Special Needs

I got back to work three weeks ago. Because of scheduling difficulties and because he is now in a day care,  I haven't yet gotten to see one of the boys I work with. Today I called his mother and asked how he is.
"Really good," she said. This weekend he ate a whole bowl of food by himself'. I heard the delight in her voice. "Did he use his fingers"? I asked her. "What did he eat?"
"He ate our food with us. I cut up some pasta and some fish and some vegetables and put it in a bowl. He ate all of it, using his fingers. He picked up the pieces and put them in the side of his mouth and chewed them up and swallowed them. He ate all of it!"
He is two years and three months old, and until now, he will only accept soft food. He doesn't put his fingers in the food or bring anything to his mouth. Any bit not acceptable to him he spits out. I was thrilled and delighted with her news. I will see him tomorrow.
No one who is not involved in the care of a child with special needs can imagine the joy, relief, and delight one feels when they do something that typically developing children just do automatically. Two weeks ago I watched in unmitigated joy as my little cousin of ten months sat in her high chair, grabbed the pears, the bread, the pieces of cheese, and everything, in fact, that was offered to her. She got the food to her mouth and chewed and swallowed and ate some more - a two-fisted little eater obviously enchanted with her food. After finishing every last morsel she was removed from her chair, and then showing good fine motor development she picked up the crumbs from the floor. An efficient little vacuum. Finally content with having done a thorough cleaning job she stood up, smiled, and sat down. She had our undivided attention so she performed this remarkable trick a few times .
How miraculous when everything works as it should, a superb intricate enmeshment of different systems working in unison in a little being.
I returned to the news that one of the boys with whom I had worked had died. He was two and a half years old. In his case, it was probably better for him, he suffered from microcephaly, he was blind, and deaf, and had to be fed through a g-tube. At the same time he responded to his parents' voices and presence, he interacted with his environment, touching objects with different textures. He loved music and responded to it by smiling. His parents and sister were devoted to his care. They are devastated. All I could do was tell his mother how very sorry I am, and what a good parent she was, and that she took wonderful care of him. She was so upset that maybe she had done something wrong to cause his death, by not giving him enough medication, or by giving him too much medication, or maybe she gave him water incorrectly, or kept his room too warm or too cold.
"No, no, no, you did nothing wrong at all." How can one console grieving parents? I would never say "it is for the best." All I can do is listen to them, and show I care.
It is not always easy.

Catch Up

Phew. As ever much happening. Externally, internally. The internal things are harder to write about because they occur in a place beyond words, as brief flashes of insight or understanding during a yoga pose or while I am waiting at a red light, or getting onto BART. I did carry a notebook around with me but in the interests of lightening my load, so to speak, (my handbag) I threw things out, like a tin of peppermints, my notebook, some of my numerous chapsticks and lipsticks. Now I am reading Joan Didion who writes how she and her late husband always kept cards with them on which they would write Oh well, I am neither one of them nor do I write like them.
Since my return I have been catching up with friends, family, evaluations at work,  reading, buying items to pursue my crafts like beading and knitting, and so on.
A most delightful event was seeing William and Olga, my beloved former neighbours, who flew the coop and went to live in Salina, Kansas. I could write endlessly about them, and in fact, at some time I may. Suffice to say we spent a few wonderful hours together, over a really good meal and a hike at Albany Bulb. Then today my friend's son, whom I last saw in New Orleans, came to town for a couple of hours.
Tomorrow I drive down the Peninsula to visit someone very dear to me. She  has a really rare form of cancer and is on hospice now.  I wish she lived closer. Besides being from South Africa, and married to someone who is a member of the family, she worked in early intervention. We have always had a lot in common. She is a wife and a mother and is a warm, loving, nurturing being.  The world is a richer place for having her in it.
Yesterday I was at a get together for a daughter of my friend. She died of a brain tumor in December. These fleeting lives and passing of special people just serve to remind me how grateful we should be for each and every moment. I do try.

