Guest Post: A Mom’s Perspective

As I mentioned in the previous post, I never had the opportunity to receive any services that might have helped me as a child. I asked my mom about her input and she wrote a little post for ya’ll about her feelings on the subject. Without further ado, my mom.

I’m very big on trusting your gut…especially when it comes to what’s important for your children. There’s always going to be the “latest & greatest” thing available for you have your child participate in, touted by all the experts. If your gut tells you that you should watch things play out for a little while, before you & your family take the plunge, then I think that is wise. If you’re flat out ready to find something that will help your child, then get your feet wet & give it a try.
I have said (in regard to many things) over the years; it will either work, or it won’t. If you remain observant, involved, and aren’t afraid to ask questions, then there’s usually no harm in trying. If it’s not working out the way you’d hoped, then exit the program. Dust yourselves off, say, “Well, that didn’t work so well.” and go back to the drawing board. There’s no shame in that. But, there might be heaps of regret in staying with a program that just isn’t working.
We didn’t have knowledge of such programs, when Allison was young. We just did the best we could, as we went along. So, I don’t really feel like I can contribute as much as I probably should be able to, for this blog-post. I honestly think that’s what most parents try to do, though…their best, with and for each child. A little bit of mercy, towards the parenting styles of other people, can go a long way in keeping/maintaining adult friendships. There is no such thing as the perfect parent. Don’t be too hard on yourself, or others, and keep at arms-length those who have made it their mission to judge you & your parenting. If you’re holding yourself to a high enough standard, you won’t need others to do it for you.
Like I said, trust you gut. It’s there for a reason, and will usually serve you pretty well. It might be a great program, with an under-trained staff. Or a mediocre program, with staff so wonderful that you want to adopt them, and take them home. Then, like Allison & family, you might have to move a long ways away & start all over again. Either way, if it’s helping (or not helping) you & your child, only you can make the decision to stay, or go.
Take most things in stride. Do your best. Learn as you go. Trust your gut. Make adjustments. Have mercy on yourself & others. Keep an eye on the long-range view, so you don’t get bogged down in the mirey details. You’ll be fine.

Sincerely,

Mom.

Controversy and Exceptions

Since starting Mateo in ABA therapy, I have become increasingly aware of a certain controversy around the practice. I was previously unaware, as I never got a diagnosis let alone therapy/treatment. My mom and I just stumbled through my teenage years together. We learned as we went with the limited information that was available back then. No therapy, no medication, no IEP (Individualized Education Plan), no treatment. I was just an alien learning the language of society from the person that loved me most.

I have read articles about the abuse autistics suffered at the hands of the “experts” that were supposed to be helping them. I’ve even heard about the horrid reasons that Ivar Lovaas founded ABA. He is quoted as having said “You see, you start from scratch when you work with an autistic child. You have a person in the physical sense- they have hair, a nose, and a mouth- but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person. The goal is to shape and hide the behaviors so they appear more like typically developing children. This works by using harsh aversive techniques like withholding affection, withholding food, physical punishment, and electric shocks.” His opinion was very wrong and ableist. His methods were atrocious. Many autistics are permanently scarred by these practices. While the more disgusting methods (physical punishment and electric shock) have been done away with, there is evidence that those that remain can still be and have been traumatic. There are many studies that prove the methods of the past have caused PTSD in many autistics.*

Now, the big question. Knowing all the things I do now about the history of ABA and some of the things that still go on, why do I keep Mateo in this therapy? It is a simple, yet complicated answer. I keep him in because he needs it.

Mateo is non-verbal, has self-harm behaviors, and requires level three intervention. Those are all things that could be addressed at home, but our home environment is not compatible with his learning. He has decided that I’m not allowed to teach him and that someone interrupting his home life/routine is evil. He will happily learn from someone else at a secondary location. These people are helping him in ways that I cannot. Not only am I not educated enough, but he wouldn’t let me if I was.

The truth is that he has grown and continues to thrive. I do wish I had known more before he started. There are some things from his brief therapy in Kansas that I look back on with sadness. He did grow and do better there, but I can see some of the things that could have done some damage long term. (i.e. withholding affection, “correcting” his stimming, and pushing him to the point of tears on a regular basis.)

His ABA center here, though, has been the one redeeming point of our entire move to El Paso. I am more aware of the potential damage that can be caused, we have the prior experience in Kansas to know what we don’t want, and this center operates differently. I noticed the difference from the very beginning. I had to fill out significantly more paperwork, the interview process was longer and much more thorough, and the parent involvement required is more intense. I drew some very clear lines about what I will allow with my son and what I won’t. Unless his stimming is self harming or hurts others, they are not allowed to intervene. They are only allowed to give him love, compassion, kindness, and positive reinforcement. They do not push him until he is in tears. If he is having a rough time, they take it easy and give him breaks. They are not allowed to try to make him someone that he is not. Their job is to give him the tools he needs to function and deal with the world around him, not try to make him more like a “normal” child. From what I’ve been told, I already do a lot of things right at home when helping him calm down and deal with the world around him/his emotions. What he does at ABA is similar, but in an educational setting and includes learning other skills. They already have policies in place that I completely agree with (mainly their AAA method to dealing with more difficult behaviors). They look for what is causing him to scream, cry, yell, throw tantrums, and have meltdowns before they even attempt to deal with the problem. They try to understand him first. That in itself is a major step up from the centers that only focus on changing behaviors and teaching children how to mask.

