Beyond Acceptance

Last night I caught a few minutes of the Olympics. There was a segment in which Bob Costas sat down with Tom Brokaw, and they were talking about former Olympic snowboarder hopeful, Kevin Pearce, who sustained critical head injuries while training in Utah in December. Kevin remains hospitalized and is undergoing rehabilitation. His doctors and family hope that one day he will be able to speak again, and walk unassisted again. Life can change in the blink of an eye.

The segment on TV revealed that Kevin is the youngest of four boys in what appears to be a loving, close-knit family. I was really struck by the interviews with his family members.

And then, there it was: one of Kevin's brothers, a young man by the name of David, has Down syndrome. There was footage of Kevin, before his accident, with David, and then interview footage of David talking about his brother. I stood there watching with a lump in my throat and tears in my eyes. And a feeling of peace washed over me.

It's the exact feeling I had when I saw Finn pull up to standing by himself for the first time a couple days ago. This little voice inside me whispered, "He's going to be fine. He is fine."

I know that Finn is never going to fit into the parameters of what most people consider "normal" or "typical." I know he will talk differently than most, and walk differently. I know that he will never be a brain surgeon or a rocket scientist. I know that he will always have limitations that most people don't have.

That's, I guess, the "down" side of Down syndrome.

But I don't care. I had this quiet realization recently - very recently: I would not change a single thing about Finn. No, I would not even change the fact that he has Down syndrome if I could. It was not all that long ago that I would have made the opposite statement. It wasn't long ago when I felt and said, "I love Finn with all my heart, but if I could take away the Down syndrome? Yes, I would." I am realizing now, though, that my heart, and maybe my head, are in a different place now. I don't know where the change has come from. I think the path of acceptance is a winding one, with lots of corners, bumps, valleys, potholes, and sometimes even hairpin turns. There is a lifetime ahead of Finn, and I am not fool enough to think that there won't be times in the future when I might despair, when I might hate the Down syndrome.

But today, right now? Finn is perfect in my eyes - exactly the way he is. I can't imagine him any different from who he is, and truth be told, that extra chromosome he sports in all his billions of little cells is an integral part of him. Without Ds, Finn would be a completely different Finn. I don't want a different Finn. Would I change the world? And all it's misconceptions about people like my son? And all it's cruelty and indifference? Yes, most definitely. But Finn? I wouldn't change a single thing about him.

I feel at peace.

Ds Clinic

Recently I learned that the children's hospital Finn spent his first couple of weeks in has recently opened a Down syndrome clinic. That's what the website calls it, a "Down syndrome clinic." Through the blogging community, I know a lot of other parents who have children with Ds take their kids to a Ds clinic periodically, and based on what I've read on other blogs about this, and from the website of this particular Ds clinic, my impression was that a Ds clinic is a team of doctors, specialists, and therapists whose focus is on Down syndrome.

I love our pediatrician, and we've been with him for a long time - since my oldest was born 13+ years ago. He's a wonderful doctor, and while I have no problem continuing to take Finn to see him for his overall care, he's not particularly knowledgeable about Down syndrome, so I thought maybe having a team of specialists whose focus is on Down syndrome see Finn periodically might be a good idea. However, it appears now that it's just one doctor, a neurologist. We got a referral from our pediatrician, and I went ahead and made an appointment for Finn for late in March. But I'm kind of wondering right now what's the point? Is this necessary? What benefit should we expect to get from this? If this "clinic" really just is one doctor - a neurologist - what exactly is the point? What questions should I ask? What should my goal be in taking Finn in? Should I even be bothering with this?

I'd really appreciate input here! What has your experience been with a Ds clinic?

Tada!!

As I came in the house this morning, Kevin said to me, "Hey, Mom, does Finn pull himself up to stand yet?" "No," I said, "Why?" Kevin said, "Well, he just did it a minute ago." I didn't believe him. Or, rather, I thought he must be mistaken. Maybe he saw Finn pull up on his knees, which he does all the time, and decided that was close enough to call it "standing." He said that he had opened the bench seat by the front door, and Finn crawled over and pulled himself up to a standing position to see what was in the bench. Then he showed me; he opened the bench seat again, making sure Finn saw from where he was sitting, and sure enough, Finn crawled over and pulled himself right up, as if he's been doing this for ages.

And, I of course, sat there clapping and blubbering like a fool (I believe I heard Michael say, "She's having a mommy moment.").

We took the kids to the park a little while later, where Finn pulled himself up to standing repeatedly.

Seems like such a small thing to make such a big deal about, I know. What is the big deal? Finn is 19 months old and this is the first time he's ever done this, that's what. And he's made this leap in progress without having had any physical therapy since early December. When I saw him pull himself up onto his feet with my own two eyes, and I sat there crying tears of pride and happiness, all my second-guessing myself over having reduced his therapy over the last several months went out the window. Suddenly, my faith was restored that he will do the things he's supposed to do in his own time.

