IEP Meeting

As I prepared for the IEP meeting, I gathered as much information as possible to be as prepared as possible. Does it seem easier to ‘go into battle’ when you have a better understanding of what you may be up against? I was at least afforded the opportunity to know the school district’s ruling which gave me a specific area to research. We all know some of the best information comes from talking with someone who has ‘been there done that’ and so I was put in contact with a mother of a 12 yr. old Down syndrome son. She certainly had a better insight as to what I was facing and how to best approach the situation. I learned her son had originally begun his educational career with a DD (Developmentally Delayed) diagnosis but the older he has become; it has changed to an EMR (Educationally Mentally Retarded/Mentally Retarded) diagnosis. 12 years in to this life and the diagnosis doesn’t bother her as it once may have, say at my stage. She has come to accept the terminology but not the diagnosis. As I mentioned in the last post, I could look past the ignorance of anyone who needed to use those words for their own technical purpose as long as it didn’t hinder Harper’s transition and inclusion into Kindergarten. My acceptance of the terms on paper isn’t to be mistaken for consent of its usage in today’s lexicon. I believe the utilization of terms like ‘retarded’ are at best, outdated and inaccurate by their very definition. Spread the word to end the word! I was given ample time to express my concerns with the terminology, in regards to Harper’s case, and learned the diagnosis had become more ‘fine tuned’ a mere year ago. Had we have come into the system this time last year, Harper would have received the more appropriate DD diagnosis. I find it hard to accept and believe the state of MS could completely do a 180* turnaround despite all of the progress we have made in the realm of special needs. We know for a fact, it isn’t about a child with a disability not being capable of learning, we know it is a matter of unlocking the means by which they learn. Giving an EMR/MR diagnosis is just the same as taking the key and throwing it away! 

Each member of the IEP team was given a chance to state, in written form, whether they agreed or disagreed with the diagnosis. 4 out of 6 members, including myself, disagreed giving reasoning such as: “At this age, Harper cannot be sufficiently tested to yield results that would lead to a ruling of EMR,” “giving a MR ruling at this age limits a child to what they can do,” and “Harper’s young age complicates accurate determination of cognitive skills and Harper’s adaptive skills at this time are well beyond your standardized assessment.” It is mind boggling to me as I literally look at a child, sitting next to me, who can imitate and emulate concepts like sign language, patty cake, peek a boo and blowing raspberries on cue, yet have some arbitrary party diagnosing my child as unable to learn. This is the ‘mentality’ we need to correct and address. It isn’t over in terms of advocacy, however for now, it is Harper’s diagnosis on paper. If there can be a silver lining, it very well may provide more services for Harper, which will only further allow more growth and development.

                 

Therapy has begun again for Harper and this time, a more trandisciplinary approach is taken by the therapist of the Children’s Center. Much of what Harper is doing these days overlaps in terms of therapy, so they take a team approach rather than one on one. Her therapist will also be setting up her environment to elicit the movement or task they wish her to complete rather than total manipulation of Harper to accomplish the task. It is a very different approach however, we know that different doesn’t mean bad or wrong. I am every bit as confident in the therapist through CCDC as I was at Easter Seals AR or Kidsource. I owe them all so very much for getting Harper to where she is today and providing such a firm foundation, upon which we continue to grow and build. Her new therapist were more than complimentary as to how beautifully Harper moves and what all she has accomplished. They also, however, have already fallen in love with her and have warned about unexpected visits just to stop by and play!

 One method we are going to be utilizing with Harper is a form of treadmill training. This uses the movement of the belt in motion to help learn the proper gait of walking. Children with Down syndrome often don't learn the proper cadence of walking before the physical aspect of walking, which developmentally occurs in that order. This not only allows for a more sloppy walk, it can be responsible for a delay in cognitive and social development as well as motor development. Studies have now proven the treadmill training, generally practiced for 8 minutes a day, has decreased the time frame for when Down syndrome children first walk by almost an entire year. Although Harper isn't showing signs of anticipating taking steps, it is imperative we begin the training at this stage, as it is in the pre walking stage when children learn the rhythm of walking. What seemed to logically go hand in hand, walking and timing, really isn't so. What a fascinating aspect of development to learn!

