So, your kiddo just got quite the diagnosis, huh? A disability. Something you never think will happen to your family. I’m guessing you’re either crying non stop, or numb and feeling nothing at all. And whichever it is, the other is bound to happen any minute now. I remember those days well.
I could say a bunch of positive things: “Keep your chin up…” “God doesn’t give you more than you can handle…” “At least now you know what you’re dealing with…” but I know from experience that it won’t matter. Everyone needs to deal with news like this in their own way, and at their own pace. So here is what I will say: Dude…that sucks.
That SUCKS. No one asks for this. No one asks for near impossibility in what should be simple developmental milestones, for never feeling 100% a part of the group, for having to refigure every aspect of the life you had imagined. So take your time. Cry, scream and curse.
But here is my bit of positive: you will be happy again.
I know it doesn’t seem like it right now. I very clearly remember thinking I didn’t know how I would ever feel joy again; I couldn’t imagine, with all the extra challenges we were going to face, how the enormity of those challenges wouldn’t cast a shadow over every activity in every minute of every day for the rest of my life.
But the anger began to ebb. Not all at once, it was quite the roller coaster – but you can’t have peaks without a few valleys. Eventually, the roller coaster became a nice plateau, with the intermittent dips that are to be expected. Then one day, I woke up with that comforting feeling of “happy” that I used to take for granted. It was nice to feel that again. As they say, life goes on. And as I say, receiving a disability diagnosis for your child is a life changer, not a life stopper.
Figure out how to move forward. Do all the tests and prioritize your therapies. Ask all the questions, get mad when no one can give you a straight answer, and then do what you think is right. And figure out how to still be you. What fills your bucket – your interests, your marriage, your friendships, your career (or not).
I read and run. My husband and I are very active with our kiddos, and in supporting each other. Life is busy, but I have a solid core group of friends I draw immense strength from (thank goodness for text messaging). And I found a company that keeps me challenged and energized while being flexible enough to allow for the things my family needs. These pieces didn’t all fall into place at once, and will need nurturing and adjustment, but they did fall into place. They will for you, too.
That doesn’t mean to say something won’t happen to throw all this in a tizzy next week. And by no means do I want to imply that this will be easy. Just last night, I read my daughter’s most recent preschool report; the most positive thing in there was that she is steady when she sits on a chair. That’s fine. While seeing the words on paper is jarring, I need those reports to be accurate. Today, I will go in and ask how we work to make it better.
So Mama, take your time. I don’t see any point in rushing yourself through what is a necessary adjustment process. Be mad and confused, be lost and unable to understand, hate the world. Just remind yourself, in the moments when you can stomach a bit of positive, that the light in your life won’t always be that dim. You will be happy again.
The time of year and political climate have me aching to hear something good. I recently asked my Facebook friends: How do you give back? I loved some of the responses I got and was inspired to share.
I think it’s common for people to want to do good, but to not know where to start. It can be hard to find the time, the right fit into your lifestyle, or an opportunity that really feeds your soul.
In this first post, two marvelous women I’m lucky to know – one a coworker, one from my childhood – have found or created volunteer opportunities that make the world a better place and fit with their passions. Katie #1 volunteers her time at a book store largely dedicated to social justice and activism. Katie #2 collects coats for school kids, and works with her children to bring joy to seniors in a nursing home.
How do you make the world a better place? If you’re looking for the right fit, maybe these ladies will inspire you (they sure did inspire me!).
I volunteer at Boneshaker Books, a community supported, collectively organized, volunteer run bookstore. The mission is to provide a welcoming space that promotes social justice and movements through books, education, and activism. Not only does Boneshaker offer progressive and radical literature, we also offer a free meeting space and bicycle book delivery for local orders! Boneshaker also houses the Women’s Prison Book Project, a group that provides books to female and transgender inmates across the country through mail requests.
Once a week I go to the bookstore after work and run the register, organize bookshelves, answer questions, prep the space for meetings or events, and whatever else pops up!
The Boneshaker Crew
How did you discover this opportunity?
I initially heard of Boneshaker in a newspaper article about the opening six years ago. A few weeks later I popped in and struck up a conversation with one of the volunteers. We chatted for nearly an hour like old friends. I filled out a volunteer form and have been volunteering with that same friend ever since.
