Wrapping it Up

Participating in the 31 for 21 challenge has been so awesome! I've started reading several new blogs and had a chance to write about some of the things I've been processing for the last five years. I probably won't write every day indefinitely, but I plan to keep up regular posting.

I mentioned at the beginning of this month that one of the things I'd like to accomplish through this blog is to reach out to parents that have learned that their child - born or unborn - has Down syndrome. I felt really alone during that time in my life, and I didn't find many resources that made me laugh or feel reassured...it was a lot of doom and gloom. In the event that someone finds this blog in a quest for information about their child, here's what I'd like them to know.

Grieving for the loss of the child you thought you were having is not a betrayal. It took me a long time to stop feeling guilty about being so sad after I was told Pacey had Down syndrome. I'd love to say that I was sad for HIM, for the struggles that I perceived he would endure, but really I was sad for me. Sad because I wasn't getting the experience I thought I'd have. Once I could separate the feelings of loss about the nameless, faceless "normal" baby I thought I would have from the feelings of love I had for Pacey, the whole process of acceptance became much easier.

People generally mean well and want to say supportive things. You'll probably hear a lot of platitudes that don't help. At all. I didn't want to hear that "special babies are only given to special people" or that God had a plan or that you are never given more than you can handle. In many ways people will take their cues from you as to how to talk about your baby. You should feel free to be honest with people, and try to acknowledge that saying just the right thing doesn't always come naturally.

Remember that your baby is just a baby. Barring any health issues that need to be addressed right away, you will still have a snuggly little baby that needs to be held and loved and...well, not much else that's different from any baby. Your baby may have a hard time with breastfeeding, or he or she may not. Just like any other baby. It helped me connect with my baby to look for and appreciate the things I could see he inherited from his dad and I.

Having a child with special needs doesn't make you superhuman. I really did hate people saying things like "I really admire you, I could never do that." I felt a lot of bitterness in the early days and to hear people say that I was somehow better equipped than anyone else was just irritating. I didn't expect it, but he was my baby. I loved him and cared for him in the ways he needed it, just like any parent would do for their child. I get frustrated with him, I don't have unending patience and I don't automatically know how to talk to/interact with other children or adults with special needs. I have personal insights that help, but I'm still an imperfect human being.

Try not to look too far into the future. One of the things I found scariest in the early days was the thought of caring for An Adult with Special Needs. The thing I failed to realize though (probably more so because it was my first child) is that it wouldn't BE just some adult with special needs, it would be my son, the son I'd known since the day he was born. I still feel overwhelmed sometimes with the responsibility of advocating for the things Pacey needs to be successful, but the more he grows and the more I know him, the more I feel like I actually know what those things are.

You are not alone! When you are ready, there is a huge, wonderful community of people that will feel connected to you and offer you support and friendship. It may take awhile...for at least the first year I just needed to exist in my own little bubble and even now I'm not particularly active in our local chapter of the Down Syndrome Association of Minnesota. But I've made connections with other parents, some of which I've already written about, that I appreciate so, SO much. I started out just connecting with people by email, which I found much easier than approaching people face-to-face.

Therapy is great, but more is not necessarily better. We are so very fortunate to have kids in a time that there are so many great resources available (more in some areas than others of course). However, you have to make things work for your family. Pacey was my first child and I felt compelled to take advantage of every single thing that was ever offered to us. That worked, for the most part, because I had a flexible employer and no other children to care for. I remember feeling anxious because I had talked to someone whose child did hippotherapy (with horses) and due to my husband's serious allergy that just wasn't a possibility for us. Does it matter? No. I personally think therapies are wonderful tools to help our kids maximize their potential and help us learn about how we can assist them too, but it has to work with your life.

When your kid is 5, no one will care how old he/she was when they walked. There is a huge focus in the first couple of years on physical milestones...when did your child roll over, sit up, crawl, cruise, walk, etc. That was hard for me. It was frustrating to see our friends' much younger kids walking around before Pacey did. But now? He runs around in a pack of same-age kids and you'd never know that he didn't walk until he was 21 months old. It doesn't really matter anymore. I don't mean to trivialize these accomplishments...be PROUD of milestones, whenever they happen. Just try to keep perspective on the bigger picture.

You have no idea what's coming. No idea how incredibly proud you will feel about your child's accomplishments. No idea how many "normal" things they will do and how not-so-very-different it is to raise a child with Ds. No idea how much richer your lives will be because of your chromosomally enhanced child and how lucky you will feel that he or she is yours.

No cavities! 

This kid loves football in all forms.

Halloween Eve

Halloween has always been one of my favorite holidays. Besides the fact that it largely centers around receiving and consuming vast quantities of candy (have I mentioned my sweet tooth?) we always had fun traditions when I was a kid.

Since I grew up in Alaska, winter was usually underway by the end of October and therefore costumes had to be planned with freezing temperatures in mind (well, until we were stupid teenagers anyway). My mom made us several costumes utilizing yards and yards of flannel - the costumes doubled as winter pajamas after the holiday had passed. There were always parties at school, back when schools weren't so darn grinchy about organized holidays. Despite not loving Halloween my mom usually made us a 'spooky' dinner before going out trick-or-treating.

And then there was carving the pumpkin. My dad always did that with us. Scooping out the slimy guts, washing and roasting the seeds on the years we could be bothered, planning out the features and watching my dad wield the knife. And then when it was finished, the jack-o-lantern usually sat, candle flickering inside, in the dark hallway outside our bedrooms.

These were just some of the traditions that made the time of year feel special, and left me with very fond memories and a desire to re-create some of that feeling for my own kids. I'll confess though, it's been hard to be patient while they actually get old enough to participate in making our traditions and appreciate them. I think this is the first year they will really appreciate trick-or-treating, helping me prepare Thanksgiving dinner and all the fun holiday-related activities after that.

