I was having a really hard day earlier this week. I mean like asphyxiatingly Jonah hard.
I glanced up to see Amelia and Elise nose to nose, fighting over whether the show was over. Elise said yes, since the music wrap up had started, Amelia said no, as she wanted to watch them dance into the credits...
And it hit me like a blow to the gut. They are exactly the same size. Exactly.
They should not be the same size. Elise should be talking about teen things and looking like a woman. She shouldn't be the same size as her 8 year old sister who is 4 years younger. She shouldn't be more difficult to understand than her 5 year old sister. She should have friends to call and text, not a puppy to play Doc McStuffins with....
(Which was super cute, by the way...)
Here's the thing. You don't just accept Down Syndrome and all the disabilities that may or may not come when your child is born, and go on, never a thought to what might have been...the side paths sneak up and you have to re-deal with the now, every once and a while. And it doesn't mean that it isn't worth it...or that you would do it differently...just that it's never done.
I have said repeatedly that I am glad that I am a bigger woman and that I enjoy being strong. Ethan was tussling with Elise yesterday, and accidentally picked her up more than usual, and realized how big she's gotten...and realized what kind of task I face every time I go into a store...as I literally lift her up and into the big part of the buggy 80% of the time...beyond the keening at lights or abruptly running off. I am glad she is small of stature (4'6"), because if she was as tall as a few of her more docile friends, I'd be hard pressed to deal with her sensory meltdowns...and because of her profound struggles in public settings, I am thankful she has a visible disability. As I've seen with her sister, who also has sensory issues, people aren't as forgiving with the invisible disabilities...
I do get flashes of what might have been. She is my most athletically inclined child. She really LOVES sports...but she struggles to play. She is a leader and commander...but people struggle to understand her. She adores babies and animals, and they love her. She would have been the consummate babysitter/pet sitter. I hope she will find a niche that will give her responsibility and independence in an area that she thrives in...but for now we are still looking and supporting and training.
Sigh.
I know this a little bit of a dark post. But it's not all gumdrops over here. And that's okay.
Elise was the reason my 7 year old didn't learn to ride a bike until she was 6. We had given up on bikes as a family experience.
We gave up on bikes around the time her weight went over the trailer limits...and our muscle's coping options...she is terrified of the insecure-ness of bikes. She is petrified of even the exercise bikes upstairs. I bought her one that I hoped she could use for exercise alone and to get her used to bikes in general, hoping we could eventually graduate to a *real* one. It was seriously ugly.
I have been chatting with my local bike guy about building her a tricycle. Like this:
We have spent several sessions where I realize something and go back to him to see if it is feasible and how much it would cost to make it work.
We were talking a minimum of $500. Probably more.
Because this is a rather large cost, we had opted to wait another year, until she was 12, as she will probably be within an inch of her final height.
2 weeks ago, I found a listing on a Facebook local yard sale group for a trike. It looked so cool, and it's cost was less than half of the Amazon listing.
I chatted with the seller and Ethan and I decided that it was such a cool option that had a HUGE possibility, and we decided it was worth the trial.
So I broke my neck, to get an hour across town to buy this bike, when I should have been getting ready for Christmas.
Elise is so hard to buy for. I spent very little on her for her birthday, because it makes no sense to spend big for ceremony's sake, and I decided that if she discovered anything during the year that she got excited about, that I would make up for it then.
Because the Mobo Trike is about 6 inches off the ground, it's rather like a bike and a Big Wheel got married and had a baby. Because of its low profile, it is significantly less wiggly and scary sensorily.
The handles are a little different, so there was a learning curve. But she had ridden a trike with a similar driving mechanism when she was in pre-K. It took about 3 minutes to talk her onto the bike, 5 minutes for the steering idea to make sense, 15 minutes for her to remember, another 10 to remember the hand-brake, and 15 minutes for her to not slam her feet down on the pavement and yell "Scary!! Fast!!" There will need to be another few sessions to remember you always have to peddle in the same direction, but all in all, it was pretty much a miracle. Easy, fun, and almost a typical experience.
She did great, and I plan to take her to my church parking lot, and set her free sometime over Christmas Vacation.
Here are a few pictures for you to enjoy, a helmet will be added next time, but with all the sensory issues, and that she was unlikely to fall off, it wasn't as necessary for our start trip. In 20 square feet of driveway.
And that, Ladies and Gents, was darn close to a Christmas Miracle!!!
I hope that your holidays and Christmas are lovely and full of good memories...and we'll check in again, soon!!!
This is one video that Elise will never have to watch. It is innate. I don't know how she knows, but she has a wider base than any kid I know.
She is exceedingly defensive. She has never willingly let us wash her in the bath. She has never willingly let a doctor examine her. She may or may not come willingly from a store. And if she doesn't want you to, it will take all of your 37 years worth of strength and skills to get her to do it.
If you don't have 50 lbs on her and she locks down, you are not going to be able to physically manipulate her.