Harper will also be placed back in a support system for her hips. You may remember the figure 8 wrap we did a few months back. She continues to 'W' sit and the hip huggers will allow for all the proper movement while constricting the excessive rotation of her hips. Why does this matter? Like many aspects of Down syndrome, the effects of a negative motor rotation may cause future pain, discomfort and additional ailments which can be avoided with proper development. The key is to correct these bad habits now. Preventative vs reactive. We will also be working on a proper stance. Harper is over pronating her ankles and feet and we want to establish a way to rotate them outward. This will widen her stance and distribute pressure more evenly thorough her feet, ankles, legs and hips. Placing an object just under the inner portion of her feet will force her to bear weight on the outer portions, feel the sensation of her outer feet and properly distribute her weight.

We have much to do but are excited about all offered Harper here in Hattiesburg. It seems each and every day, I learn of something new for her. There is no doubt we are here by divine design! Whether it be with her Playmates group on Mondays, the ARC Mother's Day out program or the kindness shown to us through her new therapists, we know there is no other place for our family. What immense peace comes with knowing you are right where God wants you!

From time to time, we do come in contact with those who mean well however just don't know what to say upon learning Harper is special needs or more specifically, Down syndrome. Almost always, the first reaction is for them to quickly find a relation to someone in their life with special needs as well. You hear things like, "My brother's wife's cousin's uncle has a mailman that delivers mail to a special needs person." Yes, they get that far out some times. HA! The next thing they scramble to do is give some sort of consolation for being the mother of a special needs child. For example, a lady in the parking lot the other day told me that one day, my daughter would one day go to Heaven and there she will be given a new body and then be normal. I quickly and most polietly told her that Harper was normal now. Once again, God doesn't make mistakes. So I ask you, what is your definition of 'normal?' Where is the line drawn between normal and not normal and who draws it? Harper may wear her differences a bit more outwardly but it doesn't mean she is any less normal than you or I. We must break down these stereotypes and embrace each other as being different, not in terms of normalcy. I pray Harper and I both can continue to aleviate any negative connotations associated with special needs children. Maybe we planted a seed that day which will continue to grow into thoughts of acceptance and inclusion. I'd like to think so.

Under Construction

The past few weeks I have been re-evaluating many aspects of my life. Moving around will certainly cause some serious inner soul searching. As I am trying to figure out what I am called to do, here in Hattiesburg, I began questioning the purpose of this blog. Who was really reading it and why? Was it simply an informative blog telling a story about Miss Harper Faye; was it a source of information to update all friends and family in a nice and neat package, was it a Down syndrome 101 blog or a ministry disguised as all of the above? I began wondering if I should continue it at all. Was I just a bunch of hot air? It seems everyone has a blog these days. Cooking blogs, crafting blogs, techie blogs, daily life blogs, etc., so why just one more out there to clutter the internet? I have also been praying for what God is calling me to here and have felt a strong pull deeper into the special needs community. However, the more I learn, the more I simply find I don’t know so why should anyone read about what I have to say? With all of these questions still pending, I decided to enter another post and at least update everyone from where I left off last. I eagerly went to my computer, turned it on, quickly typed in the blog address and encountered the log in page. Hmm, that’s funny, I don’t remember having to log in before (as my computer has all of that information stored). Nonetheless, I entered my email address and password and pressed enter, then nothing. I raced to type them in once again and still nothing. A few more frantic attempts but my entire blog was gone. Deleted. Nonexistent. I sat with the sinking feeling knowing I had just lost every detail, emotion and milestone I had captured for Harper since her birth. I began scrambling to recover any and all posts I could. A little voice inside kept asking why was I so committed to restoring 14 months of information if I had just been questioning its very importance. In a brief few seconds, I realized just how much this blog does matter and the need to continue to tell her story. In a mere 11 hours, I was able to recover all of the posts, however lost the blog address for good.


