Chipperooni

Today I would like to introduce you to one of Ashley's three siblings. Chip is my birth son and he is 16 years old. He is one of the most incredible kids to ever walk the face of this earth, and yes, I know I am a little prejudiced. I have raised Chip as a single parent since his birth father (my ex) left when Chip was 4 weeks old, and that has indeed been a blessing.

Chip is super intelligent, quite attractive, and the most compassionate kid I have ever met. Perhaps that compassion comes from being raised with a sister like Ashley, or perhaps it is just inherent in his nature. He is also a major geek and has wired our house for networking, accessing the internet, music, and suprisingly complex TV 'stuff'. That's all I can explain about it and I am a computer engineer by trade. Does that tell you how much of a geek he is? In fact, the FIOS (fiber optic) TV installer came this week to upgrade our TV service, and the installer was noticeably impressed with Chip's wiring design. The boy has got to start earning us some money with this skill of his!

Chip has volunteered at our local Science Museum and as a camp counselor for one of our local rock climbing/kayaking summer camps. He also volunteers annually for the statewide deafblind family support group, performing such functions as official photographer and childcare worker. Now that he has turned 16 though, he is ready for some paying work also!

The future holds much promise for my shining star and each day I am more in awe just watching him grow and learn....

School Team - Are You Listening?

I believe that:

• Ashley CAN be effectively and appropriately taught
• Ashley CAN learn
• What she learns WILL define her future
• For Ashley to be successful, we MUST all work together for her common good
• Ashley SHOULD be respected for her uniqueness
• Ashley CAN AND WILL continue to contribute to society
• Ashley WILL rise to meet the expectations we establish for her

The Case of the Missing G-Tube

Ashley has a G-tube - a tube that has been surgically inserted into her stomach so that she can be fed through it. She got the tube inserted when she was just two years old, and was refusing to eat or drink anything. At age two, she weighed only 12 pounds. The G-tube was a blessing! Although I was extremely hesitant at first to have one inserted (because I was afraid I couldn't take care of it and her), it has made all the difference in the world for her. She is now in the 75th percentile for her height and weight (at age 11), and is overall pretty healthy. She doesn't get food through the tube anymore because after 9 years of feeding therapy at our local Children's Hospital, she has learned to eat enough to sustain her health. But she does use the tube for medications. She has to take a lot of medications and getting her to swallow all of them would be a constant battle - a battle neither she nor I need. So, the G-tube is still very much needed.

When Ashley goes to school, no one really has to deal with the G-tube. She doesn't have to take any medications through it during the school day. The only thing the school staff has to do is remain vigilant that the tube doesn't accidentally get pulled out. Since there is an inflated balloon in the stomach which keeps the tube in place, having it pulled out would not be an easy task. If Ashley were to get it caught on something or if she were to try to pull it out herself (which she has only done once many years ago), it should cause enough discomfort that any adults nearby would notice something was amiss. Which is why I don't understand what happened at school on Friday, May 19, 2006.

When Ashley arrived back at her daycare at the end of the school day, she was assisted off the school bus by her personal care assistant. The assistant drove Ashley to our home, and Ashley was immediately taken to the restroom where the assistant noticed that Ashley’s G-tube was missing.

The assistant called me and reached me on my cell phone as I was driving home from work. I advised the assistant to cover the stoma (the hole into the stomach into which the G-tube is inserted) with a clean cloth and not to feed or give Ashley anything to drink (because it could leak out of the stoma or hole).

I arrived at home, prepped a new G-tube that I had at home, and prepared to insert it into the stoma. Although the new tube had been properly prepped (meaning thoroughly lubricated), inserting it into the stoma was very difficult and caused Ashley a lot of pain. The stoma had begun to close up from the inside of her stomach, indicating that the old tube had been out for approximately 1-3 hours.

I immediately called the doctor and took her in. The doctor had to forcefully insert the new G-tube, again causing Ashley pain as well as bleeding. Ashley required over the counter pain relievers that evening as well as the remainder of the weekend.

On Monday, once school was back in session, I wrote and faxed a letter to the School district Superintendent

I also had written and sent in a note to Ashley's teacher informing her about missing G-tube and requesting an explanation. Later that morning, I received a call at my office from Ashley’s teacher saying that G-tube was present when Ashley left school. She surmised that Ashley must have pulled it out sometime after school was dismissed.

