My photo
I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Thursday, February 10, 2011

Another Inchstone Reached

Yet another sign that my little guy is growing into a big boy!

By the time Timmy had reached 14 months old, he still hadn't gotten his 1st tooth. We were very concerned and asked his Pediatrician if this was normal, being that Timmy has a hormone deficiency. We were told to address our concerns with Timmy's Endocrinologist.

Timmy's Endocrinologist assured us that Timmy would get his teeth. He stated that one of his boys didn't get their 1st. tooth until he was almost 18 months old.

Within a few days following Timmy's Endocrinologist visit, WHAM, Timmy had his 1st tooth. Three months passed, no more teeth, but time once again for an Endocrinology visit.

Dr. Ali asked if Timmy had any teeth yet. We all were happy to show him that Timmy did indeed have 1 lonely tooth. The others will come he stated. Again within a few following the Endocrinology visit, SURPRISE, Timmy had his 2nd tooth. I swear that Dr. Ali must have placed Timmy's teeth. Once the 2nd tooth was fully in all the rest of Timmy's teeth started coming in like popcorn.

Unfortunately Timmy now has more teeth than his small mouth can hold. So in the near future Timmy will possibly have to have dental surgery to surgically remove some of his teeth to allow room for his permanant teeth as they come in.

Myself and Timmy's Home Health Nurses wiggled and wiggled this tooth for almost 2 months trying to get it out. Each time we would try Timmy would cry. This would break our hearts knowing that we had possibly caused him to be in pain.

Timmy's Teacher in now not only Timmy's Teacher, but also his Dentist. After us trying for what seemed like FOREVER to pull the tooth and Timmy crying each time., Mrs. Bishop asked Timmy to let her try. Timmy giggled and smiled (His way of communicating YES/Okay.) Mrs. Bishop tries twice and out pops the tooth. Timmy DID NOT cry once! Goes to show what a wonderful trusting relationship Timmy has with his school teacher.

Timmy had a Special late night visitor, who bought his very 1st. pulled tooth from him for a grand total of $7.00!

Poor Emily now wants all of her teeth to be loose so that she can pull them all and get some money. She has also request to speak with the Tooth Fairy so that she can inform her just how much she expects for all of her teeth.

Oh forgot to mention, Emily feels that her teeth are worth $20.00 a tooth. Yikes! She doesn't need a Tooth Fairy, she needs Bill Gates!

Tuesday, February 8, 2011

Feeding Tube Awareness

                                             
 February 6-12, is Feeding Tube Awareness Week.

http://www.feedingtubeawareness.com/

This website was created by parents for parents, other family members, friends and strangers, to educate and to bring awareness. The website has good information, resources, family stories and practical tips and other general information of interest. Check it out.

                                                         

There are a lot of misconceptions about feedding tubes. I would like to take the time to share our experience.

Timmy has had his feeding tube for 4 years. His tube was placed after his 2nd hospitalization with pneumonia. The doctors suspected that the pneumonia was due to Timmy aspirating. A swallow study showed no aspiration. We opted to go ahead with the feeding tube placement. We felt that it would be beneficial in the treatment of Timmy's diabetes and to administer medications.

The decision to have the feeding tube placed wasn't an easy one for us. At the time, we were so overwhelmed with the day to day care of Timmy's other complex medical needs. We felt that by having the feeding tube, we would only be adding more stress to our lives. In the end the pros outweighed the cons.

At first, we too had a lot of misconceptions. After speaking with Timmy's Gastro-Intestinal Doctor and other families who have children who have a feeding tube our fears and misconceptions we put to ease.

*We like to do a lot of travelling. We thought that by Timmy having a feeding tube we would be restricted as to where or how far we could go from home. Actually by Timmy having a feeding tube, we have opened up more travel possibilities. And travelling with Timmy is a lot easier. We don't have to worry about trying to find a resturant which has soft foods of the consistancy that Timmy can eat. We can give Timmy formula via his feeding tube over a 15-20 minutes and off we go. He has been feed. No worries.

*We had heard that "most" children who have feeding tubes, their feeding tube stomas stay infected all of the ime. In our case this isn't true. Over the past 4 years, Timmy's feeding tube stoma has never been infected. As long as the stoma is kept clean and dry, this cuts way down on the risk of an infection. We also apply a protective barrier cream (Nystatin or Bactroban) twice daily, which has helped.

