Tag: motherhood

The Post in which E disrespects a Founding Father

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I love history. I try to learns as much as I can about the past by reading different varieties of history books. I am an avid reader and the last 6 years or so, I have been into mostly non-fiction. I feel that reading about our past, helps us understand our today. Whenever I’m reading a political biography, a former president or political figure, I am struck by how similar things are to now. As I am reading certain situations, I think, yep that is happening today. I literally could insert names and it would be a news article from today. I’ve learned that human nature doesn’t change. We go in circles. We think we are super progressive, but we are just living the same thing over and over again with different players and different means. Alexander Hamilton might not have had twitter, but you know what he spent all his time doing? Writing letters. Sometimes anonymous, sometimes signed, sometimes set up to look like it was from someone else. They would be posted in newspapers. That’s how the political storms played back and forth. Jefferson vs Hamilton writing anonymous editorials back and forth. Hamilton’s children said sometimes they wouldn’t see him for days. He was locked up in his office writing letter after letter after letter. Not just to newspapers but to friends and such. We have always needed something to do with our hands. Knitting, cards, crossword puzzles. Now it’s the phone. The phone is incredibly addicting, but my point remains the same about human nature.

I don’t limit myself to political history. I also read books about certain disasters or time periods. I am fascinated in general by history.

I try to pass this love onto my kids. My A girl might not remember the date of my birthday, but she knows probably about 80% of the presidents and all 50 states. Knowledge is power, so they say.

The nice thing about living in PA is that there are so many historical places to visit. In the last year in a half we’ve been to Gettysburg, Mt Vernon, Philadelphia, DC and more.

When we are touring through different places I try to educate A as we go and tell her facts about the different places. I am always happy to see what she has learned and it’s fun to see her take an interest in history as well. It being one of her favorite subjects at school now. Second to Art.

When we were in Philadelphia about a year ago, we were trying to visit the US mint. We all really wanted to see it. We had already visited the firefighter museum, and liberty bell, and independence hall. When we got to the mint, unfortunately it was temporarily closed until further notice.

We started to walk back to the main historical square. Walking back we took a different road than we came. We saw a pretty church and connected to it was a cemetery. A and I read on the plaque that this is where Benjamin Franklin was buried. There was a group crowded around his grave on the other side of the iron gate and a tour guide was talking to them about Ben Franklin. If you have ever been to his grave, you know the tradition of people throwing pennies on it. I don’t really know why. I did hear that it cracked the old grave from all the pennies, and they had to replace it. But I didn’t hear why they did it, because as he was explaining it, I noticed some of the tourists eyes in the group looking down in my direction, sort of by my feet. I looked down to see what they were looking at, and I saw my son, E, stealing as many pennies off the grave as he could get. His little arm sticking through, stealing them, putting them on the ground by his feet and repeat. I was horrified. I pride myself on making sure that my kids behave in important situations and if they don’t, removing them. With the fence, I didn’t think that we had anything to worry about about so I wan’t as attentive.

I grabbed his hand away apologizing quietly to the group so I did not interrupt the tour. I tried to put as many pennies back on the grave without making too many noises or cracking it again, because that was the last thing I needed right then.

Eric and I exchanged a look of mutual embarrassment. Like in, didn’t see that one coming, E stealing from Ben Franklins grave that is. I asked Eric if we could go in the cemetery to get a closer look, but sadly, he told me that you had to pay to get in. Not one to be deterred by honesty and already taken to thievery, E let go of Erics hand and took off running into the cemetery at lightening pace. I ran after him as fast as I could. He started running toward the group gathered around B. Franklins grave and I started to run faster. I grabbed him right before he got to the pennies again, thankfully. But as I was running, I heard the tour guide say, now lets have a moment of silence for Mr. Franklin in honor of all that he has done for the great city of Philadelphia. When I grabbed E’s arm to get him out of the cemetery, he started shrieking at the top of his lungs. E clearly did not respect B Franklin or his contributions to the city. Eric had to help me with him because he was very angry, so the two of us had to haul him out while the tour group did their best to ignore this disrespectful, unpatriotic family of four.

I am sure our disrespect and thievery was the topic of many dinner tables that night. Luckily they did not know that we are from Harrisburg. A and I decided that as citizens of the capital city of PA, it is our duty to be good examples to all the other cities in PA. We definitely were not doing our job that day.

Next time we go to Philadelphia as a family, we will be better.

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Letting Go of Things

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Disclaimer:

With this kind of post, there is a tendency to see it as a pity post or complaining. that is not the intent. With issues like OCD and ADHD along with others, I think transparency is very important. Part of the difficulties of being neurodiverse in these ways is feeling like you are alone. I think talking about the things that are difficult for us are important.

