If I hear one more
know-it-all well-meaning person say, “you need to have him practice” or “he is just playing you, he could probably do it, so you need to get his therapists to have him practice”…I may flip out. And by “flip out” I mean I will calmly make them listen to the laundry list of issues that have made it so Ethan struggles with straw drinking and any kind of drinking other than from a bottle. Yes, I’m not a crazy mom and bite my tongue most of the time, but trust me that crazy mom will manifest itself in me when it is necessary.
Ethan’s main support groups-family, Down Syndrome support group, church friends, therapists-are all awesome in taking his medical history and Down Syndrome features, like low muscle tone, into consideration when making their judgements and expectations of what Ethan and us as parents can do. Its those random people (but sometimes not so random who really should know better) in the medical profession that we see only once or twice. I want to say, why don’t you come over everyday and you see how much he is “playing” us. What the heck? Kids want their milk like NOW, why would he play us? And why would he not eat delicious food when he sees how much we enjoy it?
So to bring a little understanding to our life a little as well as some other families’, I have mapped out a morning in the life of my son and I (not every family’s, mind you, because each family with a child with Down Syndrome or any special need or just any kid at all-is different and unique and each has his/her own challenges and strengths.) But I think we have all as parents felt the frustration of being judged or our efforts minimized at some point….so here goes!
5:45am Wake up, stay at home because the sicknesses from his short stay at a center almost killed him two winters ago. This winter was better, but not by much. 2 weeks in hospital. Or germs from somewhere. Either way, staying at home with Ethan is what we do for now. Get back in bed with mommy and snooze until before Ethan’s OT arrives around…
7am-Try to eat a little before OT gets here because she may want to work on him self-feeding with his spoon, but since that is still not perfect, Mommy has to sneak in a few (or more) scoops from her holding the spoon because Ethan has to have some nutrition. Multiple therapies in the mornings makes it hard to get nutrition in sometimes, and he has actually lost a little weight. The nurse sent a perscription for Boost (like Ensure supplement to drink) in the mail so he can get “fattened up..if he might have the tonsillectomy.”
7:10-Ethan starts spitting his food out after eating only a small amount. I am frustrated and think, “Its a good thing we have this Boost-he has really stopped eating much lately.”
7:15- OT arrives to work with Ethan. Since Ethan didn’t want to eat more food, they work on other OT skills using toys, etc. OT notices he has lost weight without me bringing up the new Boost diet. OT mentions that today she notices Ethan’s depth perception is off and I say “I’ll call to get him a referral for opthamology..the other parents in our support group suggested gettinga baseleine anyways because a lot of kids with DS have eye/vision issues.” (This is why you will sometimes see kids with DS with strabismis, I believe its called, and I think it makes the eye look “wandering”. Many require glasses and wear them at a very young age. I think to myself, “If Etan needs glasses, at least he enjoys ours. He also enjoys throwing them, though..”
8:05-I give Ethan his Boost while watching Signing Time. Because he doesn’t drink anything at the table lately, I’ve tried and watching TV while drinking is the backup plan because this child needs to gain, not lose weight, especially before a surgery. And no, we do NOT practice with the
blasted straw this morning because we don’t have time-he needs the nutrition fast, and I have to shower and get Ethan in his Theratogs (a suit he is supposed to wear pretty much all the time-it guides his muscles. But I was a bad Mommy and didn’t put them on before OT this morning. (BTW, His OT is totally cool and understands that putting on a complex suit is not always fit into the schedule easily, especially before 7am!) Ethan and I were enjoying sleeping and cuddling, so Theratogs on after my shower it is.
8:30-Calling Ethan’s PCP to request a referral for opthamology and hoping that its okay to wait that long to get this depth perception concern taken care of. I mention that over the phone to hope we get seen soon. Alongside his wellchild visit and ENT consult for probable surgery…hmm Happy Almost Birthday, Ethan. I’m kind of serious, though, if he gets glasses, he will love it. They may end up in his toybox, but he will love it. I still hope he doesn’t have an issue, though. We play phone tag a little while I’m in and out of shower and on hold some.
9:30-Putting on Theratogs. Oh I can’t wait until we’re done with these. I’m grateful for all the help these resources have given us, but not a fan of Velcro everywhere with a wiggling whining toddler making it more interesting.