Anyway, long-winded way of saying I carved our pumpkins with the kids this evening. Chris lost interest when he discovered the power tool he'd purchased last year after our painstaking hours with those stupid little prickers and saws wasn't going to work. So I rolled up my sleeves and dug in. Brighton specifically requested that "one pumpkin be happy, one pumpkin be sad." So that's what we did. One happy pumpkin, one sad pumpkin, two happy kids and one happy mama.

I found Pacey walking around with this: one trick-or-treat
bucket containing a cell phone and an iPod. I think he
might be disappointed tomorrow night. 

Happy pumpkins

Sad pumpkins

We've simplified since last year...

Notes Following the First Day of Potty-Training My Daughter

Updated to add: potty training is on hold after Brighton sat on my pillow and peed. I think we need a new strategy...


1. Cute little girl undies are hard to find. I get that they try to make them comfortable, but the 'lace' around the edges makes me think of polyester and housecoats.

2. Those Babylegs I bought at 75% discount are really coming in handy.

3. I really hope we can get through this before it snows.

4. It's a really awesome idea to set your iPhone timer to go off every 30 minutes to remind you to take a trip to the potty.

5. When that timer goes off, you must INSIST on a potty attempt, not suggest (it took me three accidents to accept this)

6. We're using a sticker chart but I think I need to actually purchase the Potty Prize so she can look at it and be reminded

7. It's a good thing we buy paper towels at Costco.

8. This was a lot easier when we had no carpet in the house

9. Carpet cleaning is rapidly making its way to the top of my To Do list.

10. This was so much easier with Pacey...because his wonderful daycare teachers did it for me.

11. Kid pee smells a lot less strongly than puppy pee.

12. Oh god, I never want to have another puppy.

Kids with Ds (Alternate title: Good Excuse for a Photo Post)

Love their pets:

Have tea parties:

 Take naps in funny positions:

Stomp in puddles:

Play with worms:

Eat ice cream cones:

Scare the sh*t out of you leaping off things:

Go to school:

Watch football games:

Indulge their sisters:

Read books:

Pose like pros:

Embrace technology:

 Play with stomp rockets:

Conquer the playground:

Completely steal your heart:

Inheritance

I don't remember exactly what prompted the conversation, but one of the nurses that cared for Pacey in the NICU reminded me that while Pacey's extra chromosome accounts for some of his characteristics, he still gets his genes from his dad and I. For some reason that felt really profound at the time...like I'd forgotten that although the tiny, wrinkled baby in the incubator seemed like a stranger, he was still half me and half Chris. There is every chance that he will show an aptitude for math, like his dad, or a love of structure and routine like me. He gets his brown eyes from me, his coarse hair from his dad.

One of the first things I noticed about Pacey (and this was before I had an inkling that he had T21) was his feet. He has a larger than normal gap between his first and second toes. Why did I notice that? Because his little feet looked like miniature versions of his dad's. It was so cool to see something familiar that I could directly relate to Chris. Now, as it turns out, this enlarged gap (called a sandal gap) occurs much more frequently in the Down syndrome population. But for me, that's just something he got from his dad.

Similarly, when I was having the anatomy scan with Brighton, the perinatologist mentioned that she had clinodactyly, or inward curvature of the pinky finger, which is a soft marker for Down syndrome. We'd already had a CVS performed and knew that she did not have Ds, but the doctor glanced over at my hands and said "oh, you have it too." And sure enough, my pinky fingers curve inwards just like my kids' do. Something that seemed "different" about Pacey is actually just something he has in common with his mom and his sister.

Another common feature seen in people with Ds is a single palmar crease (those little lines that cross your palm and apparently predict your future). Pacey actually has typical creases in his palms but I have a friend who told me about one of her parents (I can't remember now which one) who had a single palmar crease despite not having Ds. It's really cool to me to see these "hallmarks" of Ds in the general population...it's a good reminder that we really are more alike than different.

Luck of the Draw

This is my friend S's son, A.

Do you not just want to squeeze these cheeks?

She and I had the same personal trainer shortly after I moved here, and each mentioned to the trainer that we had a child with Ds. About a week later I saw S and A at a library story time and inferred that it must be the same woman the trainer had told me about. I risked coming across as a complete stalker and spoke to her, telling her about Pacey (who was at school at the time). We made plans to meet up again and have been friends ever since. 

It's been really neat to see A in action. I think he was about 8 or 9 months when we met and I've seen him go from a cuddly little baby to an energetic toddler. Although I've met plenty of other kids with Ds and have noticed similar features to Pacey's, A is the first baby that I really feel LOOKS like Pacey. His mom agrees...they have similar coloring and the same short haircuts, but there is just something about them. I felt such an instantaneous affection for him and I'm so glad that I've had the opportunity to know him and his family. 

C and A...this makes me do a double-take it reminds me so
much of Pacey

A just started a preschool program at the same school Brighton attends. I peeked in on him the other day in his classroom and he was standing there at a sensory table, surrounded by typically-developing peers with a huge grin on his face, just doing his thing with all the other kids. I mentioned to S that I'd seen him and he looked happy and she shared with me how immensely proud she is of him. It's so neat to see her with A at this stage of parenting...there is something so special about seeing your kid fitting in with his peers, doing the things that kids do, completely blowing you away in the process. 

Yesterday Pacey and I were picking up Brighton from school and a woman stopped me, asking if I was Pacey's mom. Turns out her son, who has Ds, just started preschool there too (he's actually in Brighton's classroom but on opposite days to her). We chatted about our kids and schools and therapists, and then a teacher came up and mentioned to her that another boy had just started the program. Once again I put two and two together and figured out they were talking about A. The teacher talked about how great he is doing and we all agreed that he is completely adorable. The other mom and I talked a little more about the Down Syndrome Association of Minnesota, the MOMS Club I am in and our boys. 

