Tag Archives: special needs

03/4/11
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A Line In The Sand

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If you are/were a regular reader here you know that I am not one to back down from anything, heck give me something that I have an opinion on and I will HAPPILY tell you what my opinion is – I mean one of my most read posts (but least commented on) Not So Perfect After All about an odd adoption disruption that I read about. And I stand by what I said in that post…

Recently I heard a story about another family, this time the parents had made a decision to adopt from a specific country and started looking at waiting children lists. They believed that they had found the perfect addition to their family there on the waiting child list, a sibling set but the information indicated that there was an issue they needed to discuss with the agency. The siblings were adorable and in reality still pretty young, so the family wondered what the issue was as there was no indication of any problems from the pictures.

They contacted the agency via e-mail and filled out some forms. All of the paper work looked perfect until that last paper, that last paper told the whole story of why the children were still waiting; one of the siblings was HIV positive. Everything was clear to the family but they were not immediately turned off, some research was in order. They needed to know what challenges adopting an HIV positive child would bring them.

The family started their research; reading blogs, researching medications, life expectancy, and most importantly how to deal with an HIV positive child in the home. The family would hate to put them or anyone else in intentional danger of contracting this auto immune disorder if it could be prevented.

One mother of two HIV positive children, Carolyn Twietmeyer who is also the founder of Project HOPEFUL says, correctly I might add:

HIV cannot be transmitted in a normal family, school, or church environment, she explains. The virus can only be transmitted in a few ways: intravenous drug use, sexual contact, through birth and breast feeding. Although she did not mention it, HIV can also be transmitted through blood transfusion. It is not transmitted, she emphasizes, through hugs and kisses, sharing drinks, or even if siblings share baths.

…

But perhaps the hardest thing for many parents of HIV-positive children to deal with is not the adoption process or the financial expenses but the stigma associated with the disease. Twietmeyer says most of the calls to her organization have been from parents of HIV-positive children who ask for help dealing with discrimination against their child in church.

From Mother of 13 Urges Adoption of HIV-Positive Children

I read another blog during my research for this article that said that caring for an HIV+ child can be easier than caring for a child with juvenile diabetes.  [From FAQ:  Adopting Children who are HIV Positive (HIV+) which includes quotes from Dr. Jane Aronson]

The family started to tell a few people of their plans. At first no one batted an eye at the HIV diagnosis,  but before long the family started to receive resistance from people very close to them. The family backed away from the sibling group sadly, they could not handle the stigma even though this sibling group had their hearts.

African Orphanage

I read this story as part of an e-mail, and started crying. How many people have turned away a child because of the stigma of a special need (the HIV+ status was the perfect example but there are many more Hep C, Hep B, family history of mental illness)? Do we as a society have a desire to help change some of these stigmas or does it benefit us to continue to allow them to flourish?

Where do we draw the line in the sand? What diseases carry the stigma, sometimes even in the medical community, and what ones don’t? Apparently at least with HIV+ children, the line is moving in the right direction in Russia at least as one article from April of 2010 indicates that adoption of HIV+ children is on the rise.

I am not asking you to adopt an HIV+ child, heck as always I am not asking you to adopt any special needs child but please help me advocate for these children who have no voice of their own right now! And help me spread the news about all of these disorders that carry drastic stigmas that are typically wrong, like I said in my last post ~ Children cannot have too much love as long as the person offering the love is genuine.

05/2/10

{122/365} Racing Towards a Cure for TSC

(Thank you Kelli for the cute title…wish I had thought of it!)

I hope you have a few minutes to spare to read about TSC, how our family has been affected and what you can do to help!

What is TSC?

Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC). The term TSC is used in scientific literature to distinguish tuberous sclerosis complex from Tourette’s syndrome.

The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. The most common affect of TSC is brain manifestation or tumors is epilepsy or seizures. Seizures occur in 60 to 90 percent of individuals diagnosed with TSC. Some people with TSC experience developmental delay, mental retardation and autism.

At least two children born everyday will have TSC. Current estimates place tuberous sclerosis complex-affected births at one in 6,000.

Since there is no cure, early intervention is key to helping overcome developmental delays. Advancements in research are bringing new and improved therapeutic options. Surgery to remove tumors or stop tumor growth is helping to preserve the function of affected organs. Technology is pinpointing the exact portions of the brain stimulating seizures and creating new therapies to help control seizures. With every new day we are one step closer to finding improved treatments.

If you would like more information you can visit the Tuberous Sclerosis Alliance website as they have so much information there and can answer almost any question!

