I have a six-year-old, beautiful daughter whom I love immensely. I am extremely proud of her high intelligence, creative spirit, and artistic talent. She has been blessed with many enviable gifts, but she is also mentally ill, and of my three special needs children, by far, the most challenging to raise. Truthfully, I often find myself terrified of what she could be capable of.
My daughter was a drug-exposed baby who was brought to me when she was a day old, and I loved her immediately! She was never an easy baby though. She suffered from severe acid reflux, which caused her to projectile vomit constantly. She struggled with sleep, had some delayed development, and although she was one of the prettiest babies I had ever seen, as she grew, she also became the most difficult to manage.
Of course, I chalked it up to her age. She was just a bit more naughty than most toddlers. I believed/hoped she would grow out of it. Sure, I knew her birth history, but I also felt confident nurture would outweigh nature. I did not have a moment's hesitation in choosing to adopt her and her brother. If I had a crystal ball that could see into the future, I do believe I'd make the same choice. I love her very much.
What I am finding, six years in, is that nature is not a force to be reckoned with. My daughter is mentally ill. Nothing I do will ever be able to change that. Nothing. And some days, on really tough days, that truth is hard to face.
Over the years, she has made momentous progress. She was completely out of control for so long, and now, she is able to function relatively well. I try to remember that when the really bad days come. My friends and family members remind me, too, and that helps.
Still, the fear is there.
I struggle with anxiety. I fully understand that my brain leaps to wild conclusions at times. I use self-talk to calm myself when I believe I'm being ridiculous. I also talk to others about my fears to gauge how realistic my concerns are. When it comes to my daughter, it is not often that I am told I am being ridiculous.
My daughter has, among several other diagnoses, Oppositional Defiant Disorder; she is impulsive, defiant, hyperactive, dishonest, aggressive (both physically and verbally), and lacks empathy and the ability to feel remorse. The school's official label for her: ED (Emotionally Disturbed). I'm not bothered by any of these labels or adjectives because they are our truth.
To illustrate what I'm saying, I'll give you one example from about two months ago. She and her brother were arguing. It appeared to be a very minor squabble. They were in the living room; Tom and I were in the kitchen, a mere eight or ten feet away. We didn't even pause our conversation because they weren't even raising their voices. Suddenly, we heard loud screaming and crying. She had bitten his lip! I'm talking almost all the way through. There was blood everywhere, and his lip was severely swollen. She was so calm and appeared to be genuinely shocked when I sent to her room while we examined him. After making sure he was okay and didn't need to go to the hospital, I went to speak to her. I tried explaining to her how severely she had hurt him, telling her that he would have trouble eating, smiling, brushing his teeth, etc. for quite some time. She had no reaction, no remorse, no concern for her brother at all. Trust me when I say she is very intelligent. It is, most definitely, not a question of IQ.
For weeks after the biting incident, I was afraid to let the children out of my sight. I know parents often joke about there being trouble when the kids go quiet in the other room, but I don't think most feel the terror I did in the aftermath of that evening. Luckily, it was an isolated incident, and things continued to go relatively well for quite some time.
This week, she had a rough day at school, a very rough day. She had to write a letter to the cafeteria workers that the teacher and I both had to sign to apologize for her lunchtime behavior. I also had her write a letter to her teacher to apologize for her classroom behavior. Although we went through each and every bad choice she had made that day (it had gotten so bad that she had to be removed from class), she actually did not believe she had done anything wrong. I truly felt hopeless that night.
Once again, friends and family consoled me and told me to remember her progress. I was encouraged to not give up. And I'm not.
She is worth fighting for.
I got on the phone the next morning with the psychiatrist, and we are going to make some medication changes. She also told me that perhaps it is time to move past play therapy and on to cognitive behavioral therapy. I called the play therapist and asked her to help me with the transition. The problem? They currently have a very long waiting list. I'm waiting for a call back before I start searching elsewhere. I am in constant contact with her teacher. I will call for another ARD (Admission Review Dismissal) meeting if necessary to discuss other classroom accommodations for her, like increased time an aide is in the room with her. We started a new evening routine at home to try to help. And, of course, we began a new sticker chart, too.