ABA works for us and for Mateo’s needs, but it won’t always. It only works because we are at the right center with the right policies and the right people, and because I am informed enough to set the boundaries and rules that my son needs. Also, ABA isn’t forever. It is only in our lives as long as it serves a purpose and helps Mateo. Once it has served it’s purpose, we will move on to the next stage of his life and whatever is best for him.

I do believe that what we are currently doing is what is best for him, but I refuse to keep him in if he is being harmed in any way. I would take him out in a heartbeat if need be. I already feel like it might be time to start slowly phasing out of ABA to make room for other things. He is now also receiving physical therapy, speech therapy, and occupational therapy. His ABA experience did well in preparing him for these other therapies and in preparing him for his impending enrollment into preschool (hoping for the 2021-2022 school year). His therapists for the other therapies have been very impressed with him from the start because of the skills and tools he gained at ABA. If we remove one day of ABA from his week, we can add another occupational therapy appointment, and I feel that would be beneficial for him.

Being autistic as well, I feel, gives me a leg up in making sure that what we are doing is the right thing. I had a weird feeling about certain things with ABA when we were in Kansas. I wondered if I really knew better or if I was being an overprotective mama bear. I know now that I should have gone with my first instinct. I know now that I will speak up if I feel anything other than complete comfort with the services he receives. I know, better than most, how he is feeling and why he feels that way. I am his advocate and I’m still learning. I’m just relieved that we left Kansas before any lasting damage could be done, and relieved that I learned to do better and demand better for him.

In the end, I cannot defend ABA. I won’t defend it. The truth of the matter is that most places and “experts” still think the things they are doing are what’s best for autistics. Most places and “experts” still have terrible, skewed views of autistics. The truth of the matter is that, even at the right place with the right people, ABA won’t be right for every child. Even at the right place with the right people, ABA won’t be right long term for every child. As with most things, it is a case-by-case situation. I won’t pretend to know what is best for other kids or promote ABA therapy. I just know my son and know that this is the exception to the rule.

Mama Bear,

Allie.

P.S. The next post will be a short one written by my mom on how she feels about raising me without any services.

Bull****

I know that the title of this post is different from the language I usually use, but I can think of no other word that quite fits my recent experiences quite like the word “bull****” does. I am exhausted, frustrated, irritated, pissed off, feeling hopeless and helpless, and at the end of my rope. All because of the endless red tape to get through and the hoops to jump through just to get Mateo’s ABA services transferred. (Though, “transferred” is a completely inappropriate term for the nonsense we’ve been put through in the last almost two months.)

Before Mateo started receiving services, we knew that we would be moving in the near future. We pursued it, however, because we wanted him to have the benefit of a little bit of ABA before we left instead of none until after our move. It was the smart decision because our move was postponed by a few months and going to ABA helped him so much. I made sure to ask, in the beginning, what the process of transferring services would be like with a move. I was led to believe that it was as easy as giving Tricare notification beforehand. It is nowhere near that simple. It is convoluted, frustrating, and confusing.

Hurtle #1: Referrals.
The ABA center required a local referral to enroll Mateo. Easy, right? Not even a little. I tried to call ahead and schedule a telehealth appointment to get the referral in the system a few weeks before we left. Not possible. I asked if it was possible to schedule a telehealth appointment for a few days after we got to Texas. Not possible. No. I couldn’t even schedule an appointment until after Moises in-processed and Mateo was enrolled in the DEERS system specific to this post. I’m sure it’s not much different in the civilian world, but appointments are always scheduled weeks in advance because they are booked up. Because of timing, Moises didn’t in-process until a week after we got here. (2 weeks without ABA.)
Hurtle #2: The centers.
We were considering two centers for him and wanted to see which would be a better fit for him. After his appointment (4 weeks without ABA), I tried to schedule tours, but was unable to until they saw the active referral. That took almost 48 hours. One center would only do a Zoom tour before we started paperwork. Both centers scheduled the tours for the next week. We decided on which center to go with and let them know. Smooth sailing from here, right? Wrong again.
Hurtle #3: Paperwork.
The paperwork was more confusing and difficult this time around and took me a few days to complete and turn in. (Mateo had a really rough couple of days and it was impossible to get anything done.)
I turned them in on Wednesday of last week. It’s been four business days and I’ve heard nothing back yet. (7 weeks without ABA.)
Hurtle #4: Evaluation.
Next, we will schedule an evaluation where they will assess his skills, behaviors, and needs.
Hurtle #5: More paperwork.
When the evaluation is finished, they will fill out paperwork, based on his needs, to request whatever hours they want him to receive to insurance.
Hurtle #6: Insurance.
Insurance will then look at the paperwork, decide the number of hours they will approve, and send approval to myself and the center.
Hurtle #7: Scheduling.
The final hurtle to jump for Mateo to receive services is to schedule when he will be going and when he will start.

