1st. Day Of Kindergarten

Five years ago when I was asked what our plans and expectations were for Timmy when he starts school? At the time I couldn't answer this question. To me, that day was so far into the future I couldn't get my brain to even go there. The first 3 years of Timmy's life he was very sickly and didn't show much improvement developmentally. Thinking about, let alone making plans for Timmy's education wasn't at the top of our priority list.. These past 2 years we have been very blessed. Timmy has been very healthy and has shown tremendous gains developmentally, physically, mentally and cognitively. Now that Timmy has reached this wonderful milestone in his life, I can now answer that question posed so many years ago.

We want the same thing for Timmy that any parent wants for their special needs or typical child. We want Timmy to be able to attend a school in which the school has been adapted and equipped to handle a child with multiple disabilities. We want Timmy to have the opportunity to socialize with other special needs child as well as typical children of his age. We want a school where the staff, principal, teachers, and therapist are understanding, caring and supportive. We want a school in which Timmy's teacher is "willing" to adapt her teaching techniques and strategies to best help Timmy to learn. And a teacher who is willing to listen to, work along with and learn from us, Timmy's parents.

I feel that we have found all of this plus more in Timmy's school this year. Mrs. Vanessa is TERRIFIC!!!! She took a few days out of her summer vacation to attend a Deaf-Blind Conference, so that she could speak with professionals and other parents of Deaf-Blind children. She is reading anything and everything she can get her hands on, so that she can better teach Timmy. She is even considering furthering her education, so that she can gain a better understanding of Deaf-Blindness and ways to teach.

I LOVE Mrs. Vanessa's teaching style. She takes each child individually each day and works with them one-on-one. As a group each child has their own hands-on object to hold and explore as she tells the group about the object or the subject that the object pertains to.

Last year when Timmy attended Pre-K, he came home everyday exhausted. And his 2 favorite words that he used consistantly we MaMa Home. Today, Timmy surprised everyone, by showing us that he is capable of so much when placed into the correct enviroment. He IS the class clown and moderator. Timmy is able to make the unhappiest classmate smile and calm down the loudest with just a giggle. He is liked and loved by all.

I Think We Are Gonna Like It Here....!!!!

First Trip To The Beach

Here are a few pictures of Timmy's 1st. trip to the beach. He LOVED the sounds and the water. But HATED the sand, sea shells and the fact that his diaper got well. LOL.

The fact that Timmy no longer has a trach still hasn't sunk in yet for me. It took me hours after returning home to realize exactly what we had just done. Not just taking Timmy to the beach, but taking Timmy to the beach and only having to bring his jogging stroller, a beach towel and sun screen! Before a trip to the beach wasn't possible, because of the possibility of sand blowing into Timmy's trach or if we were to put him into the water, the possibility of water getting into the trach. I just feel so guilty that we live so close to the beach and Timmy wasn't able to go to enjoy himself. BUT now, WOW we REALLY can go to fun places with Timmy and he also be able to participate!

Before when we would travel anywhere with Timmy we would have to lug along 30 pounds of supplies. (Well, all of the needed things seemed to me to weigh that much!) Now a medium size school backpack can hold all of the needed supplies that we will need, like a change of clothes, diapers, wipes, a can of formula, extension tubing and syringe. Probably 10 pounds if that in weight to have to carry around now. WooHooo!

We have a "NEW" Normal and a "NEW" Timmy, LOOK OUT WORLD HERE WE COME!!!!!!!

Our "NEW" Normal

This message is filled with EXCITMENT as well as sadness....

Look closely at this picture of Timmy.

Do you see anything different in this picture compared to other pictures of him?????

I have waited 5 1/2 looong years to be able to tell the whole world this EXCITING news. It is unfortunate that the Doctors and the other very important people in Timmy's and our lives, that have helped us to reach this point could not be around to see us through to the end. I would like to take a moment to Thank all of those "very special" doctors and individualsstanding by our side and helping us to get to this WONDERFUL point in our lives.