I love a clean house. A clean car. A clean yard. You get the picture. I really like things clean. I actually don’t mind cleaning. It helps me to destress.

Having kids in general challenges that. There is a certain level of mess in between cleanings that you just have to learn to live with or you are constantly cleaning all day, doing nothing else.

When the kids were younger, it was manageable to keep things clean. I had a system. I would clean at night time and return everything to its place. If needed, I’d pick up a little during the day. I made sure that everything had a place and then it was easy to clean up. I got a roomba and that helped with the floors.

But then E got older annd learned to get into things. He loves food, and he loves making messes. He craves the sensory aspect of smearing things. (Not just food if you catch my drift.) We lock up our cupboards. Lock up the cabinets, lock the rooms he is not in, but he still manages.

I cannot watch E every second and so I have had to learn to be okay with his messes. His trails of crumbs. His getting into my purse and tracking things out. Turning on the water. Taking things off bookshelves. It is like having a perpetual two year old but with the intelligence of an 8 year old in figuring out how to do things. He has the emotional age of 2-3 and the intelligence of an 8 year old.

He is a smart boy and sometimes when I am not looking, if I have the cabinet open to get dinner ready or something else, he will grab food coloring or crystal light packets. Something. And hide it for later. Then when I leave the room, I come back to red floors and walls. There are certain things that we stop buying, but on the other hand, there are certain things that I do want to have on hand. Crystal light helps him to drink more fluids.

We use lockboxes for keys ever since he stole my keys once and started the car and locked us out. (That’s a story for another day)

He has discovered a fondness for art and drawing. He has also discovered that his preferred medium is my walls. It’s easy to say, lock up anything that writes, but harder to do. Especially when you have a 10 year old who might leave something out for homework or forget to lock her room. Or is playing with E in her room and he grabs a marker and hides it.

I have learned that if E wants to do something he will find a way to do it. I try to then simulate the desired experience in a controlled environment. Like having E help me bake a cake, however he desires his independence and wants to do these things alone.

With the constant cleaning up after E, some things can wait till night, while others like sticky or wet things can’t, I don’t have time to do other things that need it. The car, my room, laundry, bathrooms. Some of the things I can hire a cleaning lady for, but others are more difficult.

Learning to live with this mess has been very difficult for me. In the past, cleaning is how I maintained a visage of control. It is my outlet, and it is my OCD. Without it, I don’t know how to cope.

I don’t judge other people on the cleanliness of their houses. I don’t even notice it. But mine, hugely.

I will create organization plans and schedules, how to keep on top of things. Those work for a little while. But then I get sick or am out of town, and things go downhill again, and I have to make up for it.

I wish I did not care about the cleanliness of my house. I wish I could let it go. I am trying, but old coping skills are hard to break.

With ADHD, there is a lot of all or nothing thinking. Like either it is all clean or not at all. Once my room starts to get messy, I think whatever, and then am not careful about putting things away.

I like to have time with my kids and I don’t want to pass on unhealthy habits or have A afraid to make messes, so I am learning to let things go and be okay with something level of mess.

I tell myself that there are more important things than a perfectly clean house.

So in the mean time, until I find that happy medium… Don’t judge me for dirty baseboards and messy room.

TLDR; I I hate messes but am learning to deal with them and not be a control freak.

What do you all struggle with? The hardest thing for you to let go?

Switching Schools

AC2 Comments

About a month and half ago, we switched E from the autism unit within the local school district to a private autism school. The process was horrible. I have wanted to write about it in order to bring attention to the different struggles of getting a fitting placement for a neurodiverse child. The school systems in general are built for a specific type of learner and the others fall to the wayside. Take myself as an example. As an undiagnosed teen with ADHD I just barely graduated from high school by adding different internships to replace failing grades of other classes. My problem was I never remembered assignments or very much underestimated effort and time needed. The seeming contradiction to a student like myself who was just barely surviving high school is I was actually very smart. I was invited to the honors ceremony because I placed in top 5% nationally for ACT score. The school system is not always kind to those outside the mold. Not blaming teachers, but the system as a whole. Testing, funding, availability. Since I graduated, there have been more charter, stem, magnet schools available in addition to vouchers for private schools. I’m all about the progress but there’s still a way to go.

I have put off recounting this terrible experience because I honestly was not sure how I would abbreviate it into a blog post. There’s just so many details. It’s hard to know what to include and what to exclude to get the point across accurately without running on. In addition, I get heated when talking (or writing) about it, so emotion blocks my ability to recount it in a clear manner.

