The time of year has been deemed “Crabuary” in our house. January and February blur together in one gray, cold and damp haze.
I get busy at work during Crabuary. Annual summatives are due, last minute evals, kids trying to sneak in a drop in the new semester, course selection and we’re talking about next year already.
Still, we’ve managed to keep our weekends light and fun. Nights are quiet. The kids are growing. Tessa is exploding with words, new ones sprouting every day. I have been told her “receptive” language is weaker… but that seems to run in the family.
I can think of quite a few family members, actually, with weak receptive language skills. Myself included. 😜
Ellie is reading. (Lots!) She has announced that she will not be going to kindergarten in the fall, opting instead to carry on in preschool for as long as she feels like it.
Clearly, we’ll have to work on this.
Until I get time for more detail, here, enjoy some cuteness…
I will admit that I work too hard to keep it all together when I’m in public with the family. Some days are just hard. Whether it’s uncooperative children who don’t have it in them to listen to their mother or a tired and stressed out husband who just wants to be done shopping, I have a ridiculous, visceral reaction to contrary behavior.
I can’t help it, so y’all are going to have to forgive me.
Now, enter Down syndrome.
Let me be very clear – my little sweetheart does not act out because she has Ds. She acts out because she is two. And it’s normal. Some days are pretty rough.
Aren’t they for all of us?
But this is the perception that I find myself fighting, which has now intensified my need to keep it all together. I know it’s not really about Down syndrome. I just really want everyone else to believe me.
Church Sunday started off well enough. Tessa gave her usual hug to Miss Sheila (who is essentially a stranger, but one of her favorite people) and had a nice snuggle with Uncle Don (who she also adores). Then, it got a little hairy.
We sit in the pew directly in front of our Praise Team. John was playing, so it was just me in the pew with the girls. Ellie was, for once, an angel. But Tessa decided that it was time to be free.
During the sermon, it started with crawling back and forth. I tried giving her the Z-vibe, which usually does the trick to calm her. The Z-vibe looks kind of like a purple marker and has a rubber end that Tessa likes to chew on. When it is “on”, it vibrates. She loves it. It’s very soothing.
She threw it.
She threw the vibrating Z-vibe and it landed two pews ahead of us, where the most lovely little family was sitting with their children.
I about died.
The children picked it up, having no clue where it came from, and started fiddling with it, clearly amused that God had sent this little vibrating toy to entertain them. Meanwhile, I’m starting to sweat, wondering how I’m going to survive the rest of service without the dang thing and then ask for it back in a not-awkward way. Meanwhile, Tessa is now rifling through the diaper bag, throwing hundreds of crayons on the floor (ok, like 15) and then I’m frantically trying pick up all the crayons (in my stupid Mom Kryptonite skinny jeans) while keeping her from falling off the pew that she is now racing up and down and Ellie’s getting involved and John is just strumming his stupid guitar and watching helplessly from three feet away and I’m seriously sweating now and about to lose my mind.
And all I can think is, “please, Lord, if the people see this, let them see poor parenting and not a poor mom with her disabled child.”
Because it’s not about the Down syndrome. It’s just my kid, being naughty, as kids do. I just want people to see that.
In case you wondered, we got the Z Vibe back after church ended. The mother is a special Ed teacher and knew immediately what it was (and therefore, thankfully, what it was not) and who it belonged to. Thank God for that.
In case you were wondering, no, Tessa is still not walking. I don’t expect her to in the near future. In fact, I’m not sure that a human being exists on this planet that is less motivated to walk than she is.
No, really.
She can stand. I’ve seen her do it. And she can travel across the room on her feet with very minimal support from an adult. When she wants.
If she wants.
I’m not fretting about this at all, actually. Quite the contrary. Cool as a cucumber over here. No, this is not sarcasm. I know, I know, this is not what one might typically expect, given my attitude in previous posts. One year ago, I was impatient. I will still working on being “ok” with our own pace.
(In this moment, the fact that I was working on it is almost laughable. I can’t figure out why, but right now, not being “ok” with a slower pace seems silly.)
In any case, we have put all the supports in place that she might benefit from. Weekly therapy (which again, is not to speed progress, but to ensure that skills are developed correctly), Spio compression suit and pants, orthotic braces for her legs/feet, the most expensive pair of shoes I have ever purchased (they were 50 bucks… I’m cheap)…. Getting Tessa dressed in the morning burns as many calories as a session with Jillian Michaels.