A Very Long Time

Yes, yes, yes. I know it has been a long while. As one concerned friend told me a few weeks ago, "your last post was August."

So, for those of you who are/were concerned as to my wellbeing. I am, thank goodness, fine. I just haven't done any writing of any kind as I have been busy traveling.

Before I left for Israel I spent a weekend with friends in Santa Fe and Taos. I have a tremendous affinity for the desert, and their two homes are situated in the most spectacular spots with endless vistas of clouds, sky, earth, chapparal, scrub. Beauty all around.

I have said this before and I will say it again and again and again. I am blessed to have good friends, and am equally blessed to have good who live in the most beautiful homes, and whom are generous and hospitable.

I left for Israel just before Rosh Hashana. This visit the weather in Israel was wonderful. It is the first I remember at this time of the year - the season of change, as it is called in Hebrew. It even rained the first day I arrived and washed the dust off the trees the countryside looked fresh and sparkly.

I met with friends I haven't seen in almost 30 years, and it was such a joy to sit and reminisce and carry on as if three decades had been compressed into a couple of days. This is how it is with most of my friends there, we simply carry on our conversation,

After leaving Israel I attended the wedding of a friend's daughter. I met my friend 30 years ago on kibbutz! I will try and post the pictures of these reunions, and then I will carry on with my blog once in a while, as before.

Jerusalem

Wedding, Queens

New York

Thursday

My day began  in an apartment building situated in Richmond's Iron Triangle. It was another grey and foggy morning, and in mid-summer I wore a hoodie and had a scarf wrapped out around my neck. I have to call mom, who has to walk down several flights of steps to come down and let me in. As I walked to the front gate, phone in hand,  I saw a man open it with a key which all the tenants had. His baggy pants were falling down. he carried a bag of laundry over his shoulder. I hurried up and asked him to keep it open for me, which he did. It slammed shut behind us and he disappeared up a flight of steps. I went up a different flight through the parking garage. We met on the second floor, and surprised, grinned at each other.  He entered the apartment next to the one I was going to.

In the apartment the mom, or rather the guardian, whom I wrote about previously, bellowed out excitedly, "he's walking." She didn't even realise I came in without calling her. Indeed the little boy I began working with in the beginning of the year tottered about in a drunken fashion, lurching from my legs to his favorite spot next to the window where he plays with the slats of the blinds and looks out at the buildings outside. He lurched and tottered, but he walked. This is my last visit as he will begin our program next week. He has really come a very long way, and it is very exciting that he is doing so much better.

I spent the next hour playing hide and seek with him, trying to get him to catch a ball and release it, and bringing him back from the kitchen where he loves to stand in front of a cupboard opening and closing the door. Mom and I spoke about his progress, or rather she spoke in her normal fashion, which is in a very loud voice non-stop. Her pauses, if there are any, are only to catch a breath, or touch me on my shoulder. She told me about her family reunion in Atlanta. They had just returned. "It was so hot," she said, "all I wanted to do was stay inside," but Ayana (her daughter) dragged her to see Martin Luther King's grave, and the campus of Emory University. He (the little boy) was so good on the plane they game him wings. She spoke to an auntie and find out that the women in her family suffered from fibroids, she herself began bleeding after not bleeding for years. I interjected to say she must go to the doctor. She told me she had been, the doctor did a biopsy and she was going today to get the results. (Mental note to call tomorrow to check with her)

I got ready to leave and the little boy walked up to me, held me by my legs and screamed.

I drove to the office to use the restroom and check on my messages. I told the office coordinator that I would be away for a couple of hours. I had one little fellow to see, then was going to open another patient. I received the referral in June, called the mom who asked me to call back after July. I did call, several times. Every time the phone was answered by a long rap song (two minutes, because I timed it.) At the end of which there was no voice message prompting the caller to leave a message, and although there was a beep, who knew if anyone listened. However, after a couple of calls I did leave a message, with my office and cell number. I never heard back and I told the case manager I wasn't going to try anymore. "Three strikes and you are out. This is not a compulsory service."