That afternoon, I received a call from theDirector of Special Education stating that the Superintendent had received my letter but was tied up in meetings all day. The Special Education Director also stated that the missing G-tube had been found on the school track. Ashley and her classmates had been walking on the school track 30 minutes prior to school dismissal.

Ashley arrived home that afternoon with a note from teacher stating that the G-tube had been found and asking if perhaps the G-tube could have been defective. The teacher also stated that two adults had been beside Ashley the entire time she was on the track and neither had seen her even touch her G-tube.

Hmmmmm...And these are the adults who are in charge of my child's safety during the school day.

You Expect Way Too Much, Mrs. N.

I said, “It’s taken six long, hard months, but I think Ashley is 99% toilet trained.”
They said “I went to school to learn how to educate children, not attend to their personal needs”.

I said “I haven’t seen Ashley progress on her sign language goals in the last three months.”
They said, “Let’s lower the bar so we can see success.”

I said “Ashley has a profound hearing loss in her right ear and a moderate to severe loss in her left ear. Sign language is her primary means of both receptive and expressive communication.”
They said “We can just talk louder.”

I said “Ashley really enjoys being in the general education classroom. She is fully included in her childcare facility, and that has been a very positive thing for both her and the other children.”
They said “Ashley will bother OUR children with the frequent strange noises she makes.”

I said “I would really like Ashley to participate in the PTA program.”
They said “OK, but she will have to be separated from the other children so she won’t distract them or detract from the program, and she will have to leave the stage after one song.”

I said “Ashley is significantly visually impaired. Her only usable vision is 20/2000 in her right eye. I think she needs orientation and mobility services so she will have fewer accidents. The nose we thought was broken, and fortunately wasn’t, and the stitches in her lip were enough for me.”
They said “She’s just clumsy, and she really uses her vision well.”

I said “I would really like Ashley to start learning more academic things. She is in the 2nd grade, and I think we have worked long enough on putting pegs into holes. Why, just this past summer, I taught her to name all 50 states, to identify 12 complex geometric shapes, to understand many fingerspelled words, and to recognize all the letters of the alphabet – both upper and lowercase.
They said “You really need to be more realistic about Ashley’s abilities, Mrs. N.”

I said “I would really like Ashley to join the 2nd grade regular ed students on their field trip.”
They said “Oh, but then she would miss her speech therapy (or occupational therapy, or vision therapy). Plus, it would be quite an undertaking to get her on the bus, make sure she gets lunch, and deal with her toileting issues.”

I said “Since we have had the same goals on Ashley’s IEP for the past three years, perhaps we need to explore different instructional techniques to help her learn”.
They said “We’re just setting the bar too high for her cognitive abilities.”

I said “Why do you let the other children bully Ashley and make fun of her?”
They said “They’re just being kids. Don’t take it too seriously.”

I said “I believe Ashley’s triennial was due six months ago.”
They said “We have been so busy but will get to it soon.”

I said “What are WE going to do to help Ashley learn and receive an appropriate education.”
They said nothing, and looked at me as if I had two heads.


If I didn’t have to homeschool Ashley ten hours a week (even though she spends six hours a day, five days a week in public school), I might have time to go on a walk through the neighborhood with all my children.

If I didn’t have to spend money on a private tutor, as well as provide 90% of the instructional materials for Ashley in her public school classroom, I might be able to take the kids to the theme park they love so much.

If I didn’t have to fight and make sure Ashley received ESY services just to keep her ‘treading water’ educationally, my family might be able to take a vacation one summer.

If I didn’t lie in bed every night and worry how I was going to ensure my daughter received an appropriate education and became a productive adult, I might have the energy to make those cookies for the PTA Bake Sale.

If my school district truly meant what they said in their “mission statement”, my daughter would be a lot closer to receiving a free and appropriate public education.

But perhaps the school officials were right – perhaps I do expect too much.

Why Didn't the Doctors Tell Me She Was Contagious?

My daughter, Ashley, is almost eight years old. She was born 14 weeks prematurely, and as a result, has been seen by many, many doctors. Her pediatrician never told me that what she had was contagious, and neither did her neurologist, her endocrinologist, her neurosurgeon, her dermatologist, her ear/nose/throat specialists or her opthamologist. But they certainly must have been wrong, and I intend to ask them why.

You see, Ashley is deafblind. She also has seizure disorder and a rare disease called juvenile xanthogranulomas. That disease has caused two brain tumors, both of which have been successfully removed. Because of her deafblindness, she uses her hands to communicate (tactile sign language). I have been teaching her American Sign Language (ASL), the standard United States sign language, so that she can communicate with anyone who knows or will learn sign language. And, use it she does!

