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Mar 18
1st Annual Wheelchair Relay

Who: both persons with disabilities and nondisabled persons. We will have wheelchair relays with partners to assist those that have severe physical or mental disabilities. We want all to be able to participate and have created events to do so.

​Where: Jordan Mathews High School, Siler City, NC

​When: June 26th from 8:30am to end of events.

​Pre-register by email with Holly (Holly@projectproud.org), Kelly, or Shannon (sdgray@aol.com), or call 919-742-5525 and ask for Holly Rickman.

To register, please download and complete the Registration Form.​

​** Disabled persons may bring their own chair and pay an entrance fee of $15.00 which will include a free t-shirt. Non-disabled registrants must purchase a chair that will be donated to the “Joni and Friends organization” for the cost of $240.00.

That cost will include entrance fee, free T-shirt and advertising for you business or organization, at the track, on the program, and thereafter, in the form of a formal public “thank you”.​

For those not wanting to openly participate but want to be a supporter of the event we also will acknowledge, advertise your support at the event and thereafter starting with your donation of $25.00.

​What a wonderful way to advertise, be civic minded, donate to TWO wonderful causes at once, and get to write it off your taxes!!!

Nov 03
Sophie’s Update – October 2009

We continue to be mesmerized by the changes and growth in Sophie. She is crawling! We were told to delay her walking by her PT so that she would be forced to move through all the developmental stages. We however since changed that protocol and now going to P/U her AFO’s which are leg braces that are molded to her foot and will help her develop proper form when walking. They should in turn help her to walk sooner by months than she would typically have on her own. She is making a bunch of new syllables and has said “Ma” and “Da”.

I know to some with only a typically developing child you think how sad a 16 mos old child and this is where she is at? And yet I think you should all get to experience what our family has. It heightens your joy and appreciation for everything. Every little development is incredible and all the little nuances of life have been enhanced. My relationship with God, my husband, my children, others is all spiritually enhanced. You could not pay for the kind of inner peace I have developed an incredible constant joy in my inner person and yet sometimes others still feel sorry for me. Why?? Those are the ones that I know truly do not get it. You have but to look at me and you see a person who has gone through an incredible emotional challenge and has come out on the other side transformed. It is a difficult thing to even explain to someone who has never had a deep trial in their life in which they have had to reach out beyond their own strength and lay their head in the Lord’s lap and ask him to take over. I am an incredibly strong woman in ways but I had to and it was the beginning of a better life for me. So never feel sorry as I do for those that do not have this kind of inner knowledge.

​So at this I am going to conclude this update with Thank you Lord! I did not always understand why? But I do so now!

Jul 26
The Button Challenge

The button challenge is something that I issue after one of my Open Forums on “special needs”. In these forums we learn about “special needs” and how we can educate others to be more empathetic to those whose needs present now and know our need may be just around the corner.

The challenge: Wear your button for a week. Educate others that ask “why you are wearing it, and what does it mean”. If it is hard to wear because of the label it represents then that only teaches empathy for those that do not have the luxury of being able to take their label off at the end of the week. Posted below are some of the experiences that others have had while wearing their button.

May 27
Miracles Do Happen

In the beginning my prayers were difficult to formulate because I was always a “let his will be done” type gal as he knows best, right? Difficult because I wanted different results than I was seeing. Then I began to hear more about “praying without ceasing” and praying for your heart’s desire. That made the difference in my requests for my daughter from God. I began to pray and still do for complete healing and her happiness with the knowledge that I will accept his will.

​Since that change in my prayers, and faith, miraculous things have been happening. Oh, things like at our recent visit to the Opthamologist we were told “Happy endings, I project normal vision for her”. My husband and I looked at each other in shock! We went from thinking we would be getting a white embossed cane for her birthday to thinking that she would have near normal or normal visual acuity. It took me seeing it on the eye report a few weeks later to truly absorb the awesomeness of God manifested in our daughter. I then got the updated Neuro report where he used words like “remarkably benign” to describe her EEG’s. We had also received a second opinion from another Neuro at a leading hospital and our daughter was always seen as unusual as only 25% do not have the typical chaotic pattern on their EEG’s but have other irregularities and she has nothing. What category does that put her in? God’s category of “miracles”.

