The Mommies' Diaries…Parenting, One Blog at a Time.

When you first find out that you are going to be the parent of a child with Down Syndrome, you will get a variety of responses. The most common one will be to tell you how loving and sweet they are and how their disposition is easy and mellow. The second thing you will hear is about any job that any one with Down Syndrome ever has had. Mainly grocery store baggers and office cleaning staff. (That used to really bug me, but since I now have the pleasure of being friends with BOTH grocery baggers and office cleaning staff who have Down Syndrome, I can calm down about it. They like their jobs. They are good at it. Amen). The last thing you will ever be told is about the inherent, mile wide stubborn streak that many kids with Trisomy 21 can possess. In my case, it was pointed out to me yesterday during a school field trip for one of the older kids. Let me paint a picture; we have just left the elephants at the Oakland Zoo and I am trying to convince 8 kindergarteners that they don’t REALLY want an Slurpee right now, they want to go look at the zebras! In the 90 degree weather. Where we can still smell the elephants.

Me — “Ace, please get your finger out of your nose”

Her — She fixates on me with a stare that is a perfect combination of disdain and boredom that only a three year old can perfect. The finger is still in the nose. And by the way she isn’t even DOING anything with the nose. There is no search and rescue operation happening. It is an idle finger, shoved up her nose. For effect.

Me — “Seriously Acie, get that finger out of your nose. That is ka-ka”.

Her — The look continues, but she might have actually rolled her eyes at me.

Me — I pull her finger out of her nose and say “No, Acie”

Her — The finger goes RIGHT back to the nose. Lips are pursed

Me — “ACE, no thank you. Stop it with the nose”

Her — Finger. Back. In. Nose. Then the other one too.

Continue off and on for the next 25 minutes (the stamina on that child is impressive).

Beyond the obvious question of why I was having an argument with a three year old, I was mentally marking how she is turning into a real toddler who has an opinion and personality. The special ed teacher walked up to me after observing our nose issues. “So, you are starting to see the stubbornness, huh?”. I just thought this was an off comment, lots of kids are stubborn. Most of mine, actually. She continued “that is the biggest challenge with them during the next few years, trying to manage that stubborn streak and not turn things into issues while still showing them that they have to use the correct behavior”. Wait a minute. Them? They? It suddenly occurred to me that she was referring to something that is a DOWN SYNDROME thing, and not a MY KID thing.
I am not sure if someone TRIED to tell me about stubbornness being something that is a big hallmark of T21, but in between all the talk of angelic sweetness and grocery bagging I missed that one. As I walked around the zoo with a toddler who had two fingers shoved up her nose, I was not impressed. If the nose thing is any indication, the tween years are going to be a treat. And since I am already doing the tween thing with a fairly stubborn girl, I don’t even have ignorance to get me through it.

So here is to you mom!! Remember all those times you wished (either secretly or out loud) that I would have the pleasure of raising a child just like myself? Bwua-ha-ha-ha. I hope that 37 years wasn’t too long to wait. How is that revenge? Is it really better served cold? In all fairness, I have long since accepted that I will ever be as kind and loving and PATIENT as my mom was. And she had twice as many kids. I had a great example in my mother on how to be an invested and present mother. I need to do better on that one. At least I can send my tweens to her and let her work her magic on them.

Happy Mother’s Day to all you mamma’s. Even to the ones who have stubborn, nose picking daughters. Especially to those moms.

Ace and Lulu...then...

A few years ago I was asked to write a few posts for the literary magazine Segullah.  At the time I was dealing with the diagnosis of our little Ace.  My son had also been recently diagnosed and we were already dealing with the issues our preemie daughter Nori had (she was then 18 months old).  I was a little bit overwhelmed.   There is a part of me that is a bit embarrassed about the things that I said and felt.  I could almost shake the old me and tell her to lighten up.  But, then I remember that this is a process and a journey.

I find myself NOW thinking all the things that other experienced mamma’s told me THEN (and I couldn’t quite believe them).  Confronting your new life can be scary and frankly, it does focus on the things that you will not have, rather than the wonderful things you do.  I think that is OK.  Mourning the old idea is a very important part of embracing the new one. So, in retrospect I guess I am not embarrassed about how I felt.  It was real and it was true at the time.   So, wherever you are on your journey– journaling is a good thing so you can see how far you have come.   Part 2 next week……

When I found out that Grace had DS, no one told me what to do. Everyone told me what to feel (“you must be so shocked” or “this must be so awful for you”). Everyone told me that she would be happy or sweet. Everyone told me to read the short story called “A Trip to Holland.” No one told me that I would read it and want to throw it across the room. No one told me how to get from being devastated and sobbing on my bed to being a happy-go-lucky mom of a special needs child. Nobody told me that negotiating the distance between the two places was going to be much trickier than I anticipated.