*Some people are under the impression that those with feeding tubes can not eat orally. In our case, Timmy can and does eat and drink orally. Timmy's feeding tube was primarily placed to administer daily medications, to help us better manage Timmy's diabetes and to help keep him hydrated when he is sick and refuses to eat/drink. There are some children who can not eat/drink orally. The list of reasons are long, but a few examples may include, possibility of aspiration, cleft lip/palate, lack of muscle tone in the neck/face oral sensory issues.

*Some people are under the impression that a child who has a feeding tube can not take a bath or go swimming. This isn't true. Timmy takes a bath every night. He has been swimming many times and even to the beach. As long as the feeding tubes balloon is properly inflated, which creates a seal around the feeding tube stoma, no water can get into the body.

*A child who has a feeding tube can have "tummy" time on the floor to play. Timmy loves to lay on the floor and he has never complained about the feeding tube hurting his stomach. We have not noticed any redness or bruising after Timmy has spent a while playing on the floor on his stomach.

If a child has reflux, the child's gastro-intestinal Doctor may suggest when placing the feeding tube that a Nissen Fundoplacation be preformed as well. This is a procedure in which the bottom portion of the esophagus and the top portion of the stomach are "tied" off to prevent food from re-entering the esophagus from the stomach. (acid reflux)

Some parents have stated that if they feed their child too fast via the feeding tube, this causes the child's reflux to become worse. We have noticed this as well with Timmy. When we feed Timmy via his feeding tube, if we feed him over 15-20 minutes, this reduces his reflux. Timmy also had a Nissen Fundoplacation when he had his feeding tube placed, but we think that the Nissen is failing and needs to be revised. In some medically complex children, having to have the Nissen Fundoplacation revised is a possibility. The revision is a surgical procedure, which may require the child to have to be hospitalized for a few days following the surgery.

Help spread the word to bring awareness and to educate. So that those who have feeding tubes can one day be treated as an equal part in society.

Dr. Ali's Gift

It is nice when as a parent of a special needs child, we are able to take our children to see one of their Doctors when the child isn't sick. To have a special visit. A visit in which you are able to thank the Doctor for all s/he has done for your child and the entire family. A visit in which you let the Doctor know that he isn't just a major team player in the care of your child, but a true family friend.

It is nice to be able to walk into the clinic, tell the receptionist that the Doctor is expecting you. And No we don't have an appointment. To be called back to see the Doctor after just a few minutes. To see the glares from the parents of children who are tired, hungry, anxious, being unruley, who have been waiting to see the Doctor for what seems like hours. The glares don't bother you, because for once our child is seeing the Doctor and s/he isn't sick. The glares don't bother you, because your heart is filled with joy, love, pride, thanks, so many emotions to even put into words.

We had one of those visits today.

We took Timmy to see his Endocrinologist. Timmy had a special Christmas/Thank You gift to give to Dr. Ali. Dr. Ali is and has been Timmy's/our #1 team player, in Timmy's care, for the past 7 years. Without Dr. Ali's professionalism, care, dedication, knowledge, understanding, and his ability to trust and believe in us as Timmy's parents, Timmy wouldn't be as healthy as he is today.

Thank You Dr. Ali for all you have done and all that you do to help keep Timmy healthy.

Saturday, February 5, 2011

Calendar Kids

Timmy along with 12 other extraordinary children, all of them patients of N.C. Childrens' Hospital, will be featured in the 2011 N.C. Childrens' Hospital "A Patient From Far Away" calendar. The children and their families hail from as far west as Bryson City in the mountains to as far east as Newport near the coast. Each month N.C. Childrens' will debut the story behind the patient featured in the calendar spread for that month. The Calendar Kids and their story can be viewed by visiting www.ncchildrenshospital.org/calendarkids
To read a story from a past month, simply click the name of the child you would like to learn more about. The links to the previous months are located to the left of the page.

Timmy's picture and story will debut in October. Yes, Timmy's birthday is in November. Being that UNC's telethon airs in November, the calendar kid for that month is the child being featured during the telethon.

We have a paper calendar, which has a small story entry of each child featured each month. I personally have really enjoyed reading about and getting to know the featured children.

