Good visit

I had a good visit with Toots at Children’s Hospital yesterday afternoon. She showed off her latest artwork and her newly painted nails. We talked about how she’s doing there; things have been going pretty well for a couple of weeks, and she is working on her “Level 2” application. This refers to the hospital’s point system, in which her behaviors and staff recommendations contribute to reaching a higher level with additional privileges. We played Rack-O, a card game that’s an old family favorite. When Toots is feeling well and behaving appropriately, she can be very sweet and fun to be around.

It’s sometimes difficult to remember why she is hospitalized. Then, all I have to do is look at the scars up and down her left forearm. You see, she’s right-handed, so she cuts on her left arm, and when she’s mad she’ll punch a wall or door with her right. She’s broken her hand and wrist several times. I hope the good time lasts for a while, this round.

Reality

Was on the phone yesterday afternoon with Toots’ social worker at Children’s Hospital. Bless her, she is young, earnest and optimistic. She kept talking about how Toots is “making progress with understanding her emotions” in their counseling sessions. Honey, I appreciate what you’re saying, and what you’re trying to do with Toots. But she’s been working on “understanding her emotions” and “developing coping strategies” for ten years. Bottom line? She has “better” times and “worser” times. But overall forward motion? Not really.

Something sank in

We are coming up on the tenth anniversary of the kids’ moving in, on June 29th. There have been great frustrations over the years, of course. It seems as if so much that has been said has gone into one of Toots’ ears and out the other. So many things she seems to never learn from experience. Well, one thing got through. She is very concerned about getting registered to vote in the general election in November. Something of all the political discussions and diatribes (largely from Lew) has stuck with her. No matter where she is, she wants to cast a vote. Yee-hah!

I just looked up and printed out the voter registration form. As Toots will be 18 before Election Day, she can fill it out and send it in immediately. Wow. She was actually listening, some of the time.

What's in a name?

I had The Ninja’s annual review meeting yesterday. It went OK – nothing I didn’t expect to hear. His teachers talked about how he started off the year with a good attitude, then changed around December. He became less cooperative, motivated and organized. Now, in April, he is getting his act back together. He and I talked about this on the way home. He doesn’t have an explanation for it. I have wondered in previous years, and I wonder again, if this could have anything to do with the abuse he underwent when he was 15 months old.

He and Toots (age 4) were being left at the home of a relative/friend of their birth mom’s (we’ve never been sure, but Toots refers to her as “auntie”). Unbeknownst to the adults, both Toots and Ninja were being abused by one of the older children. This was discovered when Toots was badly injured by being placed in a tub and having scalding water turned on her. They were taken out of this situation in February 1999, and went into foster care. Based on the little we know, it’s not impossible that the abuse started the previous December. Coincidence? Who knows? Could he be acting out a reaction to events that took place 13 years ago?

Anyway. During the meeting, we got to talking about how everyone in our family has a different last name. When we finalized the kids’ adoptions, they agreed to their last names becoming “Original Last Name – Dad’s Last Name.” (I use my “maiden” name.) Six years down the line, both of them are tired of having a hyphenated name, and would like to change back to using only “Original Last Name.” It seems to mean a lot to both of them. I don’t have a problem with this. I did a little research, and it appears that for the effort of filling out a few forms and paying $210 per person, we could change their names back. Now, $420 is a good little chunk of change that we could put toward other things. I have mixed feelings.

Anybody have an opinion on this?

Read a book this week

Over the weekend, I picked up and skimmed through one of my favorite novels, Mary McCarthy’s “Birds of America”. The book is set in 1964, and tells the story of Peter Levi, an idealistic young man of nineteen. Peter spends the summer with his
charming-but-considered-eccentric mother, in a New England town where the times are definitely a-changin’. He then heads to Paris, to spend his junior year of college studying at the Sorbonne, and finds that even more changes are taking place in the world.

I heart this book. Peter is a droll but lovable character; when I was younger I wished he really existed so that I could go out with him. His mom is delightful and highly principled. The supporting characters are a fun bunch.

Read it. You’ll like it.

Quiet time and reflections

I had two blessedly quiet days this weekend. Lew and The Ninja took off yesterday morning on a “boys’ day out”; Lew wanted to visit his childhood haunts in NJ and show them to The Ninja. They wound up connecting with some friends who live north of the childhood haunts, and spent the night. They got back a little while ago, pooped out. Ninja is playing his beloved video games and Lew is taking a nap.

I got to relax and recharge. I did some writing and reading, crocheted, spray-painted an old picture frame that I’m turning into a bulletin board, made soup, baked banana bread, and drank wine. Never turned the TV on at all. It was glorious. It is nice to have them back home, though – I was starting to miss them.

Visited Toots on Friday afternoon. It was a pretty congenial visit. She has lost eleven pounds since she’s been at Children’s Hospital. It’s a good start, but it is really a drop in the bucket when you consider how much she needs to lose to get anywhere near a halfway normal, healthy weight. But baby steps, baby steps.

She has been having a good couple of weeks, working on controlling her reactions when she can’t do or have something. “Controlling emotions” is going to be one of her formal goals, going forward. She has been working on that since she was eight. She’s 17. Will she ever get there?