Boneshaker and the phenomenal people involved keep my mind open, challenging me to think critically in a wold that often praises the easy road. Boneshaker has become an oasis for me when life gets busy. The smell of books and the soft lighting from the paper lanterns soothe me. Plus we have a KILLER kids section!
Because of its open door policy, Boneshaker has become a haven for many people in the community. Our free meeting space makes it possible for groups to have a space to gather. Our anarchist-leaning literature sparks conversations, asks questions, and inspires. Our zine collection supports and spotlights local artists. In the six years it’s been open, Boneshaker has become a crucial part of the community.
THE MULTI-APPROACH MOM
“If you’re paying attention to the world around you, you’ll see someone that could use a little pick me up. I think most of us see it every day, but what if each of us would actually act on that every day?”
Wrapping gifts for an adopted family with coworkers
Warmth for the Young:
I know someone that works in the school system. They had kids walking to school in tee shirts in December. I had plenty of friends that had coats hanging in closets that could be put to good use. The first year, we maybe got 20 coats. Last year, I repeated it and was able to give 50+ coats AND gloves, hats, and winter boots- into the school system for kids who could really use them. We’re in the process of collecting again for year three.
(A different kind of) Warmth for the Old:
My sister Molly and I were talking about teaching our kids to give back. We took Valentines into a local nursing home. Our kids LOVED it as much as the residents, so we went back around St. Patrick’s Day with a bag of suckers to hand out. We requested a total number of residents- the kids are going to make some Christmas cards and deliver those with candy canes. So simple. So fast. So rewarding.
Who doesn’t love a surprise sweet treat?
How did you discover this opportunity?
I started looking for something new I could do. I did a brief stint at the animal shelter, but wanted to take every animal home with me so knew that wasn’t a great fit (although I loved Lucky, my “I can’t leave this cat at the shelter” purchase). I had three little sisters through the Big Sisters program. By far one of the hardest and most gratifying things I have been part of – I still keep in touch with all three young ladies!
I took a little time away from volunteering; I got married, built a house, and had a baby. Too much crazy going on – but that’s what’s great about volunteering, it is there when you’re ready. Once my son was born the light switch turned back on – I knew that we were in a position to help people and I wanted to do just that. So I started looking for ideas that would fit with my life.
How does this feed your soul?
There is nothing better than walking out to see someone smiling and knowing you’re the reason or at the very least played a part. What I would really like to do is have a plan for something every month- doesn’t have to be huge, but SOMETHING.
How can others get involved?
It doesn’t have to be a ton of work. Here are a few other ideas I’ve tried:
Do a coat drive – schools, shelters, etc always can use them
Adopt a Family – your churches, schools, cities, and shelters can put you in touch with someone
Stop by a nursing home, fire station, or police station with or without treats
Pay for someone behind you in line
Stop by and say hi to a neighbor you haven’t met
There’s a lot of conversation in the ad world about the role kickass women play. Our contributions are getting more (rightfully deserved) glory than in the past. This makes me proud of my industry, proud for my gender, and hopeful for the world where my daughters will grow up. They will see that Mom has a strong career, and that women are leaders. I’m on the leadership team at my agency. I’m a Vice President. I’m also part time.
With the arrival of my first child, I wanted an alternative schedule. I started doing 40 hours in four days a week. The eight hours that didn’t happen in the office were done during naps or in the evening.
When we discovered my daughter had a disability, this became even more important, with appointments to make and therapies to attend. When kiddo two was on the way, I decided the hour shuffle wasn’t easy enough – it was time to be part time.
Going part time worried me. I thought my career would plateau. Thankfully, that didn’t happen.
This past winter, I was promoted to VP of Media. I believe there are three factors that largely play into my opportunity to be part time while still growing professionally: ownership, reputation, and communication.
It doesn’t matter what “your job” is, we are all responsible for team success. I’m not saying a search expert should start designing banner ads – but everyone can look at work from a lens larger than what their title implies.
Team up to make each other better. Complete deliverables and share feedback when there is still time for review or revision. Make others’ jobs easier. Speak up when you notice a gap.