Now, in mid August the physical therapist (PT) seeing the family told me mother is expecting me. (with a bit of coercion on her part, I am sure.)  I agreed to meet the therapist there today. I knew this was not going to be a pleasant affair.  But first I went to another little fellow I see. He is cute, but throws up the whole time, and smells of vomit. He has a disgusting habit of throwing up, then putting his hands in the mess to make it splash. I gag and look around for something, and grab a sheet of paper towels. This is how I spend my time with him. He wriggles away from being sat down to focus on an activity, like stacking rings, which is enthralling. He crawls away, throws up, smiles, and crawls. His two-year old brother is wracked by jealousy, and he grabs whatever toy I bring and plays with it. It doesn't matter that he has a room full of nice toys. This time, when I got there the outside of the house was being painted and the father was laying down paving. He took me on a tour showing me everything he had done. Inside a wall of the kitchen was cut out and pictures had been taken down so that the walls could be painted. The bricks around the fireplace were covered with a primer. A very large wooden crucifix lay on the sofa taking up all the room. It didn't seem right to move a bloody Jesus to the floor, so I sat wedged between his crown of thorns and an armrest.

An older half sister and a friend of hers were all dressed up. Mom, who normally works, came out of a bedroom, looked at me in a surprised manner and said "Oh, I'm so sorry, it's my my daughter's birthday and we are all going out. I took the day off and we totally forgot about you."

We exchanged pleasantries, I tried to get the little fellow to take a few steps, but he just plopped down in his vomit and didn't move. He was tired.

I left. In the car I poured sanitizer into my hands and went off to the other child.

I parked my car outside an apartment building and suddenly heard the physical therapist yelling at me from a balcony. Come on up here, there are stairs to the side of the building. The door was open, and coming down the passageway toward me was an extremely large, very black woman dressed in a T-shirt that came down over her thighs. Her hair was combed up in an untidy sort of pony tail."Hi," she said, sorry, I wasn't trying to avoid you." I walked in to the living room which was flanked by two sagging sofas against either wall, a TV set which was on. The physical therapist was on the floor with a little boy with a creamy skin, an afro and large blue green eyes. He seemed to be smashing a truck. Two women sat on either sofa, both of them appeared to be sleeping. The one opened her eyes when I walked in and smiled a toothless grin, the other woman did not wake. Mom sat opposite me and I told her we need to fill in paperwork, as I had explained in my first message.

"Why? not now. Is there a lot? What is it for?"

The PT explained that she is concerned she may have to pay for something. We both assured mother she wouldn't have to pay for anything. I said I would fill in the paperwork and she could just sign it. In came two older children, an older girl and boy who had just returned from somewhere. They said something to mom about another child who did something in class, and mom said "don't be so ghetto."

I just know this is going to be fun, and the child is not yet two. I see him until he is three.

Back to the office, ate half a burrito, answered messages, made some calls, rewrote my schedule, and talked to the program supervisor. That is always a relief. I can tell her my impressions and we can commiserate. It is very depressing to return from a place like I  had just been to, and think about the little boy and what kind of an environment he is in, and wonder what the future holds for him. We discuss resilient children.