No one told me how to tell my other daughter that her sister had Down Syndrome or how to explain what that meant. They didn’t tell me that my explanation would lead her to believe that all people with flattened facial features, like her Korean friend Nicole, or people with upturned eyes, had Down Syndrome.

No one told me I would come to hate the word “retarded.” Not because I was ashamed that I have a daughter who is retarded, but because my blood would actually boil whenever I hear it used in a flip or casual way. I want to shake the person using the word and ask them if they really know what they are saying. No one told me that I would hate these people because while they get to talk about being “retarded” and I have to figure out how to raise my retarded child as WELL as how to teach my typical children not to be ashamed of that word.

No one told me my relationship with Grace would be complicated. I love her but I am also afraid of her. I want her to be who she is at the very same time I wish I could wave a magic wand and make her typical. No one told me that by the time she reached the ripe old age of three months I would already be mourning the fact that she won’t get married or have children of her own.

No one told me I would have to learn a new language. There would be new medical terms, abbreviations, and lingo used in therapies, with the doctors, and the social workers. There was new protocol on how to set goals for her and how to mark their achievement. No one told me I would have to gear up for a potential battle about school and I would have to decide if I wanted her to be mainstreamed, included or separated, or what the difference is between them. No one told me I would have to learn how to plan for her future without us while making sure she never had enough assets to make her ineligible for Medicaid. No one told me that I would have a daily internal debate about which I was more worried about, me outliving her or vice versa.

No one told me that when I went to a day center for the first time to check out services offered for my daughter. I would feel the same feelings wash over me as I had when I visited as a teenager. No one told me that even when it was MY child in question, I would still feel uncomfortable at the day center. I would still wish I could run out of there. Nothing changed. The fact that I was raising a special needs child hadn’t changed anything.

Wasn’t I supposed to be her greatest advocate? Wasn’t my role, for the rest of my life, to be the one that fought for her? To challenge others to see her for all the things she COULD do? No one told me I wouldn’t want to do those things.

No one told me I would dread the day she was finally born because it would mean that we would become “that family.” No one told me I wouldn’t want to bond with her because it was too scary for me to think about it. No one told me I wouldn’t want to look at her when she was born because then it would become real.

Everyone told me that everything would be OK. Everyone told me about their neighbor/friend/ward member that had Down Syndrome and was really nice/really happy/bagging groceries. No one told me I would come to hate those words. No one told me I would want to snap and shout to the universe that I wanted just a bit more for this child—all my children—than to hope that she could be a grocery bagger someday. I had even said the same thing to another set of parents once. No one told me how all the things that I said to other people would come back to haunt me.

No one told me I would ever have a discussion with a doctor in which terminating my child was the assumption. No one told me how it would feel to have a geneticist sit me down and give me a laundry list of things that could go wrong with her and then give me the choice if I wanted to go continue the pregnancy or to terminate. No one told me I would actually have to put my pro choice stand to the test.

No one told me how to handle this experience. How sometimes I would feel so defeated and cognizant of how unfair this was, and then so guilty because the reality is that I have a healthy child who has the expectation of a long and full life.

How many mothers across the world would give anything for the privilege of raising their child to adulthood, to have access to medical care and education? I have lived and worked in countries with mothers who have not had the same expectations.

No one told me how thankful I would be for my husband who has never been anything but an enthusiastic father to our Gracie girl. From the first minute we knew about the Down Syndrome, he has been perfectly fine with her whole package. And, in a moment of uncharacteristic candidness, he admitted that he knew he was being selfish, but that in some ways he felt relief. He knew he would always be able to provide for the needs of this special daughter of his and he didn’t worry about her making choices that would hurt other people. I hadn’t thought of it that way, but he was kind of right. No one told me that I would resent—just a little bit—his willing acceptance of who she is, while I still struggled with some selfish and petty issues.

When I look back, I realize that maybe someone did tell me these things and I just couldn’t hear them. Maybe part of my journey is to get all this stuff out of my system early so that I can move on to being the best cheerleader special needs mom around. Maybe I will look back on this in about 5 years and shake my head and laugh about what a foolish person I was. Heaven knows I do that about our adoption stuff all the time.

Continued next week……

I think that most people could agree that goal setting is a very important part of measuring progress and being successful. Most of us grow up with the “graduate from high school / learn a trade or get an education / get a job / support yourself” trajectory. Once you bring kids into the mix, the goals tend to be of the “sleep through the night / hold your own bottle / walking / potty training” variety. All worthy goals. Especially the potty training and leaving the house ones.