Basically, own your work and be a good team member. And if you do these things, people will like working with you. When supervisors or recruiters ask, they’ll say nice things about you. You’ll have built up a goooooooooood…
During my second maternity leave, I had a lot of time during baby feeding or snuggly baby naps, in which to contemplate my next step professionally. By the end of leave, I had three options: the awesome agency I had been at for the last four years, a client-side gig, and Nina Hale (where I currently work). All three were willing to let me hold a director-level position at three days a week. They allowed this flexibility because they knew I was reliable, due to past relationships and the reputation I’d built.
If you’re reading this and thinking, “well my reputation with my boss isn’t great because he doesn’t know how smart I am…she doesn’t realize that campaign was my idea…” I have two things to say to you:
1) I’ve been there.
2) It’s up to YOU to fix it.
It’s tough but true – perception is reality. And you’ve got to work twice as hard in the opposite direction to reverse a bad perception.
It gets frustrating for coworkers if they need me on days I’m not in the office, so I communicate with as much foresight as possible. Both my children still nap (oh what a sad day it will be when this ends), so I hop online when they go to sleep and check in with my client leads and direct reports. Colleagues know that if they need me, text is the way to go. I’m respectful about replying promptly, and they’re respectful about only texting if absolutely necessary.
Thinking and communicating ahead of time is equally important in my personal-life “village” – with my husband, daycare provider, my oldest daughters’ therapists, etc. There will inevitably be the appointment that can’t happen on a day off, or the project that will require a late night. I try my best to never throw anyone a last minute schedule change.
Lastly: find your fit
As proactive as you can be, the three factors I’ve outlined won’t do any good if you aren’t surrounded by people who want to see you succeed and grow. Strategically and thoughtfully immerse yourself in good company, literally. Seek out leadership and companies that you respect, and whose values align with yours. This is easier said than done; you can’t change jobs every six months and still hold that good reputation. But know when it is time to say goodbye to your current company, and ask all the questions, both to yourself and to potential employers, necessary to find the right opportunity. Own your work, be worthy of a good reputation, and communicate clearly in all aspects, and you will find the fit you’re looking for.
(Because work should be fun, too)
I would have spent a lot less time crying that first year. Hearing something is “wrong” with your precious little one…I can’t even explain the lost, isolated feeling.
Who I would have been without you may have been less frustrated, had maybe a little less gray. I’d also be less patient. I might work more, and value time to teach you things less, because the need for that time to who I am is so very clear.
I’d worry less. Or maybe not, but I’d spend my time worrying about what I can only assume are less important things. Not if someone is going to be mean to you, exclude you because you are “different.” Maybe when you don’t want to go to bed at night, I’d think “she doesn’t want to go to bed,’ rather than worrying that something is really wrong, but you can’t figure out how to tell me.
Who I would have been without you wouldn’t have been so defensive. When your teacher says you need to be able to put your coat on by yourself, my reaction would probably be “Yeah okay, we’ll work on it” rather than “are you effing kidding me? Do you REALIZE how much progress we’ve made?”
Speaking of those teachers…I would not appreciate them as whole heartedly as I do, if I would have been without you. We’ve gotten so far because of their guidance. They work with children who at times make little progress, and snarky parents who don’t want to hear what they have to say – these people are heros.
Who I would have been without you would probably be less empathetic. When nothing ever goes wrong, it’s easy to maintain a “sucks to be you, glad it’s not me” attitude. Now when I see struggling, physical or emotional pain, I wonder how it is so easy for the rest of us to ignore it. Whether it is families fleeing for a better life, or an accident survivor now confined to a wheelchair – I’m guessing none of them thought it could ever happen to them, either.
Who I would have been without you would have a smaller view of the world. You’ve taught me so much. I’d walk down the toy aisle and think “ice cream store, dial phone, cup and ball game, trampoline” rather than “social & behavioral, fine motor, object permanence, gross motor.”
I would have been less bold. The courage to speak up when I hear someone say something mean – yes, words like “retarded” – but also cruel comments that have nothing to do with me, is because of you.
Who I would have been without you would appreciate her husband less. This isn’t Sliding Doors, so I can’t see that life that might have been, but this one I’m sure of. Seeing your husband care for your child takes “love” to a whole new level. When there are extra challenges…I can’t explain it. I’m just so thankful he is here to walk beside me.
