Monthly Archives: January 2014
So who won?…Not me! But I did put up a good fight at least…
I took Silas to the store least likely to call the cops on me for child abuse or neglect. As we pulled into the parking space I told Silas we were going for a walk. Once I took him out of the truck and put him down he hit the ground like a sack of potatoes. We went through the typical tantrum of not wanting to walk from the truck to the door of the store. I just stood there and watched him. People came and went trying to act like they were not paying too much attention to us. I could see and feel their beady eyes mean mugging us. I finally got tired of arguing with Silas in the parking lot after about 30 minutes and took him inside.
I made it to a more secluded area of the store and put him down again. He hit the floor like he was the victim of a drive-by shooting. I haven’t ever seen someone drop it like it was hot so fast. I assured people around us that he was fine and they kept on shopping. I tried so many different things to get him to walk with me.
He got the jelly legs real quick. Every time I would stand him up his legs would go all limp. I almost dropped him on his face the first time because I expected him to at least stay up for a second. I grabbed his hands and made him “jump” while being all excited and he just got louder. I am glad at the time I found it sort of amusing rather than annoying. After those attempts didn’t work, I walked away. My hopes that he would stand up to come to me were crushed when he started crawling 25ft in the middle of the store dripping snot and tears all over the place. I just sat down in the middle of the aisle and waited on him.
We spent almost an hour and a half fighting each other. In the end I figured he had had enough and put him in a buggy. I grabbed a few items and we left. He may have won this battle, but the war isn’t over. I will get him to walk in public with me.
Yesterday we decided to take a trip to the mall as a family unit. When we arrived at the mall Robert and I decided to once again try to get Silas to walk. This decision was mostly made because I had taken his stroller out of the truck and forgot to put it back in. I took Silas out of his seat and placed him on the ground. He immediately dropped to his knees and began to wail. I really wanted to pick him up because it just so happened I parked the truck under a tree where it was bird poo haven. He was basically rolling on the ground.
I tried multiple times to get him to hold my hand like he does when we go for walks at home but he wasn’t having any of that. He just kept putting his arms up so that he could be picked up. I tried reasoning with him but I am pretty sure he didn’t hear me over his own yelling. I was getting frustrated and about ready to pick up Silas. It was really bothering me that he was in bird poo. That is absolutely disgusting and I am a clean freak. Robert then offered his assistance. I continued to walk away to see if Silas would follow me. He did…but scooting across the poo covered ground on his hands and knees.
As I was almost to the door of the mall a family passed me. They saw Silas making a scene by the truck but they didn’t see Robert standing on the other side of the truck. They looked at me like what the hell woman! I just smiled and they kept walking and glancing back at me. Robert tried multiple times to get Silas to walk from the truck but in the end Silas won the battle.
Tear covered cheeks, a snotty nose, and outstretched arms met me a few minutes later at the door. I ended up carrying Silas into the mall and to the play area where he played for a while.
It is very frustrating to have a child that refuses to walk anywhere in public. We have tried so many different things on numerous occasions to get Silas to walk with us. He won’t even walk from the truck to the door of the house. I sat by the door watching him slowly scoot towards it for 45 minutes one day because I refused to pick him up and he refused to walk. He is by far the most stubborn individual I have ever come across in my life and that’s saying something because I am up there.
So, what have we tried? Let’s see…tough love, rewards, reasoning, persistence, compromise, ignoring, and more. We are at the point now to where we just do not know what to try next. I am going to talk with his therapists to see if we can have one of our sessions next week at a public place. Perhaps they have some technique or idea that we haven’t tried before.
Silas is fully capable of walking in public; he just chooses not to. There could be many reasons for him not wanting to such as an unfamiliar place, fear, sensory issues, and more. I personally feel that he knows if he pitches a fit long enough and makes a scene we will break down and give him what he wants. I think tomorrow I am going to take him to a store that has basically no one in it and tell the management what I am doing. That way I can take as long as I want and no one will think I am abusing Silas when he starts acting like a maniac.
