The Most Beautiful Word in the World

“MOM” – the most wonderful sound I have ever heard! I mentioned in an earlier post that Ashley was working very hard on learning to say some words using the Tadoma technique. Amy, her aide and best friend, has been working so hard with Ashley to teach her to say the word correctly. Amy infuses every activity that she and Ashley do with some sort of speech therapy, and it has paid off! Ashley can now say “MOM’ perfectly! Just the other night at dinner, Ashley signed “cookie please” and followed the sign with the spoken word “MOM”. Do you think I jumped right up from the table and got her that cookie – damn right I did!!

Thank you, Amy. Thank you, Ashley. I love you both!!

Deafblind Triplets on Dr. Phil Show

On, Wednesday, February 28th, Dr. Phil is featuring a family with triplets who are deafblind. My TIVO is set! Here is the info from the Dr. Phil website:

Most parents find raising a child overwhelming enough, but imagine if that child could neither see you, nor hear you. Now imagine having three children like that. Liz is the mother of the only known deafblind triplets in the world. Her three daughters are now 6 years old, but one of the girls is able to communicate at a 2-year-old level, and the other two at only 10-month-old levels. Liz's world is consumed with their 24-hour care, plus the care of her oldest daughter, who is 10 and often times overlooked among the chaos of the triplets. After years of dealing with the girls on her own, a new man stepped into Liz's life to fill the shoes of her ex-husband. George thought he could become Liz's hero, but their relationship has been strained from the start and the stress is tearing them apart. See what a day in Liz and George's lives are like, and the surprises Dr. Phil has in store for them. Plus, meet an inspirational woman who says her world turned from light to dark at the age of 15. She's got a message for George and Liz. Don't miss this heartbreaking and heroic story

The Puberty Blues

I never invited you into my daughter’s life. I knew that eventually you would show up, but I was so not looking forward to that time. I knew that turmoil would accompany your arrival, and that Ashley’s life as well as mine would be forever altered. You make her both grumpy and sad, and you cause her physical pain as well. She is confused and doesn’t know what to think about these new feelings she is having. One minute she is happy and giggling and the next she is sobbing. Sometimes she will want to hug and kiss me and tell me how much she loves me. And then other times, she acts like she doesn’t want to have anything to do with me. You make her want to eat chocolate and Cheetoes three times a day. You make her agonize over what to wear and how to act. You are the reason her face breaks out and the reason that somedays she would just like to stay in bed all day long. Because of you, the seizures she previously had controlled with medication, are now occurring on a regular basis. And, you will spend the next 40 years doing the same things over and over again.

Reluctantly I admit, there are some good things about your arrival. My baby, my little girl, is turning into a beautiful woman. All that is good and compassionate in her will grow and become even stronger. Hopefully one day, because of you, she will find the man she wants to marry, and she will give me beautiful grandchildren, miniature versions of herself.

I know you had to come, but I just wasn’t ready to admit that. Just promise me one thing – go easy on Ashley and please go easy on me.

Say 'Ahhhhhh'

For the most part, I have been very blessed to find medical professionals who do an excellent job of providing care and offering support to Ashley. I can say without a doubt that most of the doctors and other healthcare staff we see have never treated a child with Ashley’s unique combination of disabilities. They have been very open, however, to research on her disabilities and to listening to me.

None of the doctors we see, and there are quite a few, have ever told me that they have treated another child with deafblindness. They all have said they have never treated a child with juvenile xanthogranulomas, a condition that causes tumors to form – on vital organs, on the skin, under the skin, on Ashley’s eyes and ears. She has already had two brain tumors removed and her gall bladder removed due to a tumor. Even the dermatologist we see had to look up the condition in her medical reference book, a book which detailed it as an extremely rare condition and based on its description in the book, Ashley had one of the worst cases ever documented. Throw into that mix ADHD, fetal alcohol syndrome, and a few other things, and doctors find themselves treating a very unique child. And, they are doing a wonderful job! But, I have learned some lessons along the way that have made it easier for the doctors and nurses to do their jobs, easier for me to provide the daily care that Ashley needs, and most importantly, easier on Ash. I will share some of those things in the list below, but I would love to hear from others about the lessons they have learned in parenting their children with disabilities.

1. Always be honest with your child about what is going on and about what is going to happen to them. Communicate, communicate, communicate – even if you think your child isn’t understanding what you say. The tone of your voice, your calm approach, your soothing hands will all help to keep your child calm during medical visits and procedures. I always tell Ashley (with both my voice and sign language) when we are going to the doctor and why we are going to the doctor. I also will touch the parts of her body that the doctor will want to see or touch. For instance, if we are going for a visit to check on an ear infection, I will touch her ear and tell her that the doctor is going to look in it. I will tell her that nothing on that particular visit will hurt. However, if I do expect a procedure where something will hurt or be invasive, I do tell her. When it is time for shots, I say and sign that she is going to get a shot and that it is going to hurt for a minute. I tell her that before we get to the doctor’s office, and I tell her again just before the shot is administered. I tell her it is ok to say ‘Oooow’ or to cry. Never let your child be surprised.