Who I would have been without you would have had less faith in herself. She might have looked at someone like me and thought “I don’t know how you do it.” But I know how. You cry, you scream at God, you throw yourself a pity party for all the unfairness. Then you tell yourself to get the f over it, dry those tears, and get to work, because that wonderful little love NEEDS you.
I don’t know all that might have been. But this much I know is true; who I am, is so much better, than who I would have been without you.
You walk into swim lessons. The air is heavy with the smell of chlorine and a cacophony of sound; children laughing, splashing, a few crying (oops). Yet you don’t worry that the little person whose arms are wrapped around your neck is going to let out a frustrated scream, overwhelmed by her environment. You sit and wait for your turn in the pool, your little bundle of love curiously checking out her surroundings while seated comfortably on your lap. As you enter into the water, you say hello to the instructor without contemplating if you should explain to her right off the bat why something seems a little “off,” because you know she’s going to wonder anyway. As the class gathers and makes introductions, you and your babe join in, and you don’t feel the need to translate her words so the other parents know she’s smart too, just like their little ones. And as you all start to sing the opening, splash along song, you relax, and find yourself thinking “is this what other parents feel like ALL of the time?!”
And you are instantly hit with a wave of guilt, like feeling this way means you are doing wrong by your other bundle of love.
Welcome to special needs parenting: the second, typical child edition.
My first child has a disability. My second does not. I’m incredibly proud of both of them.
Even though our daughter’s diagnosis was not inherited, I was worried when we got pregnant again. I’m guessing many parents worry to some extent, but we had the extra layer of having unimaginable happen once, plus I was older. I remember telling myself “well, if she isn’t normal, at least they can be unique together.” Because a typical child was what we were expecting, but was a bit scary, as well.
How long before little surpasses big? How do I explain when little someday asks why big can’t do what she can do? How do I comfort big when she is envious of athletic ability, academic opportunities, party invites, etc. etc. that she will very likely watch little partake of from the sidelines?
My first question was answered quickly. It took us seven months to teach big to roll over. We worked tirelessly with physical therapists, had the couch cushions rigged up all sorts of ways to support some muscles and leave others to learn to do the work. Little just did it one day. I think she was a month and a half. I remember just staring at her, thinking “is it really going to be that easy this time?”
I struggled the most with this as little started learning to talk. It was SO early. Okay, it actually was a little early – but given my past experience, it feels like she exited my uterus and said “What’s up Mom?!” I actually found myself wishing she would slow down, because the more she talked, the more it emphasized how behind big was. One day at speech therapy, I wondered to big’s therapist if little would surpass her. She responded, “Oh yeah. Probably soon.” Her frank answer forced me to rip the bandage off – no point in pretending it wasn’t going to happen. And it wasn’t fair to little, to be afraid of, instead of celebrating, her accomplishments.
The other two questions are yet to come. It brings tears to my eyes just thinking about having to answer them. But as of yet, these sisters don’t know anything is different. They know one loves Paw Patrol, and the other prefers nursery rhymes. One is all about trail mix and the other can’t get enough macaroni and cheese. They fight over toys, but couldn’t be better friends when bedtime, aka “run around giggling like crazy while mom and dad try and get us in pajamas” time comes.
I’m enforcing the family togetherness aspect. Mandatory family fun time in the evenings, taking turns doing what each other likes – normal family stuff. Little spends a lot of her life taking big to appointments, so we make sure they both get one on one time with each parent, and get to try new things. This fall, little will take swimming lessons with Daddy, and big will try out dance lessons (OMG the cuteness is going to be unbearable).
Scary questions will come and go. I’m sure I’ll have some in five years that I couldn’t even fathom now. Love and learn, love and learn, is how we will continue.
I don’t do these posts too much anymore, partly for Teagie’s privacy, and partly because I feel that a better use of this blog is to give insight into what it is like to be a part of a special needs family. I want to introduce this world to family, friends, everyone, so that this part of life isn’t something that should make anyone uncomfortable. But as it’s the end of the school year, it seemed like a good time for an update.