We will enter into another battle and see who can outlast who. I do have a feeling I will eventually give up but I am hoping for the best. It is starting to get ridiculous that he still wants to ride in the kid seat of the buggy in Walmart or be carried if he can’t. I’m tired of people staring at us and making comments that he is a little big to be sitting there, though I don’t really care what others think. I will write again tomorrow when we return from the battlefield to let everyone know who won. Until then, stay strong…
Thursday was a tough day for not only Silas but me as well. Silas had his surgery that morning to remove the tubes from his ears. To start off with, we were almost late because I turned off my alarm on accident (go me!). Once we got to the doctor’s office which is only 2 minutes away, Silas knew we were there for him. He got mad really quick. We went back into the main room where they had me change Silas into a gown. He did not like this at all!
After he was changed and had a nice warm blanket on him we sat there and acted goofy. We played on my phone while nurses came and went asking a bunch of questions. One of the nurses attempted to put a blood pressure cuff on Silas. That was pretty funny because Silas kept ripping it off. He wasn’t having any of that. We sat there for a very long time because the doctor was running behind schedule. Around 9:15 the anesthesiologist came to see us. She gave Silas an oral anesthetic, well…we both did. I put Silas in that awesome hold that I mentioned in a previous post and she gave it to him. About 10 minutes later Silas was zoned out.
The nurse came and got Silas from me and he of course screamed the entire way to the O.R. After they took him I went out into the waiting room. About 25 minutes later I met Silas back in the recovery room. It broke my heart to see him lying there all hooked up to the stuff and knocked out. I knew he was fine of course it just sucked to see him have to go through all of this again.
The doctor came out and explained to me what he did since going in he wasn’t sure due to Silas not letting him look during the office visit. The left ear ended up not having the tube as he suspected. Everything was clear and looked good in that ear. The right ear still had the tube which he removed. The doctor went on to explain that the ear was badly infected and the fluid had built up and hardened. This was why the ear infections kept continuously coming back. The doctor cleaned out the ear and inspected. He said that the hole where the tube was should heal up within the next week and hopefully we will not have any more infections. Just in case, the doctor gave me some ear drops and the dosage in case the ear started leaking. We shall see. We have a post op appointment in a week. After he left I sat there looking at Silas.
It seemed like it took forever for Silas to wake up from the anesthetic. It took well over an hour, which I will definitely keep in mind if he requires it again in the future. This of course worried me…in the back of my mind I was thinking, he better freaking wake up soon or I’m going to freak out! Once he did finally wake up it was tough as I knew it would be. He was in a state of confusion and anger. Mostly he was angry because he couldn’t sit up or make his body do what he wanted it to do. He flopped around for a bit screaming before I put him in my lap. He calmed down some but was still pretty mad.
One of the nurses helped me get him dressed and put both of us in a wheelchair. They saw how floppy he was so they wanted to make sure I did not drop his crazy self walking out to the truck. Once we got home I sat Silas on the couch for a minute so that I could get him something to eat and drink. As soon as I took a step away he about fell off the dang couch. It was like watching a baby all over again. I sat him on the floor while he screamed at his body and got juice and strawberries.
We curled up on the couch and watched a million episodes of The Cat in the Hat Knows a Lot About That. It was hilarious watching Silas try to feed himself strawberries. He could pick them up after a few tries and then when he brought it to his mouth he could kind of make it in his lips but he didn’t open his teeth. He was trying to shove the strawberry through his teeth. I could not stop laughing. I pulled his jaw down for him every time so that he could realized he needed to open his mouth. He destroyed those strawberries. After about 4 hours the anesthetic fully wore off and Silas was fine. He hasn’t complained once or even touched his ear. Hopefully things stay that way.
It is a typical afternoon at my house. We are in the middle of ABA therapy with Silas and his therapist. There is also a new therapist shadowing his current one. So, there are two people in my house, other than my family, roaming around from room to room following Silas’ mad dashes to escape. The doorbell rings and I of course open the door to answer it. A guy is standing there nicely dressed with a briefcase and a badge clipped on his shirt that says “Learning A.R.T.S.” Apparently, our case worker forgot to let me know that there would be someone else coming today…great. He tends to do this often. Now, there are three people.