In these 7 weeks without ABA, his number of tantrums have increased, his number of meltdowns have increased, his diet has taken a hit, his mental and emotional health have been affected, and his self-harming habits have increased. He went from 1-2 tantrums every few days to 1-2 tantrums a day. He went from 1-2 meltdowns a week to 1-2 meltdowns a day. He went from eating everything we gave him to eating fruit, noodles, rice, and sweets. He is always unhappy, impossible to please, and takes it all out on me. He went from not hitting his head on the floor and rarely slapping his head to hitting his head on the floor a few times a week, slapping his head at every frustration, and has started biting himself.

In these 7 weeks without ABA, it has become glaringly obvious just how much of a necessity his treatment is. He needs it so badly. He’s only 3 and it’s been so harmful for him to go without treatment for this long.

We are doing our best. We try to occupy him and play with him and get him out of the house and keep teaching him things, but he is receptive to nothing. He is just angry all day, every day. Every outing includes tantrums or ends in a meltdown. Every activity we try at home just ends in him throwing things while screaming. In fact, everything makes him scream. He is no longer using any verbal words and it’s a fight to get him to use any sign other than “please”.
It’s been so hard on me to deal with this every day. He hasn’t had a good day in weeks. His constant screaming is giving me headaches. The time I have to devote to meet his needs and his sister’s needs makes it hard for me to eat properly or even drink water. My mental, physical, and emotional health are on a decline. I don’t know what to do anymore and I cry all the time.
I cry for my own frustrations, but I mostly cry because I hate seeing Mateo go through this. I want to scream at the world for how badly this is hurting such a sweet and loving boy. I want to scream at the health care system for making this so hard. I want to make this go away and make the world better for Mateo, but I can’t. All I can do is wait with him and do my best to patiently love him until his world is righted.

In summary, the last two months have been bull****.
The last two months have been filled with more frustration, anger, and heartbreak than I can remember ever experiencing. Outside of Marc’s death ( https://thatawkwardkid93.wordpress.com/2016/08/10/I-wish-I-didn’t-have-to/ ), that is.

(Not to mention that our washer and dryer were stolen out of our front yard and Julius (our cat) went missing the day we moved into our new house. I also had to leave behind my best friend and neighbor when I moved, and I had to say goodbye to my therapist that had been working with me for almost 4 years.)

In Tears,
Allie.

Current Events

(As I write this, I will put asterisks next to terms that may not be common knowledge and list the definitions at the bottom of the post.)

The year 2020 has been one big, trippy episode of Black Mirror, and we’re only half way through the year. We’re all just gigantic balls of stress at this point, but the purpose of this post is not to talk about how crazy 2020 is. It’s to talk about the big thing that’s been weighing heavily on me. When I lay in bed, my heart hurts, it’s hard to breathe, and I am filled with disappointment in my fellow human beings. I need to get this out on the page so that it’s not jumbled up in my head anymore. I need to say something.

Occasionally, an event will be the catalyst, the tipping point, to this charade of peace that we have in the US. The senseless deaths of POC* hit it’s tipping point, once again, with the death of George Floyd.

I have so many feelings about this. I have feelings about his death. I have feelings about systemic racism. I have feelings about police brutality. I have feelings about the treatment of disabled people. I have feelings about the immigration issue. I have feelings about discrimination, prejudice, and racism. I have feelings about micro aggressions*. I have feelings about it all!

But I have remained silent about it for the last few weeks, and I’ll explain why.

1. I am a straight white woman. For years, since I was able to grasp the concept of prejudice and voice my feelings, I was told that it was not my place and I should remain quiet. When things are put so clearly into rules that a good percentage of people agree upon, I try to follow those rules. Making and keeping friends is difficult enough with having autism that I try to listen and follow the rules my friends set.
2. I have limited experience with racism (both on the receiving end and witnessing it). I have a little more experience with prejudice, but still not a lot. They say “write what you know”, so I remain silent because I will never truly know what POC experience in today’s America.
3. I didn’t feel like my voice was important. I am not the person that this is happening to. I am not the person that fears police. I am not the one that lives with that uncertainty, fear, and stifled rage every day of my life. I have remained silent to let the voices that need to be heard ring loud and clear.
4. However, I’ve been seeing over and over again that my silence is deafening, just as bad as racism. I’ve been confused and remained silent while I’m trying to figure out just what it is that I can and should do.
5. The ferocity of my feelings make it hard for me to stay level headed in the face of injustice, ignorance, and hatred. I have never been skilled in arguments and probably never will be. The last thing that everyone needs right now is someone blowing up like a crazy person all over the place. It will never be my intention to drown out the voices of the oppressed with my rage, so I will probably still remain relatively silent.
6. I have a massive amount of things on my plate right now. I am carting Mateo back and forth to his therapies, I am preparing for our impending move and worried that it will fall through again, I am actively advocating for him to start the preschool that he needs in the Fall and receive the therapies he needs once we move, I am cooking meals and changing diapers, I am still breastfeeding, I am cleaning my house, I am entertaining and aiding in my children’s development on two different levels, and I am constantly emotionally exhausted from raising a non-verbal toddler that has sensory issues. It’s all so much and, honestly, it’s easier to put blinders on and focus on my own little world. But that’s not the right thing to do.

