Why Special Needs Parents Have to be Pushy

After reading Sams functional assessment wherein he is missing half of his visual field and has very low acuity (legally blind), I am again struck by how huge this is for Sam. At the end of June 09, we were told he would receive a functional visual assessment (I still have the email) through the school and nothing--not even the recommendation that we go to UC Berkeley, happened until THE END OF HIS KINDERGARTEN YEAR. How much I wish I had insisted on the entire Access team as I requested at the middle of Sam's second year in preschool, but I was told that he did not need that. I was also told, though not on paper, that during his speech sessions, he did not exibit understanding of cause and effect and generally given the crazy mother brush off. Some of the "proof" of Sam's lack of understanding was that when the icon of choice was moved, he did not correctly choose it again. Of course he could not see to do so, so he was choosing from memory of location or color. What a huge difference this knowledge could have made to his learning in his Kindergarten year. I hope that nobody else falls through the cracks.

Part of my daily life...

Like many if not most parents of a disabled child, I subscribe to a large number of helpful groups for parents of disabled children. There are continuing discussions of what to expect, how to handle professionals, warnings of non-helpful doctors, equipment, surgeries, choice making about various treatments, etc.

Today, I was struck by a post in one of these groups regarding drooling (this was after a long thread regarding hip surgery, which a huge number of kids w/cp need to combat displasia--the hip popping out of the joint as a result of developing without weight bearing). These are what most parents of severely disabled kids deal with regularly, in case anyone wonders why we are not that involved with community events and volunteer work at school. This is what parents of special needs kids are chatting about instead of fashion, politics (although we also have to be constant activists for disability rights) or the latest major news item:

Have you had a swallow study done? This will show where the drool is coming from. Is it from her stomach or her mouth. There are also other studies that can tell exactly where in the mouth it is coming from.

Scopolamine patches seem to be the best medical way to at least reduce drooling. It is a medicine for motion sickness and one of the side effects is dry mouth. They come in patches that are usually put behind the ear. The patch can be cut if one patch dries out the mouth to much. Recommendation is one patch every three days but there have been no studies that established this. We use one patch every two days and keep the old one on so my daughter has two patches on at a time. Still doesn't work for us.

The other medication is glycopyrolate which is an anticholinergic which is taken a couple of times a day by mouth. The main side effect is dry mouth but other side effects are constipation, headache, urinary retention, and irritability.

Then you can go to Botox or surgery.

Botox is injected into the salivary glands. It is done by an ENT and requires sedation. It is suppose to reduce drooling for 3 - 6 months and then requires re-injection. We tried it and all the other salivary glands in her mouth worked overtime and she drooled just as much as ever.

Surgery can either cut off or remove the salivary glands. This is also done by an ENT. There is good reduction in drooling, but over the course of years, the glands can reconnect or re-develop, or the other glands can work overtime. We also tried several surgeries and nothing worked.

So, as one parent said, summer is coming and I am getting ready for my second job as a therapist, teacher, nurse, researcher and activist. Oh, I do this now.

From Dusk til Dawn

As part of a fundraiser for Sam's Conductive Education camp, Boost Camp, we won a trip to a local casino "resort." Actually, all they have on site are a restaurant, hotel and casino. In case you did not know, Indian casinos allow smoking. When one enters this place, one is instantly infused with cigarette smoke. The lights and sounds and people out of their bodies create this terrifying miasma of hell.

Originally we were going to bring Sam. Thank goddess we did not. We looked around (as tourists on a different planet). Checked in to a non-smoking room three floors above and to the left of the casino. Within twenty minutes in the room, we felt the constant inundation of smoke and out of body negativity and checked out.

Now I wonder, how much like this is Las Vegas? I know many people go on family vacations there. Is it like this strange vampiric experience? We had the feeling that if we stayed, we would have lost our souls or at least been possessed. whew.

Saturn, Mars and Pluto mix it up with my Sun and Ascendant

So, for those who have forgotten their astro -jargon, the Ascendant represents our persona, the face we show the world, how we step into things. The Sun is our Self. Mars, in days gone by, was called the lesser malefic. With reason. Saturn, the greater malefic. Pluto, by extrapolation is right up there in the Malefic scene, if you ask me. Here goes Mars, continuing to give me heck, making a trine (ease of action) to my Ascendant; Saturn retrograde (frustration, in Libra, retarding beauty and fairness) sextile my Ascendant and Sun; Pluto inconjuct my Sun, sextile my natal Mars. Mars can rule vision, the head and face. I have spent two weeks with the world's bitch of a facial rash and itching eyes from what--natural face cream (Libra thwarted, Venus in Pisces along with Uranus and Jupiter.) Maybe it is better not to know. If I did not know astrology, would I not feel obligated to embody it? Would it happen anyway? Impatience and crabbiness rules while I am under siege from the bloody malefics. Let this be a lesson to you astrology students: Trines CAN be worse than squares. They are quick, see. Where squares prod, trines just slip you right into your experience.

