Tag: parenting

E’s Mad Trickery Skills

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Sometimes when I complain about E’s antics, I get advised to watch him better. I can’t help but laugh, manically. Clearly they don’t know my son. E is the master of the long con. I was folding clothes in his room once and I found multiple screwdrivers that had gone missing hidden throughout his room. Well, you might say, don’t leave screwdrivers out. Yeah, I know. I don’t. You know those times when you are doing something, like putting batteries in a toy or tightening something around the house , and you put down the tool for a moment to do another part of the project? Then you go to pick it back up and it’s gone and you think, now where did I put that? Well in my house, things I credit to faulty memory are actually E storing up supplies for his long cons. The screwdrivers were an attempt to take his door off the hinges. He will steal a marker when I am looking down while drawing and hide that only to take it out months later the minute I look down or go to the bathroom and color all over the walls. People think I am exaggerating. But then they experience it for themselves and are blown away. He is most intelligent and always thinking at least 7 steps ahead.

My sister and brother in law lived with us for a year. My sister kept wondering where certain frozen items were going. She thought maybe her husband ate them or she thought she had purchased more than she really had. After they moved out I was trying to close the fridge and it wouldn’t quite seal. I kept pushing and then realized there was a plethora of frozen boxes hidden behind the drawer. E had been stockpiling the food he liked.

Another thing that is difficult is that he is inconsistent. You think he has grown out of a behavior because its been 2 years since he last flooded the bathroom, so you are not keeping an eye on him anymore when he goes to the bathroom. But then you see water leaking out from underneath the door and realize he turned on the faucets and locked the doors.

Last night I sent E up to his room to put a new shirt on. He came down fairly quickly but he had something orange all over his hands. I realized it was orange acrylic paint. I went upstairs and it was all over the walls and all over the carpets. A has paint in her room, but she usually keeps it locked. He’s like a raptor and waits for the weak spot and pounces. He waits for the one time that she forgets and grabs it and hides it.

I cleaned up what I could so it would not spread anymore, but I will have to repaint and get new carpeting upstairs. After I was done I leaned against the wall to relax for a second and I saw there was also a hole in the wall. He also managed to bore a hole in the wall in that time period with a teeny tiny screwdriver that we use to unlock doors. I thought that screwdriver was also locked up. Wrong. The hole was a good inch. If I were not so frustrated, I could almost be proud of how fast he accomplished all of that. If you think maybe I lost track of time and he was up there longer than I realized, I didn’t. I checked the movement on the camera from the living room from the time he went up the stairs to the time he went down. Four minutes. I have been tempted to get a go pro camera for him and just put it around his neck so I can just watch him live as he does things, and be alerted then I don’t have to follow him around the house. I have cameras in almost every room, but it’s hard to toggle back and forth every time that he leaves a room.

I hope that someday E is able to use his powers for good. Maybe work for home security or the CIA and impart his insane stealth and sleight of hand skills on others. At that point, I will feel okay. Like all of this was not in vain. In the meantime, I will be here practicing my patience.

My Rant

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Having a child with a disability is difficult. They do things differently. They are in a world that is not built for them. It’s heartbreaking having to constantly adjust E’s behavior. I feel like I am telling him that what he is, is not okay. It’s a constant struggle. When people react unkindly it’s also hard watching A witness this. She’s so protective of her brother. Especially seeing it coming from an adult. It’s scary for her.

Living this on the daily, I try to be above it and move on. Sometimes though, it just makes me mad.

I’m going to share a story of something that happened recently. I write this, yes, to vent, but mostly to educate. I choose to believe that the interactions that we have with people are due to ignorance versus just being a bad person.

Travel brings out the very worst and the very best in people. I have had people who I want to saint after my trip because they were so amazing. Then, there are the others. The ones that make things miserable for you.

We very recently travelled to Spain. E has flown a lot, and many of those flights are 5-6 hours. I was not too worried about him being on the plane for this trip. He gets grumpy but, for the most part, he is manageable.

Our second flight was 6.5 hours long. Pretty quickly after boarding, a baby started to cry. Then another. Then another. I usually put Ethan’s headphones on and he is able to tune it out and be okay. This time, he was feeling a little more stressed, and he was not able to tune it out. He is very sensitive to sound and has a very hard time with that frequency.

We have certain things that we do to help calm him down, but it’s not perfect. He will still scream out. For the first two hours of the flight, there was a baby crying almost the whole time. It was very stressful to E, but I was proud of him. He was able be redirected and calm himself. Every once in awhile though, he would still break and cry and I would talk with him and get him calmed.

