Tabitha, Our Sweetheart


Tabitha, Our Sweetheart

"I Love Your Brain"

We are forever telling Tabitha that she is our Sweetheart. She used to look at us and say "I love your brain". INTERESTING! (I wonder what she meant by that?) Tabitha is our now 21 year old daughter (January girl) who was born with Turners Syndrome and at 18 months old was diagnosed with Autism and developmentally delayed. She is fairly healthy. We have had more complications with the autism/developmentally delayed symptoms more than the Turner Syndrome. It takes alot of patience and really staying in tune with her to stay on top of her behaviors. We have had alot of learning about this over the years. We will continue to be ever learning and trying to be of service to others in years to come. We love her and would not change having her for the world. God has done alot of work in and through us since He gave her to us to raise for His glory and His honor.

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Tabitha was pretty much non-verbal for the first 4 years of her development. Music made a significant change in that. She still has what I call "toddlers language". She loves to listen to Praise Music and watch Disney Singalongs. These helped in her processing her language abilities. Today , she is a BIG fan of VEGGIE TALES Videos.

"Our Turners Story"

We gave birth to Tabitha in 1986. She was born weighing only 6lbs 6oz.and 18" long. What a difference from the 10lb baby, the doctors told me I was going to have! She had thrombocytopenia to begin with and her Apgar test was extremely low. The nurses in the nursery were questioning about her appearance when my cousin(also a nurse)overheard them. She asked me if the doctor had said anything about her neck being so stretchy. I didn't know anything about that and just didn't think much until I saw the doctors whispering and I heard my last name. When time to leave the hospital, they gave me an envelope and a folder and made an appointment for us to go to a genetic doctor.Well, don't give me something like that without somekind of explanation. The folder was stapled shut. I took them all off and read the file. In teeny writing was - turners syndrome? Well, I thought, what does that mean? So before the appointment, I studied what it was from my home medical book. I wasn't going to no Surpise visit and be stupid. We went and showed those people that we were prepared for the news. We were informed of all kinds of things could be wrong but to look at the positive, given statistics, tests to be done(karotype for one), and a gamut of things. You leave with your head spinning, no matter how prepared you are.

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Guilt gets laid on real big by the devil. You try to figure out what you did wrong and who is at fault! We have learned finally that noone is at fault, these things just happen. This tends to be a constant battle I have to deal with all the time. God is working on me concerning it.

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We have had our struggles with the growth of Tabitha but we know that God is in control. She has been tested through the years for cardiac problem but Praise God she has had none. She has normal kidneys. She does have the height deficiency and her reproductive system is not normal. She is healthy and we are very THANKFUL. **4/99 She saw a surgeon and he sent us to a physical therapist. The therapist tells me this appears to be what is called Primary Lymphedema. We do massage therapy morning and night on her leg and foot. She wears a compressed stocking all day on just the left lower leg. Please agree with me that God will/can do a miracle.** Her swelling is now only located in her ankle/foot area. We had chosen not to give her growth hormone due to her developmental delays and autism BUT we have changed our minds. We gave her genatropen (growth hormone) and prayed she would get some height. She is now at 4'10" . Update 3-28-01....We had to stop shots due to money issues. She seems quite happy and quite the "teenager" now. High School and now working on transitioning her from School to Work. We are content with this height. She will soon begin Hormone Replacement.

Inspite of these issues to deal with we are so glad we have had her. She is a blessing!
8-02 Tabitha is now a junior in high school and goes into the community to learn job skills and daily living skills. She is progressing nicely and we will begin the process that most all parents have to do with children like her -- obtaining guardianship by the time she is 18. This is a must for us as her parents. It means going before a judge. I will update later as I obtain more details on how to go about it.

2-5-03 Thought it was time for an update.....well, after 17 years they finally find she has been diagnosed with Bicuspid Aortic Valve, meaning, instead of 3 spacers in her aorta, she only has 2 therefore the BAV. We have had several suspensions this year but Behavior Intervention Plans are in place and I have brought to the districts attention the need to change thier forms to be worded more appropriately for someone like my child. They were written as if a student understands and can answer appropriately (cognitively), which is not the case for many ESE students. I have learned much from studying IDEA and contacting legal advisors in the district.