I am not a people person and I especially do not enjoy letting people I do not know into my home. Most of all I do not like these people playing with my son and trying to get him to “work”. Just about every day of the week I open my home to these therapists for Silas. I know the company that hired these people did a background check and fully trust these individuals, but it is still ever-present in my mind that I do not know what these people are thinking or capable of. This may just be the paranoid mother in me though. I am like that creepy nerd from “Hey Arnold!” staring at them when they are not looking. A force to be reckoned with at all times during the three hour therapy sessions…watching from the side like a hawk. Waiting…haha okay now I sound crazy. Ain’t nobody scared of someone my size…12 year old girls are not scary. It is really strange though to have someone else in your home every day.
Currently, the therapists are still trying to slowly build rapport with Silas so that he will quit running from them and ignoring them. I cannot help but find it amusing when I hear Silas go running down the hallway and a few seconds later there is a train of people following him. Sometimes I think he does it just to see if they will come because he stands at the end of the hall with his head poked around the corner watching for them to come. He plays a good game and is hard to get.
Today I thought I was going to lose my mind. Silas had an attitude with the therapists and decided that he was not going to do anything they asked or said. Just because Silas does not want to do what they ask does not mean they will not ask…50 thousand times! Every time they would ask Silas a question he would throw a tantrum. Rolling on the floor kicking and screaming, crying and just being ridiculous. There was absolutely no point in all of this because he is fully capable of doing what they asked. He was just being a little shit about it. I do not normally refer to him as a little shit…but honestly, that is exactly what he was being.
After listening to him be a maniac for 10 straight minutes I walked to his bedroom door where they were all at and cleared my throat. Silas immediately stopped what he was doing and looked at me. I just stared back with a look of death and he smiled innocently at me. Ugh! Then I went about my business. A few minutes later it started back up again. I hate days when Silas does not want to participate because he has this really high-pitched squeal that he does which drives me nuts. It is obvious he is smarter than he is letting on.
Silas is in the mindset that he runs the show. He has figured out that if he ignores us all eventually we will give up. And boy, he has some mad skills when it comes to ignoring us. I will squat in front of him and put my face directly in front of his face. He successfully looks past my head every single time. It does not matter what I am saying because he has tuned me out. I put my hands with his and place them on both of our faces as his therapist suggested…nothing. It is like I am not even there when he does not want to listen. I know he hears me though. He is not deaf, merely stubborn. Silas does get that honestly.
Eventually, the therapists give up trying to get him to do the activity he was so insistent on not doing. They move on to trying to get him to copy a 3D structure of blocks. All he has to do is place the same colored block on top of the other colored block just like the therapist did. I absolutely know for a fact that he can do this. I stand in the kitchen watching the therapists try to get Silas to do this task. I am quietly dying from laughter. Silas is such a terd! He was throwing the blocks and saying “uh oh!” trying to be cute to get out of working for them. One of the therapists asks me if he can do hand-over-hand…my response, go for it!
Even while the therapist had his hand on Silas’ hand, Silas still somehow managed to avoid stacking the blocks. That is quite impressive because the therapist is a big ole dude. The session continued on with Silas being…well Silas. He does some pretty hilarious things during the sessions. I am going to start writing about those as they happen so that I can look back on things and see how he is progressing.
To view more information about the company that provides Silas’ services click here.
As a baby, Silas seemed to consistently get ear infections. This was not specific to only one ear either. Sometimes he would have a double ear infection. By the time Silas was 9 months old the ear infections were so bad and often that he had surgery to place tubes in both ears. This is my sweet chunky monkey waiting to be taken back before the surgery.
Ear tubes are plastic and shaped like a hollow spool. Doctors suggest tubes for children who have repeat ear infections or when fluid stays behind the eardrum. A specialist (otolaryngologist) places the tubes through a small surgical opening made in the eardrum (myringotomy or tympanostomy). The child is unconscious under general anesthesia for this surgery.
The purpose of the tubes is to allow air to enter the middle ear, allow fluid to flow out of the middle ear through the tube and into the ear canal, clear fluid from the middle ear to restore hearing, prevent future buildup of fluid in the middle ear, and decrease the feeling of pressure in the ears which reduces pain.