Because speech does not come as easily to him, in times of stress or strong emotions, sounds come first. Grunting, crying, etc. Sounds more typical of a baby or small toddler.

Every time he would cry out, a few people around us would turn and stare. I tried to ignore it and just keep on helping him. After awhile, he was able to fall asleep for a few hours.

When he woke up he was very happy. He was giggling and making noises. Clapping his hands and just in general really happy. I was surprised that those same people were turning around and staring once more. I chose to once again ignore them, and did not try to muffle Ethan’s behavior. There were a few times he got too loud and I told him he needed to keep his voice down. I tell him it’s okay to be happy, but we have to be a little quieter with people.

Side note: I am a firm believer of not taking E places where he cannot reasonably exercise the behavior needed and follow the rules. Like a movie. He cannot sit still and he would get up and run around and that would disrupt the people. Not every activity is one that E can do. So with that said, E was making noises, but he was no louder than anybody else on the plane. People were talking about the same volume, animated in conversation, the babies were crying louder. Back to my story.

When the plane started its descent, the different babies on the plane started up again. Landing is hard on their ears and it’s pretty typical. All of the babies crying at once set Ethan off and he started to cry too and cover his ears. Once in awhile he would shout out louder, and I would tell him to calm down. It was not continuous crying non stop, but he was clearly having a hard time. About 10 minutes into the descent, before the flight attendants had to sit down, one of them came over to me.

‘You need to keep him quiet’, she told me. ‘He is disrupting everyone on this flight.’ ‘He’s autistic,’ I said, ‘he doesn’t understand.’

She rolled her eyes and moved on. A cross between embarrassed and annoyed.

I would understand her being frustrated if E was out of control the entire time. If I were ignoring him while he was screaming. If he was excessively louder than the others. None of these were the case.

Autism is often called a silent disability because it’s not as obvious from the outside. If the same behavior were coming from a child with Downs Syndrome, there would be more tolerance because his difference would be more obvious.

On the flight when E was sleeping, I was watching the movie, ‘ I am Sam’. A popular movie. A heartwarming movie. I saw so much of E in Sam. So many of the behaviors that Sam exhibited when he was excited, E had on the plane. People love to see these movies, but when they see somebody like Sam or E out in the real world, there is no tolerance. There are just so many assumptions. Even when people know he is autistic. ‘I still must be spoiling him, or not properly disciplining him. I am not dealing with his behavior correctly.’ Because he can literally understand the words coming out of my mouth, he must just be pulling one over on me and not listening. All of those assumptions are untrue. E’s whine might come off as the sound of a child who is angry or spoiled and wants their own way, but it’s not. He cannot express himself properly and that is his first go to. He lives in a world where he is constantly overstimulated. His brain works differently than the typical functioning person.

I don’t expect everyone to understand autism. I don’t even expect everyone to be comfortable with it. But I do expect tolerance. I do expect that you stick to your own business and don’t criticize what you can’t understand. It is hard enough without all of this input.

I don’t understand how people think that they can discipline the autism out of my son. Like them telling him to listen, will magically make all of his struggles go away. Like I have never told him to listen.

When you see someone acting strangely, spoiled, or whatever, do not assume that you know the whole story. Even if you do know some of the story, unless you are living it, you can’t understand it. This is true of so many things, not just autism.

Autism is not what you see on tv only. It’s not just quirky with savant like skills. It is a very real disability that affects so many other things. For E this includes, basic motor skills, drooling and spitting, aversions to clothing, inability to regulate emotions or basic executive functions. Anxiety, ocd, adhd. He also has seizures, very common with autism. Partials. When he comes out of them, often times he’s scared. He just was stuck in this seizure unable to move so he’ll cry out. He’s not just being bratty.

I love my son fiercely and will protect him at all costs. Spread awareness. If you’re with someone who is making judgements, speak up. If you find yourself making assumptions, remember there’s always more to the story. The child might seem bratty but maybe just maybe, there’s more you don’t understand.

Hoping For What?

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As humans, I think we are designed to look for the light at the end of the tunnel. We gear up all the energy that we have, get a running start, and do everything we can to get to that light. But what happens when that light is not as visible? What happens when there doesn’t seem to be an end in sight?