Thursday, February 3, 2011

Pictures From The Past

One of Emily's classmates (Ashlyn) mom created a photo album on http://www.winkflash.com/ for parents to upload class pictures. This photo album is a great way for those parents who are unable to attend class events to see just how much fun the kids had. Thanks Melissa!

I'll admit I had forgotten about the album, until I was going through some ond e-mails and came across the link.

Here are a few (not all) Holiday and Farm Inquiry pictures of Emily and her friends.








Wednesday, February 2, 2011

100th Day

Today is Emily and Timmy's 100th day of school. They each had to do a project that included 100 objects to represent the 100th day of school.  I have to admit this my favorite project of the school year. I get to use my creativity to guide Emily and Timmy in learning.

This year was Timmy's 2nd year doing this project. This year the project was lead by the UNCW student teacher in Timmy's class. Brandi made up bags which contained a paper hat and a few object to help get parents and the child started with making the 100th day hat.

Where's Timmy?



We used a blue Bingo Dobber, sticky back ABC's, the numbers 0-9, and a few other miscellanous "shaped" objects that had to be glued to complete the hat. Doesn't he look so cute?


100 multi colored pom-poms glued to a paper plate make up Emily's hat. She had LOTS of fun helping to make her hat. She  was so proud of her creation she wanted to wear the hat to bed last night and to the bus stop this morning. We came to a compromise, she was allowed to wear the hat for a few minutes this morning before we left out to go to school.
How adorable is she?

I looking forward to next year!

Tuesday, February 1, 2011

Family Recipe For Excitment

Over the past 7 years we have tried this recipe for "Weekend Excitment."  Today the recipe was perfected.  Here is what you need to make your own "Weekend Excitment."

INGREDIENTS....

*A Friday evening or early Saturday morning (Friday evenings work best)
*A forecast for a significient snowfall for the Northeast
*A Little Boy (A Little gril may be subtituted)
*An insulin pump (Any medical equipment necessary to substain life may be substituted)
*A  6 month old who is sick with the flu and a cronic ear infection that needs to be fed, changed and wants attention, so they are screaming to the top of their lungs
*Long acting insulin with syringes (Any medication that can be added to the normal regiment will work)
*Prayer (optional)
*Ear plugs (optional)

WHAT YOU NEED TO DO....

1. Combine the weekend day and the significient snowfall in the Northeast. Set aside.

2. Play with, hug, and kiss the little boy, who has brittle diabetes. And who has a pancreas with a mind of its own, which causes the little boy to exhibit absolutely no normal signs/symptoms like a typical daibetic.
2.
3. Slowly add the insulin pump to the little boy. This pump will help substain life and help the little boy grow and flurish.

WARNING: WITHOUT WARNING THE INSULIN PUMP WILL ONLY FAIL ON WEEKENDS!

4. Briskly add the sick screaming baby. And insert earplugs into your ears if desired.

5. Pray that there is a current standing prescription long lasting insulin on file at your pharmacy of choice. Pray that you are able to reach the Endocrinologist by phone or pager being that it is a weekend and he does have his own family and life to lead. Pray that the sick screaming baby will fall asleep, long enough for you to take care of the emergency at hand.

6. Call pharmacy. Have needed insulin. Call Endocrinologist. Reach Endocrinologist. Get orders for the correct amount of insulin to give. Call Animas to try to trouble shoot the insulin pumps problem. COMPLETE PUMP FAILURE.

7. Combine the weekend and predicted snowfall to the other 6 ingredients.

Product is complete after 72 hours of no sleep, head full of grey hair, all fingernails are jagged, and complete loss of sanity AND the replacement insulin pump arrives via UPS.



Sunday, January 30, 2011

Sunday - School Podcast - Gardening

I have to admit I had forgotten all about checking Timmy's class website to see if any podcast had been recently posted. Fortunately for me, Timmy returning to school following Christmas break was delayed, due to snow. So I have only missed posting 2 podcast.

Friday, January 28, 2011

Round Three With A Twist

Winter is my least favorite season. I hate having to bundle up in layer upon layer of clothing. I hate being cold. I hate when my babies get sick and have to suffer through the aches, pains, fevers, spitting up, loss of appetite etc. that goes along with the flu or a cold. It breaks my heart that during these illnesses that I can't just take away all of their blah and leave them happy, smiley and care free once again.