A Special Thank You to my Perinatologist, Dr. Hage and Dr. Wright. Even though from a medical stand point, Timmy's survival was very slim, for them both keeping the Faith and Hope to see us through to my delivery. And for working as a team with my OB/GYN to make sure that I had the best possible care throughout my pregnancy.

A VERY SPECIAL Thank You to Dr. Tawakol. This was Timmy's Neonatologist in the NICU, following Timmy's birth and for the first 4 1/2 months of Timmy's life that he was in the hospital. Thank you fo rbeing there for Timmy and us. For being our rock and support through the good times and the bad. Thank you for believing that Miracles CAN and DO happen. And for believing that Timmy has potential to do or be whatever life has to offer him, despite his complex medical issues.

Thank You to Dr. Hulka. This is the ENT (Ear, Nose, Throat) who placed Timmy's trach. This Doc stepped forward to help when no other Doctors would, to give Timmy a fair chance at life off of a ventilator. I can remember the conversation we had with Dr. Hulka following the trach placement surgery. What Dr. Hulka said brought tears to my eyes and was a true testiment of just how caring he is to his patients. When Dr. Hulka came out to speak with us following the surgery, he sat down in front of us and said "I have read your son's medical history. And his complex medical issues DO NOT bother me. I'm here to help your son in any way possible." Dr. Hulka has a TRUE Heart of Gold! Unfortunately, being Dr. Hulka had went out to start his own Practice, he no longer had access to a large medical hospials in which to care for his more medically complex patients like Timmy. So to get Timmy to where we are today, we had to seek another ENT surgeon.

Thank You to Dr. Kravitz (Pulmonologist) who over saw Timmy's care while he was being seen by Dr. Hulka. And who cared for Timmy during both of his extended hospital stays, due to pneumonia. Being that Timmy's "new" ENT is at a different hospital, we had to take on a different Pulmonologist to oversee Timmy's care.

Thank You to Dr. Ali Chalikoglu (Endocrinologist) for his care, support and management of Timmy's diabetes and other endocrine issues. Where the majority of Endocrinologist we have come in contact with throughout the past 5 1/2 years, Dr. Ali has learned to listen to us (Timmy's parents) in order to manage his diabetes and other endocrine issues successfully. Dr. Ali doesn't try to play the role of "Endocrinologist" Hero!

A BIG Thank You to Dr. Jane (Endocrinologist) for stepping forward and overseeing Timmy's care while Dr. Ali was out of country. And for your support. Your being there for Timmy and us really meant alot!

Thank You to Dr. Muge Chalikoglu (Genetist), for caring, help and support in finding the answers to the cause of Timmy's medical issues. And for being a support partner for your hubby as Timmy's Endocrinologist, so that Timmy's diabetes and other Endocrine issues are better managed.

Thank You to all of the special Home Health Care Nurses who have helped take care of Timmy. But a VERY Special Thank You to Merry, Dottie, Julie, Wendy and Deborah Kelly. Mrs. Kelly cared for Timmy from the day he was released from the hospital and for the first 2 1/2 years. Aunt Julie was also one of the nurses who cared for Timmy while he was in the NICU. She was our rock and support then and still is. Thank You to ALL for your help, care and support. ALL of you are like part of our extended family!

Thank You to Timmy's Physical Therapist, Kathleen. You have brought Timmy further than any of his other therapists. You have listened to us as Timmy's parents as to what we find works best for Timmy and applied that to your therapy techniques and strategies. You have taken the time to learn Timmy's "communication cues" and from this you have been able to develop a good one-on-one relationship with Timmy. You know what makes Timmy "tick," when to push him harder and when to take a slower pace. We hope to keep you as a therapist, so that you will be the one to one day possibly see Timmy take those first steps independantly.

Thank You to Timmy's Pediatricians. It is nice to have Doctors, who realize that the parents know their child better than any Doctors do, are willing to listen to the parents and are capible of putting aside what they learned from a textbook and go out on their own to find the "right" answers to a medical issue. Thank You for caring, your support and providing Timmy with the best possible medical care.

Thank You to Family and Friends for your support and warm thoughts and Prayers. They were greatly appreciated.