Could God have been trying to tell me something more in the midst of my floundering? If this blog was just a means for me to vent or a form of therapy, then why should I care if there was to be another post or not? The answer really is quite simple. God doesn’t give us any gift or talent, no matter how large or small, for our own pleasure. He gives them to us to use for His glory. “Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.” Colassians 3: 23-24 I believe Harper is a gift and writing is a talent and He wants me to share her and her story with all whom will listen (or read) as a way to show others His presence through all we may encounter on this journey. “Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning.” James 1:17 Harper’s story and my faith will be constantly interwoven in the fabric of our lives. I cannot separate the two.  And while I feel inadequate in many respects towards Down syndrome, I certainly know God does not call the qualified, He qualifies the called. With all of this being said, Harper Faye’s new blog will be ‘under construction’ for quite some time but as always, should you know someone else who may benefit from this blog, please do not hesitate to pass it forward. Whether it is a new mom to a precious Down syndrome baby not knowing how to fully accept such a gift, a child of God who has strayed from their foundation in faith or a lost lamb not yet knowing what they may need, I pray this blog be a blessing to them all as it has been to me. I have reposted the story from the beginning, on this new blog, however it will be a while before I am able to upload the pictures as it was originally. I was able to gain a lot of insight through this experience. When God gives you a talent, use it and don't allow Satan to place doubt in your mind or heart to think or believe you aren't good enough. Remember, God doesn't make mistakes and His special plan for your life will blossom and grow if you just plant it firm in your life.

Awareness at its Greatest

I'm dusting off the old blog and adding a new entry. Why the long pause in posts? It is only indicative of how well Harper has been doing. She has been trucking along with her weekly PT, OT and DT until the inevitable Askea news...we're moving. This time, to Hattiesburg, MS. As we began to break the news, a bit more slowly this time, we were met with some opposition however I believe it only to be out of genuine care and concern that Harper wouldn't receive the same top notch therapy and services as she had been in AR. My simple but thorough answer...God will never take us where He won't sustain us. See, God gave us this beautiful blessing and He was sending us to MS. There wasn't any doubt in my mind that He didn't know what He was doing and would only send us to a place full of possibilities and fulfillment for not only Miss Harper Faye, but the entire Askea family.

I will spare you all the intricate details of the move itself and fast forward to life for Harper in Hattiesburg. Even before our official move, we met some wonderful people, not by accident I am sure, who offered very beneficial information for services and programs for Harper and our family in the area. Hattiesburg is home to a local ARC, Association for the Rights of Citizens with Intellectual and Developmental Disabilities, chapter, www.hattiesburgarc.com/. One of the many programs offered by the ARC is a Mother's Day Out specifically designed for preschoolers with disabilities. It is staffed with a RN, retired special needs teachers and ample volunteers who just love being a part of these kiddos lives. Harper participated, for her first time, this past Thursday and LOVED it! The summer provides a fabulous program, the Abby Rogers Civitian Camp, a week long adventure for children and adults with significant disabilities, http://www.abbierogerscivitancamp.org/ We have met many of the volunteers who have raved about the experience. The University of Southern Mississippi is also home to varied programs for special needs children. The Children's Center for Communication and Development, www.usm.edu/childrenscenter, is housed on campus and the internationally renowned Dubard School for Language Disorders can also found there, www.usm.edu/dubard, which are all programs offered to Harper in the coming months/years.

The sentiment regarding Harper has been consistently echoed during our brief few weeks in Hattiesburg. Because of all this area has to offer children in the special needs community, there is a respect for and openness we haven't experienced so freely. The community is aware of these children and dotes on them every where we find ourselves; whether it be in the check out line at the local market or sitting in the waiting room at the doctor's office. People flock to Harper and have such kind and considerate things to say about her and children like her. I am refreshed by the warmth we have found here and the awareness the services provided has brought to Hattiesburg. We have, however, met one glitch in this mentality, which you will read about in the paragraphs to follow. There is always at least one exception to the rule.

 We were thrilled beyond belief Harper has been accepted into the Children's Center for Communication and Development, which provides an interdisciplinary team approach to the assessment and treatment of communicatively and developmentally delayed children, through the University of Southern Mississippi. The main difference with the CCDC, is they work closely with our school district to provide speech-language pathology, special education, audiology, physical therapy, occupational therapy, psychology, augmentative/alternate communication, at-risk followup, parent education, and a resource loan library, all with the common goal of incorporating Harper into Kindergarten at her appropriate time frame. I encourage you all to check out their website for a more detailed synopsis of what all they can offer Harper. There is also a link to their Facebook page as well.