These are all really mundane little anecdotes, but they combine together into a story that makes me feel so lucky to be Pacey's mom, and part of such a fabulous community. 

36 Things

1. He is the most ambitious person I have ever met.

2. He is a closet romantic.

3. In the last ten years, he has gone from being a pretty awful (sorry honey) writer to quite an eloquent one.

4. He is completely comfortable showing his children affection in public - even when it threatens his "tough business guy" image

5. He has an undying passion for the San Diego Chargers. Seriously, if they are losing? Stay out of his way.

6. He is both a youngest child and an oldest child, and yet neither of those.

7. Even if he purchases a gift only one day before the occasion it is meant to celebrate, he CANNOT wait to give it. Or tell me what it is. Or give me hints...and then give it to me.

8. He has big hands that are always warm and never sweaty.

9. He is not afraid to ask for almost anything, and a very high percentage of the time he gets what he asks for.

10. He is a pretty terrible liar.

11. There has never been anyone in the world ever that hates to lose more than he does.

12. He almost never calls me out on anything, despite the fact that I hold him accountable relentlessly.

13. He detests olives.

14. While he is an extrovert to his core, I think he's actually less outgoing than I assumed he was.

15. I would hazard a guess that he knows more about American sports than 95% of people who were born in this country.

16. He became a U.S. citizen two years ago.

17. He quit smoking 10 years ago cold turkey and never slipped up once.

18. He is incredibly squeamish...I think he'd have been much happier having babies in the '50s when all he was expected to do was wait in the waiting room and hand out cigars at the end.

19. He has a very good relationship with my dad. That's nice, because his own dad passed away several years ago.

20. He is one of those people that just Knows How Things Work.

21. He can fix or do almost any house project. This is extremely useful.

22. He has a really nice singing voice and loves opera.

23. Despite having never listened to it until about 7 or 8 years ago, he's a big country music fan now.

24. He figures out how 99.8% of movies are going to end within the first 10 minutes. It's infuriating.

25. He will go out of his way to support me in any endeavor I undertake.

26. He thinks I should write a book.

27. He knows all sorts of really interesting (to me anyway) things about how fruits and vegetables are grown and get to the stores where we buy them.

28. I think he'd rather eat my homemade pizza than just about anything else in the world.

29. Given some time to think about it, he comes up with some amazingly creative gifts.

30. He has beautiful bright blue eyes.

31. Family is extremely important to him.

32. After 10 years together, I'm still learning things about him.

33. He doesn't really like dessert or sweets. I once put birthday candles in a wheel of Brie for him.

34. He's only getting better with age.

35. He looked like this 35 years ago:

36. Happy 36th birthday honey!

Home Sweet Home

I don't mind traveling. I'm a plan-ahead kind of girl so I don't mind the packing and preparation. Getting up early for a flight doesn't bother me, waiting in security lines is no big deal. I don't love being in close quarters with other people for prolonged periods, but I'm small and my body naturally loves to curl up so the physical part isn't a burden for me.

But. I hate to fly. Oh, how I hate to fly. I'm terrified. I don't even know when it happened. We flew regularly when I was a kid (you have to when you live in AK, no other way to escape!) and during college it was pretty much eight flights a year minimum. Not to mention the travel between here and Europe I did when Chris and I were courting from a (long) distance. But gradually, and even more since we had kids, I tend to stay put for the most part or take road trips. Living in California, people were usually eager to come and see us and we've had plenty of visitors here to MN as well. So for several years there, I didn't fly at all.

My fear has nothing to do with 9/11 either, a point at which I know a lot of other seasoned air-travelers became much more nervous in the air. My rational brain knows how safe air travel is and I can go over and over statistics and science and physics but bottom line, I'm truly terrified that my plane will drop out of the sky. It's worst during take-off, but I really can't relax for the duration of a flight. I try to read, but it's really hard to concentrate with half my brain willing the plane to stay in the sky. My ears listen for any noise they interpret as impending doom, I have to remind myself to unclench my jaw every so often and my heart pounds at the slightest bit of turbulence.

Given all of that? The sweet relief I felt when my second flight landed in Minneapolis today was surpassed only by the excitement at seeing my kids and husband. It was so absolutely lovely to get away, and seeing my sister and nephew was, well, worth getting on a plane(s) for. But there truly is no place like home and I am so happy to be here.

Slacker

Ok, so I blew it on yesterday's post. I was sort of busy loving on my nephew and witnessing/facilitating his introduction to such wonders as caramel apples and cotton candy. Oh, and watching him stick his finger into the nostrils of various barnyard animals. I am currently sitting in the Denver airport and perhaps the fact that I am typing this on my little phone keyboard makes up for its tardiness. Stay tuned for today's proper post when I am back in my castle...likely with a small blonde princess surgically attached to me,...

Observations

1. Despite having lived in California for six years, after one year away it really doesn't feel like home anymore.

2. It's really different interacting with kids when you are not their primary caretaker.

3. I feel genuine loving affection for my close friends' kids.

4. I wish my sister lived across the street from me.

5. 85 degrees in October feels really unnatural. Almost as unnatural as having snow on May 1.

6. Those cot-style dog beds are surprisingly comfortable. I took a nap on one out on my sister's deck today (it was a new bed, so not dogified yet). A perk of being small I guess.

7. It is a rare and wonderful treat as a mom when you are truly off duty for a few days.

8. My husband is doing a great job of holding the fort down and making sure P and B have a great time while I am away.

9. The sound of wind chimes makes me inexplicably melancholy.

10. I've become a lot more outgoing since becoming a stay-at-home mom.

11. Three days is the exact right amount of time to be away from my family.

12. I really, really enjoy taking photographs, particularly of kids with their moms. I think this is because so many of us spend our time behind the camera and therefore don't have many pictures with our kids.