I will NOT give up on her.
It's hard though. I have moments of hopelessness and despair. It's very exhausting. And sometimes, although I know people have good intentions, they actually hurt my feelings because it feels as though they don't believe or understand the difficulty of our reality. I have to remind myself that very few people I know have experienced anything like what we live all day, every day in this house. Of course, they are doing their best to try to help me through tough moments. Sometimes, though, I think a sympathetic, willing ear is what would be best.
You see, the reality is that no matter the quality of the therapy she has, the number of medications she takes, the strictness of the routines we follow, the number of specialists she has, the support systems in place, the positive reinforcement methods we try, the books we read, the lectures we deliver, the discipline we give, the doctors we visit, the prayers we say, the love we show...she remains mentally ill. We have no idea what the future holds for her. That is a truth that is sometimes difficult to accept.
I'm not looking for advice, though if you want to offer some, of course, I appreciate it! This is just what's on my heart right now, and I felt the need to write about it. If you're in a similar situation, take solace in the fact that you are not alone. Too often mental illness is brushed under the carpet, which can make reaching out so much more difficult.
I also ask that if you are not in a similar situation that you show compassion to parents like me. None of my children look like they are not typical children. If we go to a store, I know that I can look, in the eyes of so many, like a "bad," overly-permissive parent who has no control over her children. If one tantrums on the floor, runs away from me, yells, throws things, or removes a mannequin's arm (don't ask), don't immediately jump on to Facebook to report what a horrible mother I must be who needs to spank my child immediately. Instead, give me an encouraging smile, try to engage my child with a "hello," or say a silent prayer for us. The smallest act of kindness can make all the difference in a moment like that.
Today was Troy's annual ARD (Admission, Review, Dismissal) meeting. It is always the longest ARD of the year, and today's was even longer because we had to go over all of the assessment data that has been collected over the last several weeks to reach the determination that he does meet the eligibility for a diagnosis of autism. I won't go into a huge amount of detail about the ARD meeting procedures because that could fill a book and become pretty dry. If you are unfamiliar with ARD meetings, basically, they are committee meetings made up of parents, school administrators, general education and special teachers, a diagnostician, and any other specialists necessary to discuss the special education needs of individual students. At today's meeting, for example, we had a large group: Tom and I, a physical therapist, the school principal, the diagnostician, the special education teacher, an adaptive PE teacher, Troy's teacher, a special education counselor, and a school psychologist were all in attendance. We were missing the occupational therapist.
Each year, progress on previous goals is reviewed, any new assessment data is reviewed, and new goals are developed. Accommodations and services that the student needs are discussed, and plans are put in place. Brief ARDs can be held at any time of the year if necessary. That is the bare bones explanation. If you want further info., please let me know, and I'll do my best to answer your questions. I've sat in too many to count as both a parent and an educator, so I can offer a pretty well-rounded perspective.
Before an ARD meeting occurs, a draft of the reports and proposed goals are sent home so that parents have time to read through it thoroughly and prepare for the meeting. When we received Troy's draft, we combed through the data--and there was much to dissect. I made notes throughout, indicating areas I disagreed with or didn't fully understand. The draft was probably about 25-28 pages long. I agreed with almost everything I read--with one pretty large exception--the occupational therapy portion. I had serious concerns about that portion of the report. You may have skimmed over my list of attendees at our meeting today--the OT was the one person I really wanted to be in attendance today, and she wasn't.
Troy has poor fine motor skills. He always has. He has an official diagnosis of dysgraphia, he can't tie a shoe, he struggles with zippers and buttons, he can't use scissors, etc. His handwriting is horrible -most of the time. He has gotten better and is capable, at times, of good writing, but it is laborsome, and he tires easily and quickly. So, the report that came home said that he had not made progress from his direct services, recommended he use a word processor for his written activities, and completely stop his OT services. It made no sense to me. I could understand and support the introduction of assistive technology, I agreed that he isn't making progress...but I could not support the discontinuation of the therapy. It made no sense to me.