The process of incorporating Harper into their therapy programs has been a bit more involved than when she began at Easter Seals AR, simply due to the extra layer of adding the school district into the process. We began with a meeting of a team including the CCDC director, therapists from CCDC, our service coordinator from First Steps, which is our local Early Intervention Program, and a representative from the school district. In a combination of their observation of Harper, a series of questions they all asked regarding her history and most recent status of therapy and my own list of goals I have for her through May 2012, they were able to compile the information and complete a comprehensive assessment team report. This report was submitted to the school district coordinator and then presented before a team to determine a diagnosis for Harper, which would serve as a guideline for her therapies. Two days ago, I received a phone call from the CCDC's director who not only gave me the IEP, Individualized Education Program, meeting date/time, but provided me with a bit of information to prepare me for what we may be facing during that meeting. It seems, the team from the school district has determined Harper's diagnosis to be one of an Educationally Mental Retardation rather than the most appropriate of Developmental Disability. I was asked how I felt about that diagnosis to which I responded, if the terms on paper meant nothing more to Harper than words on paper, I could look past the team's ignorance and accept it however, if the diagnosis would now or in the future have a negative impact on Harper's educational experience, I had a huge problem with it.

What is the difference in the diagnosis, you may be asking. The EMR diagnosis implies a child like Harper is NOT capable of learning. Simple as that. End of discussion. This would interfere severely with her opportunity to enroll her in the standard  public school system, as I understand it. I am shocked and saddened that this sort of backwards, barbaric thinking even still exists! Especially in an area so fluent in services aimed to tear down these types of stereotypes or absurd limitations. I can not speak for all Down syndrome children, but in reference to Harper, any one who has spent any time with her would surely tell you, she is most definitely capable of learning. Quite contrary, a diagnosis of Developmental or Cognitive Disability would imply Harper is very much capable of learning, only there may be a delay or a need for a different manner of learning, but she can and will learn.

I am calling on all of Harper's prayer warriors to pray for a corrective diagnosis to take place! During next Friday's meeting between the CCDC director, our school district's representative and myself, I will be given the opportunity to state whether I agree or disagree with the district's diagnosis. Although I have that opportunity, I have been prepared there very well may not be an alteration in such. I am believing and trusting God hasn't brought us this far and all the way to Hattiesburg, MS to allow any limits to be placed on Harper by any one person or team. God created this most amazing human being and has wonderful plans for her. It is my job, as her mother on this earth, not to allow any one or any thing stand in her way of the great works she will do! God doesn't make mistakes and we are all going to be surprised and in awe of Miss Harper Faye! I know I already am and this is just the beginning. As to how it happens exactly, I am leaving the details up to God as God is in the details. Whether it be a change of heart/mind by a member of the team before our meeting this week or through something I say during the meeting itself, I am trusting God to take care of it and handle it in His own way.

Will you please join me in prayer? We mustn't allow this type of thinking to persist. It is a very backwards mentality and I have already expressed, we are not about going backwards or meant to live in the past. It isn't just about Harper, but the many other children with Down syndrome who deserve the same, equal opportunities as any other child. To refer back to a former post, being an advocate for Down syndrome was born in me at the very same time Harper was born to me. Please make your friends, families, coworkers, pastors, congregations, etc aware that this is still a very real occurrence but it MUST end! I am asking you to pass this post along to any one who will join us as well. There is power in prayer and strength in numbers.

Thank you again from the bottom of my heart!

