Welcome to Tara's Site

 

 

"There are no strangers here--
only friends that haven't met yet"
  

       

        

     

 

This site is dedicated to Tara Clark, a beautiful little girl with Five P Minus syndrome Plus Autism.

Mission Statement: To help families learn about Cri Du Chat Syndrome and Autism, communicate with other families, spread awareness to medical professionals, and the communities.

 

 

 

 

Something else I have is Called Autism

What is it?  Autism is a developmental disability that affects a person's verbal & non-verbal communication, understanding of language, and socialization with peers.  Other characteristics include: engagement in repetitive activities, resistance to environmental change, and unusual responses to sensory experiences.  The range of severity can be from extremely mild to severe.  Autism is a behavioral disorder, NOT an illness or disease.  It typically appears by age three and is a lifelong condition.  There is no known cure.  Although autism affects the functions of the brain, the specific cause is not known. 

Autism Symptoms
The severity, frequency, and grouping of the following symptoms will determine where (if at all) an individual will fall on the autism spectrum 

Repetitive behaviors (may want to watch the same DVD or video over and over again) 
• Unresponsive to commands or questions ("in their own world") 
• Lack of imitation of others or imaginative play 
• Indifferent to the feelings of others
• Hypersensitivity to light & sound (covers ears when music is played or covers eyes when going outside) 
• Self-stimulatory behaviors (e.g., rocking, jumping up and down, hand flapping)  
• Echolalia (Repetition or echoing of a word or phrase just spoken by another person)
• Unusual emotional responses (inappropriate laughing or crying)
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Frequent temper tantrums (described by many parents as "meltdowns") 
• Responds adversely to physical affection, hugs, kisses, etc. 
• Shows no interest in making friends 
• Does not initiate conversation
• Very poor diet (may eat only starches)

• Frequently walks on tip-toes as a toddler 
• Socially withdrawn or socially awkward 
• Shows little expressive language
• Clumsiness (falls or trips often) 
• Delayed speech & language development 

• Improper use of pronouns, statements, and questions 
• Unusual tone or rhythm of speech 
• Self Injurious Behavior (head banging, scratching/biting self) 
• Frequently makes irrelevant remarks 
• Difficulty with abstract language and concepts
• Be preoccupied with one or only a few narrow interests
• Need for sameness (adheres to routines) 
• Severe tantrums when routines are disrupted 
• Shows an attachment to unusual objects such as car parts, branches, leaves, etc. 
• Fascination with spinning objects or spinning one's self 
• Very good at rote memory tasks such as repeating lists of items or facts

 

When I'm trying to concentrate on things this is how I might see all the time

 

 

 

 

What I Have in brief

Cri Du Chat Syndrome

  • 5p- Syndrome is characterized at birth by a high pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications. "5p-" is a term used by geneticists to describe a portion of chromosome number five that is missing in these individuals.

  • require ongoing support from a team of parents, therapists, and medical and educational professionals to help the child achieve his or her maximum potential. 

  • Other characteristics may include feeding difficulties, and delays in walking. A small number of children are born with serious organ defects and other life threatening medical conditions, although most individuals with 5p- can anticipate a normal life expectancy.

  • At birth, the main clinical diagnostic feature of the syndrome is a high pitched, monochromatic ‘cat-like’ cry that is always present in the new-born but may disappear with age. Other features include a round, full face ("moon face"), widely spread eyes (hypertelorism), an extra fold of skin at the inner corners of the eyes (epicanthal folds), a flattened and widened nasal bridge and ears that are positioned low on the head. Most children with CDCS will have feeding problems from birth including failure to thrive, poor sucking and slow weight gain. They may also be some medical complications but these will not affect every child.
  • It is important that parents ask for help if it is not offered. Although medical staff may have little or no experience with infants with CDCS they will have extensive experience in dealing with hypotonic and low birth weight babies with feeding problems.
  • with the help of early therapeutic interventions, most children will eventually reach major milestones including learning to sit up, crawl, walk, and eat independently.  What is important to remember is that every CDCS child is unique and not all children will perform at the same level at exactly the same time.
  • Both children and adults with this syndrome are usually friendly and happy, and enjoy social interaction. With early and consistent educational intervention, as well as physical and language therapy, children with 5p- Syndrome are capable of reaching their fullest potential and can lead full and meaningful lives.

   Hi my name is Tara.  I would like you to get to know me before you know what I have.  I am just like you, I have feelings and I do not like to be stared at.  I'm non verbal so I use ASL American Sign Language and different tones of my voice that I can use to communicate. I'm deaf and hard of hearing so if you are talking to me and I don't say hi to you it isn't cause I don't like you it is cause I don't always hear people. Tips for when you meet me or a hearing impaired person: Face them when you speak, Speak clearly, If the hearing impaired person doesn't hear you, patiently repeat what you said. Don't say, "Never Mind" because then the hearing impaired person feels left out.

  I like to play and go to the park like you do.  I like water and sand, swings and slides, riding my special bike and going shopping, riding on 4 wheelers and helping my dad mow the lawn, and much more.  I like to watch movies but only certain ones like Baby Einstein and Signing time movies.  I like music and dancing. 

   I would like to be friends with boys and girls my age and do the same things.  Sometimes I'm scared as much as you are, but once I get to know you I like to have fun with you.

   My mom, brother and my dad need to help me with some things. When you see me I usually have something in my hands.  That is because I need it to stay calm.  I like to have rubber bands, pen cases (mom says I cant have the ink in them though because it is hard to get out and off things) I like anything that is shiny and metal. 

  I get mad like you do sometimes because I want to let people know what I want or need but my body  doesn't always let me, so I get mad and I will bounce on the floor and yell, until someone understands me.  I can not eat all the foods that you might because it does weird things to my body and I can have a melt down.  Different scents can do this to me to and I don't have control over the way my body reacts.  Sometimes I will pinch your hand or arm when I want you to play with me or say hi to me.  I don't do it to be mean.  If I hurt you I'm sorry. I don't know that I hurt someone, or why some people get hurt.  I hope that you will be my friend and if you have any questions my mom will be happy to answer your questions.  I hope that you enjoy my website.  My mom changes it allot so I don't know what is on here but enjoy. Talk to you soon HUGS

 

 

 

 

 

 

 

 

 

 

 

 

Tara 6 years old 2006

 

 

 

 

 

 

 

Tara 4 years old 2004

 

 

 

 

 

 

 

 

 

Tara 6 Months old 2000

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Tara enjoying Jonny's birthday cake 6 years old 2006

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