13. It's a lot harder on my knees to crawl around on the floor than it was five years ago.

14. I'm reading the new book by Marisa de Los Santos, Falling Together. I love it. Everytime I find myself reading too fast I put it down so it's not over too soon. She might be my favorite author.

15. It's been a really long time since I could sit and read a book for an hour without feeling like there is anything else I should be doing. What a treat.

16. Being an aunt is one of the coolest jobs ever. I wish I could see my nephews and niece much more frequently.

17. Red wine, reality TV and apples with salted caramel sauce are in my very near future. Hasta manana...

Gimme a Break

I'm going to do my best to continue posting through the weekend but posts will probably be light and lacking in pictures. My lovely husband donated (another) one of his hard-earned mileage awards to me and I'm currently in California, spending the weekend with my sister and nephew. We kicked off the weekend break with a trip to Burke Williams for massages so I am all relaxed and ready to see a few friends and spend some quality girl time with my sis.

Back with more tomorrow...

Posterity

Selfishly, one of the few things that makes me sad about Pacey having Down syndrome is that he won't be a biological father - and most likely, not a father at all in the traditional sense.

I grew up with two siblings and lots of cousins. My mom is one of six children and most of her siblings had at least two children. So, a big pack of us cousins spent a lot of time together during our childhood. Some of them live in California and we got together occasionally with them and now our kids, which was completely awesome.

Anyway, I guess my definition of family has always been bigger than just a nuclear family. Of course, having just two siblings myself (Chris is one of four but two are much younger half-siblings), we were never really going to continue a line of larger families and millions of cousins. But it seems sad to me that, should Brighton have kids one day - which I very, very much hope she does - Pacey won't be the source of any cousins for her children. It's one of the factors that we think and talk about as we consider what we'd like our completed family size to look like.

There isn't much that I think is truly out of reach for people with Down syndrome these days. And I know it's not impossible for a person with Ds to be a biological parent (at least a woman...as I understand it it would be extremely rare for a male to be capable of reproducing) or even end up in a parental role by other means. But it won't be a straightforward choice* for Pacey and that makes me sad.

(Don't mean to be a downer, but am trying to be pretty honest about different aspects of parenting a child with Ds).


*I do acknowledge, of course, that the ability to have children is not always a given, nor straightforward, regardless of your chromosomal makeup.

Family Planning

Ha, I bet you thought this post was going to be about having babies huh? Well, I'm feeling pretty good about sharing personal stuff on this blog but I'm not about to get into THAT conversation.

Anyway, the title really references the IEP (Individualized Education Program, for those not "in the know") meeting that Chris and I attended yesterday. I was struck, yet again, by how incredibly fortunate we have been in our experiences with these meetings thus far. When we moved to Minnesota we selected the exact neighborhood we wanted to buy in based on the school district zones; the Hopkins school district is known for its excellent special education services.

And while it's not perfect - because nothing ever is, overall I have been very, very happy with Pacey's educational experience so far. Last year he attended a designated special education preschool which was a good fit for him at the time. Small class size, lots of one-on-one time, and the class spent two days a week integrating with a daycare program of same-aged peers and the classes were co-taught. It was a great year for him. This year he is attended a mainstream pre-K class within the school district (the way it works here is that they offer preschool for a subsidized tuition, which we don't pay as it encompasses his services). The IEP meeting was a chance to see how he has been doing in that classroom as well as set our goals for the following year.

I don't need to tediously document what we spoke about here, but there was a lot of positive feedback. It was a great chance to see that we are all on the same page as far as making sure Pacey is having a positive and productive experience in the classroom and that he will be as prepared for kindergarten as he can be. I feel like we are given a lot of opportunity to give our input as far as what we would like to see for goals...this was weird and kind of intimidating at our first couple of IEP meetings because I really had no idea what I wanted those goals to look like. I do have a better idea now, and our team also encouraged us to make an appointment to go see our local kindergarten school now, so that we will see what sort of things he will need to be prepared for next fall. I loved that idea...I know there will be transition meetings in the spring set up by the district, but by then the current class has almost finished kindergarten and thus the expectations will be very different.

Anyway, I have heard many difficult stories about the IEP process for other parents of children with Ds, and - even more challenging sometimes - parents advocating for their kids who have less defined delays and difficulties. So I don't write about our positive experience lightly, and I truly do not take it for granted.

I've been fortunate in that I feel like I have always had a team of people working with us and with Pacey that seek out our input and want to see him succeed to the best of his potential. I'm looking forward to making an appointment with the folks that will join our team next year and see Pacey through his elementary school years. Onward and upward!

The Proof is in the iPod

In case anyone needed any proof that I don't take myself too seriously these days, I present to you the following:

The Five Most Embarrassing Songs on my iPod (that get regular play)

1. True Colors - Phil Collins

2. Home - Michael Buble

3. Crazy Love - Aaron Neville

4. Just the Way You Are - Bruno Mars

5. By Your Side - Sade


Wow, I think I better hit publish before I change my mind on this. Excuse me while I go hide my face in shame.

P.S. Feel free to share your Humilating Hits in the comments...

Birth Order

I commented to Lisa the other day that sometimes I envy her the fact that her son, Finn, who has Ds was her sixth child. I think anyone who is a mother would agree that each child changes your life but that first one...well, the culture shock is a doozy. My situation was even a little different in that Pacey was premature and had his medical issues we dealt with before we even got his diagnosis. All put together? It was about the most atypical introduction to motherhood you can have. It's hard to acknowledge, but I truly believe that I didn't bond with Pacey as his mom until close to his first birthday.