I’ve decided to give a little background and let my two letters to the district SPED director mostly tell the story.

Here it is:

After talking with different people on E’s team various times- school nurse, teacher, school counselor, principal- and having an official meeting, E’s educational needs were still not being met. I called around different autism schools to inquire about placement and pricing. One of them told me that the district can pay his tuition if his needs are not being met with his current placement. I looked up the PA Parent Guide to Special Education, and found that to be true. It stated that in order to do so, have them pay, you must officially request the alternate placement for your child and the district has 10 days to respond with evidence to the contrary or place him with a new school. 

Another thing to be noted is that E was supposed to have an aide due to his seizures and behaviors. I was told time after time, they were still looking for someone. Here is my letter to the district requesting new placement:

I would like to reconsider E’s current placement at [district] Autism Classroom. 

While I have been grateful for everything E’s team has done for him and the accommodations made, I don’t believe at this time E is getting an appropriate public education. I wish to place him in a private autism school. Specifically, [A School or B School] based on availability. I have called them both and explained E’s challenges and accommodations needed and they are both willing to work with those. I am asking at this time that the district pay his tuition. Stated below are the reasons that I don’t believe E is getting the proper education that he needs.

E has epilepsy. He has partial seizures. These are characterized as staring spells and often repetitive behavior. He can have many throughout the day, varying in different lengths. E is currently on medication for seizures and as we get him up to therapeutic doses, we hope that his seizures can be reduced. However, they may never go away completely, or get below the 3 a day amount that they are sending him home for at [school]. His plan of care from the doctor has not been properly followed. If the plan of care was followed, he would not have missed a day because of his seizures. There have been two instances where E has started to choke because he was eating when a seizure started. Other than choking hazard, his seizures don’t present anything that validates him being sent home from school. Many kids with even higher frequencies of seizures are able to stay at school. E needs to be at school. We did not have issues with this at his former clinic in Ohio. E has completed at best, 7 full days of school since his start date in November.

E has some pretty serious behavioral issues. His meltdowns can be long and can get aggressive. He started having meltdowns around the 2:30 mark at school, and they suggested that we have him go home an hour early to avoid this. I don’t mind doing this if needed, but in another placement more effective for E’s behavior, this would not be necessary. He requires a BCBA on staff all the time. There was an instance at [Elementary School] when they were trying to try on a harness for E for the bus. He had a major meltdown that went on for over an hour. They had to call in a BCBA from the district to help diffuse the situation. I am grateful that nobody was hurt in the hour or so leading up to the BCBA coming. E has broken my nose on 3 separate occasions during a meltdown, and I have sustained many bruises and blackeyes. It is not safe for the staff or for E to be at school without a BCBA on staff. 

E requires one-on-one instruction. He requires a very individualized plan for learning. This helps him not just with his behavior, but it helps him learn things easier. 

E’s VBMAPP scores have gone up a few points since starting [Elementary School], this is a big drop from his rate of progression that we have been seeing for the last 4 years in his last setting. This age is so pivotal for children on the spectrum, in terms of progress. I know that he is capable of achieving more than he has the last little while. 

I am extremely grateful for his team and all the help and effort that they have put into E. I just don’t believe that the resources they have are able to accommodate E at this time.

How can we move forward in enrolling E in a private autism school? 

Thank you,

Annie

I received an email back from the special ed director asking if she could call me the next day and talk about the email. In the meantime, she must have contacted his team to find out what was going on. However, the SPED director had been in on all the meetings, so this information/request from me couldn’t have been too much of a surprise to her. 

The next morning when dropping E off for school, the school nurse cornered Eric and started to berate us. Saying, she has tried everything to help us, but I don’t seem to want to be helped. That I have sat on my butt and done nothing to help them better help E. She accused me of not giving E his seizure medications. She told Eric that I must not care very much about helping my son. When Eric told her that he was unsure what she was talking about with some of the paperwork, she told him that he needed to step up and be a full time caregiver. There was more said, but these are some of the main points. In addition to this, she had this conversation about my son’s private health information in the hallway with people walking in and out going to class and such. Major HIPAA violation. I had just about everything backed up with some type of paperwork so her lies didn’t hold much water in the legal scheme of things on my end, if someone were to question my parenting. I had seen the nurse act in this way before. Extremely defensive when a situation caused her to look bad. Her forgetting that E had Celiacs when we were talking on the phone on one occasion despite the paperwork filled out. “It was the other nurse’s fault for not making her aware.” Blaming E’s doctor for his “unacceptable behavior” – That being his plan of care for E’s seizures. She thought that she should be using his seizure stopper medicine after 3 minutes and sending him home after 3 seizures instead of his doctors orders. This was a bit of a pattern with her.

