I can hardly believe it’s already been a year since Yirmiyahu was born.  So much has happened and time has gone so fast, and at the same time, I wonder how a year has already gone by?

It’s been an intense year filled with many challenges, the likes of which I hope I never have to go through again.  But as far as Yirmiyahu himself, he has been a bundle of sweetness that has brought untold joy to us all.

For my readers, what did you think when I shared that we had received the diagnosis of Trisomy 21 after Yirmiyahu was born?  Did you feel sorry for us, flinch at our bad luck and feel we deserved consolation?

I didn’t.

Though it seems most parents are initially devastated by the diagnosis, I wasn’t.  One reason for this is that I didn’t accept for even for one second what the doctors told me to be the final word, as a sentence for what our baby’s life would look like. I knew that they couldn’t predict his future, despite their solemn faces as they delivered the news and told me all the things he’d never be able to do, all the problems he’d have, all the things they were so sure that they knew.  I knew that this baby would have his own journey, just like each of our other children.

There was so much they didn’t tell me – I imagine that every year the list of things that they didn’t tell me will grow.  They didn’t tell me how our hearts would open wider and become more understanding and accepting of people and their challenges.  They didn’t tell us how our paradigm of the world would shift.  They didn’t tell us how much excitement we’d feel over every step of his development – his first smile, when he rolled over, sat, supported himself on both knees, held a bottle, waved goodbye, said ‘mama’ to me ….

They told us he’d be mentally retarded, and the social worker reassured us by adding that kids with Down syndrome love to hug and kiss people and don’t know they’re different.  This supposed consolation was worse than the doctors’ gloominess – this is what I had to look forward to?  None of them told us about the sparkle of intelligence and curiosity in his eyes or the depth of love in his heart.  They didn’t tell us how much he’d be able to learn, or stress how critical to his development our emotional investment in him would be.  They didn’t tell us about the impressive accomplishments of so many people with Down syndrome, things that would give parents so much encouragement and hope rather than fill them with discouragement and despair.  And they could never have told us how lucky we were to have this wonderful child become part of our family.  They couldn’t tell us what they didn’t know.

A baby with Down syndrome has some differences from a typical baby.  And that’s okay. It’s okay to be different.  We’re all different in some ways, and part of our growth as human beings is to widen the circles of those that we accept and include in our lives, even when they don’t look or act just like us.   But a baby with any kind of disability is still much more alike than different from all other babies.  They thrive on our love and acceptance and appreciation.  They have futures that can’t be predicted in advance regardless of their diagnosis or lack of diagnosis.  The future is open to us all and it’s up to each of us to make the most of it.  The doctors forget that.  But we as parents know better.

There are many milestones ahead of us. Crawling, walking, talking, reading.  There will be times of struggle and worry, times we doubt ourselves and times we are afraid for his future.  Like with all of our children.

I am so happy and grateful every single day that Yirmiyahu is part of our family.  As he is.  Because as he is, is just perfect.

Happy birthday, Yirmiyahu!

Avivah

It’s impossible for me to tell you how much happiness Yirmiyahu has brought to our family since he was born eleven months ago, or to figure out how so much love and light can shine out of one little body.  All of his siblings love holding and playing with him, from the oldest to the youngest.  Here are some pictures in honor of his eleven month birthday (that’s just an excuse to show him off, you know :)).

My Mommy said she wishes I would enjoy eating the food she gives me as much as I liked this!  

Yirmi, chilling with ds14

Avivah

Yesterday I had the first appointment with the child development doctor since Yirmiyahu was ten weeks old.  I wrote about that appointment at the time – it wasn’t a positive experience for me as I felt patronized.  I wanted this appointment to be different and consciously prepared mentally for it, to assume that those involved had our best interests in mind, etc.  I actively relaxed just prior to our meeting, to release any tension and negativity, picturing us communicating openly and with mutual respect, and with a positive conclusion to our meeting.

Despite bounding in with lots of good energy and openness, I very soon felt myself getting more and more guarded.  This began when I had to change Yirmiyahu’s diaper, and mentioned that I needed to go downstairs to get some cream since the skin on his bottom was bleeding.  When I came back she asked about this, and I told her that he’s sensitive to the corn syrup in his formula and his skin gets easily irritated as a result of this sensitivity.  She told me not to tell her medical reasons for why it happens, as that’s her job.  Then she asked a number of questions about the bleeding, how do I know it’s not internal, etc.  I’ve mentioned this to a number of doctors in the hospital, his regular pediatrician, his naturopath and his osteopath, and never had this reaction before.  Though I answered all of her following questions as accurately as I could, I was uncertain why what I said was a problem and decided to just answer what was asked without volunteering anything else.

