Knowing isn't even 1% of the "battle", but it's still a huge relief

When I was growing up during the years we lived in central Florida, my mother was a special education teacher. Her class had children in it who could not be put in mainstream classrooms - not even by today's more lenient standards.

I asked my mom to let me go to the school where she taught, even though we lived less than two blocks from an elementary school. Every day after my class got out, I went to my mom's classroom and we would often have a student or two or three who remained at school for a variety of reasons. It wasn't unusual for mom to give students a ride home or assist their parents on errands. In one instance, I recall taking a profoundly deaf boy (with severe anxiety if I remember the situation accurately) to be fitted with new hearing aids. He screamed almost the entire time until his hearing aids were fitted. 

1983 - I proudly wore my school's colours (kelly green) and mascot at the Special Olympics. We always went when mom had students participating.

1983 - I proudly wore my school's colours (kelly green) and mascot at the Special Olympics. We always went when mom had students participating.

In another instance, mom went to each of her students' houses to pick them up and brought them back to our house for a sleepover the night before the Special Olympics. That particular year, they were held at the school close to our house and the families of many of her students could not transport them to the event. (Things were very different 30 years ago.)

I am not a teacher. I couldn't do the kind of work my mother did. But I learned so much from the care she took with the students in her class. I learned that children can be born with any number of challenges that may or may not be obvious at first. By far, the most important thing that I learned (even back then) is that there is help and people do care. 

I was really blessed to have those few years that I remember of Mom teaching. Her health forced her to make a career change when I was eight. As an adult, I never feared having a child born with a learning disability or emotional or mental handicaps, as such conditions were called back then. (Sorry. I'm not up on the current terminology at all anymore.) 

There is not much in the world that's cuter than a dinosaur at the dinner table. 

There is not much in the world that's cuter than a dinosaur at the dinner table. 

I've never been more thankful for being the daughter, sister and sister-in-law of special educators than I was on December 12th when I was told that my son has PDD-NOS. It was expected. I heard the words finally and I knew what I had to work with. There were no tears or regrets about anything I've done. I didn't feel a need to grieve over any aspect of Brandon's diagnosis. He has autism, but his future is as bright as it ever was.

Brandon's diagnosis changes little about what we're doing, except that more services open up to us with his diagnosis, but we were already on the right track. We will keep going the way we have been and I'm confident he'll continue to make really good progress.

I couldn't be prouder of him than I am. He is a truly sweet child with a lovely disposition (most of the time). He's funny and smart and so happy. It's exciting to watch this amazing little person growing up and learning new things. He will be fantastic - I have no doubt about it.

The sweetest words I've heard in a year

This week has been rough. 

I was away for part of the weekend at Social Capital Conference and it has thrown Brandon right off. He missed me - a lot. I can’t help but feel bad about that. It dampens my personal excitement over the success of the conference. I know I can’t be with him 24/7/365, but it doesn’t stop the guilt I feel about not being there when he feels he needs me.

Monday, Matt had to take most of the day off to be with Brandon. His daycare tried to accommodate him, but when a single child out of 50 needs one-on-one attention for a significant portion of the day, it can compromise the safety of other children and stress resources too thin and that’s not fair - to the children or the caregivers. 

Tuesday, we met with the Developmental Pediatrician. For the second time Brandon didn’t want to cooperate with completing the assessments. He has it in his head that when he goes to her office he gets to play with Lego. Sigh. 

In the end, she was once again flexible. She gave him the Lego and then observed him. She spent a lot of time talking to us about our concerns and asking questions. It wasn’t productive in the way we’d hoped, but it wasn’t a waste of time. The most important part for us was when she looked me in the eye and said (I’m paraphrasing):

You know this isn’t about your parenting. You’re doing a good job with him. 

I told her that was good to hear because we’d had it implied that we’re not doing a good job as parents. And, of course, we all need as much fuel added to the fire of doubt that comes with parenthood. Yep, we sure do. She responded (paraphrased again):

I figured you had. This isn’t your parenting. It’s definitely something else and we have to figure out what that is.

Sweet relief. Music to my ears. Confidence booster. Tear-inducer.

You see, we do what we have to do to maintain peace. Sometimes that means we spend money on Brandon that we’d rather not spend. Occasionally that means giving him food that isn’t exactly the healthiest. The odd time it means that we don’t go places we really want to go because it’s easier than forcing him.

It never means that we compromise his long-term health, immediate safety or security. 

If there’s one thing I’ve learned as a parent it’s that everything I believed about parenting before I had a child was mostly a load of crap and I’m quite willing to go completely against those things to reduce the stress on all of us. We have enough unavoidable stress that we don’t need to add to it by trying to force a child to do things that he’s absolutely unwilling to do.

If that makes me a bad parent in some people’s eyes, that’s fine. If people think I’m spoiling my son, that’s fine. They’re entitled to their opinion, even if it’s wrong.

Today we had another rough morning. Brandon’s daycare was going on a field trip to the beach and all children are required to wear a tee shirt. He didn’t want to wear one. He only wanted to wear his life jacket, which he can’t safely wear in the car. So, he didn’t get to go on the field trip and that breaks my heart. I know he needs those times to help him learn. He needs those opportunities to develop socially. It won’t happen when he’s at home with Matt or myself. That’s three days in a row this week that he’s stayed home (or been sent home) from daycare.

I don’t know what to do. I’m nearly out of vacation and I have no more sick days and though Matt has more than I do, it’s not realistic that he carry the load alone. It’s especially unfair to him when Brandon really needs me and doesn’t respond positively to Matt’s presence. Sigh.

One day we’ll figure it all out. I hope. 

The greatest learning experience ever

Having a child has been, by far, the most enlightening experience I’ve ever had. 

