Category: autism

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?

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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!

The Ramblings Of Pessimism.

AC3 Comments

It’s like there’s a time bomb always ticking in the background. The background of my thoughts, of my routine, of everything in my daily life. The closer it gets to E’s 4th birthday, the more panicked I feel. The more restricted my airways become. I don’t think I ever really really believed that he wouldn’t talk. I kept thinking, not my E, he will eventually. He’ll get that speech therapy and it’ll take off. But, here we are at almost 3.5. Still no speech. He is smart as a whip and communicates in so many different ways, but I feel like the day is winding down. I am in the 11th hour. That might be a slightly dramatic description. There are kids that talk after the 4 year mark, and I do still have time. But in this moment of my fears, it feels exactly the way described. I think it goes hand in hand with the stages of grief. You swing from acceptance, to denial, to bargaining, to depression and back around again.

It’s the not knowing that really kills you. It’s also the seesaw of optimism mixed with the “well, its a spectrum” lines you get from the doctors. They never will tell you just how severe your kid actually is. I spend my nights googling, searching other autism forums, just trying to find out what I am up against. What group of autism is my son actually in? I hate this spectrum stuff. The spectrum is too broad, and it slights everyone. You are given a blanket diagnosis, with over a million different outcomes, and you just have to wait to see where your child lies. If you ask, they give you vague, nonsensical answers about it, “Well everyone is just so different on the spectrum. Anything can happen.” No definite answers. Tell me then what is the purpose of this “spectrum diagnosis“? What good does it do me if I still have no idea the true prognosis for my son? And why is it an unspoken taboo to ask just where your child lies in the vastness of this spectrum diagnosis.

It’s as if you were to take your kid to the doctor because something is clearly not right. He is coughing, he has random fevers, he randomly throws up. You know something is wrong but you don’t exactly know what. You get to the doctors office and they confirm your worries.

“Well ma’am, you did the right thing by bringing him in. There is definitely something wrong with him.”

“What is it? What’s wrong with him?”

“It’s Childhood Illness.”

“Okay. What is Childhood Illness? Will it get better?”

“We are not sure what will happen with him and his Childhood Illness long term, or even short term. He could always have these symptoms, he could get rid of them, or he could end up having just half of them long term. It’s hard to say.”

“What should I do to help him?”

“There are 100 different things you can try. Some might work, some might not, and… maybe, its a possibility, that all of them will not do a thing.”

“Okay… well, is there one that would work better for his type of Childhood Illness? Could we get more specific?”

“Don’t get caught up in the labels, just accept your son and his Childhood Illness.”

“Can I talk to anyone else that has a child with Childhood Illness?”

“Oh definitely, there are tons of support groups. There are so many moms that have kids with this. That mom over there in the waiting room,” the doctor says pointing. “Her son has it too.”

“It kind of looks like her son actually has completely different symptoms than my child.”

“It’s still Childhood Illness.”

“But there is literally nothing the same at all between our two kids.”

“Well, that’s the way Childhood Illness goes. Read this book about it.”

“But, this book is about children who sneeze not cough and have chronic bloody noses. My son doesn’t have any of that.”

“Like, I said, it’s a spectrum. Just read it. I’ll see you and your son in six months to discuss how trying as many of those 100 things you can in that period goes. Try not to go bankrupt on the way.”

Outside of autism and other disabilities is this considered an effective plan of action? I feel like the doctors around me spend so much time trying to instill me with hope and optimism that they forget to fill me in on the realities. I know that nobody can answer the questions that I want to know about E. But just give me a ballpark. There is a big difference in my life long-term having a non-verbal moderately severe child with autism, and having a verbal child with moderate autism. I just want the facts. I am not alone in this. In the autism forums that I frequent, the pages are full of, “Tell me where my child is on the spectrum. Does your child, who is doing this and that, talk? What should I expect?”

Nothing from a medical provider can change E. They can’t change the future. But could they help me better prepare for it? In a situation where hope is a dangerous thing, what’s the harm in just giving the hard facts? If my hopes are low, I can only go up if he exceeds those expectations.

 

Hoping For What?

AC1 Comment

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?

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.