I remember there being so much that I hadn't quite decided about how I'd approach motherhood...to breastfeed or not, to teach sign language or not, daycare or nanny, etc. And then I had a bunch of unexpected and foreign factors added into those decisions to make and I felt SO out of my depth. I guess sometimes I feel like if I had at least been through some of those experiences and decision-making with another child at least I'd have something to go on. And sure, I know that every kid is different but at least I'd have had some trial-and-error under my belt. It was really hard to figure out sometimes if I was doing everything I could to help Pacey or if my lack of experience was making things even harder for him.

Perhaps the hardest thing about having Pacey first is that it set me up to believe, naively, that a second, more "typical" experience with pregnancy, birth, babyhood etc would be easy and it was ANYTHING but easy. My pregnancy was much more difficult, taking care of a newborn right away (plus toddler) after a c-section was so demanding...although I'd never ever wish for a preemie again, there is something to be said for having 8 weeks to recover while your baby is in the hospital! And Brighton was just a much more needy baby compared to laid-back Baby Pacey.

Of course, there were a lot of good things about Pacey being my first child. Probably the biggest thing was that we weren't worried about another child's needs while we dealt with hospitalizations and a pretty rigorous therapy schedule. I could truly put all of my resources into him and I am grateful that I wasn't having to split my time and attention at that point. I also think that it was easier not to have another typically-developing child's milestones to compare to. I knew, based on the literature, that most children hit milestones quicker than Pacey did (and boy did it sting sometimes to see a friend's much younger child crawling/walking/whatever) but I didn't have a magic age in mind that had been my own past experience. For that, I'm grateful.

I think the thing I like the best about Pacey being my oldest child is seeing him in his big brother role. I know at some point that Brighton will "lap" him in many ways and I hope that she will stick up for him if and when it is called for. But for now, he is her protector and she feels comforted by his presence. She hates it when we drop Pacey off for school and wriggles out of my arms to go and wrap him in a huge hug at pick-up. The other day we were at the indoor play structure at our gym and there was a birthday party group of some older, sorta rambunctious boys playing. Brighton was a little intimidated by them but as long as she was with Pacey she was fine. When she needed a boost up she'd call for his help and, despite the fact he only has about 2 inches and 5 lbs on her, he'd crouch down and unceremoniously shoulder barge her rear end up until she could get a foothold. I'm happy he will always be her big brother.

Thoughts from anyone else about where in your birth order your child with Ds came? Or, if you don't have one, thoughts on birth order in general?

Phoning it in

I'm tired and Sunday Night Football, a cold beer and homemade pizza are calling me. Have some cute pictures of my kids in place of my daily wisdom (ha).

"Pacey be Eugene, Brighton be Rapunzel" (we are deep into Tangled here)

This kid is a seriously good sport

Someone's daddy bought her a present today. There are already long blonde
fake hairs all over my house. 

Please note the football jersey underneath the princess dress. We encourage
ALL gender stereotypes in this house ;)

Lighten Up

Being a parent has its challenges, but I also think that it's changed me for the better in several ways. The biggest one? I have gradually stopped taking myself so seriously. Anyone who knows me would probably describe me as a pretty serious person. I have been frowning so intensely for so long it would take more than Botox to erase the lines between my eyebrows (not that I want to...it would be entirely pointless!)

When I was a kid I was painfully self-conscious. I remember plenty of scenes with either family or friends where the group of kids would decide to put on some kind of performance. On rare occasions I'd be into it and participate freely, but more often it was just too embarrassing for me. I hate to be the center of attention and I was just too acutely aware of people watching me. My dad, especially, would really try to coax me to get into the spirit, and I appreciate now that he just wanted to see me having fun. But as he would tell you, my heels...they were made for digging in.

Anyway, I wouldn't say that I necessarily love the limelight at this point, but putting a smile on my kids' faces trumps nearly any level of personal humiliation. I'm not a particularly gifted dancer but when we have afternoon dance parties to shake off the post-nap crabbies, I pull out all the stops and shake my booty with authority! And I'm rewarded with giggles and pleas for more.

Any type of public dancing, performing, getting up on stage, volunteering, etc was absolutely a NO GO when I was a kid. I'd rather have died than get up a dance with a DJ at a fall festival, but you know what? The kids' school held a festival the other week and had a kids' dance company there playing music and encouraging them to dance. Brighton was a little lukewarm about it, but Pacey and I got out there and danced like fools. Literally nothing else mattered to me but the look of complete joy on his face.

I know I don't have all the answers, or even most of them. I'm not a perfect mom. I yell on occasion and my patience has a limit and sometimes? I just don't feel like drawing/playing/doing whatever it is She Who Must Be Obeyed requests commands. But darn it, I can be silly and we have fun.

Clearly I put on my helmet when I take the Toy Story bike out for longer rides

Floundering a Little

I am nearly five years into the journey of parenting a child with special needs, and I've learned a hell of a lot. The process of grieving and accepting is well and truly behind me now, but there are new challenges that lay ahead.

I think the thing that plagues me the most is that sometimes, honestly, I don't really know what I think about things. I believe that the opportunity for inclusion should be available to every child, but do I think it's right for my child? I don't know. I expect that when he graduates from high school, there will be resources available for him and for us to help him find something worthwhile to do with his time. But how do I judge what's worthwhile? Do I even have the right to decide for him what an acceptable use of his time is?

I have no reason not to believe that Pacey will ultimately be capable of living on his own to some extent. But I don't know if that's necessarily my goal. It's weird to look ahead and try to figure out who will be responsible for making these decisions. I guess as a parent of a young child you just imagine that at some point, they will be responsible for making their own decisions and you'll have to take a back seat and support those decisions the best you can - hopefully having instilled values in your child that guide them to choose well.