When we got to that portion of the meeting, I was a bit nervous to voice my opinion. For one, the OT was not there. Also, I was afraid the other committee members were all going to disagree with me. (34 years old, and still worrying about peer pressure?!) I was starting to question myself and whether my concerns were justified. But-I thought about the advice I gave recently (Click here for more on that.) I knew I had to advocate for Troy.
So, I cleared my throat and inched forward in my seat and said, "I have some concerns with that." Everyone turned to look at me, and I stated my concerns. I could feel my heart thumping a bit harder as I voiced my disagreement. I finished and held my breath for a moment, wondering what they would say.
What followed could not have been more perfect or comforting! Several of them agreed immediately. They said that they also had those thoughts and concerns when reading the report AND had already discussed their thoughts amongst themselves beforehand. I was told that had I not mentioned it, they were going to! The principal reminded me that we were a committee, and, as a committee, we can determine that that recommendation was not in Troy's best interest. I must have had a huge grin on my face when I heard their agreement and support of what Troy needs. What a sense of peace I felt at that moment and immense gratefulness that this committee of people does care about my son.
The meeting finished-eventually, and we all signed in agreement. The finalized copy of the minutes and IEP goals is 39 pages long! That's quite a bit of information to digest.
I cannot stop thinking about the importance of advocating for our children. I am not just talking about my three special needs kiddos--I'm talking about every single parent and every single child--typical or not. Thankfully, most parents will not have to attend ARD or 504 meetings. But that doesn't mean all parents don't have to advocate for their kids.
A co-worker sent me a text message just last night, upset about an app her son was told to download and use for school. The teacher had very noble intentions, but my friend was upset when she saw some of the other content on the app. It went against her religious and moral beliefs. She had written the teacher an e-mail but reached out to me before sending it. What advice did I give? "Voice your concern! You have to advocate for your children." And she did.
I've been thinking about how nervous I was to speak up in the ARD meeting. I have been in at least 100 ARD meetings-on both ends of the table in the last eleven years. I am comfortable discussing assessment and achievement data and understand standardized testing and can even hold my own when discussing standard deviation. I like the staff that work with my children and believe they are qualified and do care about the kids they work with. And yet-I was nervous to voice my justified disapproval to a room full of these wonderful people.
I started to think about all my fellow parents and the never-ending stream of situations that come up that require us to speak up for what we believe is in the best interest our children. It is sometimes difficult and even scary to do so, and, yet, we do it.
If you are a parent, I know that it can be exhausting and time-consuming and stress-inducing and even terrifyingly nerve-racking to advocate for your children. Do it anyway!
You don't want to wonder what would have or could have happened if you had said something. Believe me when I say that I worked professionally with incredible educators and specialists who genuinely care for the kids they work with. As a parent, I'm thrilled to see it from this end, too. That being said, even when they're doing their best, they don't know your child the way you do. Remember that, and speak up when you feel you need to. I think you'll find that you will be listened to, and you will feel a sense of peace, knowing that you have done your best as a parent.
There is a show on Netflix called Derek. Ricky Gervais writes and stars in the show about a 50-year-old retirement home worker who has a heart of gold and an unnamed disability. I think it's brilliant and am slightly obsessed with it. Anyway, there's a clip from the show that is quite profound. An administrator for the retirement home questions Derek about whether or not he has ever been tested for autism. It's a short clip--less than 30 seconds in length, and it's some of the best writing I've seen on TV. Derek's response is perfect.
His simple response drives home the point that labels are often pointless and unnecessary. Derek is a tremendous asset to the retirement home. That's ALL the guy in the suit needs to know.
Unfortunately, in the real world, labels are a necessary roadblock for people with disabilities to be able to access services that they need. It's an unpleasant fact, but a fact nonetheless.