2. Practice what might happen when visiting the doctor. For instance, when Ash was younger, she was very reluctant to let the doctor look in her mouth. She wouldn’t say ‘Ahhh’, but would in fact clamp her mouth shut. So, when we were not at the doctor’s, we would practice opening our mouths and saying ‘Ahhh’. It turned into a fun game, and the next time we visited the doctor, Ashley had no problem sharing her new skill. We have also practiced taking deep breaths – the kind of breaths doctors need a child to take when they are listening to their lungs. Again, practice at home, make a game of it, and the next doctor’s visit will be an opportunity to ‘play’ that game.

3. If your child is deaf and/or blind, make sure the doctor understands that you will need to help communicate. The doctor should talk about everything that he or she is going to do, and then as a parent you can communicate that to your child in the way you feel is most effective. The doctors we see never rush, but if you do have a ‘quickie’ doctor, insist that they slow down enough for you to communicate to your child what is going to happen. If your child is sensory defensive and doesn’t like to be touched in certain ways or by certain people, let your doctor know that up front. Instruct the doctor on the best way to approach your child. I honestly believe a good doctor will appreciate the information because it will make their job so much easier.

4. Don’t allow a doctor or nurse to talk to your child as if he or she is a baby (unless of course, they are a baby!). Nothing rankles me more than to have a doctor or nurse talk in baby talk to my twelve year old. You may have to sweetly remind the professional that your child is almost a teen and that she will understand better if spoken to in an age appropriate manner.

5. Unless you know for a fact that your doctor always stays on schedule, taking a bag or backpack of your child’s favorite toys, books and games can help pass the time and prevent an impatient meltdown.

6. If your child has to stay overnight in the hospital, make a sign to put either on the hospital room door or on the hospital bed that explains in short, concise language how best to work with your child. For instance, I put on Ashley’s sign the fact that she is deafblind and that no one should just walk up and start touching her without announcing themselves to her first. I also list things like “champion IV remover”, “escape artist”, and other descriptive things about Ashley that may not be reflected in her medical chart. Hospital staff changes constantly, and you may not always be there to explain these special situations to them.

7. Does your child often have medical problems which require an ambulance come to your home to transport her/him to the emergency room? If so, make sure you have important information like insurance info, medications, and specific medical conditions documented and within easy reach. I keep two sheets of paper that contain all that information as well as the name and phone number of every medical specialist that Ashley sees in an envelope taped to the back of my front door. When the ambulance staff or fire department staff (they are often the first responders in my area) arrive, I can hand them that envelope and they have all the information they need. I have also made a small book of sign language signs that the first responders will likely see when they are helping Ashley. If your child communicates via a method other than speech, you should consider how you are going to facilitate that communication in a stressful situation involving ambulances.

8. And finally, another tip I have learned regarding emergency room visits, if you take your child to the emergency room yourself, you may have to wait a long time to be seen. You will be sitting in the waiting room with a lot of other ill or injured people. The stress level of that combined with whatever issue brought you to the emergency room will almost guarantee a meltdown by your child. And, my experience is that emergency room staff doesn’t always care if there is a meltdown. It will NOT get you seen any sooner. However, if an ambulance brings your child to the emergency room, they are taken immediately back to the ER treatment area and not left to sit in the waiting room. Given the seriousness of your child’s issue as well as their response to the long wait in the waiting room, calling an ambulance might be something you want to consider.

I’ll stop the list here, but again, I would love to hear from other families about the tips they may have. There are many difficult times that families will face when one of their family members has special needs, and finding appropriate medical care is one of the most critical. As I said at the start, I have been very blessed to find a cadre of wonderful doctors and nurses. My final tip is, when you find someone that is wonderful, make sure to thank them over and over again!!!

Now I Lay Me Down To Sleep

Caring for a medically fragile child is one of the hardest things parents will ever face. Although keeping up with medicine schedules, feeding schedules, and all the required doctor and therapy appointments can be tough, the most difficult thing, in my opinion, is being afraid to sleep. Sleeping might mean that you miss the seizure that could stop your child from breathing. It could mean that the reflux you deal with pretty well during the day causes your child to choke on their own vomit. It could mean that your non-verbal child isn’t able to let you know that their fever is spiking to dangerous levels or that their pain has reached an unmanageable level. Sleep could mean the difference between life and death for your medically fragile child. So what do parents do?