I’ve been having meeting after meeting lately while we prepare to transition E out of Early Intervention and into the next phase of services. Part of this is a Future Planning Meeting, where we talk about what my hopes and goals are for E. I remember the meeting last year. I was optimistic. I had heard so many success stories about kids who after a year of therapy, their progress really took off. The speech kicked into place and things just got easier. When E’s third birthday rolled around, I remembered that meeting and I felt a loss all over again. A loss for all the hopes that I had for him in the past year. My original hopes were adjusted when he was diagnosed, and I had acquired new hopes. E actually has progressed. He has made a lot of changes. But as any parent of a special needs child knows, with progress, comes new difficulties. E becomes more aware of his environment. E becomes more anxious and sensitive to those things around him. E becomes more fearful. E becomes destructive as he learns to explore his environment.

As he has learned to say certain words and babble I find myself so excited for him. So excited that he is learning how to form sounds, and say words that are functional. E hears a door open somewhere in the world; on the tv, upstairs, in the neighbors house (That E Boy has supersonic hearing when he wants to). He says “door opennnn”…. I get so excited that he is aware enough to notice that the door is open and to say that phrase. I start to think, “Wow he is going to talk. I am so happy for him! Things are going to get easier.” But then that excitement fades as it stays the same. The same standstill. Last June, he imitated his first word, I was elated. A year later he does not imitate that word anymore. He does not imitate more words. He imitates a different word. I am ready for the progress, but it seems to just be parallel progress.

Preparing for my next Future Planning Meeting, I thought, “What are my hopes”? The meeting came around, and they asked the questions. “What is E doing differently this year? What has he overcome? What are his strengths”, and lastly, “What are your hopes for him?” Adjusting what I want, I told them I don’t have specific goals. My hope? For him to be happy.

Having a child with autism, it often seems suffocating. I get to a breaking point where it seems I can not stretch anymore, but then against all odds, I do.

Today, I heard a crash from the basement. I went down to find E shattering an heirloom. Picking it up again and again. Smashing it into thousands of pieces. The one thing I had that had been passed onto me from that grandparent. My heart broke. I was devastated. I can tolerate him pouring fruit loops all over the floor. I can tolerate him ripping a key off of my keyboard. I can fix those things. What I can’t handle? Him destroying something so irreplaceable and special to me.

Hope can be dangerous when you are dealing with autism. Every child is so different and I have no idea what to hope for. I hope that I can handle the next year. I hope that I can be a good parent. I don’t hope for things to get easier, and I don’t hope for progress. I want it. But if I hope for it, I don’t think I can handle the pain from that being crushed. Again and again.

Will He Talk?

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Will my child ever talk? It’s a question that I’ve obsessed over for the last year. At the beginning, I thought about it compulsively. I would ask anybody and everybody. I wanted somebody to tell me that yes, he would talk.

We talk a lot in his appointments and therapies about progress. About E’s individual progress. That his timetables are different. That I can’t compare him to others at his age, but instead compare him to himself several months ago. Example. Several months ago, he was only babbling in vowel sounds, now he has been able to add consonants to his babbles. At the beginning, I tried to be patient with his progress. With his progress in OT I was patient, but with speech.. not so much. I always wanted to know if certain progressions meant that he would start talking in x amount of time. ‘If he is making those movements with his tongue, did that mean that he would for sure be talking by 3?’ I had to know when he would talk.

Several months back, I had just finished touring an Autism Center for E. I asked my question to the director. ‘Will he talk? Have you had children like E come through who end up with functional speech by Kindergarten?’ Her answer was the same as always. ‘You know autism is a spectrum. You know every child is different.’ Frustrated by the lack of knowing once again, I started thinking about why E talking was so important to me. What did it mean to me? What is my job as a mother? To make sure my child is safe, loved, and happy. So what if he doesn’t talk? What does that mean? Does that mean he can’t be happy? Does that mean he can’t be loved? No. I realized that me wanting E to talk, was me hanging on to the last shred of hope and normalcy for E. If he talked, somehow his autism wasn’t as serious. He could be one of those miracle stories that you hear about. Who seemingly grow up with no traces of autism left. In that moment, E’s autism finally sank it. With it came complete love and acceptance for my boy and what he was capable of. As long he was happy, that’s all I realized I really cared about. The fear over that question finally melted away. Whether or not he talked stopped mattering as much.

Do I still want him to talk? Yes, but now the reason behind it is different. I want him to talk for what it will do for him. I want him to be able to express himself. I want him to be less frustrated.

There are still days I ask that question and still days I get frustrated. But, now they are fewer and far between.

Measuring up.

