Like a Mother

Redefining Motherhood

Surviving Special Needs

This is a Political Post, but it’s NOT What You Think

I rarely get political on public forums. And we can debate at another time about whether or not that’s a good thing or a bad thing, but let’s just say it’s my thing right now. But, today, I’m getting a little bit political.

Today, Senators Markey (D-MA) and Capito (R-WV) introduced a bill to ensure that students who are deafblind are provided the fundamental supports they need in order to receive an appropriate education. My oldest son, by definition, is deafblind. This piece of legislation is extremely important to my family.

The Cogswell-Macy Act, named after Alice Cogswell, the first deaf student to be formally educated in the United States, and Anne Sullivan Macy, Helen Keller’s famous teacher, was introduced earlier this year in the House of Represenatatives by Congressman Matt Cartwright (PA-17) and Congressman David McKinley (WV-1). If signed into law, this legislation will ensure that students who are deafblind, blind, visually impaired, or deaf or hard of hearing receive the expert instruction and services they need to succeed in school and beyond.

This Act would ensure that all students who are blind or visually impaired receive the state-of-the-art services and skills, provided by trained teachers. Likewise, it would ensure that students who are deafblind or deaf or hard of hearing are served by qualified personnel who can meet their distinct learning needs.

In addition, this legislation requires states to identify, locate, and evaluate children who are blind, visually impaired, deaf or hard of hearing, or deafblind, regardless of whether they have additional disabilities. Children with sensory disabilities are not always identified properly, especially if they have additional disabilities. This means that these students may not have their learning needs fully evaluated, which impacts the resources that are allocated to addressing their needs. The Cogswell-Macy Act would require states to provide meaningful data about students who are deafblind, blind, visually impaired, or deaf or hard of hearing, regardless of whether they may have additional disabilities. This will expand knowledge about the quality of special education and related services they receive. Having such data will also allow for ongoing improvement of programs for students with sensory disabilities.

For my son, THIS IS HUGE!!!

We are fortunate that we live in a wealthy school district, and my son receives many of the services that this bill will require. Was it easy to get these services? Absolutely not. I did a lot of research, attended trainings, communicated with experts in the field of deafblindness, and advocated LIKE A MOTHER to get them for him. I don’t take for granted that my son has the services he has because I have a background in research, a personality for negotiation, and the time and resources to do the work required right now to get these services. Even with my knowledge and effort, these services are not guaranteed. I know of equally educated and dedicated parents in other school districts in other states who are still being denied the appropriate resources for their children. Why? Because it’s technically not the law.

But it will be… if the Senate passes this bill, the law will change.

You can help! Please contact your Senators (you can look up their contact information here) and ask them to support The Cogswell-Macy Act. My friends have even helped write a handy script for you to use when you make the call or send the email:

My name is [name] and I’m a resident of [city, state]. I’m calling to ask Senator [name] to support the Cogswell-Macy Act. I support this bill because it will improve access to important and necessary education and services for children who are blind or visually impaired, deaf or hard of hearing, or deafblind. I am hoping I can count on Senator [name]’s support. Please let me know [his or her] position on this bill.

Today, and always, I’m inspired by the words of Helen Keler, “Alone we can do so little; together we can do so much.” Please join together with me and ask your Senator to support The Cogswell-Macy Act.

Celebrating My Work Anniversary

I just celebrated my 12th anniversary at my job. Twelve-years! It really is an accomplishment, isn’t it? How many people do you know who have been in the same job for twelve years?

This job was the one I always thought I wanted. It took me almost a year to even be considered for it, and then another eight-and-a-half months for me to get the offer. And when that day finally came, I was so excited. This was it! I was going to have everything I dreamed of having!

Quickly though I learned that the reality of my dream job was far from the picture I had in my head. Even though I had read about the job, talked to others in the position, and felt like I did my research about my future employer, things did not go as planned.

The first day on the job was crazy! For starters, I was asked to start four weeks earlier than I had anticipated. At first I didn’t mind, because I was really excited, but that first day was nothing like I had expected it to be. Nothing went according to the plan I had made, and when that day was over, I was left in a haze wondering what I had missed in the job description. I found out my first month would be spent at an on-site location, something I definitely had not planned to do. Friends were calling and asking about my new job, and I had no idea what to tell them. I think I was a little in shock about how different it was from how I thought it would be.

The next few months brought on more challenges. Off-site appointments I had not anticipated. Team members who regularly came in to work with my new boss, and to teach me how to work with him. It was really stressful, but I knew I couldn’t quit! This was the job I always wanted after all. I knew I had to do my best.

