An Open Letter to the Parents Who Glared at Our Family Taking a Second Ride at Disneyland

                Hi, we are the family with the cute son wearing a neckerchief, that you watched go by twice at Ariel’s Undersea Adventure and Splash Mountain.  I watched you escort your darling little girl off the ride. She seemed to be somewhere between three and five and very good natured. She heard the attendant tell us we could stay on the ride and naturally, thought he was speaking to her, so she scurried to get back in the car.

I am sorry if it made it difficult that my child got to ride twice and yours did not. If my son could speak to ask me why others can do the things he cannot (not that I have a good answer), I would be thrilled. But he cannot speak. Nor can he walk by himself, feed himself or use his hands for manipulating things like a pencil or spoon.  He does not play with toys, because he can’t use his hands well enough to make it anything but a tremendously frustrating experience. He is liked by his peers and by adults, but since he cannot talk with them, or play the same way, he doesn’t have real buddies. He is eleven and cannot always predict/control his toileting needs, so I still change his diapers. In public restrooms, I usually have to put him on the floor to do that. Also, since he has cortical visual impairment, he has moving holes in his vision. There is no knowing when or how he sees something in its entirety.

 Sam comprehends what is said to and around him, and will answer yes/no or multiple choice questions. (That is not the same as saying what one thinks or generating questions.) He communicates with body language and two or three signs.  For somebody who cannot move himself without assistance, he is very active and fun loving.  I would pay everything I have to watch him scurry to climb into a ride or even ask me about it.

This is the magic of Disneyland for him and for us:  During most of those hours in the park, he makes up for all of the tree climbing, bike riding, scootering, skateboarding, walking, running, touching, playing pretend and holding things that does not happen during the rest of his daily life. Believe me; he would like to do every one of those things. He is quite self-conscious that he is different. He is shy about using his voice generating software in front of strangers. He gets embarrassed when people ask about his g-tube feeding, as some do when they see us in restaurants.

At Disneyland, he gets to forget his differences and inabilities. At Disneyland, everyone is riding and shouting and laughing like him.  Besides being thrown all around at outrageous speeds and getting splashed and seeing/hearing creatures talk, he connects with the characters in ways that make up for not playing pretend with others. He laughs like crazy and communicates his joy in motion the best he can. So yes, we ask to ride more than once on most attractions and sometimes we get to. Yes, we try to call the characters’ attention to him to shake hands and be on his best visual side.

We deeply appreciate that there is a place where this magic is possible for him. We try to let him absorb as much of it as possible for those three days every couple of years. If you want to trade that speedy line time and the extra rides at Disneyland for your child’s ability to run up and hug you, or ask you questions, there is not a parent of a disabled child who would not do it in a heartbeat. 

Spring Vacation

Sam is 8+years old now. I cannot imagine what It is like to have a child whom you could sit down at a table with his meal and expect that child to be able to feed himself. I cannot imagine how it is to have a two way conversation with my son or to send him into the other room to get something or to go to the bathroom. Absolutely everything Sam does requires assistance from another person. There are moments--sometimes up to 5 or 10 minutes where he is in his stander playing with his fans and switches while he listens to music. These come after we have physically set him up in the stander, of course, a process of several minutes.

Sam is improved this year, after many blessed interventions and alternative therapies. Even though I am deeply grateful for the help we have received to get these therapies and improvements in his schooling, this year has seen me grieving over my son's condition more than ever. Perhaps it is that we have several close friends who have first children much younger than Sam. These children are able to engage with their world so much more at 9 months or two years than he can at nearly 9. Perhaps it is that my husband and I are teaching Kung fu and yoga at a charter elementary with kids Sam's age. Not only do we get to experience where he could be if he had not lost circulation to his brain before he was born, we see many "perfect" kids whose parents ignore them or are too drunk or high to to have the conversations with them that I would like to have with my son. Whatever the reason, this year has been full of hard work and deep grieving for me.

As for Sam, he is severely frustrated. He wants to be quite physically active. He wants to do kids yoga videos with us. He wants to crawl and he wants to swim. Both of these take a lot of physical assistance from us (to the detriment of our backs and knees). He wants to bike, to run down the street, to engage in numerous activities that we can't understand or predict or figure out from his vocalizations and gestures. If we don't get it, he yells, cries or even bites. When I read posts from other parents of kids with special needs, biological or adoptive, who speak of "our little angel," I can only imagine that their children are either more independent, less frustrated or more passive. Don't get me wrong, I deeply love my boy. I enjoy taking him swimming and so forth. He can be quite the charmer (especially with others who seem to think he is always happy....mysterious, that). My body hurts and my mind is weeping. It is a long spring vacation. It is only Tuesday.

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.