When I received my diagnosis for Fibromyalgia the first emotion that hit me was sheer relief. I wasn’t crazy. The pain wasn’t in my head. I hadn’t imagined that life was getting harder. It actually was. Shower’s hurt. I still need to sit and rebuild my stamina before getting dressed after a warm shower, especially in the winter. Reading Political Science Theory (one of my favorite subjects) exhausts me, physically. There were and are real physical ramifications to my condition that pushed my family to start asking questions about my health. My husband was worried. My children noticed that I was slowing down. My mother was asking me to research why and find out what was going on. But it was about me. So therefore, I did nothing. For a long time I just dealt with the pain. When I finally went to the doctor to ask about my issues they ran tests… and nothing came back positive. They sent me to specialists and they ran more tests… and it was more of nothing. Finally, after about a year, (and that’s a short time frame for this process) of my husband forcing me to continue making appointments, I found a Rheumatologist who knew what was going on with me. He said I had a classic case of Fibromyalgia. The trigger points that were highly sensitive, the sensitivity to touch, the brain fog…it all fit. I was relieved. I wasn’t crazy.
It’s been over a year since I’ve last written. A lot has changed. I’ve come to acknowledge my health issues and I’m learning to live with them. I’ve been learning to say no. I’ve been trying to be purposeful in our homeschool. I’ve been actively working towards making my life cozy, not just in appearance but in a way where we actually love living everyday – even the hard days. Half of the year I teach, half of the year I volunteer but all year long I try to work on building my own interests. Yet even with all of this the one thing that I was adamant about this year was advocating for my children.
I knew they were gifted. I knew they were struggling. I knew that they needed something that the average homeschooling blog and a stack of education books just wasn’t giving me. I had no proof other than my own research skills but I knew that everything led to the same conclusion. In the same way that I knew that Little Man was more than just a bright, active little boy who needed more exercise, I knew there was more going on. He was speeding through information as if it was water and yet struggling to remember anything that wasn’t absolutely fascinating to him. Just like I knew that Little Miss was having a harder time with reading than she should be, even if she was technically too young to tell, there was more there and I knew it. She was arguing complex concepts or dissecting literary concepts I had never explained to her but she could not separate phonemes or even recognize the same letters out of context. I also knew that Curly Que was having a really difficult time with math. Sure she was consistently working ahead of grade level or at grade level in every subject, but she was working too hard to understand the Math when compared to how quickly she picked up every other subject. For an embarrassingly long time I wondered if she wasn’t just a happy, bright but normal child, but I thought that too when Little Miss was still in the “normal age” of learning to read. I know that Little Bitty is gifted, just like I knew Little Man was, no test to prove it but anyone who knows her questions how so much is contained in that small body. She is consistently keeping up with her two sisters (who do everything together) and even outpacing them from time to time in some places- when she wants to. So far she isn’t showing signs of distractedness or impulse control issues or EF problems like the others did (or at least not to the extent that the others did) and she doesn’t have a specific area that seems to slow her down, yet… but at 6 neither did Little Man. Where he was a sensory avoider, she is a sensory seeker. Where he jumped ahead in language acquisition, she jumps ahead in mathematics. They are so alike and yet so completely opposite that I just figure there’s nothing to be done with her but to wait and see. All of this I know, I knew. Before testing, before an assessment, I knew.
This wasn’t some desire to be a part of some elite club. I wasn’t identified as gifted as a kid. I wasn’t in one school long enough, I was a girl, I was Latina, I was military, it was the 80’s/90’s that didn’t exist… who know’s why, but I slid under the radar and was forever the weird kid. Sure I was the nice weird kid. Sure I made some friends…kind of. I had skated by, possibly 2E me had somehow made it all the way to high school without being noticed. So when I started researching what was going on with my kids, I thought this was all in my head. Others insinuated that it was all in my head. That I was one of those parents trying to push my children to do more, faster, than was developmentally appropriate… but I wasn’t. I was just trying to meet my child where my child was already at. I remember how boring most situations and places were. I remember analyzing how people acted and how their facial features contorted in order to figure out how smart I needed to be that day. I remember teachers commenting on my potential. I remember daydreaming, a lot. I remembering forgetting what the teacher was talking about while she was talking. I remember struggling with math concepts and being much slower than everyone else but my grades were too high for anyone to notice while still being the lowest of all of my grades. I remembered all of this and I wanted better for my children. Don’t we all? Isn’t that the universal cry of parents everywhere?
You see I knew my children were different, and I homeschooled them to help, but it wasn’t enough because I didn’t know how different they were. I needed help understanding exactly what I was dealing with. So I went to the Doctor. Again. and Again. and Again. and Again. If I could have afforded the cost, with hindsight, I would have just paid the money for an out of pocket full assessment. But we didn’t have that kind of money. We were forced to go the death by referral route within our insurance. For us the struggles were interfering with daily life and we needed answers. For each of my three oldest children.
After three years of advocacy, this is what I’ve learned.
Not every doctor can tell the difference between severe ADHD + Giftedness and a completely normal child.
Not every doctor can tell the difference between a child who is just slightly behind in reading and a child with severe Dyslexia + Giftedness.
Not every doctor can tell the difference between a child with Dyslexia and Dyscalculia + Giftedness and a neurotypical child.
Not every doctor will be professional and keep their opinions about homeschooling out of the testing process.