Parents cope the best way they can. For a married couple, it might mean one sleeps while the other remains vigilant. For the single parent, it might mean sleeping in the same room with the child and hoping that exhaustion doesn’t cause you to sleep so soundly that you still might miss an important signal. It might mean keeping a video and audio monitor on your child 24 hours a day while you sleep in short bursts – naps really, not genuine restful sleep. One family I know had a special device installed on their child’s bed to alert them to seizure movement. An alarm would sound in the event of movement that was not simply rolling over in bed. Another family had a window put in the wall between their bedroom and their child’s bedroom. All these devices and techniques may help some, but I can almost guarantee that the parent(s) still do not get a restful night’s sleep - EVER.

Although Ashley’s health has improved greatly in the last few years, I still fear a sound sleep. I am still using the napping technique – never sleeping more than an hour to an hour and a half at a time. If Ashley has not woken in that time frame, I get up and check to see that she is still breathing. My body is so trained to that nap schedule that even if I am out of town without Ashley or if she is spending the night in the hospital, I still wake every hour or so. I wonder at this point, after 10 years of this nap/sleep world I have, if I will ever be able to sleep 6-8 hours straight.

Exhaustion becomes a way of life, and unfortunately health problems for the parent can follow. For some families, services may be available to have a nurse or aide sit with their child during the night. But I believe that for the majority of parents of medically fragile children, no services exist to ease their exhaustive lifestyle. So, if you know of any families like this, the best gift you could ever give them is a night or two of sleep. Ease their fears for a short while and they will be eternally grateful.

Deafblindness in the News

The Virginian Pilot newspaper, the daily newspaper for the Tidewater Virginia area, carried an article yesterday on deafblindness. The article can be found here.

The reporter did a good job writing this article - not a lot of depth of information, but at least enough to raise awareness. The conference, unfortunately, is being organized by a group of four frustrated parents, and will feature some 'experts' whose opinions are not the most well-respected in the deafblind community. I worry that teachers, administrators and other professionals who might attend will feel the anger and frustration and will leave with a negative opinion.

One of the most difficult things for very frustrated parents, in my opinion, is finding the balance between collaboration and effective advocacy. I wish there was a magic formula for that, but unfortunately there is not, and a negative result could be worsening relationships between parents and professionals. The children, I fear, will then bear the brunt of those poor relationships.

I hope things go well for these parents and for the conference and that the result will be an increased awareness of their children's needs.

Can You Feel Me Now?

Since birth, Ashley has been significantly hearing impaired. Audiologists have consistently gotten readings that indicate she has a profound loss in her right ear – that means she doesn’t hear anything at all in that ear – and a severe to profound loss in her left ear. In the left ear, she can pick up a few sounds but definitely not any of the ‘soft’ sounds like ‘S’, ‘SH’, ‘TH’, ‘CH’, etc. Because this significant loss has been present since birth, Ashley has had an extremely difficult time learning to speak. In fact, I wouldn’t really call the few sounds and words that she does utter SPEECH. But, that doesn’t in any way diminish my desire to hear her speak a few words, and that list is topped by ‘MaMa’. So, I did some research and uncovered a method of teaching a person who is deafblind to speak. That method is called TADOMA.

TADOMA, as described by Wikipedia, is a method of communication used by people who are deafblind, in which the person places his thumb on the speaker's lips and his fingers along the jawline. The middle three fingers often fall along the speaker's cheeks with the pinky finger picking up the vibrations of the speaker's throat. It is sometimes referred to as 'tactile lipreading', as the person who is deafblind feels the movement of the lips, as well as vibrations of the vocal cords,

The theory is that the person who is deafblind will be able to feel the vibrations, the positions of the lips, the air expelled, and other such physical cues, and from that might be able to learn to speak. The Tadoma method was invented by American teacher Sophie Alcorn and developed at the Perkins School for the Blind in Massachusetts. It is named after the first two children to whom it was taught: Winthrop "Tad" Chapman and Oma Simpson.

And although I have been using the Tadoma method with Ashley for several years now, we have met with very limited success. Like any skill that is being taught to a child with deafblindness, consistency and repetition is key. I use the method at home with Ashley as does her aide. We also had a speech therapist at Children’s Hospital for a couple of years who would use Tadoma. Unfortunately though, in one of the environments in which Ashley spends a huge amount of time – school – Tadoma was not embraced by the staff. I have heard many reasons for that over the years, but they all seem to come down to the fact that most of the school staff did not like having someone else’s fingers and hands on their face. Maybe one of these school years we will find a teacher or therapist who is willing to try Tadoma, but until then, I refuse to give up on using the method at home. Just in the last few months, I have heard ‘words’ that sound very, very much like ‘OMA’ (MaMa), ‘AHMEE’ (Amy – Ashley’s aide) and ‘ILUH’ (I Love You). That makes all the times I have had sticky, mac-and-cheese fingers on my face so worth it!