Since then, the ear infections lessened for a little while but kept coming back. Every time I took him to the doctor they would prescribe me some antibiotic and eardrops to give him. This of course cleared up the leakage from the ear and lessened the symptoms but it seemed like the infection never truly went away. A few weeks and sometimes months later, the infection would be back again. It didn’t seem like the tubes were doing what they were supposed to do.
Last week we took Silas to the doctor because it seemed like his latest ear infection was hurting him really bad. She of course prescribed some antibiotic and eardrops. This time though, she took a swab of the leakage because I told her how it seemed like the infections kept coming back. Two days later she called me. She told me that the bacteria causing the infection was too strong to be treated by the medications Silas has been being prescribed. That explained why the ear infections kept coming back. She gave him new medications and since then his ear infection seems to be clearing up.
This morning we took Silas to see an Ear, Nose, and Throat specialist. Once again, we explained Silas’ medical history and everything that has been happening. Then it came time for him to examine Silas. This was not at all fun for anyone in the room. Silas is a very strong little boy when something is happening that he completely does not want to participate in.
I sat in the exam chair with Silas in my lap. I held down is arms while Robert held his legs and head in place. The doctor was having one hell of a time trying to look into Silas’ ears. I actually found it amusing but felt really bad for having to restrain Silas like that. He was screaming at the top of his lungs and fighting to get free. He is a pretty good escape artist. After the first attempt, the doctor had me change positioning with Silas.
This time I put Silas’ legs in between mine with him sitting on my lap. His right arm went under my left arm and behind me. My right arm held onto his left arm which controlled his upper body. My left arm held down his head and shoulders to my chest. Sounds confusing I know, but it worked. As much as Silas struggled, I had him locked in place. This will definitely be a move to remember. Perhaps this may be useful for you, who knows…
After the exam was complete, the doctor recommended removing the tubes. This would enable him to see if there was any buildup in the ear. He said he would clean out the ear and look into and around the ear drum. If there is buildup in the ear drum he said that he would place new tubes into Silas’ ears. If there is no buildup, he said that we could try going tube free for a while. Robert and I are both hoping that Silas can go tube free for a while. This would let us see if perhaps he could be okay without the tubes.
Silas has the surgery just mentioned next Thursday. It’s not going to be a good experience for him at all since he has to once again go under anesthesia. The procedure itself takes only about 30 minutes. The longest part is once he comes up from the anesthesia we have to stay an hour or so for him to be observed. If you have never experienced the wrath of a child waking up from that I hope that you never do. They do not know where they are or understand what is going on. Last time, he was super groggy and pissed off at everyone. He cried and screamed the entire time we were there. He looked like a little red hulk with veins popping out everywhere. I was hoping to not have to make him go through that again. But, here we are and time is approaching quickly.
I hope that this time, the ear problem gets solved so that is one more medical issue we don’t have to continually face and try to solve. This is a long and daunting process but we will figure out all of these medical issues. Perhaps that will lessen the symptoms of autism he has. Until next time…
Just found this blog and thought I would share. I was induced and augmented with the birth of Silas…
A study published in Obstetrical and Gynecological Survey this week which analysed birth and educational records has shown that children born to mothers who were induced, augmented or both had increased odds of having autism (Gregory et al 2014). As the authors themselves point out, we always have to be a bit careful how we interpret research of this nature, but the finding that a child born to a woman whose labour was induced and augmented had 23% higher odds of being diagnosed as having autism than a child born to a woman who didn’t have these interventions is one that should perhaps get our attention. Especially as both of these interventions seem to be used so casually these days, despite increasing evidence that they can cause a whole range of short and long term issues.
I want to be very clear about a couple of things though, because the…
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What would you do if you were unable to communicate with those around you? Imagine you do not know how to say the things you want, need, or feel. If you are hurt you do not know how to tell someone you are in pain and where it hurts. You just simply cry and the person is left to try to guess what is wrong with you. Can you understand how frustrating that would be?