Not every Doctor will even understand what a Neuropsychological Evaluation even is and this makes the process longer.
Some will have never heard of sensory processing disorder and will tell you, without listening to why you are in their office, that your children do not have autism because they can look the doctor in the eye.
Some will still claim that ADHD and Dyslexia do not exist. Still.
After meeting each of these kinds of doctors and leaving in tears or with formal complaints in hand, it was a relief to meet a series of professionals who listen to the children they test (and their mothers), who are up to date regarding the research, and who generally treat every person who walks through their door with respect.
Looking back know I should have known which ones were going to be helpful and which ones were not. The unhelpful doctors looked at me like I was crazy. Like this was all in my head. The helpful doctors listened to what I was saying, took the time to talk to my children and often asked me why I was there and what I thought. They sought my input.
Finally, after three years of fighting to get answers, I feel that same relief as before. I am not crazy. I was not making things up. I have the paperwork to prove it. But more importantly, I am armed with a better understanding of my children and that helps me to be a better mom and teacher.
I knew that Little Man had ADHD but I didn’t KNOW. I didn’t want to give him excuses so sometimes I was strict when I should have been understanding. I knew he had issues with executive functioning but that didn’t meant that I was regularly on top of giving him lists for things because there was a chance that he just needed to try harder. I know how hard I’m always trying and yet my executive functioning issues get in my way but I was afraid of making excuses for him and as a result I only sometimes approached things as teachable moments and sometimes as frustrated mom who just can’t do this anymore. It’s been two years since his diagnosis (he was first) and it has made a huge difference in how I parent him. I pick my battles. I make extra time for forgetfulness. Yet even with knowing that he had ADHD I had no idea how bad it was until he was fully assessed. Why would I get him fully assessed even though I already know he’s super smart and has ADHD? Because puberty is almost here and his memory has gotten worse. It has become so bad that I was wondering if there was a case of stealth dyscalculia going on (especially after his sister was diagnosed and that runs in families) but it wasn’t. No learning disabilities at all for him, just one of the lowest possible working memory scores based on the test he had taken. NO WONDER! Suddenly all of my biggest school issues made perfect sense. It looked like he was slowing down, that little boy who consumed new information like water was now refusing information or fighting it. That kind of a major personality change made sense with this new information. As he had slowed down, so had I. Rather than continuing on with information that was fascinating and interesting and moving at the speed he had always thrived at, I had slowed down to remedial work to keep up with his output. I’ve since stopped that. The memory work is still there but its a very tiny part of a much bigger selection that actually interests him and because he’s interested in the other parts that challenge him, he works well on the remedial parts that are necessary. I would have never figured that out without the assessments and I am so glad that I know that now. It has also helped his relationship with his father. Now that it’s not just me saying this is what’s going on, his father is able to be more understanding when it seems like he’s ignoring directions- he’s not, he’s just still focused on the first one you gave him. The evaluation helped us, both of us, to understand him and our relationships are better because of it.
Curly Que’s assessment was a huge surprise. I knew that she was struggling in math. I had no idea that she was struggling with reading. What I thought was distractibility and impulsiveness was frustration and anxiety. My girl has stealth Dyslexia (no they don’t call it that but it is what best describes her) and Dyscalculia. I had no clue how hard she was working every single day. She is so smart that it looked like she was at or above grade level in everything and yet she was struggling this whole time and holding it all in. I am a better parent to her because of this. I know that I have to give her more breaks. She is also in OT for sensory issues but some of those sensory issues were anxiety reactions to the sheer frustration that she felt regarding school. Gameschooling is so good for her. So is baking. I have had to be more open about what I accept as school work and I have to be more purposeful about the atmosphere that we’ve created to meet her where she is. She needs both. She still wants to be an engineer but now she wants to travel the world helping small communities and she still loves math, even if its hard.
The insurance didn’t see a need to give Little Miss a full evaluation, and frankly neither did I because her SLP was an amazing woman who really gave us a thorough understanding of just how hard she’s working every single day. It is a very real struggle for Little Miss in ways that Curly Que hasn’t let on. Phonics lessons are becoming more of a mainstay in my curriculum, regardless of how advanced her literature books are becoming. So are Audiobooks. So many Audiobooks and Podcasts… too many to listen to in a week. She still loves Shakespeare, Tennyson, and Robert Louis Stevenson. She still loves to write even if she is just now remembering to add vowels to her phonetic spelling. She hasn’t lost the love of language that she was born with, which in its own way is a beautiful thing.
Little Bitty tearfully exclaimed in the doctors office that she wants Dyslexia too, its not fair that her siblings all get their own cool superpowers and she does not. I warned her to be careful what she wished for. She has her own superpowers, she just hasn’t figured out how they work yet.
I’m proud of my superheroes. They are learning to wield their super powers for good. I use to joke that they would either save the world or destroy it, only time can tell which. Now I’m leaning more towards saving it. They are growing into such compassionate children and their struggles don’t define them but they have helped shape them into passionate and determined children with a wicked sense of truth and justice all backed with an ability to preserver that I could not have fostered alone. I’m excited to be on this journey with them, to see what they grow to be.
In any case, I called it. That duality that I saw in them that screamed there was more beneath the surface… I told you so. the assessments proved me right, but even before they occurred, I knew it all along.
It was never just in my head.
I should have trusted myself.