Pieces of the Puzzle

Have you ever found yourself working a puzzle, knowing all of the pieces were there, yet finding it impossible to fit any more pieces to create the bigger picture? I know I have. You pick up each piece, confident it must fit somewhere inside the border of 'end' pieces you have created but turn, turn, turn and nothing. You put it down and begin the process all over again with another piece. Then, all of a sudden, you pick up that same piece you have been working to fit for days and place it perfectly! It is a great sense of accomplishment as you see more of the big picture taking form. Down syndrome is a lot like that. It isn't that a DS child is missing any of their pieces, it is that we must continuously remind them they are there until one day, they fit perfectly together and a new concept is learned or physical milestone is reached. The moment is pure eureka! I see this so often in Harper as she continues with her various therapies. She has been in physical therapy (gross motor) for four months now, developmental for three and most recently, occupational (fine motor) for a few weeks. Each new concept introduced is taken the same way as that puzzle piece you are unable to fit. Where does it 'fit' in the bigger picture of what she is supposed to do? How will she be able to use that skill? When will we see it all come together? I watch and wait and then one day, she is rolling around like a little rollie pollie or propping herself on extended arms, even sitting all by herself. It is amazing when you see all of the pieces come together and create a bigger picture. She is beginning to work on the 'pieces' she will need to eventually crawl and ultimately stand/walk. Weight bearing skills with her legs. A bit premature now but that is how it is done. An introduction to the next concept, with hours of therapy to follow, until it is mastered as well. The big picture is very large, 3D in fact, and will always be expanding but it is so nice to see mini pictures within the big picture come to fruition. Her physical therapist mentioned discussing the selection of special shoes for Harper in the next few weeks. I am not sure if she will simply need a shoe like the classic Stride Rite walking boot or a special shoe which can accommodate braces, if need be. All things I will learn when we have that conversation. Other than therapies, Harper has been doing really well. She has encountered a few germs and has had her first experience with the nebulizer but I assume that comes with the territory of having her in the gym two days a week. She is quite the 'licker' and licks everything from the toys to the gym mat (YUCK) to the therapist. She tends to protrude her tongue a good bit more when exerted physically, as an over compensation of balance in many ways. I am sure as she grows and gains stability in her trunk/torso, head, overall balance, she will find less of a need to hyper extend her tongue, even involuntarily. Speech therapy will also aid in helping her learn how to properly control and place her tongue for verbal communication. This should be implemented in the next month or so. She is also just at that stage where everything goes in the mouth and is part of her exploration of the world around her. Food is a wonderful example of something she likes to go into her mouth as she is a very good eater. She will try most anything offered to her. Still no teeth, which is common in DS children, so we still remain a bit limited in what 'solids' we can give. Over the past few weeks, I have noticed a bit of laziness in her right eye, during feedings, and have made an appointment to have that checked with an opthamologist on Friday, April 8th. Her occupational therapist has also noticed a bit of weakness in her right side. I wonder if there may be a correlation and believe it may be a product of low muscle tone and easily corrected with some eye strengthening exercises. We did a bit of those with Hayden where we covered his stronger eye and played games which forced him to strengthen the weak eye, like catch. Harper tends to 'loose' control of her right eye when trying to focus in on something, for example her spoon while feeding, but is able to quickly correct it. Certainly nothing too serious or even noticeable to others but it is like everything else, catching it early on and correcting it, the better. Anything to help put her on a level playing field, I will do. In everything DS, early intervention is the key. I recently watched a news article which termed the piece as 'breaking development' in the area of DS research. Naturally, I was eager to watch and learn. I am certainly not seasoned in the world of DS research and development, but after watching, was surprised this was labeled as a medical breakthrough. It reiterated what I have already learned, which is the importance of therapy from birth in the success of these children and their future endeavors. The news piece also went on to state how the top doctors from around the country are conducting such research to help families 'deal' with Down syndrome. This comes across as something that is a burden, as in you deal with stress or deal with bullies or anything inevitable or an inconvenience but certainly does NOT include Down syndrome. I am not a 'politically correct' type person but find this terminology to be quite offensive. Ask any parent of a child with Down syndrome or anyone who has personally come into contact on a daily basis with DS and ask them if they have to 'deal with' it/them? I suppose, I will just have to 'deal with' mass media and their inability to accurately describe and report the news! I don't believe running around trying to omit every offensive word from our vocabulary is the answer but a bit more accuracy and expansion of our lexicon certainly wouldn't hurt. It isn't that I even expect everyone to understand what it is like to raise a child with Down syndrome or any other special need for that matter, but a little sensitivity in their comments that are far reaching would be appreciated. It is also why I believe I was blessed with my own special needs child, to help alleviate those misconceptions and ultimately help erase discrimination of anyone who may be 'different' than what society defines normal. An awful big task but I am up for the challenge and recruiting team members!

We got it!

After a much anticipated 154 days, we have Harper's Tefra number. What a victory! So what exactly does that mean? Like many other things, we learned about Tefra, a medical based coverage for children with disabilities, shortly after Harper's birth. It allows states to extend Medicaid coverage to certain disabled children. It also provides care to disabled children in their home, rather than in institutions. This information, taken directly from the AR Medicaid website, strikes me as very interesting as within the very definition of Tefra, it is intended for children to remain in their homes. Let's go back to the unsettling conversation I had with our Tefra Coordinator, who very vividly explained the determination of eligibility was to be made based on whether it would be more cost effective, for the tax payers, to keep Harper in the home or placed in an institution. By the very nature of the formal definition, her statement was completely inaccurate and uncalled for, to say the least. I have been encouraged to file a formal complaint, which I am prayerfully considering. I began my many and varied calls (to Tefra Committee, AR Attorney General, County Supervisor, Governor's Office, etc) simply to gain resolution of her case in attempts to provide Harper with every opportunity entitled to her. Although that has been accomplished, I can not allow Ms. Tefra Coordinator the freedom to speak to another mother in the same disgruntled manner and giving the same mis-information. Part of my job of being a mother of a DS child is to lift up and support her in every way possible, the other, is to be a voice for all children with DS and support all other mothers as well. So, while I had not intended to ruffle any feathers, I very well may need to pursue this issue a bit further.