Like most seven year olds, Ashley can have quite a sassy mouth, or should I say hands, on her. She argues with me, whines with the best of kids, and has been known to make rude comments behind my back. But, she also can be quite polite, thanking people who do nice things for her, saying ‘excuse me’ (followed by raucous laughter) when she burps, saying ‘please’ when she is making a request, and most importantly of all, telling me she loves me. The problem of her contagiousness, though, appears when she heads off to school each day.

So as to not expose non-contagious children to her contagiousness, Ashley rides a special bus to school each day. The only other children on that bus are also apparently contagious. In addition to riding the special bus, the children are also brought to school earlier and, near the end of the school day, they also board their bus about 10 minutes before the non-contagious children board theirs. This appears to be a safety precaution practiced by many schools attended by contagious children.

When Ashley arrives at school, she is kept in a room with those other children who are contagious. I guess the teacher and other adults in the room have been inoculated because they don’t seem to mind being in the room with all the contagious children. The other teachers in the school, however, must be waiting to be inoculated because they don’t seem to want Ashley in their classroom. I’m sure those teachers as well as the school principal and other administrators don’t want their non-contagious kids to catch anything from Ashley and her friends in the special classroom. Although they do occasionally invite Ashley into their classroom, she must be isolated from the non-contagious kids. The other kids appear wary of her, and even if one is brave enough to approach Ashley, the teacher and other adults will usually coax the brave child back into the non-contagious group. I must say, though, that the teachers of the non-contagious children did allow the children to make get-well cards for Ashley when she was in the hospital last year.

Ashley is also allowed to participate in some of the same school activities in which the non-contagious children participate, as long as special precautions are taken. For example, at a recent PTA program, the non-contagious first and second graders, as well as Ashley, were going to sing a medley of winter songs. As could be expected, the audience was full of parents, grandparents, siblings, and friends of the non-contagious children, all waiting anxiously to see their darlings perform. I was there with my other children and a family friend. At the appointed time, the lights dimmed, and all the children filed into the auditorium and headed to the stage. Ashley was with them, but protected from sharing her disease with the other children by the presence of an adult holding her hand. As the non-contagious children lined up on the stage, Ashley was led off to the right of the stage, approximately 4 feet away from the other children. I’m sure Ashley’s adult assistant felt that was an appropriate distance for reducing the other children’s exposure to Ashley’s contagiousness.

Ashley was allowed to sit on the stage through one song. I guess the many adults in the room felt the longer she stayed there the greater the chance that their non-contagious children might catch whatever Ashley had. At the end of the first song, Ashley’s adult assistant led her off the stage. The sea of parents videotaping their children parted, and as Ashley and her assistant walked to the back of the room, one of the parents patted Ashley’s adult assistant on the back and said ‘Good job!” I’m sure they were grateful that the assistant had the foresight to limit the contagious atmosphere.

I also thought that as Ashley’s mother, I must have some sort of built-in immunity to her contagiousness. I don’t mind being around her at all. In fact, I am never happier than when she has her arms wrapped tightly around me and is showering me with her sloppy kisses. I guess I am being naïve, though. I truly must have caught whatever she has because now the school staff as well as the school administrators don’t want to talk to me. When Ashley passed along her contagiousness to me, it must have increased its likelihood of spreading, because the special education director for the school district won’t even speak to me on the phone. I am very sorry that I unwittingly exposed them to this contagiousness.

In fact, now that I think about it, I better warn a lot more people – the people at Ashley’s afterschool program who also enjoy her hugs and kisses as much as I do; the children at the afterschool program who don’t know they should isolate themselves from Ashley and not let her play with their toys; my family and friends who have been exposed to Ashley for a long time now. They must be very, very sick. Then there are the high school volunteers who look forward to taking Ashley in the pool at the YMCA each Saturday morning, and the lady at McDonald’s who loves to greet Ashley with a huge hug and a bag of French fries, and the therapists at Children’s Hospital who push her on the giant swing until she is laughing so hard that she falls off, or my friend’s children who touch the same toys that Ashley touches and who actually sit at my dining room table and eat meals with her.

But first and foremost, I’m calling each and every one of those doctors and asking them why they didn’t warn me that Ashley was so contagious. Perhaps I could have done something sooner. Or, then again, maybe not……

My Daughter's Future? Hell no!!