But I digress.
She will walk, I am sure. She just needs to find the right motivation.
As a side note, we met with our new pediatrician for the first time yesterday. The appointment was great… Except when she asked about Tessa walking. I literally had to bite my lip to keep from laughing when she suggested we try “putting some things in higher places so she has to work to get them.” No shit.
The good thing is that Little Miss is indeed quite little, still under 22 pounds. And, she is also quite cute. Just look at how she charms her way out of walking with her Mimi today:
Girlfriend will get there when she gets there. For now, I’ll just be thankful for the extra arm workout I get from hauling her around. After all, if she walks even half as fast as she crawls, we are in trouble.
I want both of my girls to reach their full potential.
I want them to have choices.
I see my job as a parent to raise them to be kind, to be compassionate and loving and hopeful. To push limits, yes. To take risks, yes. (Appropriate risks. Let’s not get carried away here.) They should contribute. They should leave their mark.
I want them to soar.
We do not know what either child’s potential may be. We don’t yet know their hopes and dreams. We only know that our work right now is to raise them with the tools that they will need to be all of their wonderful dreams.
There is no harm in feeling that there are no limits on Tessa’s potential. There is no reason not to think that with the right supports, she can do whatever she sets her mind to.
However, there is harm in feeling like anything less than “typical” is not successful and not worthy of praise. There is harm in the notion that if my child does not live a life that is mainstream or typical, that she, and I, have failed.
Right now, I’m seeking perspective and balance. I’m looking for someone to tell me that when she is 27, no matter if she works in a grocery store and lives with me or if she is a high-powered, politically connected self-advocate out changing the laws of the land, she is of value.
I know that both of these paths are worthy.
I’m wholly wrapped up in the mindset that success for her should not be measured by how typical her life is. I know that the only ends that matter are a life filled with love and kindness and humbleness and service. I want her to have all the tools that she needs for whichever path unfolds. I’m content just to love my daughter, however she grows.
I don’t feel the need to justify her existence or prove that she is worthy of life because of how normal she is.
I will push her, yes, and expect that she push herself. We pursue inclusion for Tessa because she has a right to equal access. She has the right to forge her own path and to have choices. She should, just like her sister, be exposed to people with all kinds of abilities and viewpoints and backgrounds. Inclusion is best for all, not just for people with disabilities. I will not hold her back, nor will I let society. I will not tell her she can’t do it, whatever it may be.
I love her, no matter what.
In reality, either child may soar. Either child may flounder. Either child may achieve her highest potential. Either child may not. We can only do our best. I just want to feel that whatever our best may be will be valued and revered by those around us.
Two is such a sweet little word. Two. Just say it out loud. Come on, do it. Seriously.
It makes me smile, and so does this beautiful face:
And so, now she is two and we are smiling.
This isn’t an entry about a path to acceptance or how far we have come. It’s not meant to tell you all the wonderful things that she has accomplished this year. I don’t feel like celebrating all the hard work and the progress, I just want to celebrate her and who she is and what she means to our family.
At two, she’s fun and feisty. She loves to say hello to strangers in the store. She throws her arms out when she wants to be held and is crazy persistent with her demands.
Her favorite food is vanilla Oreos, which she daintily holds between thumb and index finger and slowly nibbles away at each night after dinner. One cookie is never enough.
She doesn’t much feel like walking. Crawling suits her well enough for now. She has a great stink-eye when she’s not into whatever you are requesting that she do. The therapists get it often. So do I.
Her enthusiastic “Hiiieeeeeeeee” when I walk in the door makes me grin every time.
She’s upset by laughter still, but calmed by big hugs. She loves to read books and make animal sounds. She gets angry at bedtime. Bright and early in the morning, she pops up and chatters Ellie’s ear off until she gets a response.
She cracks herself up.
She sings. It is the sweetest little sound.
She’s been worth every stretch mark and extra pound that I haven’t lost. Every chaotic mealtime with two small children instead of just one. Every frantic dash to clean up before therapy. She’s worth all of the everything.
And really, all of the everything is nothing compared to our love for her and our gratefulness to be raising her.