During the winter it seems that no matter how careful we are by frequently washing hands and by sanitizing items and surfaces once a person has finished using it, the inevable happens, someone gets sick.

Timmy was the lucky or should I say the unlucky one. He was the first in the family to be diagnosed with the flu. For a child with a compromised immune system, he ended up having the mildest case of the flu that I have ever seen, thank goodness. Like most kiddos who have compromised respiratory systems, when Timmy gets sick his condition can go downhill very rapidly. Forty-eight hours with a temperature, 2 days of missing school, and a productive cough, this was the extent of Timmy's flu symptoms and its full course.

Now Emily and Nate both have been diagnosed with the flu. Emily's symptoms seem to be similar to those Timmy has. Poor Nate has not only these symptoms, but the achiness, runny nose, spitting up, and a cronic ear infection. It has been 4 days since he has shown symptoms of the flu and he just is starting to turn the corner for the better. It breaks my heart to look into his puppy dog eyes, which seem to be pleading with me to take away the aches and yuckiness of his illness and all I can do is cuddle with him and try to will the medication to work faster and will his body to get well soon.

I'm counting down the days until the first of April. At which time here the weather should be much warmer. My favorite season of the year. Only 61 days to go!

Wednesday, January 26, 2011

Happy 15th Birthday !



Happy 15th birthday Zachary!!!!

You have grown into a very Loving, Caring Polite, Dependable, Helpful boy. (Well, you are a teenager, so these characteristics only occur when you want them to be shown to others.)

There are a couple of events leading up to your birth that are vivid in my mind.

My OB/GYN decided that being the ultrasound showed that you weighed over 8lbs, that it was time to induce my pregnancy at 37+ weeks gestation. 

I was admitted to the hospital on Jan. 24th, so that an amniocentesis could be preformed to check your lung maturity before my induction. The test results came back positive that your lungs were definately mature. 

Ray, Ray and your older brother, Linwood (Jr.) came up to visit. Many, many years ago, a pack of Energizer batteries had a bright green sticker which informed customers of the battery test strip provided on the packaging, whcih indicated that the package of batteries were indeed fresh. 

With this pointer finger of his left hand in his mouth, Jr. poked his little  right hand, which held the sticker, through the bed rail and offered me the bright green Energizer sticker. While doing so, he softly and with a shaky voice from being afraid said "Happy Birthday Mommy!" This brought tears of joy to my eyes. A simple sticker offered to me as a birthday present. A simple sticker that most people would look at as just another piece of trash. Was given to me with so much love and from the heart by a humble 4 year old, meant so much to me.

 I asked my Nurse for an armband and some tape, which she provided me with. I placed my special birthday sticker on that armband and secured it into place with tape. I proudly wore the armband the entire time I was in the hospital.  I still have this armband safely put away with other momentos from years past.

. The vision of my hyperactive, yet loving 4 year old offering me such a simple gift of love, stays with me to this day. That was the best birthday present to this day I have ever received.

There are a couple of numerical facts, which are interesting pretaining to your birth and my birthday;

1. The year of your birth (1996), reverse the last 2 digits and you have my year of birth (1969)

2. The numbers of your time of birth (3:43PM)  + The numbers of your birth weight (7lbs 2oz.) + the two digits in your birth day (27th) = the age in which I would be on my birthday (27) on Jan. 27th, 1996.

3. Starting at your 1st birthday, the number of years you are or when one adds the two digits in your age, when I add the two digits of my age  upon my birthday, will either equal your corrent age or the two digits in our age will be the same. For example, take your age this year, (15) upon my birthday Jan. 27th (tomorrow) the two digits in my age (42) will also equal (6). 1,5 =6 AND 4,2 =6 . This pattern continues or some variation of it for many, many many, years.


Sunday, January 23, 2011

You Are 6 - Months Old


This is one of my favorite pictures of you. You have the sweetest expression on your face and I just adore the way that you have your hands together.

This past month has been an exciting time. You had your 1st. Christmas. And a lot of milestones accomplished.
You learned to push up on your arms. And you are willing to play alone for a few minutes, while mommy takes care of necessary housework.

You really enjoy floor time. Now that you are able to push yourself up with your arms, you tend to push yourself backwards and get yourself trapped in comprosmsing positions

You got your first 2 bottom teeth this month. You look sooo cute when you smile and show those pearlly white teeth.
You absolute HATE having to sit, even for short periods of time. I wonder if this could be a sign of what is to come once you become more mobile.