She kept asking me questions and I was increasingly feeling like she was testing me and waiting to jump on a wrong answer.  When she asked about him eating solids, I told her about his difficulty in eating and my efforts in this area.  She asked me why I think he’s not eating so much.  I told her I have no idea, that’s just how it is – I was concerned that if I said anything, she’d tell me why I was wrong.  She asked me repeatedly and I told her, ‘I don’t know, what do you think?’  But she didn’t answer, she just asked me again what I attribute it to.  So finally I said, ‘I have no idea, maybe because he has a high palate?’  (I took Yirmiyahu to an osteopath last week for his first visit, and this was one of two possibilities that she raised for the feeding difficulties.)

The doctor told me his high palate isn’t relevant, and then went on to say it’s because of his gross motor development that he pushes the food out of his mouth.  I listened for a few more minutes, wondering why she couldn’t have just said this in the beginning without grilling me to tell her why it’s happening.  I had a sense of deja vu from the first visit, when she asked me why I thought his breathing was raspy – I told her I thought he was allergic to his formula and she told it wasn’t possible (though later testing showed I was right).  By this point I wasn’t feeling very open or positive at all.

I kept trying to shift my thinking and get into a better headspace and it just wasn’t working.  The next time she asked me a question like this, I finally said, “Why do you keep asking me what I think if when I tell you, you say that it’s not relevant?”  This unleashed a long response about how she’s a medical doctor and she doesn’t know where I get my information and can’t accept what I say at face value or she would be negligent and she can’t help it if I feel threatened by her.  I repeatedly tried to clarify my point and it was frustrating because I felt she kept misunderstanding my intention, despite my efforts to be clear and respectful.

At this point the physical therapist who was in attendance for this meeting finally said to the doctor, “Can I tell you what Avivah is trying to say?”  She rephrased what I said in a way that the doctor understood my concern.  The doctor apologized and then explained why she was asking so many questions; she said she wasn’t trying to be condescending or minimize me and her intention was to make me feel included in the discussion.  I reciprocated by sharing with her why I wasn’t volunteering more information.  This opened the conversation up to a much better level, as the doctor and I were honest with one another while being respectful of the other and the environment became very synergistic.

It wasn’t easy to have the courage to try to communicate with this doctor, especially when it seemed she was repeatedly not understanding my concern, but the fruits of this effort led to some very positive results that will benefit Yirmiyahu and me.  Namely, he will receive therapy locally twice a week, with a speech therapist and occupational therapist joining his physical therapist for these meetings (one extra person at each session).  (This is something I advocated very hard for in the beginning and was repeatedly told that it was unncessary.)  The doctor also suggested that there be extra focus on developing cognition rather than just gross motor skills, which is also what my priority is.  This means that I can stop traveling to Jerusalem for supplemental therapy every two weeks, which is physically exhausting and time consuming as well as expensive.  He’ll be getting basically the equivalent of all the services he’s currently getting, but it will all be within a five minute walk from my home and with the same therapists so the continuity of care will be improved.

Since Yirmiyahu was four months, I’ve taken him almost weekly for reflexology and massage, but with my travel to Jerusalem I had to schedule this less frequently.  He was getting massage at Shalva, but now we’ll be able to resume more regular visits to our naturopath.  Financially, it works out about the same since each trip to Jerusalem is approximately equivalent to one session at his naturopath, but he has more time and services with our naturopath.  So there’s actually a gain all around for me and Yirmiyahu.

I now feel very positively toward this doctor, and I think she feels the same way toward me, that we are partners in working together to help Yirmiyahu. This is how it should be but it’s a very different feeling than we began with.  In the end, my original hope for a productive meeting happened, despite it seeming totally impossible in the middle!

Avivah

Today I took Yirmiyahu for his first physical therapy appointment in five or six weeks.  He lost a lot of muscle tone when he was so sick – he was like a newborn or even less, totally unable to support his head at all for a while.  I asked the doctors how long it would take for his muscle tone to improve, and they told me that they can’t predict when that would happen.  I reminded myself that we worked on muscle tone before and we can do it again but honestly I was discouraged at the thought of starting from scratch again.