Two has come quickly. The other years, I am sure, will be no different. I am just so thankful to have her to say hi! when I walk in the door, to give hugs in the morning, to steal hearts and change minds and to teach her sister (and maybe some others) a little something about kindness and sharing and love.
So, confession: I 100% broke my annual tradition of waiting for Christmas music until after Thanksgiving.
Sorry, Mom!
It’s tradition in our family (like in many families) to wait until after the turkey. Blame it on the two-sick-kids-mom-with-pink-eye-chaos-at-work-foot-of-snow-storm, but the little voice in my head said, “Girl, you need Mariah Carey, stat.”
And so it began.
For the record, there are some Thanksgivingish songs on my rockin’ playlist. So, I think that excuses my bad behavior. 😉 This morning, this Thanksgiving morning, I’m here… it’s loosely Thanksgiving. Loosely.
I don’t care if the house is packed Or the strings of light are broken I don’t care if the gifts are wrapped Or there’s nothing here to open
Love is not a toy, and no paper will conceal it Love is simply joy that I’m home
I don’t care if the carpet’s stained we’ve got food upon our table I don’t care if it’s gonna rain, our little room is warm and stable
Love is who we are, and no season can contain it Love would never fall for that
We sing Oooo oo oo oo oo oo oooo
Let love lead us, love is Christmas
Why so scared that you’ll mess it up? When perfection keeps you haunted All we need is your best my love, that’s all anyone ever wanted
Love is how we do, let no judgment overrule it Love I look to you, and I sing
Let love lead us, love is Christmas Let love lead us, love is Christmas
We really put Girlfriend through the wringer today. We have had a few days like that lately. She’s a trooper, Miss Tessa. She really is.
Two working educator parents means days like this – when we have a scheduled day off during the week, it means we have to jam pack it with all the appointments and phone calls and chores that cannot be done otherwise. I’m sure that others outside of education must work this way too, maybe.
Actually, I’m not sure. I just know that sub plans are a pain in the rear, so for us, everything that can wait, does until we get a weekday off for some random holiday or break.
In any case, with Thanksgiving tomorrow, we double-booked therapies for today (yes, we know that’s not very nice) and then threw in a follow-up visit with her ENT (now that’s just mean). I don’t know if we mentioned that we had a second set of tubes places in Tessa’s ears about a month ago… It was in the middle of our month-long advocacy-themed Down syndrome Awareness Month, so that little tidbit probably got lost in the shuffle.
(If you want my unsolicited, non-medical advice, I will tell you this: when an ENT tells you to get ear tubes, get them.)
I don’t know what Tessa’s hearing was like before the tubes, but I will say that almost immediately, we have experienced tremendous growth in her speech and general ability to react/interact. There are some minor trade-offs (the whole crying-when-we-laugh issue is back), but she speaks to us nowand other people outside of the family can understand some of the things that she says!
(For example, no. We can all clearly hear no.)
There are other words… a whole bunch of animal sounds, the number 2, hi and bye, please and thank you, papa, shh, up, and down.
For this, we are thankful.
But golly, it was a long day. And even with the tubes, the hearing test was not completely clear. A follow-up in a few months will hopefully give a better result. Today, she passed “behaviorally”, which means that when they put her in the soundproof box, she showed behaviors that suggested she was hearing. However, with the other test that somehow measures the function of her ear (note to self: look this up), she did not pass. And so we wait three months and try again.
There are so many other tidbits to share about life lately. So much is rushing around in our brains and on our calendar these days. Those tidbits are for another time… for a day when I didn’t run through the maze of life responsibility that we did today. For now, gobble gobble. I wish you a restful Thanksgiving… and a day to check things off your list too. May your children cooperate better than mine did. 😉
On an unrelated note, who is this young woman and what did she do with my four-year-old??!
A few weeks ago, I had the rare opportunity to sit in on one of Tessa’s therapy sessions. Since we moved, her new therapists come while I am at work and I rely on my mom and the therapy notes to learn about what she is working on. So, when situations arise where I can be a part of the sessions, it is a treat.
I was sharing with her DT and OT some of the newer behaviors that she has that are making me bonkers. All kids do goofy stuff, but sometimes the approach to existing with those behaviors is different when a child has some kind of cognitive delay. In any case, after my little laundry list of items, her DT laughed and said, “well, she is certainly displaying some typical two-year-old behavior now!”