But after about six months, I recognized I needed help. I was working so hard, staying up late doing additional research, still attending many extra appointments and continuing to work with experts in the field to get additional training. I finally asked one of those experts about support for people in my role. Thankfully there was a group of others in my job with similar experiences that I was able to connect with. They helped me realize that even though my job was different, I was still doing really well at it, and they taught me new ways to handle the day to day. Without their support, I might have quit, but I stuck it out.

A few years into the job I got another boss. Now I had to report to two people! This second boss was more typical, although still demanding. At first working with her seemed a lot easier, but as the years went on, I found that while the challenges of working with her were completely different from working with my first boss, she still could make my life difficult when she wanted to.

And then almost five years ago, I got a third boss. Yep. I report to three different people right now. Some days it makes me wonder what the hell I was thinking when I agreed to do this, but other days I realize my third boss is kind of my favorite. (I know, you aren’t supposed to say that in the workplace, but it’s true.)

Are there days I think about looking for a new job? Yep. I do. I love my bosses, but this is the most demanding job I have ever done! Before this, the longest I held a job was four years. And that job gave me four weeks of paid vacation! This job… um, there’s no paid time off. I did start taking a little more time off recently, and that has helped me stay focused on my role in the company when I get back to work. Sometimes it’s good to step away to gain some perspective and remember why you love your job.

Yes, twelve years ago, I got the job. My title? Mom. Sometimes also referred to as Mama, Mommy, Mother or Mum. And in my case, I got the extra title of Special Needs Mom to my first boss, my son with a rare chromosome six deletion who has multiple physical and intellectual disabilities. This job hasn’t been anything like I expected, and I don’t always love it. But my bosses are pretty cool, and I love them with all my heart, so I will keep showing up.

How my kids survive while I’m away (Spoiler alert, they have a DAD!)

If you read my earlier post about roaming (if you want to), then you already know I like to go away without my kids. And for the past 18 years, I’ve been getting together with my three best friends from college every MLK weekend, so I’m heading out again today.

When I tell people about my annual trip, at least one random person asks, “Who’s taking care of your kids this weekend?” to which I reply, matter-of-factly, that my husband is at home with the kids.

Random person: “Oh, and he’s okay with that?”

Me: “Um, yeah, why wouldn’t he be? He is their father.”

Thanks to countless posts, we all should know by now not to call dad the babysitter. But I still get that comment. As other writers have chided, this implies that dad’s not capable of handling the children for a few days on his own. Insulting. But it also implies that I wouldn’t want him to.

Listen, I am totally okay with dad doing it all for a few days. And yes, I’m still okay even if he doesn’t do it like I would.

Look, I can admit that the first year after having my first child, I probably went a little overboard prepping my husband for the trip when I handed him four pages of instructions. But in my defense, our first child had unique medical needs, so instructions included things like a tube-feeding schedule. His mom also lived two miles away at the time, so I knew he had back-up close by if needed, and I’m pretty sure she was there most of the weekend.

Did I worry? A little. It was the first time I left my baby other than when I had to go home each night from the NICU. But after seven traumatic months of dealing with surgeries, and tube feedings, and hospital stays, and therapies, and all the other extras my firstborn came with, a weekend away was exactly what I needed. I was able to laugh and cry and release the stress of those seven months with three people who I know love me unconditionally. It gave me the strength to go back into the trenches and handle the challenges of my reality. I will be forever grateful for that weekend!

As the years have gone by, and life has moved us eight-hours away from my mother-in-law, my husband now spends the weekend home alone with his three children. My formerly four-page list of instructions is now a half-page of bullets with only the most pertinent information like the time the bus will drop the kids off on Friday and the pediatrician’s phone number.

Does my husband do everything like I do while I’m away? Nope. Are my kids happy and cared for? Yep. Will they get out of their pajamas Saturday or Sunday? Probably not. Do I care about that? Not at all.

My husband knew going into our marriage that this was part of the deal. Girls weekend was non-negotiable. He decided I was worth it, and committed not only to me as his wife, but also to me leaving every January for a three-day weekend. It was part of the vows. (Not really, but it should have been.)

So yes, my husband has the kids this weekend. Alone. And they will survive without me for a few days. And I’m totally cool with that.

I hated you when you wished for your child to “just stay little”

I hated you when you wished for your child to “just stay little,” but now I understand.

You’ve said it often, in many different ways. “Why can’t they just stay little?” You would lament as you saw your baby changing into a toddler… a preschooler… a kindergartener.

I swore I’d never use that phrase, because I know that if given the choice, you would not choose a child who didn’t grow up. I know because I have one.