The right thing to do is speak up, even though it’s uncomfortable. The right thing to do is stand behind and support those that are in distress right now. The right thing is to set the example for my kids that we should never stand by and watch as people are being treated unjustly! Those are the right things to do.

It’s so confusing, watching all the opinions being shared, the words being said, and the divide in our society. Who is right? Who is wrong? Who is a racist? Who is a bigot? Who is closed minded?

Opinions are a lot like emotions. You’re allowed to have more than one at a time, and they are not mutually exclusive.
I believe that all lives matter, but I believe that all lives won’t matter until black lives matter.
I believe that not all cops are bad, but I believe that the system on which law enforcement is based needs major reform.
I believe that rioting is wrong, but I can understand why it happens (history shows that it is effective) and the emotional progression that leads to it.
I believe in God, but I believe that my faith should not dictate the freedoms of others. God gave us free will, and everyone is entitled to exercise that free will. Even when we don’t agree with them.

People that are spouting “all lives matter” every time someone says that “black lives matter” aren’t getting the point. It may not be true everywhere in the US or in every income bracket, but the ethnic group that is statistically more likely to be the victim of police brutality and racism is African-American. It’s a reality that a lot of black people have to live with from a very young age. It’s something that I’ve never lived with. I don’t and will never understand the fear that they face every day, but I don’t need to understand it to acknowledge it and know that it is very real.

I’m a big fan of the analogy that has surfaced in the middle of this. I’ll admit that my feelings on the Black Lives Matter movement were on the fence (leaning hard towards support) until I heard it. Not that I didn’t believe that black lives matter. It just felt exclusive to everyone else, and exclusivity does not sit well with me.
In essence:
POC-“My house is on fire! Call the fire department!”
White Person-“Your house might be on fire, but all houses are important.”
POC-“All houses are important, but my house is on fire.”
WP-“Yes. Fire. But my house is important too. What about when my house is on fire?”
POC-“Your house is fine. My house is on fire right now and I need your help. Call the fire department.”

When “black lives matter” is met with “all lives matter”, it doesn’t come across as inclusive. It comes across as though their plight for equal rights and equal treatment is falling on deaf ears. The fact that there are other instances of unjust treatment for other groups (I.e. Latinx, Indigenous people, women, Muslims, Jewish people, people with disabilities, etc) does not make the injustices these people face any less revolting and any less important to fight against! This is the fight right now. Who knows what fight will come next, but I hope that the next one is met with as much support as this on has. What is needed now is for the people of this nation to come together and fight for a better future for everyone!

I haven’t spoken up about this before because I didn’t feel it was my fight. I have always been angry about the deaths of POC at the hands of police. (Any unjust death at the hands of anyone really upsets me.) The fact that their entire job is to uphold the laws of this country and protect the people living in it makes these deaths even more frustrating. It just never touched my life enough to make me feel like the fight was mine. It wasn’t my friends or family dying. It always happened in some other part of the country, far enough to leave my life unscathed.

But it is my fight. It’s everyone’s fight! It is a fight for the human race. If we sit idly by as a whole ethnic group is persecuted, what happens 50, 100 years from now when the ethnic group being persecuted is us (whatever group you belong to)? Will anyone come to our aid and fight for our equality?

On top of that, I was not raised to be an advocate. Don’t get me wrong. I had a very happy childhood. The Bible says that we should love our neighbors and part of loving others is standing up for them. I was taught that. I just was not given the skills to be an advocate or the skills to hold my own in a debate. We learn a lot of how to interact with people and treat people at home with our family. I was raised to listen and obey my parents without question. Even when I disagreed, even when I felt like something didn’t make sense, even when I felt that something was unjust, I was quiet and obedient. Because that’s just what I was supposed to do. Because of this, I never learned how to stand up for myself or my beliefs if they did not line up with my parent’s. My beliefs have not 100% lined up with my parents for quite some time, but I was not able to freely express them until I was married. Even when I did start to express them, I was timid and afraid of the consequences. My husband helped me through that and into a place where I started to stand up for myself, stopped letting people take advantage of me, and started to advocate for myself. That was a long, emotional journey for me. I’m still not perfect at it.

Having Autism is no help in this particular area because I was not observant enough to be able to tell when things being said or done made people uncomfortable. I was not aware enough to realize when something that I repeated verbatim was something that upset other people. I tend to take people at their word. I am a very literal person and believe most things at face value. This means that I was shaped by the unconscious prejudices of those around me. And, honestly, I’m still not the most skilled at these things. I still find it difficult to read people well enough to understand the true weight of my words, but I try like hell to be the best person, friend, and relative I can possibly be.