This is the email I sent to the SPED Director the morning of the encounter after Eric told me what had happened.

This morning when my husband was dropping E off for school, the nurse pulled him aside and had a conversation with him about E care that became quite confrontational and completely unprofessional.

Last week, E was sent home early for seizures. I talked to the nurse and we discussed several things. 

Upping E’s medication

Seizure stopping medication

Permission forms that allow her to speak with our doctors

The possibility of having medication on hand if E misses a dose at home.

That evening I received a call that there had been a positive COVID case in E’s class and that he needed to stay home until Tuesday. Tuesday morning, E was having several seizures by breakfast. I contacted his teacher and she talked to the nurse who said it was best to keep E at home. 

The nurse tried to contact me twice yesterday. E was having an extremely hard day and my daughter had an appointment. Unfortunately because of this I was not able to get to my phone.

The nurse accused me of not helping my son, not doing anything in response to her requests. Those are things that she should have brought up with me instead of getting angry with my husband when I was not there to even respond. My husband works 12 hour days and is not always 100 percent up to date on all things. 

Because E was not at school for the last week, I have not had time to implement any of the prior listed things at school yet. 

In response to them.

I talked to E’s doctor the afternoon that I had to pick him up early. We upped his medication that day. We talked about the rectal medication for school. Since the appeal is in progress, he cannot prescribe the rectal medication. We should have the answer on the appeal by early next week. In addition, E has not had a seizure over 5 minutes that has required the medication as of yet. 

I signed all of the permission forms for her to contact his doctors. I called the doctors office in Toledo and left several messages. I have not heard back from them either. I intend to bring medication to school for E in case he misses a dose. As this being E’s first day back, there was not an opportunity to comply yet. I am waiting on the pill grinder in the mail. Since E did not miss a dose this morning, I did not see the danger in not sending this.

We try to give E his medication every morning and night. He sometimes does not comply and spits it out when we are not looking. We are doing our best and these accusations of non compliance on our part are offensive, untrue, and completely unprofessional.

I bear no personal grudge toward any of E’s team and have been very happy with how willing they are to help. However, things are not working and he is not able to stay at school. I understand being uncomfortable with the seizures, which is why I have requested alternative placement. 

The plan of care was implemented over a month ago. Mid December. Stating that he does not need to be sent home unless he has a seizure over 5 minutes. These are orders from his neurologist. The only non compliance in this situation that I see is from the nurse. 

Annie

I don’t believe the SPED Director actually read the email because when we talked on the phone, she stood up for the nurse and the school saying that they were right to be frustrated at our non compliance. I repeated what was listed in the letter. And then again over and over again when she kept going back to the nurse’s accusations. She told me she was not convinced that the school wasn’t providing him with what he needed. She said there were more severe kids than E in the district and their needs were being met. I argued with her for over an hour on the phone. She told me that the attendance record said E had only been sent home early 5 times. I laughed out loud because I thought it was a joke.  Once I realized it was not, I said “That’s not true”. She said, “So you are saying that the school is falsifying records?” She also said that the school claimed that they called me merely to tell me about the seizures and that I insisted everytime on coming to get him. I can tell you straight out that is a lie. I could go on and on with this, but after over an hour of bullying and gaslighting, she had to comply with the law and offer an alternate placement. 

A parent should not have to go on trial if they feel their child’s needs aren’t being met. I was treated like a liar and nobody stood up for E through this. There was no mediation offered, no parent rep. They wanted to manipulate me into staying so they didn’t have to pay the bill for E’s tuition. The funny thing about it is, if they were compliant with providing an aide for him, a LPN is required for a child with medical issues such as his, private school would actually be a lot cheaper than paying for the LPN.

It should never be this hard to place your student in the correct environment. The district did not want to do what it takes to meet E’s needs. Instead of trying to, when he got hard, they would send him home. They often sent him home because of a fever. When I would take his temperature at home, he never had one and was fine and energetic the rest of the day. Sometimes they would send him home for throwing up. When I asked the circumstances of his throwing up, they finally conceded that it was actually when he would shove his food in his mouth and then choke on it triggering his gag reflex making him throw up.

Their pride was threatened when I requested the change. Is a child’s progress or rather, hindrance of, worth saving face?

This story, while unique to me, is not uncommon. Sometimes you literally have to fight for your child’s future. 

E’s new school is great. They have never called me to pick him up early. They meet his needs and his behavior is improving at home. For the first time since we left Ohio, I find him coming home with new knowledge and new skills.