Michael said the other night, "Having Finn is like raising a baby in slow motion." It's so true, and really, so wonderful. We get to savor and appreciate each stage, and each step.

One of the questions posed to me during the last two of Finn's developmental evaluations was "Does he understand 'no'?" The answer I've given has been that we really haven't had much occasion to tell him "no." He's never been naughty as of yet, and doesn't get into much mischief.

That's all changing suddenly.

He's developing quite a heightened sense of curiosity and adventure lately - as well as a stubborn streak. He's at that stage where some of his favorite pastimes include:

• taking all the books from the lower bookshelves and ripping the covers off
• throwing things
• opening drawers and emptying them
• tipping things over, like step-stools and floor lamps

I am finding myself saying "no" to him quite a bit lately! Does he understand? It's hard to say. Sometimes he pauses in his mischief and gives me an impish grin and then keeps right on doing what he was doing. Sometimes redirecting him along with "no" works, but often, he'll navigate his way right back to the place I removed him from so he can continue on his merry way.

Yep, he's definitely one of my kids.

IFSP meeting

This morning we had Finn's semi-annual IFSP meeting with our service coordinator. Finn was sporting a nice shiner for the occasion (damn table leg!):

Because, you know, it's important to make a good impression on those social workers.

Anyhoo, it was actually a fairly stress-free meeting, as we did not have to deal with the typical evaluation beforehand since we dumped our PT recently. Instead, our SC just used a written screening tool, where she went down a list - several pages long - and asked us, "Can he do this?" "Does he do that?" and "Is he able to so-and-so?" They were all basically yes and no questions.

What was proposed to us as far as services go - and this is the stressful part for me - was either:

A. A "global" therapy program at a clinic, where he would receive PT, ST, and OT by rotating stations in the same center. This would be a twice weekly program, each day's program consisting of about 3 hours (so a total of about 6 hours per week).

or

B. In-home therapy by three different therapists, each for one hour per week.

Option A is out. The clinic they would want us to go to is about a 30 minute drive from our house, and I just cannot do that for a variety of reasons, among them, having other kids with staggered school pick-ups every day. It's too far, the times would not work, and I have Lilah to think about - I do NOT want to be dragging her around to deal with Finn's therapy. It wouldn't be fair to her. Also, six hours a week seems like an awful lot to me - too much. I just can't do it.

So we've agreed to option B, at least for the time being. Regional Center has agreed to assign Emily as our OT, and we will be given a new PT and an "Infant Stim teacher" who will work on cognition and language development.

Do you see what I've done, though? I've backpedaled on my previous decision to reduce services. We will now be doing weekly therapy not only with just a PT, but with two additional therapists as well.

I have to say straight out that I am still so, so torn on the whole therapy thing. I really am. I just don't know what the right and the wrong are. I do not at all regret that we've spent the last six months only having PT once a month (and none at all since early December) - although I have second-guessed myself plenty. But it's been really, really nice to not have to work our schedule around therapy, to not have that intrusion, and to just let Finn BE. And he's been fine. He's been happy and healthy and inquisitive and explorative. Has he met the goals we set for him at his last IFSP? No. I don't really recall all the goals we set for him (although I don't think there were many), but I do know that one of them was to have him taking at least a few steps by now. He's not. He's still not even pulling up to stand (well, he often will in my lap, but not on furniture or anything). And truly, truly, I am fine with that. I am not in a big hurry for him to walk. I really just don't see the huge benefits of him walking ASAP. He will walk eventually, of that I have no doubt, and that's good enough for me. (This, coming from a pretty high-strung mom!)

That said, there is a part of me, of course, that wonders if we're doing all we can for him. Are we holding him back? Would he progress by leaps and bounds if he had a lot more therapy?

I don't know, I just don't know.

So we've agreed to what will now be three hours of therapy every week, assuming all three therapists can work with my schedule, which is pretty limited (I absolutely cannot do afternoons with all the activities my other kids are involved in). And already, I'm feeling a little resentful about the intrusion it will be, and I'm feeling a lot of guilt for Lilah, because I don't want this to take away from my opportunities to take her to the park and on playdates. She will be starting preschool in the fall, and I don't want to steal these last few months from her.

Gah. This mom stuff is so hard sometimes.

Therapy

Things are looking up.

There's this gal who recently joined my book club. She lives in my neighborhood and has twin boys who attend the same school my kids attend. I've seen her around the neighborhood here and there for all the years we've lived here, but only started to get to know her when she joined the book club I'm in a couple months ago, and I liked her right off. We seem very like-minded in a lot of ways, and I felt like we hit it off nicely.