To help you put a face on this terrible disorder here is the face I see everyday as well as her story:

Little Princess (and her twin brother) were born in South Korea at 25 weeks 5 days gestation. She is quite the fighter and 4 months later was released from the hospital into the care of Eastern Social Welfare Society (an organization in Korea that makes it so that those children whose parents made an adoption plan for them can be well cared for typically in a foster home until a forever family has been found). As Little Princess and her twin brother waited for a forever family they underwent many medical tests to be sure they were developing correctly, during one of those tests a tuber was discovered in Little Princess’ heart, so an MRI was scheduled to see if TSC was the culprit as it was discovered she had a few of the ash leaf spots (small areas of lighter/white colored skin) as well. During the MRI, they discovered three tubers at the back base of her skull and a diagnosis of TSC was confirmed. Shortly thereafter, my husband and I learned about them and the rest is history as they say!

Prior to traveling to Korea to meet Little Princess, we joined an online parents group for those with children affected with TSC. We met a couple and their daughter who lived close to my parents. Their daughter who not only also suffers from TSC but is also adopted and only one month younger than Little Princess. What a wonderful find for these two little girls and a great resource for us as parents!

Days before we expected to travel to Korea to meet our little fighters, we received a call that Little Princess had suffered what they suspected was a seizure, another possibility with TSC. We told them to run the necessary tests and that we would wait on the results before traveling. Two weeks later with a normal EEG in hand we left Korea with both Little Princess and her twin brother.

Once arriving in the US, we made appointments with pediatric neurologists, heart doctors and so many more. All said that while most likely she was delayed due to her extremely early birth, it was possible that TSC was the culprit. We immediately started every therapy in the book it felt like and progress was made! With each milestone reached and exceeded we realized that Little Princess had a very mild case of TSC.

Mild or not she still suffers, she can still pass the disorder on to her children and possibly so could her brother. At 32 months old we still have not experienced puberty or some of the other life changes that can bring on the seizures that we dread so much and we are still not 100% out of the woods on the autism that is much more likely with TSC, though it is pretty clear we will likely not be dealing with that issue.

We have met many amazing families who have children that suffer so much more from TSC than Little Princess. And for them as well as for Little Princess’ future family and her that we ask you to help us find a cure for TSC. How can you help? You can sponsor me in our local walk for TSC (or walk with me ~ May 22nd in Galesburg, IL), you can walk yourself (a list list of walks can be found here), you can volunteer with the TS Alliance, you can help me spread the word and so much more! Feel free to e-mail me with any questions! I leave you with one more reminder of how TSC is part of my everyday life:

01/27/10

{27/365} January 26, 2011

Today we had our six month appointment with Little Princess’ neurologist. We have to visit every six months no matter what, just to be sure she is advancing properly and there are no signs of seizure activity I am missing. So we went to see one of my favorite doctors. I was really hoping that Little Princess would talk for him, run for him, and pretty much just be herself. Much to my dismay she did all of that and so much more (she H-A-T-E-S strangers and does not do well with people she does not know very well)! While she disappointed me because she would not let them weigh or measure her (I am curious if she has grown at all since August), she did not disappoint me when it came to showing the doctor what she could do; she talked to the doctor, ran around the room, showed him how to type on his keyboard, identified various items in a book and even asked him if he had a “ninnie” a.k.a. Minnie book. He was very impressed! He even said “she gets no services anymore huh” I laughed and said no she is caught up according to our people! He was so happy with her and her progress he said “I will see her again in a year unless there are any issues.” So we will not be going back until January 26, 2011 unless we have any issues! I could not be happier! God is soooooo good!

And because they always tell me how cute my children are (they even remember their names) you can see the cuteness for yourself!

10/6/09

MomTV Recap – How Having Special Needs Children Can Affect Your Other Children

Parenting can be and sometimes is overwhelming. Add a disabled child, whether that child’s disability be physical, mental, learning-oriented or some other condition, and parenting can be that much more daunting. When you have more than one child, no matter how able or disabled each may be, there are strategies to handling parenthood to help the entire family form healthy bonds with each other and cope with the challenges that such a household can bring.Here is a list of the tips that we discussed last night on Multiple Moments! For the full discussion please watch the full show below!

  1. Get Organized and Stay on Schedule
  2. Provide Positives to Each of Your Children
  3. Teach Your Children How to Interact with Each Other
  4. Take Parenting Breaks and Get Other Help as Possible
  5. Find your non-special needs child a support system of their own

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Here is a list of the websites that I used in preparation for the show:

http://specialneedsparenting.suite101.com/article.cfm/sibling_rivalry_and_disabled_kids

http://www.siblingsupport.org/ (sibshops)

http://www.medicalnewstoday.com/articles/41409.php

http://www.drhessautism.com/challenges_of_families.php