Thank You to Timmy's ENT (Dr. Zdanski) and Pulmonologist (Dr. Pittman) for agreeing to accept Timmy as a patient. For your time and medical expertise, which helped us to make it to this wonderful point in our lives. We look forward to many more visits with you both.

Now it is time to have a virtual PARTY! The streamers and balloons are hanging (colors may vary). There is a slice of cake (your favorite kind) for everyone and some ice cream (your favorite flavor). No PARTY would be complete without a Party horn. So here everyone take one. Now on the count of three everyone blow your Party horn. 1.....TIMMY HAS.....2.....HIS TRACH.....3.....OUT.....!!!!! Ok I'll repeat that for those who feel they may have heard it incorrectly......TIMMY HAS HIS TRACH OUT!!!!! Now wipe away those tears and try reading it one more time, just to convince yourself that you DID indeed read it correctly.....TIMMY HAS HIS TRACH OUT!!!!!!!!!

On Tuesday, July 21st was suppose to be Timmy's 1st day of Kindergarten. But instead Timmy was admitted to the PICU at UNC hospital. We arrived at UNC at 1:30PM. This admittance was scheduled by Timmy's ENT (Dr. Zdanski) and his Pulmonologist (Dr. Pittman). After our heart breaking let down last month, when Timmy fail his decannulation, we "FINALLY" were able to convince the airway team (ENT, Pulmonologist, trach care team) to "try' removing Timmy's trach while he was fully awake and not under the influence of general anesthesia. After being admitted to the hospital and hooked up to all kinds of monitors, at 3:30PM Timmy removed his own trach. Timmy spent 3 days in the hospital for observation. It has now been 5 days since Timmy removed his trach under the watchful supervision of the Doctors at UNC. He is doing WONDERFULLY!!!!!!!!! Timmy's oxygen saturation levels are actually better without the trach than they were with the trach! When Timmy breathes, especially at night when he is asleep, I can hear what sounds like obstructive breathing. I'm not a doctor, so I will only be guessing, but it sounds more to me like a tongue obstruction rather than an airway obstruction. It very could well be a combination of both an airway and tongue obstruction. It isn't bad enough in my opinion for the doctor to have to replace Timmy's trach. Timmy is able to keep his oxygen saturation levels up and his heartrate isn't elevated, which would show extreme stress. As long as Timmy is sleeping on his side he doesn't have the loud breathing and seems to sleep more peacefully. The trach stoma has almost completely closed. We are placing a large BAND-AID over the stoma to keep out any debris, until it completely closes.

Timmy has a follow up appointment on Wednesday, July 29th. At which time we will discuss with Dr. Zdanski (ENT) his opinions of trying the use of C-PAP or BI-PAP to help Timmy at night. I'll ekkp everyone updated on our upcoming appointment.

Being that Timmy has only had his trach removed for 5 days now, there is still a slight chance that he could need to have the trach replaced. If this should happen within the next few days, weeks, months to come, we would accept it knowing that it was in Timmy's best interest medically. We would go on with our lives like before the trach was removed, caring for Timmy, loving Timmy unconditionally. We would also know that we have proven our point to the Doctors, that we know Timmy better than any Doctor does. And Timmy would have proven to the Doctors that HE could one day possibly have his trach removed once again, because he did so well this time, when removed under the proper circumstances.

WE ARE SOOOO VERY PROUD OF YOU TIMMY!!!!!!!!! (((Hugs))) and XXX for a job well done!!!!!

"LolliPop" Helps Reveal Shapes To The Blind

Isn't Today's Technology AMAZING!?!

"LolliPop" Helps Reveal Shapes To The Blind

By Ibby Caputo

Washington Post Staff Writer

Tuesday, July 21, 2009

With a device that sends signals to his tongue, Mike Jernigan can discern shapes even though he has lost both of his eyes. (By Gene J. Puskar --

After Marine Cpl. Mike Jernigan was blinded by a roadside bomb in Iraq, he said, not much was done for him.