Jack appeared to be finished with his lunch. The only thing in front of him on the table was crumpled paper. His blue lunch box sat a little to his left, and he was pulling the straw in and out of the Styrofoam cup which contained his soda.

Although Kevin’s lunch appeared unopened, his head lay on his right arm which was stretched across the small table at which Jack and Dorothy also sat. Dorothy, who was sitting next to Kevin, folded her lunch wrappings several times over, and then placed them into her green lunchbox with quite a ladylike flourish.

At another small table right next to Jack’s, Kevin’s and Dorothy’s, sat Rico, and two African/American women. The women were talking in a very animated fashion to each other about the problems they had both experienced earlier that day getting Jack to board to van to make the trip to the mall. Rico was quietly humming to himself, swaying almost imperceptibly from side to side.

Jack, Kevin, Dorothy and Rico all wore the badge which distinguished them as people with cognitive disabilities – a fanny pack. In addition to the fanny pack, all wore clothes with no fasteners – elastic waist pants, teeshirts, and shoes with Velcro closures. Each looked rather unkempt – their hair was at least two weeks past needing a haircut; their clothes were not pressed but rather looked almost as if they had been slept in; their white crew socks were pulled up to different lengths, and in Jack’s case, were disappearing into his cheap, generic brand tennis shoes. Dorothy wore no makeup and her clothes were not of the current fashion but rather resembled clothes one’s aging grandmother might be seen wearing. Neither Jack, Kevin, Dorothy or Rico would make eye contact with anyone that passed their tables. They would not, in fact, even make eye contact with each other. All four seemed to be in their mid to late twenties or early thirties.

The two African/American women also wore a badge of sorts – an air of authority, almost like that one would find in a parent minding children, children who at the moment seemed more annoying than charming.

Although I had seen groups of people like this many times in the local malls and restaurants, and I knew that they were group home residents – group homes which served ‘clients’ with cognitive disabilities – today this group of people grabbed my attention and refused to let go. I sat and ate my lunch at a table just behind theirs, and tried to watch them without seeming to stare. And, I wanted desperately to catch Jack’s eye and smile at him. I’m not sure why that urge was so overwhelming on this particular day, but I was disappointed when I never could do that.

When the two women in charge had determined by some signal not discernable to me that lunch was over, Jack, Kevin, Dorothy and Rico were instructed to pick up anything left in front of them and put it in their lunchboxes. All four were then instructed to get up, one at a time, and throw their soda cups into the trashcans. When Jack pushed out his chair to get up before Kevin had actually returned to his seat, he was admonished by one of the women in charge. He obediently sat back down and waited for Kevin to return to the table.

Finally, when everyone’s soda cups had been disposed of, the four clients stood and waited patiently for the two women in charge to give them the signal that it was time to take a stroll through the mall.

I walked slowly behind them, again not wanting to intrude on their group, but wanting desperately to observe a while longer. I guess I expected Jack, Kevin, Dorothy and Rico to become more animated as they strolled through the mall. I thought the window dressings and other people might grab their attention. I almost expected them to head off in several different directions, their individual interests driving their feet forward. But that was not what I saw. I saw the two women in charge leading the slow-moving group, and the four clients trudging slowly behind, not seeming the least bit interested in their surroundings. They were in almost a single file line, and at the end of the line was Jack, working desperately to pull his underwear from his behind where it had apparently gotten ‘stuck’. As much as the group seemed to want to be invisible, the eyes of anyone who passed the group stared for a moment longer than is considered polite, and then were quickly averted.

After the group had made the circular trip through the mall’s lower level, the women in charge herded the four to the exit door and their waiting van. Again, I was reminded of parents getting their children loaded into the family vehicle. Jack, Kevin, Dorothy and Rico were told to put their seatbelts on. When Jack seemed to ignore that request, one of the women in charge, reached over him and buckled the seatbelt for him. Jack immediately unhooked the seat belt, and just the slightest hint of a mischievous smile crossed his lips. The woman in charge buckled him in again, and again Jack quickly unhooked the seatbelt. At this point, the woman in charge admonished Jack and said that if he did not leave his seat belt fastened, he would not get any ice cream after dinner that night. This time, there was no hint of the smile that had previously danced across Jack’s face. He sat grim-faced looking down, and no longer tried to unhook his seatbelt.