I saw my first son grow slowly and develop even more slowly. Then pause, stop, and repeat, while never making more than subtle and calculated progress towards his milestones. And while we celebrate every single tiny accomplishment he makes, it sucks to see his peers growing-up as he should have knowing that he’s never going to be like them due to his developmental disabilities.

So when my daughter arrived, I cheerfully applauded as she hit those milestones. I celebrated her tenacity and spunk as she reached each new age and stage. I even proclaimed out loud how amazing it was to see her grow and develop and become the adult she would be one day.

And then her younger brother arrived, and I stuck to my oath again. This time I was more cognizant that this was very likely the last time I’d see a baby grow in my arms. I swore to myself again, and added that this time I would take it all in. Breathe in every moment as my last baby grew, and changed, and developed.

And I did, at first. I celebrated as he grew, but noted it all. I took more pictures, and tried hard to document on paper and in my mind all the things I loved about my baby, and then about my toddler, and now about my preschooler. So. Many. Things.

But now his sister is older, approaching tween status. She’s still spunky, but sassier now, with most of that sass directed at me. She doesn’t need me as much. She is strong willed, dramatic and oh-so-stubborn. All traits I remind myself will serve her well someday, but that currently try my patience in a way I hadn’t anticipated. Now instead of seeing the adult she will eventually become, I see the teenager I’ll meet first, and I’m a tiny bit terrified of what’s to come.

Meanwhile my baby boy will start Kindergarten this fall. He still looks at me with nothing but love in his eyes. He still wants hugs, kisses and snuggles and asks for them regularly. At bedtime, he offers me a “really better hug” before he lays down with his monkey and curls into a little ball to go to sleep. I want to pause, stop and repeat. I don’t want this to change.

So I apologize to you for judging. I get it now. I understand what you want to hold on to. It’s not the diapers, or the temper tantrums, or the lack of communication, or the constant attention that I still have to give to my oldest son, who is now 11-years-old but developmentally still at the level of a young preschooler. It’s the moments you know will never happen again as they are happening now. The moments that you will miss as your child grows into their own. It’s not that you didn’t want to see them growing up, or didn’t appreciate the changes that happened along the way, it’s that you know that someday soon the offers of a “really better hug” and unlimited snuggles will go away. And while you will have those memories that you’ve documented into the fibers of your being, you just hope for one more day to observe and take note.

 

Photo credit: Photography by Caitlin Domanico, co-author of Photographing Motherhood.

No. Everything Does NOT Happen for a Reason.

I’ve heard all the platitudes since becoming the mom of a child with special needs. Whether it’s “God never gives you more than you can handle,” or “God only gives special kids to special parents,” or my personal favorite, “Everything happens for a reason.” Well, I’m here to tell you that they all suck.

I totally get that people are just trying to say something comforting, and the good angel on one shoulder wants me to keep smiling politely and say, “Thank you” like a good girl to keep the peace. But that smart-mouthed devil on the other shoulder (the one who actually isn’t afraid to speak her mind) – she’s ready to call bullshit on your supposedly comforting statements.

The comfort given is supposed to comfort the person receiving it. When you tell me that my son’s disabilities happened for a reason, you are basically telling me that I needed to learn some life lesson from the Universe (or God or whomever decided this so-called reason) and that the only way to teach it to me is to give my child a life-long hardship. Well, gee, thanks, because now I feel even shittier about myself.

“Oh, but Lynne… can’t you look back and see how having your son has changed your life for the better?”

That’s the typical argument – someone ultimately points out how a fight with a spouse led to being late for a bus that crashed, or how a terrible accident led someone to find their life’s purpose, or how a child with special needs made me a better person. But I still respectfully disagree. Things happen by chance or by choice.

How do you know the changes you made in your life would not have happened anyway for another reason? There are always choices and catalysts for our decisions. We have no idea what would have been and if that reality would be better or worse than the one we live.

No, it’s our perception of the events that leads to the changes we make. I can see where unexpected circumstances led me down different paths, but it’s the decisions I made and how I reacted to what happened that made me who I am. Believe me, I could have reacted much differently, and many people do.

I have trouble believing in a world where getting hit by a car or having a disabled child was “meant to be.” A higher power that thinks the only way to get through to us is by making someone else suffer would have to be one spiteful mofo, and I just don’t think that’s true.

But I do believe in a world where your circumstances don’t define you or me. They might force us to make tough choices and blaze a new trail than the path we thought we would take, but we are still in control of those choices because life is a choose-your-own-adventure book, not a how-to manual.