"I returned back from Iraq and [Veterans Affairs] gave me a stick. A stick and a tap on the butt and they said, 'Go ahead.' "

Five years later and thanks to the ambitions of a handful of people, Jernigan has more than a walking cane. He has been given a special "lollipop," a device that uses his tongue to stimulate his visual cortex and send sensory information to his brain.

Also called the intra-oral device, or IOD, the lollipop is an inch-square grid with 625 small round metal pieces. It is connected by a wire to a small camera mounted on a pair of sunglasses and to a hand-held controller about the size of a BlackBerry. The camera sends an image to the lollipop, which transmits a low-voltage pulse to Jernigan's tongue. With training, Jernigan has learned to translate that pulse into pictures. He can now identify the shapes of what is in front of him, even though both of his eyes have been removed.

"It's kind of like Braille that you use with your fingers," said Amy Nau, an optometrist who is researching the effectiveness of the device at the University of Pittsburgh. "Instead of symbols, it's a picture, and instead of your fingertips, it's your tongue."

The machine is called the BrainPort vision device and is manufactured by Wicab, a biomedical engineering company based in Middleton, Wis. It relies on sensory substitution, the process in which if one sense is damaged, the part of the brain that would normally control that sense can learn to perform another function. In Jernigan's case, the visual cortex is recruited to take on tactile recognition.

"Touch takes over for vision in this case," said Maurice Ptito, a professor of visual science at the University of Montreal's School of Optometry, who has scanned the brains of blind people using the machine. "We notice that they activate the visual cortex, which is the part of the brain that a seeing person would use."

Bob Beckman, the president and chief executive of Wicab, said the BrainPort might be on the market by the end of the year, priced at about $10,000.

Jernigan, 30, who lives with his wife and stepson in McLean, received his BrainPort from Wicab for free as one of more than 100 blind people who have tested the instrument. He communicates with researchers about its benefits and limitations.

"It is designed for stationary tasks," he said. If the camera were to transmit images of a moving scene, there would be "too much information to process at once."

Still, Jernigan uses the BrainPort for everything he can. "When your sink gets clogged up, you got pieces laying down on the floor," he said. "It helps you find your pieces."

Jernigan recently demonstrated the device at the University of Pittsburgh Medical Center. He sat with the lollipop in his mouth wearing camera-equipped Oakley sunglasses as Gale Pollock, the center's executive director, stuck simple white felt shapes on a black felt screen. After she placed each shape in front of him, she asked, "Mike, what do you see?" After a few seconds, Jernigan answered correctly each time. "Horizontal line," he said. "Circle." "Diagonal line pointing that way," showing the line's direction with his arm.

"This device does not give you your sight," Jernigan said. "There is not that picture in your head."

"When you were a child, did anyone ever draw a picture on your back?" Beckman asked during a phone interview. He said receiving information via the BrainPort is similar to perceiving a shape sketched on your skin by a person's finger.

"It's a first step," said Pollock, a retired Army general. "It's very elementary, but for so many generations the visually impaired and blind have been told, 'I'm sorry, there is nothing that we can do.' "

Nau said the "vision" produced is very rudimentary. "Blocks, shapes -- it's black and white," she said. "There is no stereo vision," or depth perception.
Beckman said the company's mission is not to re-create vision but to provide information. "I think we are in the infancy of this technology," he said.

Paul Bach-y-Rita, the late founder of Wicab, discovered in the late 1990s that the tongue was the ideal place to provide information through tactile stimulation, Beckman said. "There is a high level of nerve endings in the tongue, similar to a finger," he said. "And the tongue is constantly moist, so there is constant electric conductivity."

Beckman said a finger would require 10 times more electric stimulation than the tongue does to produce the same results in the visual cortex.

There are no known risks associated with the BrainPort, according to Nau, though some patients have reported a tingling sensation on their tongues after using the device.

Jernigan said the electric stimulation on his tongue is mild. "You ever stick a nine-volt battery on your tongue?" Jernigan asked during a phone interview. "It feels like that, but less. It's not as intense as that."

Jernigan said he uses the controller to tweak the strength of the stimulation. "You can make it more powerful if you'd like," he said.