Saturn and Mars Retrograde

Ok, maybe everybody does not get severely depressed when Saturn and Mars retrogade together, in sextile. Maybe not everone feels like they are peddling fast to nowhere with no hope of moving forward. Or perhaps it is only the Leos and Libras in the bunch. After all, Jupiter and Venus are conjunct in Pisces--someone out there has to feel good. Don't get me wrong, Spring is springing gorgeously here. Sam and I have been enjoying the sun and breezes.

I just feel that we are getting nowhere. Sam is so caught up in his patterns and he is not sleeping or eating well--this always causes a panic for me. I do not want him to get a g-tube (for feeding for those of you who wonder what it is). But he needs enough food to grow. And with no sleep, plus worry and frustration, I become some sot of hell monster. On that happy note, I must run off to teach a yoga class and then meet with a fellow who wants to learn about IEPs.

Betcha Didn't Know...

No home of a kid with special needs is complete without museum putty, duct tape and industrial strength velcro. Run, don't walk, to the hardware store to get yours now. You'll be glad you did. You will need to attach things to walls, tables and trays so that your kid can reach them from his mobility device or manipulate things without knocking them down.

You can put the museum putty on handles of puzzles or on the end of a stick for picking things up (if you have furry pets, it wont last long, so buy lots). You will also need lots of that velcro, tons of batteries, various bits of foam for padding. Neoprene is fairly necessary also, for bracing and keeping hands on the trike or drumsticks. Never throw away any webbing or strapping, you will use it over and over. Maybe I will put some pics of our crazy house up so you can see what I mean.

Candlemas Eve

Tonight is one of the cross quarter days and Celtic Fire Festivals, Candlemas or Imbolc. It is particularly directed towards celebrating the triple goddess, Brigit; poetry and eloquence; and purification for fertility. Until fairly recently, I have been caught up in trying to stay sane as a parent of a severely disabled child. My spiritual life, as per Maslow's Hierarchy of Needs, has been on the back shelf (except for teaching yoga and frequent cries of "Goddess!" and "God help me!"). This year, though, I am bringing it back to the forefront. It started with a wonderful Solstice celebration with some women friends and today moves back into the realm of Toltec Wisdom and Vedic practices.

I am also thinking of the irony of the festival in terms of astrology. Brigid is the bright arrow of Celtic mythology, but Mars, the bright arrow of our sky, is in Leo, a fire sign, appropriate to the day, BUT it is retrograde. Here we have some examples:

Today, Sam's augmentative communication teacher was finally supposed to come over and install Boardmaker on my computer, so I can make his communication boards on demand. She cancelled as she is sick. She is otherwise fantastic and supportive, but these damned retrogrades (Saturn, though happy in Libra, is also retro).

Today, I am supposed to begin my new class, Embodying Ancient Wisdom, Toltec and Yogic wisdom practices. Nobody has registered, even though lots of people have said they want to come. Perhaps the timing is bad, who knows. Blast that Mars retrograde, anyway.

So much for eloquence and healing (Brigid's other sideline).

How an Eclipse Hits Us

The December 31 Lunar Eclipse (at 10 degrees Cancer) fell exactly on my son, Sam's, natal Sun. Because he was born on a full moon, the lunar eclipse also fell exactly opposite his natal moon (10 degrees Capricorn). This particular lunar eclipse was in Saros Cycle 12 North which, to quote Bernadette Brady, heralds sudden "opportunities to accept greater responsibility--often due to some sort of loss."

I am interested to see how this plays out, affecting Sam's Sun in the second house: basic self-view, strong males in his life, his personal resources, what he values. Traditionally, eclipses are associated with letting go and play out over a course of up to 6 months. One looks to where this falls in one's chart. We only feel them strongly if they hit a key point in our natal chart. Eclipses to a personal planet, especially a luminary (sun or moon) or key angle (ascendant, descendant, nadir or midheaven) have a tremendously transformational effect.

For Sam, I hope simply be growing up, letting go of baby things and maturing emotionally. Perhaps to use this energy to its best effect, we must ask him to amature, to be more independent, despite the fact that he almost cannot use his hands and can barely speak. If forced to it, he may become more able to play alone and find his own strength. That's my hope.

This eclipse could refer to any other number of more intense changes or loss--although cutting off some of Sam's comfort and ease is no walk in the park. This eclipse fell in my eight house--(shared resources, sex, death) and made aspects to my natal 4th house Saturn and 9th Venus. But not super-tight aspects. Well, ok, 2 to 3 degrees, but not exact. And it hits my husband's natal moon, aspects his natal Venus.

Hey, I am not nervous. Nope, not worrying about potential loss in my child's, my husband's and my life causing us to take on more responsibilities in these areas. Oh, I am so relaxed. yup.