I personally always assumed that I would go to college, I would have a job and I would have a family. And that's what I worked towards. Those goals guided my decision-making and where I focused my energy. I just wonder at what point it will become clear to us what the goals for Pacey's life are, and how much Chris and I will decide those goals versus how much Pacey will be able to advocate for his own desires.

I realize this looks pretty far into the future, but I've been thinking a lot lately about what matters in making decisions about Pacey's education, etc (we have his IEP next week). I have talked about it with my husband, who I believe places more importance on Pacey being happy in his life. That's not to say that Chris would support a lifestyle of aimlessness, but it is his personal goal to make sure that Pacey is financially provided for such that he is not relying on his own earning power to support himself.

I also realize, of course, that there is no guarantee that any child I have will follow a path I envision for them. But it's somehow easier to make assumptions about the end goals in raising a typically- developing child and let it unfold along the way.

I read a post recently in which the author talks about her daughter's experiences thus far in a mainstream classroom and reveals that she wonders sometimes why she tries so hard to fit her square peg into a round hole. And I wonder the same...how do you find the right balance between challenging your child and not underestimating their abilities, with choosing an environment in which they will be happiest and most supported?

This post is a complete ramble and I think reflects the pretty disorganized state of my thoughts on the subject. I do, however, have some very clear hopes for Pacey. I hope that he has good self-esteem and believes in his abilities. I hope that he has companionship outside his family - and honestly, I hope that he has romantic love in his life. I hope that he maintains a great relationship with his sibling(s). I do hope that he is able to enjoy a level of independence and feel like he is in control of his life to a certain extent. I  hope that he continues to develop his own interests and finds a sense of community for himself around those interests.

And looking at these hopes - I guess it's clear at this point that I care more about how he feels about his life than what he achieves. Is that wrong? I don't know. Is it acceptable to hold him to a different standard than I do his sister? I don't know. (for right now my main hope for Brighton is that she outgrow this phase of defiance! :)

This is one of the ways that I am most stretched as a parent...I like to plan, to envision and help bring to fruition. It drives me crazy that I can't divine the future for Pacey and it's so hard to take things one year at a time for him. Anyone have thoughts? Parents of kids with Ds or not, I'm interested to know how much you want/try to plan your kids' trajectories...

These Are a Few

Well, it turns out that sequestering ourselves for the afternoon was just the ticket. Everyone has been in much better moods today (including me!)

I have several posts that are actually about Down syndrome-related topics percolating my in brain but nothing coherent enough to get down on 'paper' yet. So in the spirit of celebrating our improved morale, here is a list of things that make me happy, in no particular order:


Impromptu hugs from my kids

Good smelling laundry

Scoring great deals on stuff

Red wine - especially French

Seasonal candy

Unexpected packages in the mail

A stack of unread books on my nightstand

Not having any solo socks left after folding all the laundry

Giving gifts, particularly when it's Just Because

Fleece

My iPhone

My kids actually eating a meal I prepare

Getting feedback from teachers that makes me feel like they appreciate my kids as individuals

Friendships that last over distance and long gaps between visits

My photo wall (a work in progress)

New white cotton socks

Writing this blog

Out of Office

One of the hardest things about being a stay-at-home-mom is never really having the option of what we call a Mental Health Day in our family. When I was working it meant calling in sick, even if I wasn't physically ill, taking the kids to daycare and just having a day of laying low, napping, reading, maybe getting ahead on a few chores if that's what had been weighing on me.

Anyway, lately I've really been feeling the need for a Mental Health Day. I end every day totally bottomed out, and haven't been waking up refreshed and ready to face another day.

Our schedule for this school year (and I've already explored any other options) is less than ideal. B goes to school two mornings a week from 8:45 to 11:45, and P goes three afternoons from 1:00 - 3:30. The mornings are fine - I get some time with P alone and that's been fun. But then it's a rush to get them home to eat lunch (do all kids eat so slooooooow?) and back out to get P to school. Then it's rush B home, try to get her to nap, inevitably have to wake her up to pick up P, do a couple errands and home to crab our way through the witching hours.

Anyway, it's not the end of the world but I've definitely been feeling like I spend my life rushing them to get ready, eat, get in the car, get out of the car, eat, sleep, back in the car, back out of the car, etc. It's making me grumpy and it's making them grumpy.

This morning Pacey woke up a little snuffly, having finished meds for a sinus infection YESTERDAY. B was a weepy overtired mess all morning and the combination was enough to inspire me to declare a Mental Health Day of sorts. I called Pacey in sick (it's preschool, it won't kill him to miss a day!), we all had a rest and B is still sleeping after 2.5 hours while P plays on the iPad. It's not a day on my own to do whatever I please, but it's pretty darn close and I'll take it. This afternoon the kids will help me bake a dessert for a meeting I'm hosting tonight, we will snuggle up and watch a movie, and tomorrow hopefully will all wake up with a fresh take on life.

Grant Me the Serenity

I steel myself and open her door. In the half-light, she's lying in bed awake, waiting for me. "Good morning," I chirp, full of resolve to start the day on a good note. She smiles and talks about going swimming with her bathing suit and floats...she must have been dreaming about swimming. The tension in my shoulders eases a little until I start getting out her clothes for the day.

"More bed!" she says. I tell myself to just go with it, and announce that sure, we can get dressed in bed today. And then it starts. "NOT THAT SHIRT. CROWN!!!" Ok, so I pull her crown shirt out of the drawer. Rinse, repeat until I find the acceptable pair of pants. And then the storm hits. I pull the available choices of socks out of the dresser and she howls. "Cake ones!!" I let her know the cake ones aren't clean but that she can choose which clean pair she wants.