This was terrible to go through, but I am grateful that we did not back down. People often ask me why I don’t get angrier with these situations and say those things we’re all thinking. A few reasons. I don’t want to waste my time and energy stooping to their level and hurling insults. I won’t let them bring me down to their level of rude behavior. Another reason. They want a reaction. This justifies their behavior in their minds. They can leverage that. I want to have a clear mind and know what I want to say. Acting on the anger, clouds up my reason. Lastly, this is not the first and it won’t be the last. I want to be an example to my family of how to stand up for yourself and handle bullies.

Feel free to comment with any stories you have had trying to get the proper placement for your child!

Will He Talk?

AC1 Comment

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.

Coping.

AC1 Comment

Sometimes it totally catches me off guard that E has autism. I look at him asleep in his room and I see the pictures of him on the wall as an infant and it just hits me. The reality of it all. That my baby E has autism. It’s like a punch to the gut and I feel like I have had the wind knocked out of me. Especially days like today where he is really hard and the autism is more obvious. I look at that those old photos and with them are my expectations of what I thought he would be like and what I thought my life would be like. I expected him to be a typical little boy. He would go through the same stages and milestones as A. I see those pictures and it’s like they were another lifetime. It’s almost as if that boy still exists out there, and that mom still exists out there. And then I am here. People try to be optimistic with me. They say, he will be fine, he will do great. I hope for those things too, but what they don’t understand is that I am still dealing with the loss of what I thought he would be. I am still grieving my old life. To me in this moment, Autism is everything. I am grateful for what I have. I am grateful for the resources I have, but sometimes I am still just sad. And defeated. Sometimes it takes every ounce of energy to run after him again. Or to ignore the intense embarrassment I feel when he is shrieking and I am taking him out of the restaurant while everyone watches. Or feeling anxious as some stranger at a store comes over and tries to play with him and tries to be interactive. I pray that he just looks at them once so the moment will be over. Sometimes it feels like I have been dealt more than I can handle. For those days, there is writing and David Sedaris.

FAQ about Autism

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The kids and I were in the play place of a fast food restaurant the other day. I was sitting down while A and E played. There was another adult sitting in the play place as well and she was watching E. “How old is he?” she finally asked me. This is the seemingly non-complicated question that I get stumped on. The reason being, they are usually asking how old he is because they are confused by his behavior and his size. They usually think he is big for his age because he is acting younger than he looks. “Two and a half,” is what I replied. This is the point where I wonder if I should insert, “He has autism.” It’s not anybody’s business and I am under no pressure to share this information with strangers. But… they are usually asking because they notice something is different about his behavior. I don’t want pity so in the past I have often hesitated to bring it up. Lately though, I have been trying to bring it up more regularly. The reason for this is, I want to bring normalcy to autism. I don’t want it to be a taboo subject. I want the person to be aware. He is doing those things because he has autism and that’s okay. “He has autism” I finally tell the lady. “Oh really?” she replies. “That’s interesting because he looks so happy.” With this response I am immediately grateful that I chose to bring it up with her. I explain to her a little more about autism. I explain that children with autism are happy and are able to convey it. Maybe not in the traditional way that we expect, but they still are.
When I tell people that E has autism, I usually get several follow-up questions. I welcome these. I have a tough skin and there is not much you can say, short of directly insulting my son, on the subject of autism that will offend me. I welcome being able to educate people and help people learn more on the subject. When my husband told his boss about E’s situation, his boss replied that he had never met someone with autism and to be honest he didn’t really know what it was. I was shocked by this. I just figured everyone knew what autism was.

I have gathered a list of the answers to my five most frequently asked questions. My answers are not everyones answers. There is a famous saying people like to quote in the autism world. “If you’ve met one person with autism, you’ve met one person with autism” I am sharing the answers gained through my experiences with my son with autism.
Without further hesitation…

1. How did you know E had autism?
I get asked this all the time. I get asked this the most when the asker has concerns about their own child’s development. I think the hidden question is, should I have concerns about my child?
I was lucky enough to be around autism quite a bit with a prior job. I knew the warning signs. I also went to school for Early Childhood Education. I realized that E wasn’t as interactive as A was at his age. I realized that he could go days without acknowledging me. I noticed he wanted to communicate so bad but he didn’t seem to be able to do it. There are a lot of these symptoms that on their own are nothing to worry about. E had them all. Poor eye contact, speech regression, behavioral issues. My advice on this is, you have your mother or father sixth sense. If you feel there is something off, what’s the harm in getting your child tested or an opinion from a medical professional? We had to go through three screening processes which were quite time-consuming. Each one over an hour before we were even referred to the developmental pediatrician. They don’t diagnose autism easily. They are very thorough. Whatever the problem might be, through testing, they can identify your child’s delay and come up with a individualized plan to address it.