Realizing that he has special needs beyond what is considered to be normal has been an overwhelming learning experience.

We just got home from our first appointment with a developmental pediatrician, who was wonderful. Really, really wonderful. Despite not being able to finish her assessments, she was able to observe some things about Brandon and teach us a bit more about autism spectrum disorders.

I don’t have a diagnosis yet, but I have a suspicion of what it might be and it’s not quite what I expected before talking to the doctor this morning. At the same time, it’s not going to be a complete surprise. I refuse to quantify it as good or bad. It is what it is. No matter what the doctor says, we will have challenges ahead of us.

To say I’m completely okay with it would be a lie, but I don’t feel upset. I’m not sure how I’ll feel when I actually hear and process the words from the doctor, but we have a few weeks before that will happen now. Maybe even longer.

A slight reprieve - time to prepare mentally and emotionally.

Most of all, I’m just ready to get to work on helping Brandon. There are more assessments to come and therapy and it’s time to get started. We’re finally moving forward. It’s good. Sometimes scary, often overwhelming, but definitely good for him to get help that he needs.

My child is just like every other kid - he's weird.

I love this quote. One of the PAB speakers used it and I’ve adopted it as my personal mantra.When I was a child, my father (who reads my blog, so I’m totally going to bait him a little) essentially brainwashed myself and my brothers to believe that the statement, “You are weird”, was a compliment. Dad, who I often refer to as a walking dictionary (because of his freakishly large vocabulary of freakishly large words) liked to teach us the meaning of words - sometimes in a thesaurus kind of way. Sometimes in a dictionary kind of way. (I knew the meaning of hyperbole when I was about eight, because dad liked to use hyperbole…a lot.) Weird was more a of thesaurus word from his alter ego, the walking thesaurus.

Being called weird is a compliment because it means you’re unique.

As I child, I think I often mentally rolled my eyes at Dad’s brainwashing. As a mouthy teen, I fought back with, “Yeah, I’m unique; just like everybody else.” (I think my intent was to irritate my dad, but somehow he thought - and still thinks - my response is hilarious.) But today I appreciate Dad’s perspective, which is confirmed quite nicely by Thesaurus.com if you look up weird and unique.

We are all weird!

As I’ve started talking about the process of getting Brandon assessed for developmental delays/disorders, something interesting has started happening. Friends and acquaintances that don’t know Brandon (or don’t know him well) listen to one or two of the reasons we’re having B assessed and jump in with, “Oh, my kid did that; that’s normal!” 

This rubs me the wrong way and I feel like I have to justify what we’re doing even though I know that this is the right thing to do for Brandon to ensure he gets the absolute best start possible. And yet, I think the intent behind this statement is basically good. People want to reassure me that my son isn’t “abnormal” or somehow flawed.

Normal is relative

My beliefs about this process as it relates to my son can be summed up in three points that I shared on Kids in the Capital recently:

  • Nothing is “wrong” with my son. He is exactly right just the way he is.
  • Assessments are just a jargony way of saying you have to be creatively vigilant and diligent to learn how to reach a child in the way that works for them.
  • I will do whatever it takes to help my son, because just as I get to share my stories in a way that works for me, I want him to find a way to share his.

My motivation behind getting him assessed is not to highlight all the things that are “wrong” with him. It’s to figure out how we can change what we’re doing so that our communication and behavior is right for him.

Put more simply, I want to know what I can change to help him. The assessments aren’t about changing him at all or making him more “normal”.

“Normal” is not interchangeable with “Norms”

Raise your hand if you have ever or know a parent who has ever compared their child with another child. Pretty much every person reading this in the western hemisphere should have their hand up (which kind of amuses me to imagine), because we ALL do it.

The problem with these comparisons is that not everyone knows what norms are. Often, what is within established norms is confused as “normal”. Having been raised by a walking dictionary, I often refer back to the dictionary for precise meanings:

Dictionary.com defines “norms” as follows (I skipped the lengthy math definition):

a standard, model, or pattern.

general level or average: Two cars per family is the norm in most suburban communities.

a designated standard of average performance of people of a given age, background, etc. (re: education)

a standard based on the past average performance of a given individual.

the greatest difference between two successive points of a given partition.

But what is “normal”?

Normal is complex and, in my opinion, completely relative to personal experiences. The dictionary definition of normal doesn’t address societal interpretations and connotations behind the word. Behavior that can appear normal for one person/child may seem completely out of left field for another.

Brandon is the only child I’ve had. We don’t get to be around other children very often. We had a sense that he was delayed in certain ways, but we erred on the side of “wait and see”. It wasn’t until his caregiver (who is around other children quite often) spoke up about her concerns about where he was at compared to children two years younger that we knew we needed to get him help.

I don’t need or want to be placated.

I have a plethora of specialists who are trained to spot areas that we can work to help Brandon. We know there are challenges to overcome. I’m trying hard keep a level head through this process rather than be an emotional basketcase.

Parents of children who are going through the assessment process already have enough doubts about our parenting abilities. It’s incredibly frustrating to do the instinctive things parents do and find they don’t work. Experimentation with methods that may seem to outsiders like coddling, spoiling, helicoptering and other negative terms can lead to judgment from others about our parenting abilities. That’s going to happen with strangers - there is absolutely nothing any of us can do to stop it.

But I hope that people who know me can recognize that, like any other mother (and father), we are doing our very best to do the right thing for our child. It isn’t unusual for even siblings to need different things from their parents.

It’s not inequality.

It’s parenting individuals.

Individuals who are weird.

So, I won’t tell you your kid is normal if you don’t tell me mine is, because who on earth wants to be normal? It’s much better to be weird.