Teagan had a very happy year at Arbor Lakes. She was in a class of six children with a variety of special needs. Along with her teacher, Ms. Katie, there were two classroom assistants, and then a physical, occupational, and speech therapist that she worked – all of whom were wonderful.
Teagan and Ms. Katie
Her last progress report, which happens every six months, wasn’t that great. And I’m not even mad – yes Teagan has her own strengths and challenges, but I’m glad her teachers give it to me straight, and that they are holding her to high expectations. The most reoccurring problem is that Teagan looks to adults for guidance and approval – at this age, we’d like to see her more interested in engaging with her peers, as well as participating in activities on her own, without seeking adult approval. One of her goals was to play or participate in one activity on her own for five minutes…we’re still working on this one. She is easily distracted by other students or the classroom around her.
She also still requires a lot of prompts and enthusiasm from adults to complete tasks. If she doesn’t want to do something, she give an enthusiastic “NO,” or knocks the materials on the ground, or acts silly and tries to avoid whomever is trying to get her to complete the activity. Sigh. This is something we will continue to work on.
One area we are very pleased with is her speech. Between school, private therapy with our speech pathologist LeeAnn, and her little sister becoming a talker (and WOW is Alice a talker), Teagan is being pushed and making great progress. She LOVES going to see LeeAnn, and asks almost every day if we’re going to “Lee-Ahnns, af-ta nap.”
We work on a whole host of different things with LeeAnn, from new words to specific sounds to how to drink out of a cup (this is difficult because of Teagan’s low tone – she compensates by wrapping her tongue around a straw or cup). LeeAnn comments regularly on how pleased she is to see Teagan doing something new every week, and is very happy about the increase in her Mean Length of Utterance. What is that? Oh, let me show you what I’ve learned! 😉 It’s basically the number of words, with extra points for things like making a world plural or changing tenses. “I like dog” would have a MLU of 3. “I like dogs” would have an MLU of 4. Last week, Teagan said to me “Alice all done in the bath,” which is a really long sentence for her! Her words come out slowly, and not pronounced perfectly, but I’m so glad she is gradually becoming more able to share the thoughts going on in her head.
Working hard with LeeAnn
We will miss the teachers and therapists from this past year very much, as well as a wonderful little friend Teagan made at school. Her name is Molly, she has down syndrome, and Teagan talked about her EVERY day. Molly was sick the last day of school and I’m so bummed I didn’t get a picture of the two of them together, they were the cutest little pair. Luckily, Molly lives pretty close to us, so her mom and I will make sure to get the two buddies together.
Next year Teagan will start her third year of preschool, and…drum roll please…BE IN A REGULAR CLASSROOM!! Three days a week, she will be in a class with typically developing children, and one day a week she will be in a small special needs class. The teachers from this year and Joel and I went back on forth on this a few times. Because Teagan is timid, we didn’t want her to be left by the wayside in a regular class…but we are eager for her to learn from other children, plus this will make kindergarten less of a shock. So it is something we are going to monitor closely once the school year starts to make sure it is the best situation for her and she is getting the most out of school that she can – but I’m excited to give it a try!
Fun in the neighborhood
As for now, Team Petersen plans to enjoy the summer. We have a few of our regular summer trips planned – up north to Breezy point, down south to Iowa for family and friends – as well as lots of neighborhood fun. We are lucky to have families with two year old twins, a three and a five year old, and a one and a half year old, all in our backyard – never a dull moment around here!
I’d like to share words of wisdom I’ve received from varying sources over the last five years – my own version of Letters to the Editor. This first one comes from a college friend (and now family through marriage), who has worked in the education system for 12 years.
When I asked friends and family to share thoughts and experiences for The Things Teagan Taught Us, Amy sent me the email below. It made me think so much and experience so much emotion, that I felt it deserved a post of it’s own. My favorite parts in bold :-).
Amy with her baby girl
“Hi Kath – here you go! It’s more than you asked for – I thought over as many memories as I could and about everything that special needs children have taught me over the years. I concluded two major points:
1. Kids with special needs (in fact, all people with special needs) are just as unique, diverse, special and different as any other population of humans.
It seems like our society comes up with legislation to support and educate kids with special needs, as well as expectations for what they are like and should be able to do, neglecting the fact that kids with special needs each individually bring their own set of talents, interests, strengths, family backgrounds and personalities to the table. We do a disservice to them by thinking of them as all part of one group of kids.