2. Have you tried [insert latest fad, diet, or behavior]?
When E was first diagnosed, I didn’t sleep. I spent every possible moment researching therapies and reading book after book. I wanted to do everything possible to help my son. There comes a time when you realize what you can realistically do out of all the information and services out there and what will work for your child. You can’t do every single thing and it’s not good for the child to be in therapy every waking moment either. It’s also not good for the parent to be only eating and breathing autism. I have tried certain things and will continue to try new things, but one step at a time. I guess, what I am trying to get at is, every single fad, diet, or behavior, I am very aware of. I probably have earned a PhD with all of the research I have done on autism. I know that people want to help. It’s human nature to want to fix things. Trust that we know what we are doing and we have one hundred percent heard of what you are suggesting. Even if you know somebody who had success with such behavior or therapy, every child is so different and what worked for them may not work for my child. Replacement questions that I personally love are, “How are you handling all of this? How are you doing? What’s keeping you awake at night worrying?” Autism moms want to sound off. I am not offended when people mention the previously mentioned things. I know they are being kind and it’s coming from a good place. It does however get tiresome explaining what I am doing with my child and if I have tried it and if I haven’t, why not.

3. Was it the vaccinations?
I don’t believe that vaccines cause autism. This is a hot topic so I will not elaborate much more. Two things. E did not have good eye contact or interaction at all as an infant. It did happen, but it was few and far between. He always seemed to just tolerate me. I thought I wasn’t being a good enough parent or that I was not bonding with him properly. These signs were noticeable from a young age, I just didn’t know they were connected to autism yet. Second thing. https://www.amazon.com/Autistic-Brain-Helping-Different-Succeed/dp/0544227735/ref=mt_paperback?_encoding=UTF8&me= This book talks in depth about what the autistic brain looks like.  It’s a very interesting read and I highly recommend it. The information in the book has strengthened my belief even more that autism is something you are born with.

4. This is not a question, but an observation I get often. “He doesn’t look like he has autism” or “It doesn’t look that bad”. This one really gets to me sometimes. Autism is not obvious at all times. If E is just playing at a park, you probably are not going to notice. Come to my house when I try to transition him from play time to another activity and the autism alarms will be going off at full decibel. A child with autism is not always hand flapping/stimming. To say it doesn’t look that bad minimizes things. Until you have walked in my shoes, you can’t say it’s not that bad. This goes for everyone. We don’t know what other people are going through. Supportive words are always the best whether or not you see the difficulty in that moment.

5. I thought kids with autism didn’t smile or like to be touched. Why is he so loving and touchy with you?
E is sensory seeking. Other children with autism may be sensory avoiding or some are like E and are seeking sensory stimulation. E does not seem to feel things as much as a typical child. He falls down and bleeds but doesn’t cry. I don’t realize he has an ear infection often for almost a month because he does not show that he is in pain. If I put a block down his shirt, he can’t feel it most of the time. He craves sensory input. Most often times from me or A. Children who are sensory avoiding may be overwhelmed by loud noises. They tend to hear and feel things even more than the typical child. They easily get overwhelmed by touch because they are feeling it so much more that it can hurt. E does not feel it enough. He likes to crash into things. He loves to swing. He loves to squish into me as hard as he can. He likes to flip upside down. This feels good. When he is having a meltdown, I put him in a tight hold and this calms him down quickly about fifty percent of the time.
E didn’t always smile. It used to be very hard to get a smile out of him. He is able to show his emotion a lot better than he used to. We are grateful for this. E may not react to the same kind of stimuli as W will with a smile. If I smile at E, he will return it maybe one out of four times. There are certain things that make E smile almost without a doubt. These are motion games. A will take E’s hand and they spin around and around and around and that makes him smile. E feels the most relaxed and happy when his sensory needs are being met. We get the most speech and smiles out of him when he is in his swing. His sensory needs being met make him feel safe and relaxed and because of this he is able to relax a bit and smile.

5. What is the hardest part?
The hardest part right now is feeling like I have an eternal one-year-old. E cannot walk on his own or he will run away. When I hold his hand in a parking lot he drops all his weight to the ground and refuses to walk. When I hold him he is constantly trying to get free. Pulling my hair, throwing my sunglasses, pulling at my face, whatever he can do to get me to let him down. He still puts things in his mouth, he runs straight to the street or the pond when we go outside to play. He resists getting into the car seat. Every time I put him in I have to man handle him. He still gets up in the middle of the night several times. I feel like when you have a baby, you think this is so hard, but it’s okay because you know they will get older and outgrow it. You mentally are prepared to handle it for x amount of time. With E, I don’t know how long this will last. It’s exhausting. I live in fear of him getting lost or hurt. He flails in tantrums and hurts himself. Self-harm is a problem with him and him harming me when he is angry. I feel tired all the time. I reassess my situation every few months and decide what help I need to add on. I am lucky to live in a state that has such amazing services that we can afford to add on help in the home. As hard as all that is, the smiles and the love and his sweet personality make it all worth it.