I have three precious children. All three were in the foster care system and were my foster children before I adopted them. I had the privilege of having so many beautiful children in my home over the four years I was a foster parent, but my son Troy truly stands out as a miracle child among them.
To give you a very brief summary of his background: Troy was removed from his birth parents' home at 9 months of age. He had been neglected and exposed to drugs. He was put into a shelter for children and remained there for a month before being placed in my home at ten months. When he arrived, he did not know how to crawl, play with toys, make eye contact, interact with people, etc. His muscles were very stiff. He required physical, occupational, and speech therapies. With some basic love and attention, though, he thrived! He is a walking miracle.
He is sweet, friendly, obedient, and sensitive. He's crazy about outer space, dinosaurs, and trains. Science is his favorite subject in school, and last year, in first grade, he won the class scientist award. He is a very advanced reader, testing far above average and well into the next grade level. He's an amazing child!
For his many talents and abilities, he has just as many struggles and limitations. He definitely has ADD and a mood disorder and is medicated for both. But there was more. When I was studying autism at the University of North Texas, I would look at the checklists of "symptoms," and I kept thinking about Troy. He met almost every single characteristic. I brushed it off though. He was functioning in a normal classroom. He was clearly not at the same level as his brother Koby in terms of the disorder, so I didn't pursue it.
However, as time continued to pass, new issues continued to arise. He struggles with anxiety, and it seemed to be getting worse. Socially, he was still not making friends. We tried increasing his meds. We asked the play therapist to work with him on anxiety and self-esteem. (I was concerned his self-esteem might be causing problems with his social skills.)
The autism possibility kept gnawing at me. I did some more reading, and I could no longer deny that he truly met the criteria. I called for an ARD (Admission Review Dismissal) meeting and officially requested a full autism assessment to be done. I presented my observations, the others at the meeting gave their input, and we all agreed that there was sufficient evidence to warrant the assessment.
Weeks passed. Then, Friday afternoon, I got a phone call from a district school psychologist. She asked me some questions about Troy, and she told me about her interactions with him and input she had received from his teacher. She had reviewed his file and previous assessments and mentioned some themes and patterns in them. Finally, at the end of the discussion, she told me that at the upcoming ARD meeting, she would diagnose him as having an autism spectrum disorder. She said that she was recommending counseling to help with his anxiety and social skills. I thanked her, and we hung up.
I am now officially the mother of two boys with autism. And I am not at all sad about it.
First, both of my boys are amazing human beings. I am so proud to call them my sons. This label does not change that. Second, having the label of autism blesses them both with the opportunity to have access to services that they need. That big, scary label is actually a key that will unlock doors to help each reach his potential.
When I told my family members, nobody was surprised to hear the news. They all know Troy well. One person, however, said that hearing the news made her heart fall. I was disappointed by that response and did not understand it. I reminded her that it should not have been a surprise. She agreed. But that response really got me thinking.
The main point I'm trying to reach in this rambling blog post is that some people truly are heartbroken when they hear that someone they love has been diagnosed as having autism. Please, please understand this: You should not view an autism diagnosis as a tragedy!
I did not receive a phone call on Friday with news that Troy has an inoperable, terminal brain tumor. I received the opposite news! With this label, he has an even better opportunity at a successful, happy life! I cannot do anything to go back and change Troy's brain into a typically functioning brain. He has autism. I cannot do anything to go back and change Koby's brain into a typically functioning brain. He has autism. What I can do is use the label placed upon them to advocate for them and make sure they receive the best services available to them.
After I received the phone call, I posted the news on Facebook. I did not post it as a sad update--because, again, I am NOT sad. I immediately lost a "like" on my author page! I was shocked! All weekend long, I have wondered who I offended and why. I have no idea, and I'm sure I never will. But it did inspire me to write this lengthy blog post to explain why I do not view this label in a negative light, and I sincerely hope you do not either.