Toots goes through phases. For a few weeks or a month, she will be unreasonable, argumentative, demanding, manipulative, self-injurious, sometimes violent, and we sympathize deeply with the staff at wherever she is. Then, she will go into a “good” period, where she is helpful, friendly, cooperative, and reasonably well controlled. That is why she keeps bouncing from placement to placement. But the good times never last. Is this going to be the pattern, forever? I fear that it is.

Next month, we are going to start the process of applying for guardianship. We may or may not get it. Probably may not, since she will most likely be considered “competent”. What a joke. If we don’t, after she is 18 she can sign herself out of whatever placement she’s in, and go – where? At times, she says she wants to come home. At other times, she wants to go to “independent living”. She doesn’t want to go to the State Adult Hospital, but I think she will probably wind up there at some point.

We are going to do our best to make sure she is in a safe and good living arrangement. If she winds up on the street eating out of Dumpsters, it will be her choice.

What I've come to

I was planning to go visit Toots yesterday afternoon at Children's Hospital. When it came time to go, I just didn't feel like it. So I didn't. Yes, I feel guilty. No, I can't go today due to medical appointments.

Tuesday

The Ninja was cleared by the concussion specialist yesterday. He can go back to karate and other sports, as long as he avoids head contact for the rest of the week. He was much relieved.

He is also no longer a bumpy-faced alien. The recommendations of Zyrtec and Benedryl have helped. The pollen count in our area is supposed to be through the roof. I found my eyes getting itchy and burny last night, took a Zyrtec, and enjoyed almost immediate relief.

We had Toots for a day pass on Sunday. Went to Mass, cooked, opened (small) presents from the Easter bunny. She was well-behaved in church, insisted on having Chinese food for lunch (this was before dinner – we caved in order to keep the peace), whined and complained only in small amounts. No meltdowns, and she went back to Children’s Hospital without a scene.

Although we are starting to plan with her social worker for residential placement after she turns 18, it is a frightening thought. Every non-hospital placement she’s been in, even when she said she approved and wanted to go, has turned out to be a disaster. She decides she doesn’t want to be there, and proceeds to behave in a way that makes it impossible for her to stay and be safe.

She’ll be 18 in September. What do the next six months hold?

The Bumpy-Faced Alien

I picked The Ninja up from school yesterday afternoon. My handsome boy’s face was covered with hives – red and blotchy – he looked like Mystique from the X-Men, only not blue. I gave him another Benadryl and called the doctor’s office when we got home. The office was able to fit us in right away, and we went over to see the nurse practitioner who works with his doctor.

She felt that it’s definitely an environmental allergic reaction. This makes sense, since several years ago tests indicated environmental allergies – even though he’s never had anything like this before. She recommended that I give Ninja Zyrtec once daily, and continue with Benadryl as needed. He is also to take Nasonex nasal spray. She mentioned Singulair, which he took for asthma some years ago. We’re not going to do that, though, as Singulair gave him terrible nightmares from which he would wake up screaming.

He had hives on his legs this morning; at least they were no longer covering his face. They were itchy, but bearable. This morning’s paper ran an article on this spring’s allergy season, commenting on how the warm winter is contributing to early and heavy pollen in the air. Great. The article recommended keeping the windows closed (Lew won’t like this, but we’ll do it), plus showering and changing clothes after coming in from outside.

Things should be OK eventually, as long as his throat doesn’t close up or start to itch. I told him again to go to the nursing office if that happens.

Talked to Ninja's doctor

She said it sounded like urticaria (which appears to be the proper name for hives). I can continue to give Ninja one or two more doses of Benadryl, but if the bumps keep popping back out she wants to see him. May have to give him steroids. If he begins to have trouble breathing, or has itching in his mouth or under his tongue, to the ER we go, stat.

I haven’t gotten a call from or about Ninja from school. Good sign. He is staying after for a club meeting, so I’ll pick him up about 3 pm.

Weird little bumps

The Ninja woke up with more hives. I gave him one Benadryl and sent him off to school, but I'm calling his doctor's office as soon as it opens.

What next?

Last night, Ninja came to me shortly before bedtime and showed me strange itchy bumps on his arm and the back of one knee. I sprayed an anti-itch spray on them and put him to bed.

This morning, he woke up COVERED in bumps, on his face, chest, back, arms and legs. They were raised welts, not red. We were getting ready to go to Palm Sunday Mass, but I quickly changed direction. He’s had all his vaccinations. I frantically searched on the NIH and Mayo Clinic websites, looked at pictures, and decided the bumps were hives. An antihistamine was recommended. I ran out to our regular drugstore, but they were out of Benadryl. I drove to the next closest drugstore, and bought Benadryl and soothing oatmeal bath powder. Got home, gave him two Benadryl, and the welts and the itching began to recede. He rested drowsily most of the afternoon. An hour ago, the welts began to come back. More Benadryl. The welts are receding more slowly this time, and he is in the shower. Any other suggestions?

For a healthy kid, he comes down with a lot of stuff.