Challenges are not unique to me or to autism. Before I had E, I often felt at my breaking point with whatever life was handing me. A having tantrums, hard pregnancy, husband working late. Life is hard no matter what you are handed, and you adjust accordingly.  Viktor E. Frankl describes this better than I can in his book “Man’s Search For Meaning”

“To draw an analogy: a man’s suffering is similar to the behavior of a gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative.”

And with that I end. Please comment any questions you may have about autism or about your current challenges in your lives.

 

Queen A

AC1 Comment

A is the boss of the house. Or so she thinks. Sometimes A is feeling very impressed with something she has done and might remark, “Wasn’t that a very six-years-old way that I got the cheese out of the fridge?” If I agree and say, yes it was in fact a very six-years-old way to get the cheese, she is instilled with just enough confidence to keep going. She then informs me about all the things that four-years-olds, five-years-olds and six-years-olds like to do with their spare time. “Sometimes four-years-olds really like to get cheese out of the fridge because they are feeling grown up, but four-years-olds also really like to get the mail. AND they like to unlock the door when the babysitter comes. They get very upset when their moms do it for them.” When she says this she tries to align her gaze with mine. Almost as if her general assessment of four-years-olds is directed towards me.

When we were moving last winter and people were coming to look at our house, A would try to take direction of the tour. She had seen enough Fixer Uppers that she felt like she knew her way around tour-guiding houses. “And this…” she would say, “is the room where Mom puts all the things she doesn’t want to put away.” She would then quickly transition to the Master and and all it’s dazzling features. Including the accompanying “ensuite”. Let me tell you this. There was nothing ensuite about that bathroom. The house was 1400 sq. ft, built in the fifty’s, and probably updated once in the seventy’s. It worked for our needs, but it definitely did not have an ensuite.

A likes to talk a lot and fortunately for her, unfortunately for me since I am the topic of it, she has plenty of opportunities to exercise her skill. At E’s Early Intervention Playgroup she told his teachers, “My mom doesn’t have time to play with me ever so she hired a babysitter to do it instead.” This is accompanied by A putting her positive spin on the situation. “Isn’t that so nice of her?” I told them that I recently hired a babysitter to help out and when we got home I went over with A all the times that day that I had played with her.

My mother-in-law has been visiting this week, which has been wonderful to have the help. She has been getting the kids for me in the morning so that I can sleep in. On the first morning that she got up with them, I overheard A giving her the rundown of our household. “Every morning I wake up first, then I go into E’s room and I play with him. Then I have to take care of him. I feed him breakfast and make sure he is safe. I help out with my brother A LOT. Mommy really likes to sleep. Sometimes she sleeps so late that we miss lunch.” She probably would have kept incriminating me, but I ran out of my bedroom faster than I have ever gotten up in the morning and interjected. I let my mother-in-law know that A sometimes goes in first to get E while I get dressed and plays with him in his room. The breakfast that she gets him consists of old Easter, Halloween, or Christmas Candy that she hides throughout the house. Lastly, A mixes up her meals and often mistakes breakfast for lunch. I am grateful for a mother-in-law who knows me well and knows that I am quite involved with my children and would never leave my “four-years-old” to care for my highly active two-year-old with autism.

I realize how easily my praise for A goes to her head. My telling her that she does such a good job helping with her brother and that I appreciate her help, translates in her mind to pretty much her running the house and being a super awesome four-year-old who takes care of her brother all the time. My sleep deprived pleas to her at four am to go back to bed and that I really like my sleep translates to me liking my sleep so much that I sleep through not one, but two important meals.

A is very precocious and it’s cute, but it more often borders on her thinking she is actually in charge. What is it with kids? You give them a compliment and they internalize it forever. I remember as a kid, someone said I had a good voice and I started practicing everyday in my room dreaming of the day that I would be discovered and turned into a famous pop star. After all, someone did say I had a good voice. Why wouldn’t that happen?

We hate to discourage A from being confident, but sometimes we do need to put a dent in her massive ego. We remind her that we are the parents and she is the child. She responds with, “Okay Mom”, or “Okay Dad”, and runs off. We know that deep down she still thinks that she runs the place. The next person who comes over she will be telling all about how Daddy loves video games so much he should have a video game themed birthday party and Mommy feeds us Diet Coke allllll the time.