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Motherhood is tiring. I’m not referring to the actual mothering part of motherhood. I am referring to the judgment. The rules.

C-Section vs. Natural

Formula vs. Breast

Organic vs. Not

Wooden Toys vs. Plastic Toys

Co-Sleeping vs. Crib

Sleep training in general.

The list is infinite.

What inspired me to start this blog was that I always felt that I was on the wrong side of parenting. I was never parenting the “correct” way. It took me awhile to realize that there is no one correct way. The correct way is what works best for you. I’m of the belief of, why try to be a second rate imitation of someone else when I can be first rate of myself?

A was a c-section baby. Her birth was traumatic. I was in labor for 26 hours. I was bleeding. A lot. My baby was in distress. It was time to intervene. They wheeled me away to the operating room. “It won’t hurt.” they told me. “You will only feel pressure.” They were wrong. I felt pain. I felt cutting. They got A out in about 3 minutes. Then because of the pain, they knocked me completely out while they stitched me up. I don’t remember very much about my baby being born. Am I sad about that? Yes. I wish I remembered more. More important though, my baby and I were healthy. I am much happier about that.

A few months after my baby was born, I was telling someone about my c-section. They stopped me and said “Wait…was it really necessary? Did you have to have it?”

“No.” I thought, “I just wanted to get cut open for fun.” Were they crazy? Of course I had to have it.

I was telling somebody else another time. My story was met with a deep sigh. “Oh man….why do doctors push so much for c-sections? I am POSITIVE you would have had your baby naturally if you had just waited. The body knows what it’s doing.” “Well, actually…” I interjected. They continued, “ They induced you too soon.”  “I was already over a week late.” I told them. Another smug look. “Well, how do you know that was your actual due date?” I was getting frustrated with the conversation. “It was necessary, and it saved mine AND my baby’s life!”

I was expecting empathy from people, but was instead getting shamed. As if I didn’t try hard enough.

“You’ll try for a natural one though next time, right?” people always added.

I actually wasn’t sure if I wanted to go through that traumatizing process again, and I definitely didn’t see where it was anyones business if I did or didn’t.

I learned to keep my mouth shut. I would see people’s Facebook posts bragging about how they had their baby naturally. How was I less of a woman? Just because my baby was cut out of my stomach? “Do you ever wonder what it’s like to actually give birth?” people would ask. “Well. I’m pretty sure what I did was childbirth.”

It was heroic to have a baby, but only if you did it the “right way.” Apparently, 26 hours of labor, almost dying, and then having a major surgery, wasn’t heroic enough.

A was also formula fed. I expected feedback on this one. It is very important to a lot of people. It was very important to me as well. A was breast fed for the first little while. For many reasons, I was not able to continue it.

There are articles. Articles informing formula feeders of the damage that they are doing to their kids with their selfish choice. Lowering their IQ’s, increasing their risk of cancer, robbing them of the amazing bond that can only be formed with your child through breast feeding.

I believe breast milk is the first choice. I believe that the mother’s antibodies are passed through the milk and do help the baby’s health. I believe that there is a bond that is formed through breastfeeding.

However, I also believe that breastfeeding does not always work. I believe that we have a great alternative. I believe that there is a bond that comes from feeding your baby with a bottle. I’ve felt it.

As hard as it was to get up with my babies in the night, I loved sitting there feeding them. Watching their faces. Watching them drink and fall asleep in my arms again. As hard as nights are, I feel like that is how I built my bond with A.

I don’t like that is it is hard for women who breastfeed. I don’t like that people feel like they have to hide it. I also don’t like that it is hard for women who formula feed. We are arguing over the best way to love our babies. It’s so absurd.

I wish both methods of feeding were more supported, and that we didn’t argue so much about what is best for our babies. No situation is alike and what is best for one, is not necessarily best for another.

I hated feeling guilty checking that box on the well-child check up forms that said my baby was formula fed. I hated apologizing to everyone about why I was formula feeding my child. I hated that every time A got sick, people would point out, “well, she is formula fed.”

What I have learned from being the “atypical” mother at times, is just how important it is to support others and not to judge. I definitely judged. In my frustration with feeling judged, I judged back. What makes us all so wonderful is how different we are. The best piece of mothering advice I received was this: I was asking for advice on potty training A. I told her that this book told me to do it this way, but I just didn’t know how I was going to make that work with my current situation. She said, “ Don’t do it. The best method is what works for you. If taking a longer time to potty train works for you, then do it. If a shorter method works for you, then do it. That is the best method.”