This goes back to the good old days when she was on chemo and STEROIDS when she was a whopping 18 pounds.
Back then the nurse practitioner wanted her to take Tums. For calcium. Let me remind you exactly how many medicines she was on. A BUNCH. Most were liquid. They all involved me sitting on her to administer or giving them to her by her main line port. And they were all important to her survival, except the Tums.
When I would attempt to give it to her, she would buck and scream. And so I did what any good mother would do, I smashed it into a powder and hid it in her food. And she started boycotting food, just in case it was where I hid the Tums. NOW. At 2 years old and 18 pounds, this is not safe or reasonable option. The nurse practitioner got upset at me because I told them I wasn't going to push the issue. The floor nurses saw me sitting on her while she screamed and gargled and bucked and spit and bit, and backed me up. The exact words from the nurse practitioner were "She's not that big. I don't see why her mother doesn't just make her take it." One of my favorite nurses, told me that she told her "Then you make her, I've seen it. You aren't going to win." But rather than listen to actual people who dealt with Elise, she kept prescribing it. So, I started taking the daily Tums to shut her up. I probably needed them prophylactically for anxiety anyhow...
Why do I tell you this story? To drive home a point. She doesn't do "backing down".
She has bowed up several times lately and refused to go to bed or leave the library or leave CVS. This involves her running or fighting my hold on her wrist.
I think she has broken my thumb. I have had increasing soreness daily. But interestingly, on Monday, I picked up a bag and slid it from my palm to my shoulder and it almost dropped me like a Vulcan Nerve Pinch.
I broke my thumb sledding when I was in college, and it feels remarkably the same. I am of two minds about going to the doctor...it's my right hand...and I need it very much. And braced, it will do me almost no good. On the other hand (ha ha, pun intended!), if I don't get it to heal, it's not going to be doing me any good anyway...
In similar news, my long term back pain has escalated to spasms, and I am going to my general practitioner. BUT so I don't look like a drug seeker, I got Elise's pediatrician to write me a note, validating my situation.
Do you hear the irony here? I have to have a doctor's note to go to the doctor.
I have enjoyed reading several honest posts lately...and I swear I was steeping this post in my head before I read them...one of the most striking ones was this one: Some Kids Are Hard To Raise
I am feeling the heavy of what's going on with Elise...I love reading about how awesome everyone's kids are doing, but it gets a little depressing when you read the 30-eleventh post on how somebody's kid with Down Syndrome is totally on grade level and is hanging with their typical peers...and all that jazz.
I am also feeling a lot of the sensory crazy with both Elise and her twinkie, Charlotte.
Last Tuesday, was Elise's Off Chemo anniversary. 9 years. On one hand, I feel like I just turned around...I remember everything...I can smell the antiseptic scent of the hospital cleaners and tape adhesive. On the other hand, I feel like we have lived 2 lifetimes since then. The time has gone quickly this year. But it has been such a hard year, I have felt every.single.second. of it. I don't understand how you can feel both the oppressive passage of time, and the speed with which it passes you you in the same instant, but somehow I absolutely can.
I know that much of the difficulty with Elise, is sensory-based. I didn't realize how much of that was so, until Charlotte started upping the ante.
I also know that Elise isn't just a child with Down Syndrome. She also has ADHD, a sensory processing disorder, and is still paying the piper cognitively for fighting and winning against cancer. Even if she had not had Down Syndrome, she would have been a difficult child to raise.
But lately, I have felt some wistfulness for an easy kid. Just one. I don't have one, in case you were wondering. I have 15 year old son who has charisma that oozes out of his ears, and is very intelligent, but has the attention span of a squirrel when it comes to school responsibilities. I have Elise. I have a 7 year old with dyslexia and a type A personality, that is beginning to feel the effects of dyslexia on the perfectly ordered world she craves. And I have a 4 year old who is beginning to make Elise's sensory issues look like child's play.
I would like to take today to say, out loud what I would like...
1) I would like to choose a church based on my family's desires, instead of which church has a special needs program that is safe and actually teaches Bible stories to Elise.
2) I would love to go to the grocery without anxiety over Elise throwing things on the floor that she doesn't want me to purchase...or clothes-lining a stranger child in an aisle...or opening a box of something I wasn't planning to purchase...or filling my cart with pretty boxes of things that she wouldn't eat in a million years that I have to replace on the shelves...or giving her earsplitting hoot because of the nice acoustics in the freezer aisle...or....well, you get the picture...
3) I wish I wasn't having to plan on holding her back to account for the extra years she gets to stay in school. I mean, she is thriving with her current teacher, and I am pleased to keep her back in a school that I cannot say enough good things about....but, when you have that kind of flex, and are not anticipating a huge personal maturation, it's kind of depressing...
4) I wish I could trust her not to take the 30 seconds left alone with her sister to "make her pay" for the emotional withdrawal that she can feel.