You have a wonderful personality, always smiling and laughing. You are very inquisitive, wanting to explore and learn how things work that are within your reach. You are also demanding. You are truly a routine oriented little guy. Everything in your life HAS to be kept on schedule or you have a terrible meltdown. You ability to focus and track people and objects has greatly improved. You LOVE playtime with your brother Timmy. After your breakfast you insist (by fussing) if we don't go into Timmy's room to spend time with him while he is getting ready to start his day.
You are starting to want to put yourself to sleep at night, rather than mommy rocking you to sleep. On the nights that you rather self soothe yourself to sleep, I miss our quite quality time that we share at bedtime.
This is a picture of you and daddy during your 2nd snow storm. The 1st snow storm in which we received 4-+ inches of snow. We both had an eye doctor appointment at Duke. After a long day of doctor appointments and returning home late, mommy didn't think about taking any pictures.

Our adventure together continues. What will next month bring? I can hardly wait to see.



Thursday, January 20, 2011

Some Cuteness To Share

Timmy's Autumn Kindergarten Picture. Is he just the cutest?!

My 13 year old son, Zachary, was given a class assignment during the 1st. week of school. The assignment was for him to write a short biography about himself. This assignment was to help the teacher to get to know her students better. Zachary's teacher called me yesterday to discuss the paper that Zachary had submitted to her. She just thought that it was so touching, even though it wasn't exactly what the assignment that was assigned was suppose to be. When Zachary got home, I asked him why he hadn't followed the directions that the teacher had given him for his biography. With tears welling up in his eyes, he says, "I'm sorry mom! But my teacher has the next 9 months to get to know me. I feel that everyone should get to know Timmy too." All I could do was to give him a hug! What a loving and caring big brother Timmy has. Here is a copy of the paper that Zachary submitted to his teacher. I asked his teacher to email me a copy and she did. I worn you, this brought tears to my eyes. Maybe it is because I'm the proud parent of both of these special boys!
Zachary
September 2, 2009
Nowell-3rd
Timothy
It was five years ago when my little brother was born. I was 7 years old. I remember he weighed 1lbs 6 ounces and he was only a foot in length. He was born 2 months early, so he had to stay in the hospital. I remember my mom sitting down with me and explaining to me that my little brother was very sick. And because he was so sick he had to be on a speical machine, which was helping him to breathe. I also remember her telling me that he had Down Syndrome, that his brain was abnormal, he has a small head, was born without any eyes, that he has diabetes and that no one was sure if he could hear. I started to cry and I asked, "Will he ever be able to play with me?" My mom told me that yes he would be able to play with me, but only in a different way. That no one was sure, but Timmy may never be able to walk, run or talk.
Being I was so young, my mom had to get special permission from someone at the hospital, so that I could go and see him. He was so small and was hooked up to alot of wires. I was so scared! I remember thinking, if I could have 1 wish, it would be for my brother to be on and to come home soon. My mom broought along a book for me to read to him. I don't remember the name of the book. I did have fun reading to him. And all of the nurses in the NICU told me I was so cute.
Four and a half months after he was born, it sure seemed a lot longer than that to me, the doctor's said it was ok for him to go home. While my mom was busy getting things at her house ready for Timmy to come home, I had to stay with my dad, at his house. When Timmy finally was home and I was able to see him, I asked my mom if I could hold him. She said yes. He was still very smal, weighing only 7lbs 2ozs. But I enjoyed holding him for the first time.

One afternoon when I got home from school, I noticed an unfamiliar car in our driveway. When I entered the door I found a strange person in out living room. I went to ask my mom who she was. My mom told me that we were going to have nurses to help us care for Timmy. I personally didn’t like this nurse, because she was boring, rude and never paid much attention to Timmy. All she did was read a lot. My mom didn't keep this nurse around very long.

The one thing that Timmy hates the most is having his teeth brushed. One morning not too long ago, Timmy's nurse told him it was time for him to get his teeth brushed. Timmy did what he usually does, which was to shake his head no. But this time when the nurse had him to touch the tooth brush he said "Oh man!" That was so funny!! It was also the first time that I had heard Timmy say something other than MaMa.