Jernigan, who is studying government affairs at Georgetown University but will be moving to St. Petersburg next month to attend the University of South Florida, said the BrainPort allows him a better life.

"For five years I have stared at a blank, black screen," he said. "People are thinking outside of the box, and by doing so, it allows someone like me to have the hope of the possibility that I might see again."

No Pity Rarty Please

I have been putting off writing a post in response to some comments that we have received over the past 5 years, when strangers first meet Timmy. There was an incident that happened yesterday that has driven me to go ahead and write.

Family members whom I have not seen in over 20 years, saw Timmy for the first time yesterday. Their first response to him was "Oh poor Timmy! He's so pitiful! I just want to cry..." What's "poor" or "pitiful" about him? Does he really strike you as a child that you should feel sorry for? Do you think that he should be "pitied" because he is different? Because he can't function physically and mentally like others? Before coming to the conclusion that my son deserves to have your sympathy, I ask that you get to know him. Then let me ask YOU, Do you see a “poor” or "pitiful" child when you look at Timmy?

When I look at Timmy, I see NOTHING "poor" or "pitiful" about him. I see a child who is HAPPY all the time. I see a little boy who knows that he is the center of his parent's world. I see a child who plays, laughs, loves and cries. I see a child who has distinct likes and dislikes. I see a little boy who likes to play with other children. I see a little boy who likes to play rough, like other children his age. I see a child who is eager and willing to try new experiences. I see a little boy who loves to be the center of attention when in a group. I see a child who is able to express his needs and wants, without uttering a single word.

Just because Timmy can't stand alone, can't walk independantly, can't talk, can't see and can't hear the world around him. Does this alone mean that he is less of a Human Being, who deserves to be pitied??? Because far above and beyond, he is a HUMAN BEING. A person who has feelings, feelings of joy and sadness, anxiety and pain, fear and love for others. And a "real" living person who needs understanding, love, and the opportunity to interact with other people.

Dispite Timmy's differences and limitations, he is what any parent "wants" in a child, for their child to be happy and healthy. Timmy is happy, he is healthy. Timmy likes to play with toys. Some of his toys may have to be adapted or more developmentally age approperate, but still Timmy CAN and DOES play with toys. There are times like any other child, Timmy will get sick. But we don't treat his illnesses any differently than any other parent would treat their child's illnesses. We take Timmy to the doctor. We give Timmy mediations to help make him feel better. And we nurture him through his illness until he is better.

Please don't pitty my son. Please don't assume that any child or an adult who has special needs deserves to be pitied. Open your eyes. Open your heart. Look at the individual for whom they "really" are. You will soon discover that with every breath they take they are saying to you; It is ok to be different. It is ok that I have limitations. I am happy! I am ME!

What else in life are we "really" seeking for our children and for ourselves? Happiness. The reason we do the things that we do in our lives is, because they make us happy. That is why we take walks along the beach at sunset. That is why we play tag with our children. That is why we eat chocolate or drink coffee. That is why we go for a swim or get a nice massage. WHY??? Because all of these things make us happy.

Now tell me does this look like a "poor" or "pitiful" child???

A Road To Hope For All Diabetics

God Doesn't Make Mistakes

These 2 videos speak for themselves.

Happy Birthday Emily!

A Birthday Party Fit For A Princess

What Makes Emily OUR Princess????

E= Eager to Learn new things.
M= Mild Tempered, Presevering, Patient
I= Inquisitive, Imaginative, Sneaky,
L= Loving, Caring, Gentle,
Y= Youthful, Has a sixth sense to know when her "special needs" brother is getting sick, before he exhibits any symptoms.

G= Good Natured, Easily pleased, Friendly, Good Hearted
A= Artistic, Athletic, A Drama Queen
E= Energetic, empathetic,
T= Tomboy, Lionhearted, Smart
H= Helpful, Happy, Good Humored

Some of Emily's Likes....

Emily likes looking at books, Listening & Dancing to music, painting/drawing, playing with Play-Doh, Pretending to be a Ballerina, Digging in the sand, Swimming.