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"Our Autism Story"

Early on we noticed that Tabitha did not like to be held, she was very content to just lay and look around. We noticed that her development was a little behind her two older siblings. She never seemed to be amused by objects(toys), she just liked to watch. When she started walking she seemed to just run instead. At 18 months she began having seizures, which fightened me. She had about 8 in the first day, they were like she was going to throw up so I thought she was sick but the doctor immediately sent her for neurological testing at the childrens hospital. We got the seizures under control basically but she just wasn't DOING the things the other kids did and the doctors kept telling me

She'll grow out of it.

Yeah right! I didn't believe them so I pursued it and pursued it with them. She was then seen by a child development doctor. Finally I found the ones who agreed with me.

She was not developing normally.

They provided me with the supportive services I needed but I still had to be sure and ASK THE RIGHT QUESTIONS. It is so hard when your going through the situation to know what to ask. At 3 years old she entered a special preschool program through Child Find. She was basically non-verbal and her behaviors were difficult to manage but they worked with her and us. Thank God for

Early Intervention

The teachers fell in love with her, they taught us and we taught them how to do things to help her progress. I spent alot of time reading and calling for support and praying. Christian friends got an earful from us, but family was the most supportive. She is now in a multi-varying exceptionalities classroom. We held her back one year in elementary due to her size and delays. Plus I was not comfortable moving her into the upper grades yet. She is now in middle school and doing surprisingly well. She is much more independent now and acting more like her age. Oh the teenage years ! Well, we are at the high school level now, 2nd year. And she is participating in Special Olympics. Last year she was chosen as "Official Athelete" for her school in the Indoor Games - bowling. We are so proud of her. Soon she will be preparing for track, fast walking again maybe as last year. 9/05 She continues to be a Special Olympian bowler and track walker. She now goes several days a week to the YMCA with us to work out to stay in shape and in good health. No more food rewards at school either. More to come.....


picture of Tabitha at Special Olympics Ceremony 2001

Update -- January 9, 2004

We just celebrated Tabitha's 18th birthday.

Tabitha is a senior this year but due to IDEA she is able to attend until she reaches 22 years of age. She will continue to attend school til then unless something causes us to change the plans. She has been receiving services through the Med Waiver program. She has a support coordinator, a behavior specialist, respite care and several services to help her integrate into the community. We are working presently on plans for transitioning her from school to work. All of this takes researching, communicating with experienced parents and her success team. There is so much more involved in raising a child with disabilities than one who is not. 10-27-04 Update- We recently spoke to a lawyer concerning guardianship. His advice was to continue as is until the need arises. He was on a medical board and says that as long as someone is taking responsibility for her bills, no one will question guardianship. He said if anyone does, then a judge will first look at the parents and see that our family is the best choice for her and appoint us without us having to go through a long costly legal process.
I hope my updates are helpful to others. Some things I do not type because they are rather personal and she is showing signs of understanding allot more than we give her credit for and she deserves privacy. I am willing to discuss more things in email with anyone who wants to contact me.

Update -- Sept. 14, 2005

Wrong advice by the lawyer has put us in catch 22 now that HIPPA privacy policy has put fear in doctors. We are in the process of getting legal guardianship as I type this. I will return with the latest update after we get through what appeared to be a nightmare. 10/09/05 God sees us through. He is our provider and deliverer. That is so true. Well, we are now, not just her parents, but her guardians also. Long story, but if you are in need of knowing more about this for your ownselves, please email for details.





My friend Vickie created the beautiful graphic of Tabitha at the top of this page.
Thank you Vickie!!

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I have been an active member of the Prolife Organization and still continue to support them. We are firm believers that God knew us before we were formed(Jeremiah 1:5). I would like to encourage all those who have been told that they are carrying a child who may, have this or may have that wrong, consider carrying the baby(fetus) to full term. There are so many people out there wanting to adopt. What is 9 months? Please consider others needs above yourself. I cannot imagine anyone aborting a child like mine. Truly sad.
There are other alternatives.

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