Now I’m learning how to advocate for others. My son having autism is a major reason that I am gaining experience in advocating for others. He is 3 years old and is incapable of asking for his needs to be met and incapable of meeting his own needs. He needs someone to do those things for him. I am that person. I am still learning. I’m a little clumsy at it, but I am fierce! I will be working on bettering myself so that I can advocate for all the people I love and all the people that are being wronged.

The difficult thing that I’ve come to realize is that I’m not just advocating for his autism based needs. I need to advocate for his needs as a POC. While my children are fairly pale, they are half Mexican. They are currently passing* but they are POC. It’s a part of their daily lives, their home environment, and their holidays. It is part of who they are, and they may not alway be passing. My kids, my sweet babies, may be the victims of racism, prejudice, or bias some day.

It’s my goal that they be bi-lingual. They could be out speaking Spanish with a friend or relative some day and be berated for not speaking English. Someone might tell them to go back to where they came from when they were born into an American family in the middle of Kansas.
Maybe they’ll have a nice Summer tan and be followed around a department store because they look “suspicious”.
Maybe they will be pulled over for a routine traffic stop and it’ll turn deadly.
Maybe, just maybe, the list of victims of police brutality will contain my kid’s names.
What about Brietta? My sweet girl will grow up to be part of the group that has the hardest time in the work force and the hardest time being taken seriously: minority women.

These are real possibilities that weigh heavily on me every day. This is why it is my fight. It is my fight for everyone’s children. It’s my fight until all kids feel safe like they should.

Since becoming an adult and increasing my skills in observation, I have actively opened my ears and my heart to the words of others. I have actively been acknowledging my own unconscious prejudices, delving into why they existed, and slaying them where they stand.

I’ve come to learn things and now understand things like how toxic the phrase “I don’t see color” can be. When people say it, the intention is mostly innocent and loving. The people that say it are trying to say “I don’t acknowledge the color of your skin because it does not impact the way I want to treat you”. The way it comes across is insulting. When you tell a person that you “don’t see color”, they are hearing that you don’t see who they are. Being Mexican American is a big part of my husband’s identity. It is a big part of his heart and his mind. If you completely ignore and pass over the fact that he is Mexican, you ignore his family, his childhood, the traditions he grew up with, and him. There is an entire culture behind the color of his skin and the country of his ancestors. It’s the same for African Americans. There is an entire culture that you erase when you claim that you don’t see color. I’ve learned that most people want you to acknowledge their color and everything about it that makes them happy and proud!

I’m not done with this journey, but I am learning as I go. I am, and have been, doing my part in the background for years.

I don’t want to draw attention to myself as normal social interactions give me anxiety. Unless you’re in my box, you make me uncomfortable on a certain level (I know this isn’t an “acceptable” thing to say, but it is truth). Add to that racial tension and difficult topics, you have a very frazzled Allie. Being frazzled makes my thoughts practically incoherent. This is why I write.

Today I write to remind myself and all of you that we need to get uncomfortable. Comfort breeds complacency. Comfort is the enemy of progress. We have grown too comfortable in our lives, in the violence we accept because it doesn’t touch us personally, and with the narcissists in positions of power in this country. We’ve grown too comfortable and that needs to change. Change starts with us. Progress starts with us. Our voices, our votes, and our camaraderie. The future of our home, the future for our children is in our hands. If getting uncomfortable is what it takes to create a better future, let’s get uncomfortable! It’s easier said than done, but it’s worth it. All of the progress I’ve made in my social skills would not have happened without a bit of discomfort. It works.

Black Lives Matter,
Allie.

1*POC- People of color or person of color.
2*Micro Aggressions- Brief and commonplace daily verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative prejudicial slights and insults.
3*Passing- Bi-racial, POC, or mixed person that can pass as white a white person.

3 Years

For three years, I’ve had the privilege of being Mateo’s mom. It has been a whirlwind of joy and wonder. It has been a struggle and an amazing experience. He is three today and I am so proud of the little boy he is becoming.

He started speech and is starting to use phrases with more words and is putting more effort into communicating his wants and needs to us. He’s added a few more signs to his repertoire. He is blossoming. I love hearing his voice and seeing the person he is coming to the surface. He’s just a beautiful little person with an attitude.

Today, we had a morning movie with cuddles, French toast, and then speech therapy before his alone time (he spends a few hours a day in his room to decompress). I took Brietta in for her 6 month check up and we went to pick up his birthday cake. We played outside, had cake, and ate Mac ‘n Cheese and Dino nuggets for dinner. We watched a bed-time movie and played and snuggled until it was time for bed.

He turned three today, and I am so happy. I can’t believe that he’s gotten so big. He’s my sweet snuggle bug boy, and I wouldn’t have him any other way. I love him to infinity and beyond.

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Elated,

Allie.