When my brother was born he had to have a tracheostomy to help him breathe, because both of his nasal passages were blocked. Two months ago he had a sleep study. When he came back the doctors had taken his trach out. I was so happy and proud of my little brother.
Timmy has alot of medical issues, I still enjoy playing with him. My favorite game that we both like to play is when I take him for a fast ride around the house, pushing him in his toddler rocker. We use to play a similar game, when Timmy was younger and used a baby walker. He just thinks this game is so very funny. I love to hear him laugh, because it makes me feel good to know that I'm making him happy.
I LOVE my brother Timmy!!!!!!!!

Friday, January 14, 2011

Meet The GrandKids

Meet Distiny Marie. Age 2 and already potty trained and has been since she was 18 months old. She is truly a Mommy's girl.

Meet Jeremiah Ethan. Age 4. He was given his Uncle Timmy's middle name. Want to know facts about "Thomas And Friends?" He is the one to ask. He is hightly obsessed with "Thomas" and has been since he was about 1 year old.

This is my daughter Tamarah Kali. She is 23 years. I think that she looks ALOT like me. She is a very caring, loving, generous, helpful, respectful, humble, (geez I can't think of anything negative to say.) Except that she can have one heck of an ATTITUDE when she wants or doesn't get her way!

Emily and Jeremiah.
wmily: I'm the cute one.
Jeremiah: No, I'm the cute one.

Thursday, January 13, 2011

Video - Mom Speaks with the Director of Special Education

Have you had to face this type of situation???


I experienced this same situation with my now 23 year old daughter, Tamarah, when she was in the 2nd grade.

From infancy to age 3 years, Tamarah had chronic reoccurring ear infections, which led to a speech impairment and minor hearing loss. Following the placement of ear tubes on numerous occasions and 2 years of speech therapy, things worked themselves out for the better for her.

It was apparent when Tamarah started school that there was a problem. She had trouble recognizing her ABC's and core reading words. By the middle of 1st grade, I had a parent-teacher conference, at which time I voiced my concerns about Tamarah having trouble reading. I wanted her tested, so that she could be placed in a special Ed class for extra reading help. The extra attention and help that she was getting at home from me didn't seem to be helping to improve her reading ability. I was assured that she wasn't that far behind and by the end of the school year, her teacher expected that Tamarah would catch up to her peers in her reading. Not knowing any better I bought this explaination.

By the end of the first grading period of Tamarah's 2nd grade year, she was still having problems reading and comprehending what she had read or what someone else had read to her. I requested a parent-teacher conference. It took 3 weeks for the teacher to get this conference setup. Myself, the assistant principal, the schools Special Ed teacher, the school counselor and a couple of other people whom I can't recall.

To make a long story short. I stated my concerns and requested that Tamarah be tested. We all went around and around on why I felt that she desperately needed some type fo formal testing and the members of the meeting stating why they felt that she didn't. By the end of the meeting I was soooo frustrated, but I had won the argument. They agreed to test Tamarah.

It took 2 weeks for me to receive the necessary paperwork that I needed to sign before the testing could be completed. And yet another 2 weeks before the testing actually took place. Once I was notified that the testing had been completed and that Tamarah wasn't eligable for special placement for reading help. I requested a meeting so that I could have the results of the testing explained to me. Come to find out all that the testing intelled was Tamarah reading from a long list of words! Come on, she was able to read words from a given list. THAT WASN'T THE PROBLEM OR EVEN MY CONCERN!

Being I was getting nowhere, I just dropped the issue and gave Tamarah even more of my undivided attention at home with reading and reading comprehension.

At the time I didn't realize that as a parent I had certain rights. Having Timmy has taught me things that I wish I had known many years ago.

*A parent has the right to request that their child be tested when there is a concern. And the school system MUST preform these test to a certain standard.
*A parent has the right to be present during the testing.
*A parent has the right to know who will be doing the testing and under what enviroment the test will be conducted.
*A parent has the right to know what materials, strategies and techniques will be used during the testing.
*A parent has the right to request a meeting in which the test results are shared and explained.
*A parent has the right to a written copy of these test results.
*A parent also has the right to take their child for testing by an independant person not associated with the school system for a second opinion. And to have the opportunity to present these findings to the team memebers involved on the school level.