And thus a hill is created. A hill that I have to decide whether I want to die trying to summit. At this point it's not about the socks anymore (is it about the socks?!?) and I leave her to sulk. She eventually makes her way downstairs and becomes absorbed in Curious George. I try to capitalize on the distraction and slip her butterfly socks on her feet. "NOOOOOOOOOO," she howls, "STRIIIIIIIIIPES." You know, the stripes I offered her 15 minutes before.

On and on it goes. Shamefully, I lose my temper and yell at her: "You are really making me mad!" At that point I leave her to it again, and suddenly it's over. She walks into the kitchen and sweetly requests a waffle. She smiles up at me and hugs my legs. Is this an apology? Is she just congratulating herself on having successfully driven me batshit insane before 8 am?

I feel so ill-equipped for this child. I am struggling to find a balance between picking my battles, but also drawing a consistent line. I feel like we're really at a crossroads here, where she is testing to find out whether Mama Means Business. I am giving her every opportunity to make good choices and be in control where appropriate but she just pushes, pushes, PUSHES.

I hear her right now, in her room, where she's supposed to be napping. The door opens and closes every few minutes...I guess she's trying to see if I'm going to come up and scold her. The real pisser of it is that she'll probably give in and go to sleep about 20 minutes before we have to leave to pick up her brother. Which is totally awesome because you know what? An under-napped toddler is an absolute joy to be around.

I feel compelled to acknowledge that as hard as she can be right now, we also have moments of complete happiness and fun together. I guess I have to just make sure we have adequate re-fueling stops to make it through to...?

No Use Stringing Him Along

So here's something quirky about my son that has, I assume, nothing at all to do with Down syndrome: the kid LOVES string. I first noticed it when I got out a set of wooden beads for stringing; Pacey dutifully strung beads while I was sitting with him, but the minute I left him to his own devices he disappeared with just the string. I thought it was maybe a fluke until I noticed that the set was missing both its strings (we've since been given another set, and both of those strings are gone too). Pacey loves to trail these strings around the house behind him, curl them up inside things, and frankly I am not sure what else. I just know that he frequently requests his string.

If one of the strings is not available, he'll make one. We received a bunch of Mardi Gras bead necklaces at a festival recently and he broke apart all of them to make strings he refers to as his necklaces or simply his beads. They have accompanied him to the park, into his speech sessions, and into his backpack to wait for him to finish school. It's kind of funny to watch Brighton because she sees how much he is into these strings and naturally thinks she wants HER FAIR SHARE of them. But she doesn't exactly know what it is she's supposed to be doing with them.

Anyway, the hard thing is that he really likes to wrap the strings around things and the other day I found him with the string to a helium balloon wrapped around his neck. It wasn't wrapped too tightly but it certainly could have been and it gave me rather a fright to see him like that. The balloon and all strings are slowly being removed from the premises and I can't really explain to Pacey why I am taking them away. I've told him countless times that we don't wrap things around our necks but he doesn't seem to remember. Obviously I can't take any chances but it's upsetting to see him so upset.

The other thing? He's not going to let go of this easily. I walked into the entryway just now to find this:

Two shoes, laces nowhere in sight. Resourceful kid...

Belated Letter to Pacey

Dear Pacey,

I owe you an apology, son. There is no possible way I appreciated enough what a sweet, easygoing, wonderful two-year-old you were. I don't recall a single tantrum, even in the aftermath of new baby Sister.

That very baby Sister, however, is in the midst of demonstrating just how Terrible the Twos can be. I think she is intent upon confirming exactly what the age cut-off is for relinquishing your child at the fire station.

Anyway, I had no idea at the time just how easy I was getting off with you and I fear I took you wholly for granted.

You rock.
Love, Mama

These Are the People in Your Neighborhood

Although I do stay home and take care of the majority of the domestic chores, I indulge in the "luxury" of taking Chris's work shirts and pants to the dry cleaners for laundering. When we lived in England a large portion of Sunday was devoted to washing shirts in our miniscule under-cabinet washing machine, draping them over every available surface to dry and then painstakingly ironing them. I think I've earned this little luxury.

Anyway, I use our local drycleaners, a shop that serves a small enough population that the completed orders are hung on racks in alphabetical order just behind the counter (no fancy automated conveyers necessary here). This provides a very interesting little look into the attire of the people that live in our area. Nestled among the film-wrapped packets of dress shirts in benign corporate stripe is the occasional gem:

- A sweater that must have been waiting patiently for its owner since 1987 when it was made, because lord knows no one could possibly be paying to have it cleaned to wear next week!

- A female Santa suit. And no, I don't mean a Mrs. Claus suit. There is nothing about this outfit that says "jolly, plump, elderly lady." It's been hanging in the shop since we moved here nearly a year ago, and I can't say I'm surprised. I'd be too embarassed to pick that up too.

- The young man working behind the counter one morning commented that he appreciated that I had separated and sorted the pants and shirts I was bringing in. I confessed that I started doing it not so much to be considerate, but because one time I didn't and I pulled a pair of Chris's underwear out with the pants. The guy laughed and said, "Oh yeah, we have one guy that comes every Friday and brings all his undies to be cleaned." Funny enough as it was, but this mid-twenties, pierced and tattooed guy calling them "undies" really tickled me.

- And finally, a royal blue swimsuit fully bedazzled with sizeable "precious stones." The only thing I can think about this is that it looks like a human version of a Barbie outfit from the 80s.

I don't know, the Midwest suburbs might seem sort of tame from an outside perspective, but I think we're pretty full of characters...