I’m happy to say that after about a month, he’s mostly back to himself with even a couple of areas that he’s progressed in!  At today’s session the therapist wanted to assess where he’s at now.  During our session she reminded me about something she told me about a couple of months ago.  At that time, she described to me the special daycare (maon shikumi) for infants with disabilities, where they can get therapies of all types throughout the day.  It’s a full day program from around 7:30 or 8 am until 3 (I think), and it’s very close to our home.  Not only is it free, but we’ll be able to get transportation to and from the door of our home to the door of the daycare, also fully paid for.  Obviously, it’s a no brainer that any caring parent would rush to put their child in this framework.  Isn’t it?

A couple of days after Yirmiyahu was in the intensive care unit, the doctor who admitted him spoke to me and told me that his condition had been critical, and that there would have been no way to help him if we had gotten there even a few hours later.  A nurse from that unit told me that his blood work was so bad that they were all frightened when they heard his results called in from the emergency room to their unit in advance of his transfer.  To hear that his situation was so bad was very hard, really very emotional – it was then that I emotionally just turned off to handle the overload of what I was feeling.  So when ten minutes later a social worker came in and introduced herself, I knew she had come to see how I was handling everything.

To my surprise, she began by mentioning Yirmiyahu’s T21 diagnosis, and then started talking about this specialized daycare program available.  I just listened and nodded my head at appropriate intervals, but I guess my lack of response gave her the impression that I wasn’t going to put him in.  She kept telling me that I have to make decisions based on what is best for him, not my feelings, and how much better it would be for him than being at home.  She repeatedly told me to check it out before making any decisions.  I had such a sense of unreality to have her discussing this with me with Yirmiyahu lying there hooked up to oxygen, a feeding tube and monitors of all sorts.  It seemed really inappropriate that this was the topic that she felt was a priority to talk about right then.

Now that Yirmiyahu is nine months old, apparently it’s now a priority that he go into this daycare.  Today when the topic came up again and I was asked about my plans, I told the therapist that I don’t think this is the best option for him right now.  I don’t speak very openly with therapists and doctors because we have such different paradigms that it makes honest communication very challenging.  When I’m speaking English I can reframe paradigms for others, but I don’t have the nuanced Hebrew to be able to effectively do this.  And I don’t like to sound unintelligent about something that I’ve put so much thought into.  I keep things that could sound controversial or argumentative (that means most of my thoughts about anything that aren’t in lock step agreement with them) to myself.

She listened to my response, then wanted to know why?  I didn’t talk at all about the developmental benefits to a young child of being home with  loving and supportive parents.  Love and emotional security play a big part in a child’s development – even therapeutically, there are exercises that Yirmiyahu does because he loves the people doing them with him, and we do them when he’s rested and interested and stop before it’s too much.  This is really different than therapy – he’s a very good natured baby and usually only cries when he’s tired or hungry, but at every therapy session he spends at least half of the time crying.  He gets tired and wants to rest or be left alone but the clock says we need to be there longer so he has to keep having his body moved in different positions because it’s ‘good for him’.

Anyway, that’s what I didn’t  talk about, because I know how different this is from the way they see things.  The thinking here is the earlier you put your child in a framework outside of the home, the better – and for a child with ‘special’ needs, his therapeutic needs totally take precedence over anything else in his life.  It’s almost like they become their diagnosis first and foremost, rather than being a child with a diagnosis.  That’s a really big difference.  And when you’re not thinking of a child’s holistic needs, you think differently about what is best for him.

What I bascially told her was:  “At both of his evaluations, we were told that Yirmiyahu is excelling in every area of development.  So whatever we’ve done with him seems to be working well for him.  He gets plenty of stimulation at home; he’s not laying in a crib staring at the ceiling.  It doesn’t seem to me that at a daycare they can give him better results than we’ve gotten.”

I often have a strong feeling that there’s an expected script and I’m not reading my part.  My part is supposed to be to along with whatever I’m told is good for him.

I did agree to visit the daycare so that they can see that I’m a reasonable person.  I don’t want to do this because I don’t need to subject myself to more people telling me how what they can offer is so much more than me, people who assume that a parent doesn’t do anything on their own and that the experts are always better.  Doing things that other people want me to do that I don’t really see the value in is something that since moving here I’ve done much more often than I would have liked, but it seems to be part of working within the system.

Avivah