One thing that has been interesting for us to learn as parents during our many, many hours of therapy with the kids is to see how development goals are broken down into very small bites. Things that my oldest daughter just naturally did while she was growing up are the things that we have had to teach our other little ones. Did you know that stacking three blocks on top of each other is a cognitive development goal? I admit that at this point I can’t remember WHY it is an important step, but we stacked blocks for weeks until Tiny got the hang of that. It paved the way for her brain to make the next cognitive leap. Little things like clapping, sucking from a straw and learning to use your tongue to move food around in the mouth are all tiny goals that we have had to teach our little kids. Each victory is hard won, celebrated, and new goals are immediately given. This has been a hard transition for this mama who tends to be more of a go with the flow kind of gal. My previous goals were just to keep all the kids alive by the end of the day and feed them somewhere along the way.

Currently the goals in our family are the following:

Lulu. She is my typical kid. My 9 year old worry wart. She attends an art therapy class with other siblings of special needs kids. Her therapy goal is to not worry about the little ones and to write down her feelings instead of keeping them inside. My goal for her: to try and reduce the number of times I hear the words Justin Bieber and iCarly in a single conversation.

Cubby. My 5 year old sensory seeker. Nothing is to too fast, too spicy, or too loud for this kid. He craves stimulation. His therapy goal is to spin until he is dizzy and to learn to be able identify his feelings with words instead of acting out (i.e. I feel angry, I feel happy). My goal for him: make it through the week without anything getting broken (last week alone it was two window panes, a dishwasher, three walls and the plastic slide). Note to self, get rid of Sharpies; buy paint.

Nori. My preemie. She is almost 4 and holding steady at 29 pounds. Her goal is to gain weight. We have been working on this one forever. Forcing her to eat Greek yogurt, Trader Joe’s Belgian milk chocolate pudding and butter on everything has made my dieting efforts even more successful. My goals for her: get her to stop backseat driving and to stop pretending like she is a cat, at least while she is (not) eating.

Tiny. She just turned two and it is time that this child started walking. Kids with Down syndrome have very low muscle tone, so they hit their physical goals a little bit later. The problem we have with Tiny is that she is the youngest of 4 and has no need to move. Ever. Her siblings carry her where she needs to go and provide endless entertainment for her. Her therapist keeps telling us we need to push her harder, and we reluctantly respond that we just want her to stay little forever. So the goal: no more carrying her around. My goal for her: to get her to stop eating dog food out of the bowl. Or at least use a spoon (that is good oral motor practice). Last note to self, buy better dog food.

One of my goals it to be more proactive about goals, so now I am accountable. I will let you know how it goes. I will be a success if I just fulfill my original goal (the one about keeping them alive) and anything else is extra.  Hope you hit your goals this week!

I am very excited to join the Parenting on the Peninsula team as the parent blogger focusing on families that have children with special needs. My family has been living on the peninsula for almost a decade, and sometimes I forget we ever lived anywhere else. My husband and I have four children. Our oldest daughter Lulu is 9, our only son Cubby is 5, Nori is 3, and Tiny is 2 (these are nicknames–so I can blog about them mercilessly). The last four years have been quite a ride. Our two middle kids (affectionately known as the “middle kids” or the “mids”) are adopted. Our oldest and youngest (the “bookends”) are both homegrown. The last three showed up one right after another (we have had both a surprise pregnancy and a surprise adoption, stories you will hear in time). And though it is tempting to forget that there is anything else in my life besides these four little people filling up my schedule, I do have other hobbies… I just can’t remember what they are right now.

So, what qualifies me to blog about all of this? Three of my children have special needs. The term “special needs” covers a lot of things. The good news is that it means I will never run out of things to talk about. Our family has a child with Down Syndrome, a child with Sensory Integration Disorder and a preemie that is globally delayed. Not to forget our “typical” kid who loves to remind us that SHE is the only one in the family that is different. The details might be different than other families who fall under the special needs umbrella, but lots of things are the same. I know what it feels like to exist on a hamster wheel of doctor appointments, to spend more time with therapists than I do with my own family, the search for a diagnosis, and the warrior-mamma powers that it takes to keep looking until you find something that fits. I know the tricky parts of learning to shift my focus as I come to realize that my child and my family are going to be a bit different than the way I imagined it, and even the humor that can be found in these situations. I look forward to sharing my stories and hearing yours. This is a great community. I am glad to be part of this neighborhood.