5) I wish this wasn't a true as it looks:
6) I wish she wasn't so tapped out when she gets home from school. She puts every single moment of effort she has into the school day. She literally has nothing left to give by the time she gets home. She spends every afternoon and weekend in "repair mode".
7) I wish she had a lovey or pet or something to help with her self-soothing, because she has sucked her thumb so hard over the last few weeks, she gave herself a blister on her thumb. And guess what she wants to do to make herself feel better over the booboo on her thumb? Yeah. It has been all kinds of lovely.
8) I wish she would accept that I have to brush her hair and teeth every day. I don't understand why it has to be the battle it is.
9) I would love it if she had more coordination/initiative to dress herself...we are still at the 3 year old level of having to have aid in getting stuff on and buttoned and tied and not backwards...and at 110 lbs, she isn't super easy to manipulate quickly. And there is nothing like trying to hurry and having her have a fit or losing her balance and crashing into you...there are a few muscles that I have discovered by catching *us* from falling...and Aleve is becoming more and more a staple in my days...at first I thought maybe I had fibromyalgia, thanks to the pain, lack of sleep, and general anxiety, and then I realized that I think she maybe has escalated me to shell shock (aka combat fatigue) and then been heavy enough that I am feeling the physical toll of helping a small adult with toddler-like self care.
10) I wish her desire to run could be rerouted. I mean, she still will break out of the car/house and streak off, and yet, I cannot get her to walk or run recreationally.
I know this isn't a roses and gumdrops post. And I am sorry for that. But for all her increases at school, it gets harder at home for a while...and based on home lately, I anticipate a great feedback session at the IEP meeting at the end of the month. I'll let you know. Also, I promise a 10 great things happening within the next week!
As you know, Elise has Down Syndrome and Sensory Processing Disorder and ADHD. This makes growing up a hair tricky. Because she is delayed, I cannot simply tell her why she needs to do something, and warn her and then activate it. She cannot comprehend it. I also cannot just DO something for her developing body and expect her to accept it, because the SPD requires an adjustment period. AND if I am successful enough to talk her into a change, her 2 year old heart wants to share the changes, and her ADHD mind thinks it's cool to show you, abruptly, with no warning.
Lately, I am attempting the placement of things that she will need in the future while it is not necessary, so when it is, it doesn't effectively ruin our days.
Implementation #1: She is 10. I fully anticipate that she will start physically developing before too long. So I purchased 2 very soft, stretchy, shelf bra-lets. Kind of a practice training bra, if you will. She was VERY disinclined to try it on at first. She wears it about 2-3 days a week right now. She kinda likes it, it's smooth and doesn't bind, but she likes to ditch it, occasionally. We've already added a day more than when we started. I hope that by the time she needs it, she will be willing to wear it for the entire week. I am encouraged by this.
Implementation #2: Ditto the physical development comment. This has been somewhat rockier. Deodorant.
For someone who gags over wearing lotion, you can see why this is a little problem.
I have gotten a vanilla scented one that does not make her ill. She rather likes the smell, "yum!!". She loved it, until she realized that is was for her armpits, and not snack. I am still only at once a week right now. But I, again, hope to add in the rest of the week by the time she smells like BO instead of hot puppy when she plays outside.
Implementation #3: I have gotten some cloth pads. I haven't done more than this, mostly because the whole situation nauseates me. I have a low grade plan. I will be taking her to a pediatric gynecologist (yeah, I didn't know they exist, either) this summer. I hope to learn that she can take hormones or birth-control to prevent periods, except for once a quarter and keep her home during that time. I cannot begin to fathom sending her to school until she gets some concept of the situation. I would not wish that on my very worst enemies. If I cannot do that, I will need to work it into her IEP that she can stay home during that time of her cycle, until she has some education in the expectations and care of herself.
Elise has already started the emotional roller coaster that is the hormonal monthly flux. I admit that I am praying that she successfully even keels a bit more over the next couple of years...because the highs and lows are whiplash inducing. Honestly, she started that last year. But she has settled into a document-able routine. She has two weeks of plain awesome. Then she has a week of bipolar highs and lows. The final week is the week of emotional crashing. Everything is bad and dreadful and not be be endured.
While it is not easy, I do appreciate the cyclical-ness of the current status. I don't appreciate being blind-sided by crazy. But I can at least plan for it, right now.
sidenote: I never understood even the idea of taking sterilization steps until lately...I see why it becomes an option for some situations. I would never do this until it is clear that she wouldn't have the where-withal to make life choices on her own. But I see the appeal. (Interesting factoid: A woman with Down Syndrome only has a 50% chance of having a child with DS. I would have thought that because of the genes, it would have to be 100%. Interesting, huh?)
The ADHD thing is still a work in progress. It is NOT okay to make people smell your armpits or admire your bra. I hope, again, that by the time it's an dramatic issue, that we have nailed that dead horse to the floor!!!
If there are readers of older young women out there, I would treasure any words of wisdom in these areas...and any more that I have not thought of.
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