P.S. This princess is 6 months. Where does the time go?!

New Words

Mateo has seen significant improvement since starting ABA. In the month of April alone, he added 9 new phrases, 20 words, and 3 new signs (ASL) to his vocabulary.

“I did it.”

“Where’s Daddy?”

“Orange”

“Controller”

“Cut”

“I got that.”

“I said.”

“Outside”

“More”

“Look outside”

“Good job”

“Kiss”

“Caesar” (our dog)

“Guys”

“I got a kiss.”

“I got a haircut.”

“Assin” (Allison)

“Maté” (Mateo)

“I see”

ASL-more, please, and eat

With this improvement comes difficulty. He was going to ABA 4 days a week, but they changed the schedule. He is still receiving the same number of hours of treatment, but just 2 days a week. He loves ABA so much, and now he believes that I’m keeping him from going when he should be. He’s mad at me 4 or 5 days a week for not taking him to ABA. I know that some people believe toddlers don’t know that they’re being naughty, but I swear Mateo is being naughty on purpose! He is increasingly difficult to handle, and it’s exhausting.

We are beyond proud of all he’s doing. He is so stinking smart! Tomorrow, we have an appointment to do the evaluation for speech therapy. Next week, we have an appointment to confirm that he qualifies for early intervention preschool. Good things are coming! If he starts speech therapy, it’s gives him something more to occupy his time and energy. It’s the same with preschool. He needs to work and play and be with people outside of just my husband and I. It’s good for his social, emotional, and intellectual development. He needs it, and we’re trying our best to give him all that he needs. Please, pray for us and wish us luck!

Hopeful,

Allie.

Still Autistic

Those that know me personally, and have known me since my pre-teen years, know how far I have come in my development of social skills. Most days, I almost don’t notice any autistic behaviors or tendencies. Most days, no one would label me as autistic. Most days, people would say that I’m normal. But I still have autism. Every once in a while, something will come up and it will take me down a few pegs. Something will happen and it will take me through all the stages of accepting my autism all over again.

I know that there is no “cure” for autism, nor should there be one. I know that it doesn’t just go away. I would never think that I’m better than other people with autism. I just…sometimes forget about it. Maybe it’s because the people around me don’t ask me to alter myself to make themselves more comfortable. Maybe it’s because I’ve done enough exercises in socially acceptable behavior that it almost comes naturally to me now. Maybe it’s because my autism is something my friends and family love about me. Maybe it’s because I’ve surrounded myself with people that accept me as I am. I don’t know. All I know is that it fades to the back of my mind for long periods of time because it doesn’t cause any problems for me.

The fallout from COVID-19 altered my life and my path in a way that made me absolutely lose it. It snapped me back and made me reel.

We were supposed to move. Moises requested a PCS (Permanent Change of Station) and we were supposed to leave Kansas on April 1^st. It was going to be my first move with the Army. When we moved to Kansas, I was not with Moises. He moved here while I was in California having our first baby, and I moved later when Marc was old enough to travel. Being my first move with the Army, I needed to be a part of every aspect. I took care of all the necessary paperwork that could be done with my Power of Attorney paperwork. I set up the date for the movers to pack up our household goods, I rented the U-Haul trailer, I worked with the housing company at the new duty station and had our new address, I was in contact with the Early Childhood Intervention program to get the process started to get Mateo into preschool, I was in contact with a new ABA provider, and I started packing our things. My mom had her plane tickets to come out and help with the move, we had figured out the route for our road trip to our new home, and we were preparing for this beautiful new start. Everything had fallen into place. Everything was ready.

With the rapid spread of this pandemic, the government put a hold on all PCS’s until May 11^th. That hold has now been extended. We found out exactly one week before the movers were supposed to pack our things and two weeks before we were supposed to move.

Here’s where the problem comes into play. I have some serious control issues. I do not do well with the unknown. I make lists and plan far in advance because I need the assurance. I need to know what’s going to happen, even if it’s a variation of one of my plans. I’ve learned to be okay with different variations of my plans because it’s closer to being in control than not knowing anything about what was going to happen. Not knowing gives me anxiety so bad that I sometimes have panic attacks. Planning and exerting control only helps so much. In the month leading up to the move, my stress and anxiety level skyrocketed. There were still elements that I couldn’t handle beforehand. The new ABA provider and Early Childhood Intervention program were going to require a new referral from a local pediatrician before approval for their care, but I wasn’t able to make new patient appointment for Mateo until we leave Moises’ current posting. We also had not figured out which internet provider we were going to use or which fence company we would rent from. There was a possibility that the movers could be up to a week late to pack or deliver our things. I was trying to decide what we should take with us and what we would let the movers take. We still needed to take the vehicles and trailer to a weigh station so that we could be reimbursed for the cost of the move. I was worried about how the kids would do on the road trip and how far we’d be able to make it before stopping. There was still so much undone that I was anxious about.