Friday Odds and Ends

Whew, it's been a week. Chris is on his way home after spending the first half of the week in DC and the second in Puerto Rico. We're pretty used to him being away, but the full week trips are sort of brutal. This one started out pretty rough but the kids (and I) have mellowed and are coasting into the weekend. Doesn't hurt that I hired a babysitter for a few hours this afternoon to get a couple things done sans ankle-biters. It never fails to amaze me how much faster things go without having to buckle/unbuckle/bribe/cajole anyone along with you.

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I was hoping that doing some food posts would inspire me to get out my recipes and cook more but...it hasn't. Especially when it's really just me eating (if possible P and B are getting more picky so it behooves no one to make an effort on their behalf), it's hard to get any oomph.

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On the topic of food though, I hosted a playdate for the MOMS Club I belong to. Since it's apple season, I organized an apple tasting with six different varieties. The kids were a little young to really *get it* but we had fun comparing the different flavors (unfortunately the non-organic beat out the organic varieties every time). Anyway, preparing for this playdate led to a fantastic discovery at Trader Joe's:

Fleur de Sel Caramel Sauce. This takes caramel apples to a whole new level...I particularly recommend it with a good tart Granny Smith.

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 In other sort of food-ish news, it's been in the mid-80s here this week and so I took the kids for one last after-school ice cream outing. For some unknown reason (temporary insanity, perhaps), I suggested that the kids might want these star-shaped popsicle things instead of the usual tiny (at my request) vanilla cone. Naturally they both thought frozen sugar and food dye looked awesome. Pacey took one lick of his and then proceeded to stare balefully at my cone until I turned it over to him.

And Brighton looooooved hers, but kept getting distracted and ended up wearing most of it. We won't make that mistake again...I may have to impose a moratorium on DQ trips for as long as it takes them to forget that there might be anything available other than vanilla ice cream!

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I posted this photo on Facebook when I heard that Steve Jobs had passed away. Photo of Pacey using the iPad taken with my iPhone, Pandora playing in the background on our iMac. As you can tell we are 100% an Apple family. 

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And finally, B fell asleep after dropping P off at school on Wednesday and then woke up crabby in her carseat because she hadn't slept long enough. I pulled her into the front seat with me and curled her long legs around so she could keep snoozing. Oh, these days are limited. 

Happy Weekend all!

Connections

One of the coolest things about having a kid with Down syndrome is the connections I've made with people I'm fairly certain I'd never have met otherwise. I remember when Pacey was just a baby I heard from several people that we'd joined the best club we never knew we wanted to be a part of. It was kind of an odd sentiment and I'll be honest and say it wasn't particularly helpful for awhile. But now? I totally agree.

Pacey started having therapists come to our house to work with him when he was just a couple of months old. It was a really intense time, and having their consistent presence there helped me understand him a little better, and allowed me to shift some of the "burden" of monitoring his development. I think it's fairly common for parents, especially in the beginning, to feel like we can never be doing enough to help with development. If we just practice more, seek out more, better therapies then our kids will keep up with their peers. We all have to reach a point (I think, anyway), of letting go a little and remembering to be a parent first and a co-therapist/caretaker second. That was particularly hard for me since Pacey had so many health issues and hospitalizations in his first year on top of everything else.

Anyway, by the time Pacey was three and transitioned from Early Intervention to the school district, I really felt like some of those therapists were family. I still think, when I see Pacey doing something particularly awesome on the playground, that I wish I could tell Joe, his physical therapist, that all his wonderful work with Pacey really paid off.

I've made some other really great connections as well. One of my best friends here in MN is someone I'd never have met had we not both mentioned to a personal trainer that we had a child with Down syndrome. It's funny too because it's only been relatively recently that I have started sharing that with people. I used to feel weird about it, like I was making it an issue by mentioning it, but now I realize how many great connections you can make with people in sharing that information.

I'd love to be able to say that this blog is another way to make connections with people. So if you're reading, leave me a comment! Tell me what your connection is to Ds, if you have one, ask me a question, or just say hi! It would be really cool to know who's reading. If you don't have an account that allows you to sign in, comment anonymously and just leave your name. Don't be shy!

Public Library FAIL

Mondays are a free day for us, no school or therapy sessions. This Monday I decided to take the kids to the library to get a fresh stack of books and let them play for awhile. We're really fortunate in that our local library partnered with the Minnesota Children's Museum to create a play area within the library that the kids love. With the exception of story times, it's usually pretty empty too. A great way to while away a Monday morning when I'm not up to a more adventurous outing.

Anyway, towards the end of our visit this week Brighton spied a little girl sitting with her mom at a kid-sized table near the DVDs that can be checked out. She's really got a thing for older kids right now so she marched over there and sat down. She immediately noticed that this little girl's entire stack of books and DVDs were princess-themed and developed a baaaaad case of Princess Envy.

Now, Brighton's tantrums are becoming less frequent as she develops her language abilities, but when I told her that the books and movies had already been selected by this other girl, she flew into FULL ON TANTRUM mode. Although the library is generally pretty empty I still didn't want to bother the other patrons with this nonsense so I quickly tried to find some alternatives (Elmo, Bernstein Bears, etc). Nothing was working and then this other mom saw her opportunity.

"Oh, you know what? Other Little Girl is only allowed to check out two movies at a time anyways, we can share one with your daughter."

Nice gesture, but I'm really trying not to reward B for this sort of meltdown so I demurred, letting her know that it was fine, we'd find something else.

"No, no really, I insist," she said. "Other Little Girl, how about we let her take home this one?" Other Little Girl grudgingly agreed and her mom triumphantly handed over this monstrosity to Brighton:

Nicely played, Other Little Girl's mom, nicely played. I have only a few questions at this point:

1) Whyyyyyyy was this movie ever created?

2) How was it ever justified as a purchase by the public library system

3) What are the chances I'll be able to return it before we actually  have to watch it?!?