Well, guess what. She's an occupational therapist. I had heard this through the grapevine, although I wasn't sure just what kind of OT she is. But I took a small leap a few days ago and sent her an email telling her a little about Finn and asking if I could pick her brain about therapy, explaining to her all my conflicting feelings about it, what our experience with therapy has been, etc., etc. And I told her that we're kind of at a place right now where we're making some changes to Finn's therapy protocol, and that we have an upcoming IFSP meeting. I told her that I'd sure appreciate some guidance from someone in the know. She was so thrilled that I asked her (which was a relief because I really felt like I was imposing, but she went on and on about how she loves her job and really likes helping friends and acquaintances navigate the system).

She and I talked on the phone this weekend for a long time and her philosophy and approach seem to be in line with what I want for Finn. For instance, she explained to me how beneficial it is for him to crawl for a long period of time rather than being pushed to walk as soon as possible, because as a crawler (he's been crawling since 10 - 11 months but is nowhere near walking), he's developing and strengthening all kinds of muscle groups and fine motor skills that are very important for long-term development. With Eun, it really felt like she was just intent on getting him to the next big milestone, whatever that took. Granted, Eun was a PT, and Emily is an OT, and Emily told me that PTs and OTs do tend to have very different philosophies and approaches (which makes me wonder how a team of therapists with different philosophies and approaches can ever provide a cohesive therapy "package").

Anyway, she made me feel inspired and hopeful about the possibility of having a positive, beneficial therapy experience. And she offered to be Finn's new OT! She works with the Regional Center that provides Finn's services, and she said I can request her and that she has room in her caseload.

We still have to decide what we're going to do about PT and ST. I've been told now by our SC, by Eun previously, and now by Emily that speech therapists who do in-home therapy in our area are almost nil, so I'm concerned about that because I do think that Finn could benefit from ST at this point, and with Lilah still home with me and multiple school drop-offs and pick-ups for the other kids every day, plus naps for the two youngest, I'm just not sure how feasible it would be to take Finn somewhere for ST at this point. I also don't know what we're going to do about PT right now. I'm almost inclined to do without PT for the next few months, focus on OT, and maybe do clinic-based therapy in the fall when Lilah starts preschool.

Anyway, I'm feeling very positive about getting started with Emily!

What's this??? . . . continued.

By last night, I was near frantic about these "episodes" of Finn's. And in all honesty, I was kicking myself for putting it out here on my blog, because the comments were scaring the crap out of me. And the fact is, nobody can tell me what's really going on with Finn, all anyone can do is relate their own experiences.

So I went to bed last night intent on calling our pediatrician first thing this morning and demanding he get us in to see a neurologist STAT.

But when I woke up this morning, the situation suddenly seemed much less dire. I still don't know what these "spells" or "episodes" are. Maybe nothing. Maybe Finn has just discovered he can roll his eyes back, and so he does. Maybe he gets some sensory charge out of it. Maybe it is seizure activity. But my panicking about it isn't going to help or solve anything. Whatever it is, it doesn't seem like any kind of emergency. We already have an appointment scheduled for this coming Wednesday morning for his 18-month well check, so I will definitely talk to our pediatrician about it then. In the meantime, I'm going to keep a close eye on him to see if he continues to do this, and if so, what details I notice about it (does anything trigger it? does he stiffen up? etc.)

So there you have it. And thank you everyone for the love and concern!

What's this???

Okay, I do NOT want to go borrowing trouble. But I've noticed something new and strange about Finn recently. His eyes will kind of roll back, almost like he's looking at the ceiling, but without moving his head, and he seems a little . . . vacant. I've only noticed it maybe three or four times over the last few days, and each time it's lasted no more than a second or two. Somewhere in the back of my mind, when I've noticed it I've been slightly concerned, but not terribly. But this afternoon, Michael noticed Finn doing it - just for a second. I hadn't even mentioned it to him, but he saw it and described to me exactly what I have noticed and he even said "It's like he wasn't there for a second or two."

Now I'm a little scared, now that both of us have notice the same exact thing. Could this be seizure activity?? This is one of my greatest fears for some reason. I know nobody who reads this can tell me anything definitive, but I'm just wondering if anyone has experienced something similar with their own child.

Connecting the Rainbow

Many readers of this blog, especially parents of children with Down syndrome, are familiar with Reece's Rainbow. In case you're not familiar, RR is a ministry that promotes and supports international adoptions of children who have Down syndrome.

In other parts of the world, especially Eastern Europe, views held about Down syndrome are archaic, at best. Parents are generally encouraged to part with their babies born with Ds at birth, and these babies are placed in orphanages. If not adopted by age 4 or 5, these children are permanently institutionalized. Once institutionalized, they are no longer available for adoption, and for many, this is akin to a death sentence; the care is extremely poor and many do not survive the first year of being institutionalized.