Many people on the autism spectrum suffer from language delays and disorders. Silas is one of those individuals. The typical “milestone” for a child Silas’ age is as follows:
Between 3 and 4 years
Can tell a story; sentence length of 4-5 words; vocabulary of about 1000 words; knows last name, name of street, several nursery rhymes
This is where Silas currently is:
Between 1 and 2 years
Says 2-word sentences; vocabulary is growing; waves goodbye; makes “sounds” of familiar animals; uses words (like “more”) to make wants known; understands “no”
Silas’ vocabulary is at about 50 words or so. He knows a few signs such as more, all done, and thank you but he rarely uses them. Within the past 6 months he has definitely expanded his vocabulary but we still have a long way to go. Any time he uses a new word we throw a party about it. Seriously, there is jumping and shouts of “Hooray Silas!” along with lots of clapping. I have become quite the cheerleader because I want to show Silas how exciting it is to hear him speaking and learning. I believe if he sees how happy and excited I am when he does that perhaps he will try more. I try to positively reinforce any time he does amazing things.
Not too long ago he finally identified me as “mommy” in a picture. That was so exciting to me and I made a huge deal about it. It took over 2 years before I even heard mommy. Silas still doesn’t call either Robert or me by daddy and mommy but that is okay. I know that he knows who we are.
I can see when he is trying to tell me things sometimes how upset he gets when I don’t understand. I make it a point to absolutely stop everything I am doing and listen very carefully to what he says. Usually I can make a good guess and figure out what it is he is trying to say or ask for. I hate to see him upset about things. I feel that we are lucky to even have the amount of speech we have because there are some children that never end up speaking.
There are so many different factors that can influence whether or not a child will learn to speak. There are even just as many things that can be done to help “foster” communication growth. The following website provides a lot of good information about speech.
We used to take Silas to speech therapy and he seemed to be doing okay. After about 6 months we stopped taking him because of the start of his ABA therapy. If I had the time in my day to be able to take Silas back to speech I definitely would. I know that someone that has been trained could figure out the best way to help Silas learn and speak. Meanwhile, we are working on incorporating the PECS program with Silas. PECS is the Picture Exchange Communication System. To help Silas put meaning to words and be able to better tell us things he can use pictures of things to show us. This has proven to be a tough item for Silas considering he continuously throws the pictures. I am not sure if we will stick with this program or not. I am always looking for better ways to help him because obviously not everything will work for him.
I narrate every part of my day to Silas. No detail is too small to be explained. If we are playing with a toy together I explain what we are doing and describe as much as possible. I read to Silas and just talk to him. The conversation is always one way but that doesn’t bother me at all. I see him looking at me and listening so I know that he is taking it all in. I almost always get crazy looks from people in Walmart as I explain everything to him. Sometimes I hope that the reason he doesn’t talk is just because he doesn’t feel the need to; not because he can’t. Perhaps one day he will just start talking my ear off in full sentences and blow me away. Who knows…?
If you have a child that is able to communicate easily, be thankful for that. I know most parents cannot wait until their child starts talking. Then once their child does they wish the child would stop talking because they never shut up. I have heard so many people say this. It really makes me mad and my response is usually telling them some rude comments about how they should be thankful. I understand the frustration with children that ask a thousand questions and such but what if they never said anything? Then what would those same parents do? Usually, I get no response from the parents after all of this is said. Either I struck a nerve or they actually are doing as I intended and are truly thinking about what I said.
I don’t mind singing the alphabet a million times and cheering like crazy at the end of it. Silas is learning to sign all of the letters as well. Reading the same books over and over and over again until I have them all memorized is nothing. I can read you entire stories without even opening the books. There are charts on my wall with shapes, colors, the alphabet, and numbers. There are pictures of family members printed out on cards with names in hope that Silas may learn who they all are. Repetition in everything with lots of talking on our part. I know that in time he will be able to speak clearly and communicate his needs with us. I’m not hoping for a person that does speeches for a living; just back-and-forth communication. Until then, I will continue to research, read, and do all I can for Silas. Soon we will be seeing an Ear, Nose, and Throat specialist to check on why he keeps getting ear infections since he has tubes. Also to see if he is actually hearing correctly. I am also trying to get Silas to see an Ophthalmologist to check his vision and perception. Sooner or later, we will get Silas good and healthy so that he can learn and grow.
It’s just really tough not being able to communicate with him…I’m sure after reading all of this you could imagine. Now perhaps, you see why some parents make such a huge deal of their child saying “Hi”. It’s those small things that give us hope.