​I am watching her develop now with the seizures under control in leaps and bounds. Seizures controlled. Read that again. Do you know how hard it is to get a medicine that controls them? Let alone a medication that is not even known to be the strongest in treating these spasms. We also did not even have to go full strength before they stopped. Awesome. There were times when I wondered inside if she would crawl or walk and now I am wondering “what” and “if” she would need for support services in school. We have a way to go to get her caught up as she now in a position to develop since her spasms as controlled. However, she astounds her therapists all the time (as only now can they reveal). I do not project where she will end up but just rejoice in her gains and potential. As I write this joyful tears are emerging from my eyes. I want you to gather hope from this for yourselves and to see that nothing is too big for him to change if it is his will. Never stop trying and believing.

​God bless everyone of you!

May 27
Update May 27, 2009

We have experienced many positive things since our last entry to Sophie’s story. Sophie has been seizure-free for almost a month now. That is huge for us! We will get a second opinion from another Neurologist that specializes in seizures to fortify ourselves with information. However, due to the control of the spasms, we are noticing vast improvements in her developmentally without the seizures robbing of the ability to develop. We FINALLY, after 3 attempts, (2 ear infections, and 1 hospital stay) had her ears checked by an audiologist and she has perfect structure. One less thing to worry about!! She is a wondrous miracle to us. Pure sweetness and joy oozes from her every pore.

​We will be having her 1st birthday this Saturday. We will have all the wonderful people there that have supported us through this tough year. We thank you all for your continued prayers, and support as we have pushed on through all this. When the devil works diligently on you, you know you are in the right hands.

May 05
What is “Special Needs”?

And why the continued stigma in 2009?

​“Special needs” definition per Merriam Webster is “the individual requirements (per education) of a person with a disadvantaged background or a mental, emotional, or physical disability, or a high risk of developing one.” Well goodness, that sounds like just about everyone I know in one way or another.

Take a moment and think for yourself! Do you know anyone with an anxiety disorder, schizophrenia, bipolar, disadvantaged background, auditory, visual, diabetes, obesity (metabolic), pituitary issues, scoliosis, rheumatoid arthritis, stroke, heart disease, cancer, ADD, ADHD, autism etc., etc., and then of course the obvious syndromes, mental delays. Are you feeling the same way I was. Well aren’t we ALL at some point “special needs”? The only difference is where on the continuum you fall.

If mental delays are ones sticking point, then know this. The average IQ is 100!! Do you know what population falls below 100??? 50%. That is a whole lot of America running on brain power that we consider to be lower tier. But look how fabulous our nation is. The belief that IQ denotes everything, overrated???

Why do we have these stigmas? At a quick glance, my opinion is that downward comparisons make us feel better, and that we are just weary of what we do not understand as a nation. What is a downward comparison? Well, let’s first discuss upward. These are the ones that wreak havoc on our self-esteem “she has a bigger house, smarter kids, better job, etc. Downward one’s make us feel better about ourselves. For example, he doesn’t make as much money, I am prettier, more intelligent, my kid’s are more athletic, etc. Get the point! If you are not feeling so good who is the ultimate downward comparison but a child that is inflicted earlier, rather than later, with a “special need”. This is mainly true for a child, parents/persons with low self-esteem. Note: this is often not something we could even admit to ourselves, but, “if it does not apply, let it fly.”

Now, that being said, I do not think this is the pervasive thinking among MOST individuals. Often many are just weary of the unknown. There is a mystery or aura around what we do not feel comfortable discussing or addressing. So, we create our own notions to fill in the blanks, fall back on old stereotypes, or just continue to have discomfort with the whole subject altogether. Who can blame anyone for this? Who knows what the correct thing to say to a person who has not had cancer, a death of a child, and YES a child with a “special need”, etc? NO ONE!! However, understanding the “Why’s” are crucial to rewiring the way we think about a subject. Now that we may have some understanding as to the “Why” let’s look at what you can do about it.