My advice to parents of a Special Needs child; know your rights and DEMAND what you feel your child needs and deserves in order to be as successful in school and life to the best of their ability.

Monday, January 3, 2011

Christmas Gifts - 2010

I know, I know. I'm a bit behind with this post. But as the saying goes, better late than never. During the day I'm either feeding Nate, cleaning house, there is a  Doc appointment to attend or something else comes up that takes me away from the computer. So when nighttime arrives and I do have a few minutes, I choose to go to bed early instead of updating the blog.

We or more accurately Floyd, didn't take any Christmas Day pictures of the kids opening their gifts from Snata. He only took video. So I won't bore you with any long video clips. Here are a few pictures that I took of the kids a couple of days before Christmas.




Here are some of the gifts that the kids received from Snata, family members and friends, that are their favorite and mine.


Nate sitting in his Fisher-Price Bounce N Spin Froggy. I like this toy because of the toys, its bright colors, and the music that plays when the frogs eyes are spun. This teaches cause and affect and Hand Eye coordination. The only thing that I dislike about this toy is that it doesn't have any lights. A better choice would have been Fisher-Price Step and Play. It has lights, music and lots of interactive toys. Unfortunately we didn't find this until just before Christmas.

Sensory Symphony by Sassy. This is Timmy's favorite toy. Each fish has a different texture. There is a volume control switch. And there is 3 modes of play; continuous music, make your won song (each individual fish has it's own musical note), and finish the tune. 

LOL Roll Over Rover - This dog is hilarious! The dog actually rolls over and laughs. This is Timmy's toy, but it is Nate's favorite. I believe it is because of the color contrast (black and white). Nate loves to watch the dog roll over and laugh. He just gets hysterical when we lay him on the floor with the dog. The dog has a motion sensor to restart the dogs antics once they stop. This toy helps promote cause and effect.

Chatimal - I say what you say - Unfortunately this toy wasn't exactly what I was hoping. But it is very cute. This is Timmy's toy. The Chatimal repeats every word or sound that it hears. The down side is that the repeated words are sped up and the sound quality isn't that great. So I'm on the hunt for a toy that does something similar, but of better quality

Melissa And Doug Shape Sorter - I really like this. The pieces are small enough for Timmy to be able to grasp easily. And the fact that the shapes are to be placed on a peg rather than Timmy having to search a container for the proper matching shape hole, is a plus. The bright colors are a plus as well.

Fisher-Price Laugh and Learn Basketball - Bright colors, volume control, music, lights, cause and effect and it helps to teach numbers/counting
1-5.
V-Tech Baby's Learning Laptop - Bright colors, music, lights, volume control, raised buttons and cause and effect. This toy also helps to teach animal sounds, object names andcounting.

Bumbo Seat with Play tray - We bought this from Target. The play tray was sold seperately and is a must for playtime in the chair. This chair promotes great sitting posture.

This is Emily's favorite gift. Why did we buy a cell phone for a 5 year old you may be asking. Well, its intended use isn't for talking, but rather for playing games. After looking at the prices for PSP's and each game that would be needed to go with the PSP, we decided that giving Emily a cell phone in which to play games would be a better choice. 1. This phone was FREE. When we recently upgraded our phones, we added 2 new Smart phones. This allowed us to be eligable to choose a FREE phone.  2. Emily LOVES playing games on Floyd's phone. The games that she chooses to play are FREE or only cost $0.99 each. Compare the price of these games to those of a PSP, we come out way ahead in savings. Besides, with a PSP there are accessories that she would want and we would have to find someway to store each game cartridge when travelling. With the cell phone we only have the phone to find a safe place to store when it isn't in use.

This MP3 player is Zach's favorite. Zach LOVES music and singing. He uses MP3Rocket to download free music to his player. The kid has to charge the internal batter at least once a day. Twice if he uses the player instead of his stereo on weekends. Thank goodness the player comes with a rechargable battery. Or else we would be broke from having to replace batteries!

We bought this gift for Timmy so that he can feel more involved with his meal preparations. All of Timmy's meals are made from scratch and pureed. We use no butter, oils or salt when preparing his meals. But we do use ALOT of herbs. So we felt that Timmy would gain a lot from helping to grow and use his own herbs to put into his meals. No sight is necessary for this activity. And it will help promote the use of his hands and the sense of smell.