The good news, however, is that many of these babies have been, and continue to be, adopted by families here in the good ol' USofA, thanks in tremendous part to the work of Reece's Rainbow. Some other wonderful news: thanks to Reece's Rainbow, many families in those parts of the world are now choosing to keep their babies born with Down syndrome rather than placing them in orphanages.

However, these families receive no government help in raising their children with Down syndrome. Therapy is hard to come by and must be paid for out-of-pocket by the families. Additionally, these families are sorely lacking in resources, developmental toys and equipment, and other materials to improve the quality of life of their children and maximize their potential.

Enter Connecting the Rainbow, Reece's Rainbow's latest project. Through this outreach program, RR will be making "mission" trips to Eastern European countries to hold workshops and offer resources and materials to families raising children with Down syndrome. They are also putting in place a sponsorship program in which US families will be able to sponsor a European family raising a child with Ds, and provide actual support and encouragement to that family.

If you would like to help out, please click on the link above and follow the links on their site. This is a wonderful cause!

Starting over . . . sort of

Well, Eun has officially been canned. At least by our family. I left our SC a voice mail message last Friday and followed it up with this email yesterday:

Hi Amber -

I left a voice mail message for you on Friday, but wanted to follow up by email to let you know what I'd like to discuss.

I would like to request a new physical therapist. I have a few reasons for this: firstly, I feel that Eun and I stopped seeing eye-to-eye on goals for Finn and how to reach those goals a while back. I am not in agreement that he should be put through exercises that make him cry, while she seems to have a "no pain, no gain" philosophy. I am not knocking her in this regard, I just don't feel that it fits in with what we want for Finn at this point. Additionally, we had agreed to PT sessions once a month. The last time we saw her was the first week of December. She said she would call after the first of the year to schedule Finn's next PT session, and it is now approaching the end of January and we have yet to hear from her. I don't know what's going on, but I have no interest in chasing her down. Because we seem to have a difference of opinion on how to approach Finn's PT anyway, it seems best if we just get a different therapist at this point.

Finn is due for his semi-annual evaluation next month, as well as an IFSP meeting to set new goals. I would like to get a new PT before that so that s/he can evaluate Finn and start fresh. I would appreciate it if you would let Eun know as soon as possible that we won't be using her services anymore, and also if you would get back to me as soon as you are able so that we can discuss this.

Thanks -

She (our SC) called me today and we talked for a little while on the phone. She assured me that it was not a problem to request a new therapist. However, since he's due for evaluation and renewal of his IFSP, and he'll likely qualify for ST and OT now as well as PT, we talked about how to approach that. She wanted to know if I would mind having Eun come out one more time to do an exit eval, and I said I'd rather she not, because at this point I just don't feel comfortable with her. So Amber, our SC, is going to meet with "the team" (whatever that means - I assume it's the powers that be at Regional Center) and decide if it would be better to have one of their staff therapists come out and do a baseline eval of Finn, or if Amber can just do an informal eval when she comes out for our IFSP meeting in a couple of weeks. I'm not sure if one is any better or worse than the other, so I'll leave it up to them how they want to handle evaluating him.

She said that it's not unusual for babies of this age to start doing center-based global therapy, and that there are benefits to it. I've been somewhat resistant to this idea for a few reasons, mainly practicality and convenience. I already spend so much of my days dropping kids off and picking them up from school at staggered times, and I refuse to mess with nap times, so that's a huge consideration for me. However, I guess I shouldn't dismiss it out of hand, so it probably wouldn't hurt to at least tour a couple of these centers, see what they have to offer, and decide if it's something that will work for us. Amber assured me that we are entitled to have in-home therapy until Finn is three, though, so the center-based therapy certainly isn't mandatory, although she did say that for our city, she only has one or two STs who do in-home therapy, and not a whole pool of them to choose from, so that may be an issue.

Anyway, I guess I'm feeling somewhat relieved that we've officially parted ways with Eun, and that we have the ball rolling in another direction now.

Bullseye

Sandra from DS New Mama sent this article to me today: Perfectly Imperfect. Jennifer Graf Groneberg says it so much more eloquently than I've ever been able to manage, and I have to say this article just nails it on the head for me. So much so that I read it with tears running down my face.

Also, this comment left by Tara to my last post:

You definitely need a new PT, but I've been thinking that since you posted about the ankle weights. Even our PT was appalled by that. You might want to axe her now, before the eval, though. Imo, as an OT, it would be helpful for the new PT to do the eval so she can set her own goals. Just a thought.

Also nails it. And it lit a fire under me! It actually never occurred to me to request a new PT before his eval., but that makes complete sense. I put a call in to our Service Coordinator to discuss it with her. Had to leave a message, but hopefully I'll hear back from her early next week. Thanks, Tara!