Favorite Cartoons...
Mickey Mouse, Dora, Barney & Thomas & Friends. Favorite Tv. channel is "Noggin"

Her Favorite Animals...
Horses & Cats

Favorite Foods....
Hot dogs, Hash Brown Potatoes, Potato Chips, Meat Loaf, Strawberries, Gravy, Crabs.

Dislikes....
Bread, Corn, Chicken Nuggets, Peas, Cole Slaw. (Not too much that she won't eat.)

Favorite Colors.....
Purple, Pink, Yellow\

My Thoughts....
Emily is a very loving, caring, kind, considerate, little girl. Who Cherishes her "special needs" brother Timmy. Loves to "try" to help care for Timmy's needs by helping to feed him, play silly games with him or push him while he is on the swing, help take his blood glucose, listen to his lungs and YES, she even shows interest in "trying" to change his diapers! She is quick to let someone know when Timmy has an "accident" in his pants and needs to be changed. Off she goes to get diapers and wipes to change him. I just hope that as the years pass, Emily remains as loving, caring and close to her brother as she is now......

Even though the 2 girls who were invited to the birthday party didn't show up, Emily had a GREAT time. The 2 boys (brothers) Conrad and Owen are in Emily's Sunday School Class. They ALL had a FANTASTIC time eating, playing games and of course swimming!

A BIG Thank You to everyone who attended the birthday party!!! Thank you also for the birthday cards and gifts! Enjoy the pictures....

Playing with the Big Boys!

We try to expose Timmy to many different experiences that he may othewise never have the opportunity to experience in his lifetime. Why shouldn't we? Just because Timmy is a special needs child with many complex medical issues doesn't mean that he shouldn't be exposed to and have the same opportunities as other "healthy" children of his same age. What does he gain and learn from these experiences, being he has so many complex medical issues? Timmy's hands are is eyes and ears. By allowing him to have "hands on" experiences, he is more able to understand our description of the things/objects in the world in which he can't see or may have trouble hearing. He is learning not to be afraid of unfamiliar movements, sounds, and smells. He is learning that things in his world have a purpose and can help us all with daily tasks/jobs. He is learning through the different movements (ex. vibration), sound, smell (deisel), and touch (pull of a lever, turn of a knob) how things/objects function. "Typical" children learn in the same way, except they are able to use visual and audiotory stimuli and with "hands on" exploration, they are able to obtain a wealth of information about objects and how the function.

Today, dad decided that it would be a good experience for Timmy to be able to sit on a backhoe while it was running, just to experience the vibration, sounds and smell from the equipment. And to be able to explore the levers and how they are used to operate the backhoe. And of Course, being the boy that Timmy is, he LOVED it! When Dad first cranked up the backhoe, Timmy got very excited! He started saying Wow, Wow and had was full of grins and giggles.

Our camera/camcorder isn't working properly, so unfortunately all I had to take pictures with was my cell phone. The pictures aren't that great. But I was able to capture memories that otherwise may have gone unrecorded.

Adapted Trike

Timmy received a trike as a gift this past Christmas. After 6 months of trying to find a safe way to adapt the trike so that Timmy could ride the trike, we have finally come up with a safe and inexpensive adaptation for the trike. Papa spent the weekend helping to adapt the trike for Timmy.

What we did was to remove the trike's original seat and replace it with an infant/toddler swing. The infant/toddler swing has a 3 point harness, which will help to secure Timmy into the seat and onto the trike safely. Papa had to drill holes in the swing, so that it could be bolted to the trike frame. We screwed velcros to the pedals. The velcros will help to hold Timmy's feet to pedals. For less than a $100, including the price of the trike, Timmy now has a trike in which he can enjoy riding.

It is ashame that companies are allowed to charge such astronomical prices for an adapted "special needs" trike/bike, when parents are able to adapt the trike/bike so cheaply. What is up with the 100% mark up in price, just because the term "special needs" is included in the items name????

A Bill of Rights for Parents of Children with Special Needs

A Bill of Rights for Parents of Children with Special Needs
By Ellen S.
To visit Ellen's blog go to www.lovethatmax.blogspot.com

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

For a printable copy, e-mail LoveThatMax@gmail.com.