And so, after the hours, hard work, and planning that I did, everything was put on hold. The ramifications of which meant that Mateo was possibly going months without ABA and he would miss the deadline for State-run assistance with getting into a preschool that fits his needs. It meant that we would not be getting the house we were assigned and would be placed back on the waiting list. The terrifying part about that is that it isn’t uncommon to PCS and not have a house available to you. What are we supposed to do with our pets and two kids and belongings if we don’t have a house to go to?? I had to renounce my cancelation of our fence rental, call to see if Mateo could stay in his slot at ABA, change our insurance coverages back to Kansas, check with transportation and moving officials to put us back on the waiting list for PCS, and undo everything that I had done.

I was depressed for a few weeks after we got the news. I had a few meltdowns and panic attacks. I was angry that something had derailed everything I’d done. I was furious that this stupid virus had disrupted my son’s education, speech therapy, and behavioral therapy. I was infuriated that I couldn’t get this new start in a place away from where my son died and away from where I lost another baby, away from where I experienced the most grief in my life.

There are only a few things that are making this all okay. I get to spend more time with my best friend. Mateo gets to continue ABA here, and he will maintain all that he’s learning. It means that when we do end up moving, he will regress less than if we had moved on the 1^st. He might have a chance to start preschool before we leave. Brietta can adjust to staying in a room by herself before we’re in a new house.

All of this reminds me of exactly where I am. I am not perfect. I am a work in progress. I still have so much to learn. I need to learn to let go of control. I need to learn to not plan so far ahead because it can send me into a tailspin. I need to learn to not let a change in plans rattle me into meltdowns. I need to learn how to cope with changes, the unknown, and disappointment better.

I’m working on it.

 

Still,

Allie.

Progress and Pride

Being a parent changes so much in your life. It changes what you talk about, what makes you happy, what excites you, and so much more. This last week was a whirlwind of pretty big feelings. I can say without a doubt that ABA has made a world of difference. Mateo is improving so much.

 

In the last week, he’s said:

“Truck”

“Out the way”

“I did it”

“I got it”

“Where’s Daddy”

and

“Turd”

 

And it’s not just blurting words out. He’s communicating.

He’s been saying “truck” when we’re using the truck to take him to ABA. He likes the view from his seat there. He can see a lot more because the truck is so tall. It also makes the “vroom” noise that our car doesn’t (and that’s his favorite part of the Cars movies). He’s communicating how much he likes it and how excited he is to ride in the truck.

He was at ABA and having a hard time getting around another student and told him to get “out the way”. It may not have been polite, but he’s communicating what he wants. That’s important. It’s so important.

“I did it” and “I got it” go hand in hand. He is owning the things that he does and acknowledging the things that he has. The other night, he stole my fork during dinner and he proudly proclaimed “I got it”. I was so surprised and proud.

A few days ago, it was almost time for Mateo to go down for nap time. We usually wait for Moises to get home for lunch so that we can put Mateo down together. Mateo said “where’s Daddy” and went to the window to look out and see if Moises’ truck was there. He was waiting for Moises to get home because his little internal clock told him it was time to be in his crib. He wanted to go to bed and he knew his daddy should be there for it. He communicated his need.

“Turd” is a very special word that Mateo’s grandpa taught him. My dad has called us all turds for a very long time. Hahahaha. The last time we visited home, my dad asked Mateo why he was being a turd and Mateo shouted “turd”. We hadn’t heard this word again until recently. After warning him to stop touching something three times, I took it away from him and put it up on a shelf he couldn’t reach. He was angry with me and yelled “turd” at me. I was so surprised, I barely believed it happened. Later that day, I needed both hands to take care of Brietta. Mateo kept trying to grab my arm and hold onto it. (This is completely normal. When we watch movies, I hold Brietta in one arm and Mateo snuggles up holding my other arm.) I told him that he needed to wait a few minutes because Brietta’s needs were bigger than his at that moment and she needed me. He was angry about that and yelled “turd” at me again. I told him that that was not nice and he does not get to call me that. So far, he hasn’t called me a turd again. Of course, I chastised him, but I’m not actually mad.

I am absolutely delighted that he is beginning to communicate his wants, needs, and feelings. I want it all, good and bad. I am so very happy with the progress Mateo has made. If I’m being honest, I beamed with pride when my son called me a “turd”. It’s funny what you become proud of when you’re a parent.

It isn’t always easy, but I wouldn’t trade being his mom for anything in the world. And the hard days, they pay off. Always.

 

Still Beaming,

Allie.

Getting Over Myself

Admitting you’re wrong is hard. Admitting you don’t know something can be hard. Admitting you aren’t right is hard.
Being a mom has taught me that I don’t know a lot. And I don’t always know what’s best.
I thought, when Mateo was diagnosed, that I had a leg up because of my personal experience with Autism. I do have a better understanding and more patience than people with no experience on this specific subject. But I quickly learned that I need to get over myself.

“If you’ve met one person with autism, you’ve met one person with autism.”

Mateo might be like me, but he is very much his own person. He has his own obsessions, ticks, quirks, and feelings. His experiences will not all be the same as mine. His being non-verbal is already a huge difference between us and our autism experiences.

