He may also be overly involved in the sensory stimulation of the “product”— smearing feces is not uncommon in young children with autism. The child may also be overwhelmed by the sensory environment of the toilet, with loud flushing noises, echoes, rushing water, and a chair with a big hole in it right over this water! A further consideration is that the removal of clothing for toileting may trigger exaggerated responses to the change in temperature and the tactile feeling of clothes on versus clothes off.

 

I do not even know where to begin with Silas. The whole thought of where the hell do we start is blowing my mind. He is starting to go longer periods between going in his diaper and stays dry all night. On the other hand, he has not learned how to remove clothing. I do not think he understands what is expected. He will not have anything to do with the toilet. At my wits end…I’m discussing a plan with his ABA therapists.

Last night, just out of curiosity, I introduced him to his first pair of “big boy pants” with Mickey Mouse on them thinking maybe he would like them. He ABSOLUTELY HATED THEM! It was a fight to even get his dang legs in the holes much less get them pulled up. I was using my elbows, chin, knees, whatever I could to push them wild flying legs into the holes of those stupid underpants. I won the fight and got them on Silas but he won the battle. Not even 10 seconds of being in them he was out of them again. I’m not giving up though. I refuse to change diapers for forever. He may not be ready right now, but when he is…I’ll be holding them big boy pants and throwing a party!

Hey, if I can get him to wear clothes surely I can get him to pee and poop in the throne all by himself…right? I’m supermom!

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WTF is going on here?!

I’m looking at this guy like “What in the hell are you doing?…NOTHING. And that’s the problem.”

It is very frustrating and angering to me that someone who is supposed to be an ABA therapist could be so nonchalant, uncaring, and unprofessional about things. One of our therapists, the male, has been performing his duties far below subpar. He hasn’t even been coming close to acceptable.

First of all, he isn’t running the programs correctly, if at all. I know this for a fact because I am a very involved parent and pay close attention to what is going on during therapy. I have been watching how the other seasoned therapist, who trains all the new therapists for the company, has been running the programs. I ask lots of questions to make sure I understand why things are being done the way they are.

When I correct the male therapist on how the program should be done he blatantly ignores me and continues doing it incorrectly. He does not keep Silas involved or maintain his attention when he is involved. I have noticed on numerous occasions he sits there and just watches Silas play instead of playing with Silas and building rapport; which he so obviously lacks. I have also caught him playing on his phone during shift which is a big no go.

Over the past few weeks this male therapist has been talking about trying to find another job. More and more he has been leaving early from his shift for various reasons. Last Thursday all he could talk about was that he got another job and put in his two week notice. He also lied to me. When he arrived on shift he told me that he had gotten approval from his boss to leave at 5:30 to pick up his daughter. I wouldn’t have cared even it were true because life happens. But when I spoke to his boss yesterday about his performance recently I mentioned this. His boss had no idea he had been leaving early because on his timesheets he has been putting that he was here the entire shift every day!!!

The way things are supposed to go is if one of the therapists has to leave early they are supposed to clear it through their boss and the company. Then, their boss will call or text me. This hasn’t been happening. This therapist is currently here and I have been taking detailed notes about what he is doing during shift. Like, minute by minute action. That way I can clearly explain to his boss why I do not want him to come back. He only has 3 sessions left with us but I do not want nor need him wasting our time.

It is very difficult for me to be civil with someone who is clearly disrespectful and dishonest. In fact, he isn’t doing hardly anything as it is right now so I’m about to tell him to leave. Can you see how my temper may be heating up? 

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First Friend Birthday Party

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Today Silas attended his first birthday party for a friend. The party was at Mountain Mike’s Pizza. The place had an entire room with different kinds of bounce houses and slides. I thought for sure that Silas would love it; I was wrong. It wasn’t so much the inflatable wonderlands that bothered him. It was the loud 3-5 year olds running around and crowding him. I was able to get him to go down the slide with me twice before we gave up on it. The last time it was a tear fest.

Luckily, there were plenty of arcade games there. Silas found one of those claw machines and became entranced with it. He loved watching the claw move back and forth. His favorite part was getting to say ready, set, go and then push the button to make the claw drop. We may not have been able to get any of those stuffed animals out of there but he didn’t care. We spent the majority of our play time at this one machine, and that was quite alright.

When it came time to eat pizza we started off at the kids’ table. This didn’t last long. Silas was quick to get upset and so we had to move to a booth a little bit away. He ate and paced back and forth in the corner happily flapping away, oblivious to what was going on around him. Silas was happy with this but it was rather saddening for Robert and me. It is tough seeing all of the other children doing what children do at birthday parties and then see Silas, being Silas. I know he has no idea of the concept of what a birthday party is so we have to keep that in mind. That is still tough though.

Silas soon started to get upset and restless as we waited for his friend to open her presents. I thought that by now I would be used to people staring at us when Silas gets loud and whines. Nope, still bothers the hell out of me. All of the other parents that were there have children that attend the same daycare as Silas so they all know he is autistic. The birthday girl is actually the daughter of the woman that runs the daycare. Some watched as I tried to calm Silas and others tried to act like nothing was happening.

We waited long enough for the birthday girl to open the present from Silas and then said our goodbyes. Even though the experience was far from what I hoped it would be for Silas it was much better than how I expected it to go. As I have said before, I no longer have high expectations for how situations might play out. I try my best to take it blow by blow. It still hurts though. This has been a tough experience, not just including today, and will continue to be. As long as Silas has both Robert and me I know he will pull through just as he always does. We all will. 

If it doesn’t challenge you, it doesn’t change you.

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Today was my weekly team meeting with the ABA therapists and case manager. Silas has mastered many of the skills he has been working on; which in my opinion should have been marked off a long time ago considering he already knew most of these items. Usually, I am pretty quiet at these meetings but not today. Today I told them I want them to push Silas. Actually challenge him and I do not care if he gets mad and frustrated. That is the point. In order for him to grow and continue developing he needs to be pushed out of his comfort zone. 

I am to the point now to where I am tired of everything being what Silas wants when he wants it. I am tired of his non-compliance. If I tell him to do something I know he knows how to do and understand then he better do it. This is typical toddler behavior piled on top of autism. I know this is going to cause lots of screaming, whining, and crying but that is okay. I am prepared for it.

As I am writing this Silas is participating in copying 3D objects that his therapist is making. Silas is not doing what he is supposed to do. He is saying “Good job Silas!” and since neither the therapist nor I will cheer for him he is screaming. Silas ran over here screaming and stood in front of me. Since I just ignored him he ran off to his room to pout. 

I have now realized that the majority of tantrums Silas throws are only for me to acknowledge him. Since I have been ignoring him and not even reacting to him in the slightest way the tantrums are decreasing in number. The only problem with this is they are increasing in length and viciousness. He has begun hitting harder, throwing things, and trying to pull/knock things over. I guess it is a good thing that I do not own nice stuff. 

My patience is slowly running thin but I always think to myself that these behaviors will not last. My willpower is stronger than his. The purpose is to shape Silas’ unacceptable behaviors into acceptable ones. To help him learn self-care and be able to function without the constant need of an adult. I am still enjoying every little moment with Silas. Now there is just an amplified volume and more physical contact every so often. The ability to ignore these behaviors has actually come to me quite easily. Hopefully, it will get easier for daddy to ignore these behaviors better too.  

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