Compliance

Compliance – no, not the legal kind – the kind that is expected of our children with disabilities. I feel that the level of compliance expected in our school systems for our children with disabilities goes well beyond what is expected of non-disabled students.

One of my children is in gifted educational programs. He is rewarded for, and actually expected to demonstrate critical thinking, creativity, and questioning that which is considered the norm. If he doesn’t fully investigate a subject, view it with a critical eye, and then develop a conclusion based on creative thinking his grades reflect that. However, if he questions traditional thought and is innovative with his conclusions, he is rewarded with a good grade. On the other hand, my child with a significant disability is not allowed to explore her classroom assignments in the same way.

My child with the most significant disabilities is expected to be compliant. Learning the rules of general society and practicing those rules at all times earns that child the best grade. If she turns the puzzle upside down because it helps her to solve it faster, she is corrected and told that the puzzle must be oriented correctly. If she questions the value of putting pegs in holes by pushing the task aside and trying to get out of her seat, she is being ‘difficult’. The daily notes that come home more often than not say she had a bad day because she wouldn’t ‘cooperate’ and follow instructions. If she complains by sitting down when she doesn’t understand the value of walking around the track four times while holding an adult’s hand, she is not ‘participating with her peers’. If she would prefer to look at the large snow globe on the library shelves and try to figure out what makes the ‘snow’ float, she is ‘not using her time wisely’. Just the other day, my daughter’s teacher complained because my child was running in the halls of the school. I understand running is not a good thing, but this was an event that should have been celebrated. Doctors always told me that my daughter would not walk. They were wrong of course, because she did finally start walking when she was five years old. So the fact that she actually RAN was a very significant event!

I am not saying that children with disabilities should not be expected to follow rules, especially in the classroom. Rules which involve the safety of my child, other children and the teaching staff must be followed. My child’s creative thinking processes and actions should not offend or in anyway bother the learning process for other children. In fact, I expect all my children to use their manners and be polite and respectful of others. But, should my youngest child take great pleasure in devising a colorful pattern of legos stuck in the honeycomb structure of the child safety gate at our patio door, I refuse to tell her that legos aren’t supposed to go into the gate. I will continue to encourage all my children to be creative, responsible people who don’t let traditional constraints stifle them.

The conundrum for me is why special education teachers and administrative staff seem to have low expectations for the academic achievements of our children with significant disabilities but have very high expectations for compliance in those same children.

Dancing in Gym Class

Ashley danced with a boy today for the first time, and that boy was not one of her brothers. Ashley is in the 6th grade in middle school, and although her school is large and has several hundred students, Ashley spends most of her day with 2 other students and three adults in a self-contained special education classroom. I'm told this is in her best interest and will enable her to learn more quickly. I'll debate that point later, but for now, I want to concentrate on the dancing.

Myles, a student from the 'regular' education class - which means he has no disabilities and can join all the other 'normal' students in their educational pursuits - was in the gym at the same time with Ashley. Myles is a very unique, special boy. Unlike many of his young teen peers, he doesn't seem saddled with the normal teenange angst of appearing different or standing out in a crowd. Myles is at his best when standing out from the crowd. Unlike my two sons who would have rather fallen deep into a hole than speak to an adult while standing with their friends, Myles will yell and wave wildly from across the gym when he sees Miss Amy, Ashley's adult companion.

On the day of dancing, Myles was dressed in his formal chorus clothes - a white shirt, black pants and a tie. That attire alone would cause most teenagers to sulk and avoid all contact with the rest of the human race, but not Myles. Myles walked over to Ashley, placed her hands in his and assumed the formal dance position. As the moved clumsily around the gym floor, both Myles and Ashley had big smiles on their faces, and for a moment, the rest of the often cruel world ceased to exist. My daughter was dancing with a boy and she was beautiful.

Ashley is 11 years old. I adopted her when she was 2 years old. She had just survived surgery for the removal of a brain tumor for the second time. Ashley's birth mother was an alcoholic who didn't provide the appropriate prenatal care. Ashley was born at 26 weeks gestation and weighed just 2 pounds. Her list of disabling conditions is great - deafblind, fetal alcohol syndrome, epilepsy, developmental delay, feeding problems, asthma, and medical fragility - yet her spirit and desire to live life to the fullest is greater. She is a beautiful person with the soul of an explorer. She continues to amaze me and all the other people whose paths she crosses. And today, she took yet another step on her journey to maximizing her life - she danced with a boy for the first time.