Top Ten Appropriate Things to Do or Say:​

  • Keep the contact. It may be uncomfortable for you but these families need more than ever your support. Ask them if necessary, what would you like from me right now? Or I am at a loss as to what to say, or do, but want to help.
  • Compliment that child that is obvious to the eye a child with “special needs”. You goochy goo with the other children, right? Do the same with this child. You can tell them their hair is pretty or you like their outfit. We all have beauty if you look. Even if they do not visually understand. The mom will understand kindness!
  • Try to refrain from using sentences as though you “do” understand. You cannot and that is OK!! Who could till you walked a mile in their moccasins.
  • Compliment the parent on their strength in dealing with this. It is all in the wording. We know you probably could not or would not want to. That is why God gave them to us. We are good with this. Now give us the credit we deserve for our extra love, patience, empathy and strength. Imperative qualities to have once you learn about your child’s need and thereafter.
  • If others ask about Cindy’s “news” do not fill them in. It is Cindy’s story and there is healing in letting her be the one to share rather than feeling like they are the new gossip in the town.
  • Listening without comment is OK. There is a grieving process that takes place forever. You go in and out of it as your child misses different milestones or other expectations are dashed. We just need to release these feelings sometimes.
  • Teach your children confidence in approaching a child that has a “need” by modeling to your children this behavior. Hi ______, Wow, I like those new shoes you have! Or wow, your mommy did your hair so pretty today! (bonus, double compliment!) You get the point!
  • Teach that differences are just that. We are all different in this world. Language, color, weight, height, culture, and yes, sometimes physical malformations. But God loves us all the same and our insides are all beautiful. You would not stop loving Grandma because her legs did not work anymore.
  • Changing our thinking from worldly superficiality to one of love, compassion, and empathy. Beauty within rules over beauty from without. One endures much longer!!
  • Compassion, just because you child does not present with a need now, she may later IE. Juvenile diabetes, car accident, childhood cancer, etc. Alter your view now so you are not humbled when you have to alter it later. One day we all will have a “need”. The sooner we learn “no big deal” concerning “special needs” the quicker we will have acceptance for ourselves down the road.

** Feel free parents of special needs children to post some of your own!!

Apr 24
Sophie’s Story

Sophie was born on May 31st 2008. She weighed 8lbs 2ozs and had 9’s for her apgar scores. She was often commented on as being a petite featured, little, doll with pretty eyes. Little did we know her vision would be one of the first signals something was amiss.

​At around 2 ½ months of age it was noticed she was not tracking. She did not look when I walked into a room, and she did not smile when my face was before hers. All very hard as these are a mothers “firsts” in her bond with her child. She would go to anyone. It broke my heart.

​At around 4 months of age her “morrow effect” type reflexes were noted as abnormal as she in my mind should no longer have been doing those. This could not be considered abnormal yet since the possibility for the “startle reflex” still existed. Her vision had become even more worrisome at this point.

​At 6 months of age, she went for her well baby. We were also getting family flu shots so it was quite hectic that day. I did not get all the answers I wanted so back I went days later. I had her pediatrician look more closely at her eyes and development. She too, at this point began to have suspicions that something was wrong. She also noted no dilation while the overhead light was off and another light was shown in her eyes. So we were referred to the ophthalmologist.

​At the ophthalmologist’s we found out she had Optic Nerve Hypoplasia. It was presented as a visual impairment that occurred because the optic nerve which normally has 100 million nerves connecting from the eye to the brain was less some unknown number. We went home thankful she was not blind as we feared and instead was placed in the mild range. We were also told she could gain back vision as the brain developed. It could take 6 months or more it was anyone’s guess. So we thought she would be the gal with the “strong contacts” and breathed a sigh of relief. We were also referred for an MRI. at this point and that came back normal. Not so bad, really. We were then referred to the Neurologist as a precaution for the “morrow effect” type behaviors. Few concerns were noted and we were sent home to come back in six months. However, an EEG. was called for “just in case” of seizure activity. We were also referred to genetics and an endocrinologist. She had blood work drawn for a chromosome study and hormone level baseline. Since they were relatively uneventful specialist visits I will not dwell there. Then came the time for her EEG. We arrived at the hospital not knowing what to expect. We waited in the sleep center, and after a few minutes they took her back and marked up her head with red X’s, put glue on her head, and stuck electrodes all over her head. She was swaddled up so she would not fight while they were doing this. We concluded that test, and went home mentally exhausted. How much more? Little did we know.