Just a few days after he was diagnosed, we went out to run errands and decided to stop at a McDonald’s with a play place to let him burn some energy and get a bite to eat. Moises got a special drink for himself and me. We didn’t want to give Mateo too much sugar, so we kept them away from his reach. He ended up getting ahold of one and we let him have a little. When we took it away, a full blown meltdown ensued.
Now, this was not a regular toddler tantrum. It had been building up. It was a meltdown. The sounds of the play place, the bright colors, the deviance from his routine, it was closing in on naptime, and something was taken away from him. He was completely overloaded and his feelings exploded all over the place. He screamed and screamed. He threw himself to the floor. He hit his head with his hands. Nothing made it better. Soothing mommy, stern mommy, patient mommy, concerned daddy, snuggles, kisses, etc. Nothing. We ended up packing what was left of our food and leaving.
Leaving, to me, felt like defeat. It felt like running away from the situation instead of facing it head on. I was upset. I was beginning to face being overstimulated, myself. We had one more errand we had planned on tackling that day, and I still wanted to do it. Mateo had calmed down in the car (little dude just loves car rides). I thought we could do it. One more thing. It’s not that hard, right? Moises insisted that we just go home. I was not about to give up that easily! When you have a goal, you muscle through the hard stuff and get it done!
We ended up having a fight about it and I had a meltdown too. It had been a long time since I’d had one. It caught me off guard. It made me stop and reevaluate the situation. Was muscling through it really what was best for Mateo? Not this time.
I’m a grown adult. I’ve learned to do the hard things and get things done even when I don’t feel good. I’ve learned to not let my autism keep me from living my life. But I’ve had years to learn that! Mateo is just a little person. Sometimes, giving up and going home is the right thing to do. Sometimes saying “we can do that tomorrow because you need your home environment today” is the right thing to do.
So, I am working on getting over myself. I don’t always know what’s best. I don’t always have the answer. I don’t always make the right decision, but I am trying to do what’s best for him. He has time to learn to not let a disability keep him from living his life. He has time to learn to muscle through things. He has time to learn. Right now, he has two year-old things to learn. That is what is important right now.
Here I am, still trying to improve, still working on myself, and learning to get over myself. The journey never ends. As long as we live, there’s room for growth and improvement!

Still Learning,
Allie.

Non-Verbal

Having a non-verbal toddler is hard. A normal toddler has trouble expressing and handling their emotions, but they can communicate their simple needs and thoughts.

Mateo can’t even tell me when he is thirsty or hungry or hurt. He can’t tell me anything. It is beyond frustrating for everyone involved. It is even more frustrating for me, a unicorn in the autism community. I have a way with words. I can, in a normal and calm situation, express myself and my feelings very efficiently. I wasn’t always proficient, but I never had an issue with simple communication. It is endlessly frustrating for me, the person that spends the most time with him. The majority of meeting his needs falls on me. How do I meet all his needs if I don’t know what half of those needs are?

When he was tiny, he would cry and I would know that he needed something. With infants, you go through the checklist. Does he need:

1. A diaper change
2. A bath
3. To nurse
4. Medicine for teething
5. To be held?

Their needs are so simple when they are little. As they grow, their needs become more complicated.

Mateo sometimes needs emotional support. His empathy makes him sensitive to parts in movies where people aren’t being nice. If someone’s feelings are hurt, he will cry. But how do I tell when his feelings are hurt? One upset grunt is barely distinguishable from the next. Often, I can’t tell what is upsetting him.

He doesn’t eat every two hours anymore. He hasn’t nursed since he was 1.5 years old. He can’t pull at my shirt, pat my chest, or do the sign for milk anymore. He has found ways to non-verbally communicate that he wants food, but are we getting it all? Is he naughty sometimes because he’s trying to tell us he’s hungry and we just aren’t getting it? We have no clue!

He is a tall, little dude. I’m sure that he has growing pains from time to time. But he has no way to tell us that that’s what’s going on. I feel so bad. When he’s in pain, I want to help him feel better. But how do I tell the difference between being naughty because he’s bored and being naughty because he’s in pain?

Just last week, he had a cold. He was being a little a-hole* for two days and I had no clue what was going on. He gave no clue about what was bothering him. The evening of the second day, he had a fever. 102.4 degrees. He was miserable. I’m sure he had body aches for those two days, but he couldn’t tell me! He went almost two whole days miserable and in pain and I didn’t do anything about it. I felt like a bad mom. I felt like I should have known, but how could I??

He is slowly, with the help of ABA, making more and more noises that sound like words. He is working harder to communicate with us and things are improving. I have hope that the future looks bright, but some days are just discouraging.

I know there are others that have been in my shoes and survived. Hello, are you out there? If you have any advice, I am open to becoming mom-friends.

Seeking Help,

Allie.

 

*I know that calling your kid an “a-hole” is taboo, but sometimes kids are a-holes! I’m just calling it like I see it.