Adapting.

AC1 Comment

Change is hard for me. I am very dependent on my routine and a deviation from it can be quite difficult. I like to have my routine, my schedule, my bearings. When I go on vacation, I take certain things with me and set up as soon as I get to my destination. I take my pillow always. I have my necessities by my bed. My book, my reading lamp, my lotion, my charger, etc. These things help me to adapt better. I guess it’s like a kid taking their teddy bear along with them. It’s easier to cope if you have something special to you. My aversion to change is a control thing. I am a control freak. I like things a certain way.

I like the things that change brings, it is just hard initially to adapt.

Becoming a mom was like this for me. I didn’t want things to change drastically. I wanted to still be able to do the spontaneous, shallow things that brought me so much pleasure-Girls trips, getting my nails done, going to concerts, going shopping. I wasn’t sure how motherhood would change this. On Facebook I would see posts complaining from moms that they hadn’t showered for a week. They hadn’t done anything for themselves in months. They never slept. I didn’t want that. I wanted to retain my interests, my hygiene, my spontaneity, but I wanted to be a good mom too.

I am a very intense person. When I like something, I do it all the way. I find a shirt that I like and I buy it in every color. I find a book that I like and I do nothing else but read until it’s finished. Then I read every single book by that author. Sometimes I get so into something that I neglect everyone around me. I get obsessed with something and that is all that I can think about. I feel that I don’t have control over the level of intensity with my passions.

My biggest fear with motherhood was that I would get too sucked into my personal things and ignore my kids. I wanted to be myself and a good mom. I just didn’t know these two things could coexist from what I had seen. I couldn’t risk my intensity taking over and my future kids suffering because of it.

A was born. After the initial adjustment and shock wore off from learning how to be a mom, recovering from PPD, and readjusting my life to having a newborn, I  didn’t restart the things that I used to enjoy so much. Reading, Writing, Yoga, Sewing were all neglected. The rare time when I would start to do things for myself I felt like I was neglecting my baby. I felt like if A was awake then I needed to be 100 percent invested in her. At the time I didn’t realize I was doing this. I was handling things the only way I knew how- by intensely getting involved in one thing and neglecting everything else.

As time went on, I started to feel bored. And dull. I would go on a walks with A, go to the splash pad with her, go to different baby activities, the park. I still felt flat. And just a general discontent.

I googled “stay-at-home mom boredom.” Guess what? No responses. Seriously? I couldn’t be the only bored stay-at-home mom. The search responses that kind of matched it were ideas of things do to help my child not be bored. My child was an infant. She was definitely not bored. Subsequent searches gave me ideas on how to be an even better stay-at-home mom. The way to be an even better mom, it seemed, was to invest even more of myself into my child.

I remember walking into the living room one evening around this time. My husband was watching A. He was sitting in a chair, A propped up in his lap, and he was playing Call of Duty like nothing had changed. I realized that he was still exactly the same. He was a great dad but he still had his interests. How could I do this too? I lost my spark and I wanted to get it back.

I read a book. “Bringing up Bebe.” It is a book about an American’s experience living in France and the differences in parenting between the two cultures. As I read the book, I saw my own childhood in it. My parents still retained themselves while raising me and my sisters. I had an excellent childhood even though my parents had their own things going on. Some of my fondest memories are activities where I am helping my parents. Gardening, cooking, errands. I loved helping my parents with their routines and doing things together.

I started to try this with my own child. I started to do the things I normally would do, but with A. I cooked dinner while she was awake- not napping. I would, depending on her age at the time, incorporate her into it, or entertain her. I started taking a shower when she was awake. To achieve this, I put her in her crib with toys and books. I read books while she was playing with her toys. I started doing my everyday living, but with her. Having her help actually made it more enjoyable a lot of the time. Doing this, I surprisingly ended up having more time to play with her individually. I was happy because I was able to meet my own needs. And my being happy made me a better mom. I became more confident. I made more friends. I took her to the park. I thought up fun ideas to do. It was a chain effect. It kept building upon itself.

Finding myself again was not overnight. It was a gradual process. It was when A hit her 18 month mark that I felt like my core pieces had returned back.

Every day is not perfect. I still struggle at times to find a balance between myself and motherhood. Some days I am embarrassing amounts of lazy and ignore my children completely. Other times I am struggling to have one minute to myself. But overall, I feel like I have successfully navigated my way through the uncertainties of motherhood. I’ve made a safe place for myself and found joy in both my children’s and my own individualities.