I then called to check that a family of a girl I had worked with were at home, and went to visit them. I worked with the little girl for a year or so, then she came to our program. I absolutely loved her, her grandparents and her auntie. Her own mother was found dead on the streets when the little girl was just a few months old. The grandparents were informed of their daughter's death and then told she had a little girl who was born prematurely and is in a foster home. They went and brought her home. They also raise her older brother. They had a home in North Richmond, and had to leave it in the very first wave of foreclosures. The grandparents both work, but lost their home and found a tenement apartment in a really bad area. The place was filled with mould, no matter how much they cleaned. Worse than that were the shootings right outside their apartment, and the drug dealing, and the prostitutes.  And that is where I saw the little girl who had cerebral palsy and some brain damage. She also had, and has, the most amazing spirit. She is a fighter who insists on standing and walking. She has learned to move about in her wheelchair and uses a walker. I absolutely fell in love with her, and the whole family. Since she turned three I have only seen her once although we talk on the phone. I speak to the grandmother regularly. They moved again, to a nicer home. It is cleaner and quieter. So far there have only been two shootings in this area since they moved a few months ago. Just this week grandpa was laid off his job where he had worked for 20 years.

 I wasn't sure whether the girl would remember me, but she screamed "Nesta" when I walked in. "Nesta, come and sit here." She gave me a great big hug. We chatted, she showed me her leapfrog pad, we looked at photos. She answered questions. When I finished she couldn't yet talk, now she talks so nicely. She has a slight slur, a result of her CP, but I understand her perfectly. She still laughs and appears really well. She can get herself to the bathroom and insists on doing everything independently, and just needs a bit of help at the end. They have a great big TV and were watching something called Fright Night, about vampires. I would not encourage her watching this, but she was transfixed, although she did say it doesn't scare her.

We hugged goodbye and she said "Nesta, I love you." A warm and fuzzy end to my day.

R.I.P.

Maxie is no more. He expired in his quiet, graceful manner on July 28, 2011.

Bye Maxie, you were a good little companion.

Maxie Musings

Maxie has never fully recovered despite my ministrations. On the other hand, Maxie continues with his existence. Mostly he remains still, propped between the heater and an artificial plant. He continues to attack his wee little pellets at feeding time, admittedly not with the same fierceness as previously, but nevertheless, he continues to feed. It seems to me that Maxie leads an existence which is totally based in the now. He has led a singularly uneventful life, free of any dangers he would face in the wild. Maxie doesn't seem perturbed by his waning glory. His existence is punctuated by feeding time, but I don't think Maxie has any sense of time.  There is light and there is dark. There is existence, then there isn't, and until such time as there isn't, he exists, free of memories, free of past and future, free of worldly attachments and desires.

And now, an idea and an appeal to my faithful followers. I think I should name the blog something other than Tree Barking, because it is not entirely about my work. Does anyone have any ideas or suggestions?

Intent

Ever since beginning this blog it was my intent to blog far more often than I do. So much happens every day at work, with the children, with their families, with the ever changing rules and regulations, with the budget, with life in West Contra Costa County, and my intent was, and is, to keep up with this.

My intent, when I agreed to blog for the Albany Patch, was to blog a couple of times a month, nothing grandiose or overly ambitious. And so far, I have posted one, ONE, measly little entry.

My intent is to write on a daily basis so that I can submit a manuscript  while I am still alive.

All these, are my intent.

I read about other writers' work habits, and I am in awe. Somehow they finish a chapter  a day even though they are raising six children, living on farms, growing their own organic produce from seeds, and tending to their livestock. How on earth do they do this?  One thing I know about myself is that I will never be an early riser. My brain does not function early in the morning, and so I won't be one of those writers who is up before dawn to get in a few hours of writing before the demands of the day.

When I first began working in the healthcare 'industry' I fantasized about being free to write in the evenings. Little did I know that I would be writing all day long, At the end of every session I write a summary of what I did for the parents. Then every six months I have to complete a comprehensive evaluation for every child. My days are spent driving from home to home, crawling on the floor, 'playing' with the children. Listening to their parents, communicating with other workers. I come home from work and usually the most energy I can muster is to turn on the TV, lie on the sofa, and breathe.

Now it is July and at last we are enjoying a few days without rain, cold, and fog, I come home from work and sit outside and enjoy the evening breeze and watch the colors change overhead. These long evenings of summer are a blessed event and it is pity to come back inside to write