This was music to my ears! For as content as I am with whatever level of development either of my kiddos reaches, it’s fun to see them enter a new stage. And while typical two-year-old behavior is often “boundary exploring” at best (let’s be honest. “Naughty” is a better word.), it is impossible not to feel equally overjoyed and overwhelmed that she can now stand up at the refrigerator and pull down every single picture, magnet, calendar, and momento that was unreachable, or uninteresting, two days ago.
For 31 days, we have shared a lot about what advocacy means to our family in our little corner of the world. On this last day, I invite you to image what if with us.
What if we stopped equating smart with successful?
What if we believed that those who are not “smart” still have something to contribute?
Imagine a mom getting a diagnosis of Down syndrome in a world where it didn’t matter if her child would be smart. What if she knew that the child would be accepted, taught, cared for, and loved regardless?
What if we presumed competence in all? And when someone doesn’t understand, what if, instead of being frustrated, we reacted with patience and love?
What if we stopped believing that a classroom of learners who struggle is a “dumping ground”?
What if we stopped encouraging families touched by disability to band together in separate places and in separate communities and just embraced everyone?
Imagine parents learning that their child has Down syndrome in a world where they knew that their schools and communities wouldn’t bar them from participating in classrooms and activities. Imagine never questioning whether your child would be allowed to participate in birthday parties, field trips, assemblies, or just in plain old school.
What if we stopped believing that the brightest are the best and instead believed that those who are joyful, humble, caring, and kind are what we need most?
What if we stopped seeing advocacy as a way of “helping the less fortunate” and instead just saw it as being a human being?
What if we stopped seeing the disabled as less-fortunate altogether?
What if we always, always chose kind?
What if we could see beauty in the differences that make each of us unique?
What if we respected people’s feelings and beliefs and didn’t walk through life with the attitude that a different perspective makes someone a bad person or less worthy of kindness and love?
What if we could stop seeing another perspective as an attack on our own thoughts and feelings?
What if we just chose love? Always.
YOU can make the difference. YOU can be the Hands and Feet. YOU can advocate in small ways, big ways, in thoughts, in actions, with money, with words, or with nothing but kindness.
I have a playlist on my iPhone called “Fight Song.” It is made up of a series of songs that I find motivational and I listen to it on my way to work every single day. It’s not that I need motivation to go to work everyday. I actually really love my job. And it’s not that I’m fighting anything or anyone in particular at all. These songs just tend to fill me up with the energy and positive feelings that I think are so important. They remind me to be brave, to be kind, and to do good.
The first song, the song I start each and every day with, is below. As a last thought, before we go back to our regularly scheduled program of family antics and less-relevant rambling, I encourage you to watch the video, listen to the words and imagine if this song could drive what you do every day.
In case you want to advocate on behalf of Tessa or other people that benefit from EI, here is an open letter you can use to contact your representatives who should know how important this is:
Dear ,
I am writing on behalf of my daughter Tessa, a two year old with Down syndrome who receives Early Intervention Services (EI) with the help of the state of Illinois. I only write to implore to think about what a mistake it would be to reduce the services of EI for any child. While I could go on and on about the personal gains it has provided for my daughter and the incredible positive impact it has had on my family, I urge you to look at this from an objective perspective.
E.I. saves our state money in the long run. For every dollar spent to fund EI it would cost seven more dollars of funding to not fund EI For instance, let’s say a child with a disability is provided EI at an early age. Because of this exposure to necessary therapies and the child’s parents learning about how to help their child, they are able to gain vital skills necessary to succeed in life. When they are eligible for the school system, they won’t need nearly as much support, if any, because of the growth they made and the steps they took while enrolled in the EI program. Now, if you take this same child and don’t provide any services and don’t teach parents how to really help their child, you are going to spend an excessive amount trying to make up for lost time. So how does it make sense to spend seven dollars in the future when we could just spend one now?
Now is the time to have foresight for our state and for EI We all know the state is a financial mess and to do nothing is unacceptable. All I am asking of you is not to try to solve financial problem by doing something that makes so little sense. Put aside that this is a human rights issue and focus on the return on your investment. The cost benefit analysis of diminishing EI doesn’t add up. It’s using a bucket to save a sinking ship instead of reinforcing the hull.
Yo soy La Lay 