9:40-frantically looking for the prescription to take to the local health department so Ethan’s government insurance can pay for the tons of Boost we will be having him drink. Can’t find it in the folder I thought it was in. Glancing at clock at knowing I’m going to be late probably. (Side bar-Thank you, fellow taxpayers, because although several things seemed mismanaged at times in government funds, helping families get their enormous medical bills and hundreds of dollars worth of thickener and dietary supplements paid for is very helpful. Its just money we really don’t have especially with one income, and while there is still a monthly payment based on income for the government insurance, it is still taxpayer money that helps in part with these types of programs. So thank you!) Anyways I couldn’t find the prescription and left for Ethan’s PT which is at the outpatient center.
10:03-Show up with Ethan in his clothes AND Theratogs and his hair is even combed, score one for Mommy, and when I get into car I see his socks are left. Go back in, and what do you know, the secretary says that there is only one shoe, says the PT. I look for it in car, not there, and say I can get it at the house when I go by (“to look for something else we misplaced” I don’t say aloud) and they say, no its okay.So Ethan does his PT, which is largely practicing walking with NO shoes. Thank you for not judging me, therapists and secretary!
10:20-I find the prescription tucked somewhere my husband put it in a stack of books by hte computer and head with Ethan’s other shoe to wait for his PT to end so we can run by to pick up the Boost from the health department.
11:00- We wait for a bit then get the Boost. They are in juicebox form, which tiny straws that Ethan is far from being able to drink from. I don’t even think I could do it with thickener. I ask the lady if there is another pour spout so it can go in a bottle for him to drink at home and examine it myself as I ask. The lady says, “oh, well just try to have him practice drinking from the straw sometimes.” I bite my tongue because this is not a time for crazy mom to emerge and stop myself from telling our life story but just say, “okay, well we will put it in another cup with his big straw since he’s on thickened liquids” and she just says, “oh…” like what is this lady talking about? I guess she knows what she’s doing after all.” The lady just saw a young(ish) mom and her baby, not a kid with special needs and a mom with a working knowledge of 5 different specialty areas in which Ethan is followed. So she did her job and gave her advice based on what she did know. As long as she didn’t pretend to know more, or doubt that I’m trying, or judge, then that is fine with me.
I do hope that people who DO know Ethan’s history-doctors, speech therapists evaluating him for swallow studies, teachers, etc. take things into account and do not patronize parents who are busting their butts to help their children progress. I think it takes a little experience for professionals and laypeople to understand to not expect too much or too little of parents but just realize some parents really do take advice and work on therapy goals HOWEVER as Ethan’s OT who has been working for quite some time in her field put it well by saying, “They are going about their lives, too..I know people only have so much time.”
I am open to constructive suggestions always (especially about the dang drinking thing, I don’t know why it bothers me more than others, I guess because now he is walking some at least..? If I screamed about the straw I think I would sound like Robin from How I Met Your Mother when she says “Nobody asked you, Patrice!!!” Fans, you know what I’m talking bout. ” 😉 What I don’t consider constructive, and I think other parents of kids with special needs-or really any parent-would agree that it is NOT constructive to imply there is a lack of trying on the parents’ part (unless you truly truly believe this and feel it needs to be said nicely)
Yes I know I may be kind of defensive, that is my main flaw and I have let God work on this in me for a long time…interesting he put me in this kind of parenting situation in which I will have to get up to bat for Ethan a lot I imagine..but later I think I will have to be telling people they are underestimating him!
THE BOTTOM LINE
This was rambly, but I guess overall the take-away I want readers to see is that you need to not be so quick to judge a kid without shoes on, a kid with a messy face or hair, or a kid who maybe skipped a therapy goal or two of practice. After seeing just a glimpse of the stuff we have to keep up with as parents, can you really blame us? Even if we skip practicing something, when you see how many things are having to be “caught up” on, including something as simple as nutrition, can you see why we run out of time for some of this stuff? I just try to shift my main focus from one thing to another, getting practice in everything, but focus on one or another. If I need to re-shift my focus, let me know, doctors and therapists and friends, in a nice, non-patronizing way, but we only have so much time in the day.