I had a student a few years back who was in my 1st grade class with no IEP (Individualized Education Program), but certainly struggled with the academic content. I jumped through all the hoops and by the end of the year, she was tested and found to be Educable Mentally Handicapped (which is relatively severe given that she didn’t receive any state or school services until 2nd grade). However, she absolutely loved animals and had the sweetest personality toward animals and other kids. She was also the only kid in the class who could play the piano.
Play time with my kiddos, using her husband as a prop.
I had a good friend growing up whose little sister had down’s syndrome. She was a very funny girl. I just heard this story about her recently – She’s now in her mid-20s and her family is remodeling the house they grew up in. The contractor called the family and said he thought their daughter had gotten into the mom’s email because he received an email that requested a remodel specifically to the girl’s room with an additional toy room built off of that room (which was NOT in the family’s plans!) Sure enough, she had logged into her mom’s email and written the email herself!
2. So many kids with special needs are incredibly happy and at the end of the day, they want to love and be loved, the same way all people do.
In high school, I used to volunteer in the special education room occasionally during my lunch and study halls. Once on Halloween, the teacher let the kids play BINGO. After they had played once, she let them pick their own words to replace BINGO (so when they would win, they’d yell out “CANDY” or “GHOST” or something to indicate they won).One of the boys choose the winning phrase to be “Laurie is popular!” I don’t know why, but that really struck me at the time. Laurie smiled and was really happy about it. That moment made me realize that even though we systematically exclude people with special needs from a lot (like general education classrooms), they still observe and learn the same social structures; they yearn to have friends and be accepted. And they know how to make others smile!
Amy and I with some of our besties, doing our version of Teagan’s gigantic smile
I had a first grade student this year before I started maternity leave, who has special needs and he has a hard time socializing acceptably with the other kids. He wants attention (like every child) but he typically sought it out by hitting others or taking their crayons. I worked really hard to build a relationship with him by checking in with him every morning, giving him an extra boost even when he didn’t really need it. He would grab and hug my belly and say “I love Ms. Butler’s baby!” I really think he was returning the love to me by loving something that I cared so much about.
Teagan with her wonderful teacher Ms. Katie
Now that I am a mom and I have a new baby, I spend a lot of time thinking about what I want my child to be and become. I would guess that if you had every parent in the world come up with a list, there would be thousands of items, but that most parents would put “happy” near the top.
Above all things I want for my daughter, I really want her to know she is loved and to be happy. We get lost in material items or even accomplishments sometimes, thinking “If I just had that one thing…” or “If I could just do this…I’d be happy…” But I think my time with kids with varying learning needs has taught me that they love and want to be loved just like anyone else and can be extremely happy.”
This past weekend my family went to a birthday party for the daughter of our good friends. It was all the wonderful things you’d expect when a little gal turns two; balloons, crafts, laughter, Minnie Mouse decor.
Like many parents I know, I’m constantly trying to figure out a way to get more veggies into my kiddos – I like to call my mission “The Great Veggie Sneak.” This meal was a hit.
It had all these veggies in it! That’s celery, green pepper, onion, cauliflower, and sweet potatoes!
For the meatloaf (includes celery, green pepper, onion) I used a recipe off of BeachBody.com (although I didn’t use low fat turkey because my kids need some cals). I love it not only because it is protein and veggies, it’s also one of those “throw them all together in a pan” recipes. AND MY KIDS GOBBLED IT UP!!!
For the cauliflower, I used this recipe – it’s super simple, with only 2 ingredients that aren’t in most kitchens anyway.
And lastly, the sweet potato fries, which the whole crew loves…and it’s a treat I can feel good about feeding to my family. Not counting the sweet potatoes, again, all ingredients are probably in your kitchen right now.
You’ll notice that all three of these recipes require different temperatures – I did all of them at 375 degrees, just cooked the fries and meatloaf for 40 mins and the cauliflower for 50 (so the fries a bit longer than the recipe lists, the meatloaf and cauliflower a bit shorter).
Viola! Veggies they enjoy. Mom gets a pat on the back 🙂