I called and called “Neuro” leaving message after message for the results. I was told the typical turnaround was 48 hours. I was now on the seventh day when the phone rang and a resident told me she would have contacted us sooner if the results were abnormal. She was calling the test normal. I was very frustrated as the neurophysiology report concluded it was not normal as they could not rule out sucking artifact. If you could not rule out the abnormality between a pacifier and a seizure (and that is what she was being tested for) how could you call it normal? I later sent an email to the resident and asked her to send it to her attending and have him read it, and tell me, if with all certainty he could read it as normal. I will never forget his first line back. “This is not normal”.​

I had their attention and now we went back for an ambulatory EEG. She was hooked back up with all those electrodes, but this time they used stronger glue that takes a nail polish remover type solvent to get it off. We then brought her back home with her EEG equipment in a little backpack and her head wrapped up like a “swammy”. (We have used humor all along and it has saved our sanity.) My two year old swore she stole her backpack and immediately tugged to get it back. After we found hers I was on guard for 2 days and never let an eye waver off her. Very draining. We went back and had the electrodes removed two days later after my mother viewed a spasm or “event”.

​I emailed in the meantime to tell the attending that I saw an article that looked “eerily like Soph”. It was an article on infantile spasms. The article scared me to death. He emailed back and told me he did not see the characteristic hypsarrhythmia pattern on her EEG that went with that condition. Her full EEG results came the next day from the attending and it showed spikes in her left occipital region but nothing consistent with infantile seizures or any kind for that matter. The attending then asked to see a video of her. It arrived two days later on his desk. He called that afternoon immediately after its viewing. He told me he was “convinced” my Sophie had infantile spasms. It was a bittersweet thing to hear from his mouth. In one hand she could now receive treatment for her epileptic condition, on the other hand, she may be mentally delayed for life.

​All evidence points to early intervention being a key part of the best prognosis. I mourned the time lost to the search, when she could have had treatment. We were admitted on “emergency admittance” two days later. We arrived only to find a bed not available for an hour. I respectfully disputed the fact that they should not call families to the hospital if the beds are not ready as well as the lobby is not a place for sick children. Ever hear of Staph infections??? Then I asked if we would get hooked up that night. They said they did not know it was a 50/50 chance. I did not want to pay a very costly overnight at a hospital on the chance she would get treatment that night. So the nurse in a whispering “side of the mouth” kind of way said we would be a “roll over”. This meant we would receive priority for a bed the next day and they would call around 2:30 pm we were told. She showed us the discharge schedule for the next day and we went home confident of a bed. After hearing nothing the following day, I called the hospital to ask why we were not called. She said there were NO beds available. I told her we were assured there would be a bed today. Also that my daughter had infantile spasms and at this point she was going untreated and it was on her conscience!! I hung up the phone and cried my eyes out as there did not seem to be ONE BIT of compassion in that women’s voice for my child or self and I was so very tired of fighting. Didn’t anyone care??? I received a call back 25 minutes later. A bed had “magically” appeared and we could check in and there was a 99% chance of hook-up if we could be there before 8pm. We got their after 6pm. We stayed 3 nights with me by her side constantly except for showers, food, and bathroom visits. I thought I was going to develop a neurological condition.

​We were released on that third day with no spasm. We got her unhooked and took her down to the lobby heading for “home sweet home”. She had a spasm in the lobby while David was driving around to pick us up. I watched for ten minutes and thinking how powerless I felt in that moment. I had become hopeful after 3 days of no spasms and now they felt dashed. We would start the B6 therapy and then we would give a week maximum. If we did not see improvement we would use Zonegran. I am at this moment waiting on her prescription. My heart hurts watching each spasm knowing there is medication and it is waiting for her in the pharmacy.

Afterword: Despite all that we have been through. We have had some ups and downs but never stayed down. We do not believe that God makes mistakes. Our lives were richer and more blessed the day she joined us. We have already seen some blessings come from this tough time. We look forward to what the next chapter holds for us as live each day in that day. We will continue to keep you posted!​

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