While we are privy to any underlying medical conditions Harper may or may not have now, we don't know what the future holds. Having Tefra is one more added layer of protection for her in the event we have the need. Tefra will also cover therapy, which Harper is currently covered under the Early Intervention Program, birth through age three in addition to durable medical equiptment, oral care, etc.

Harper has continued with her PT once a week and will be increased to twice a week by mid February. That is overseen through the Easter Seals in Little Rock. She is continuing to show improvement in many areas but is beginning to present a 'frog legged' situation with her hips/legs. This means her hips are rotating outward, followed by her legs/knees. We are focusing on bring her knees to face upward when lying on her back. The current method of retracting her legs back into proper form, is to use the 'figure 8' wrap twice a day for an hour each time. I am not sure the effectiveness this will have but believe it may be the least evasive method of which to begin. I have also, through my own research, learned carrying her on my hip along with using an infant carrier in the hip/side position, may actually be counter effect to the wrapping. I will be addressing this with her therapist on Tuesday. For as many questions I am able to answer for friends and family through this blog, I generate just as many for myself through research. It is a continual learning process for me as well.

Harper also began DT (developmental therapy)on Wednesday of this past week. DT focuses on developing the motor, cognitive, language, social and emotional skills of a child. It is a more of combination of all the other therapies and it more familiarly refered to as 'play time.' Her therapist is concentrating on strengthening Harper's trunk muscles and getting her to sit upright. We prop sit and encourage elongating the torso and encouraging further development of her arm muscles as well. Building muscle tone in Harper's legs is also a priority. It is a constant challenge of strengthening one area while developing another for that next milestone.

We visited Harper's pediatrician for her 6 month check up too. The pediatrician reviewed the notes made by the geneticist, we say on January 6th, which once again commented on how impressed he was with Harper's tone and expressiveness. Also, during our visit, they were able to draw her blood, on the first stick, for her thyroid testing, we discussed beginning solids and finished with a round of vaccines. Along with those, we were able to receive the Synagis for RSV. When Harper was a few months old, I questioned being able to receive the Synagis due to the fact that Hadley actually had RSV, our extensive family history of asthma and the possible bronchial issues children with DS may face from even common colds. The lady from the pediatrician's office who oversees the coverage from the insurance standpoint, was very thorough in establishing Harper's case, however our insurance denied coverage since she didn't meet specific criteria like prematurity and no significant health issues. We accepted that decision and knew praying Harper wouldn't get it was the best option since the vaccine would have cost, out of pocket, on upwards of $6000. That was made several months ago and just a week prior to the 6 month visit, the very same lady gave me a call. She said she had been thinking about Harper ever since and the office had several Synagis vaccines left over from clients who had not kept their appointments for their children and since they would eventually expire, meaning they would throw them out, she offered them all to Harper! I immediately responded with a resounding yes and thanked her profusely for remembering our precious Harper. So, Harper has received the first vaccine and will continue to go in to the office every 28 days for another through April. God certainly continues to work in some of the most amazing ways and through some of the most amazing people!

The day after Harper's check up, her nurse called and left a message on our home voice mail stating Harper's thyroid test results came back normal. Once again, we will have that rechecked at her 1 year visit and then annually after that. The following Monday, nurse Amy made it a priority to speak with me personally and took time out of her very busy day, it is cold and flu season after all, to attempt reaching me again. She successfully made contact with me just to make certain I had received her message from the previous Friday. Aren't there some of the most amazing people in health care today and what wonderful ways Harper is effecting people. She is such a special little girl!

Since receiving the green light to begin solids, we have started with brown rice cereal (Super Porridge) and then incorporated bananas. She is doing amazingly well and a brief visit by the speech therapist on Tuesday reinforced how well she is taking to being spoon fed. She isn't showing any aversions to textures in her mouth, which is wonderful. We do help train her with proper placement of her tongue, keeping it in her mouth, because her initial reaction is to thrust it out. Keeping it in allows her to properly move the food from the front of her mouth, to the back of her mouth and down her throat rather than giving me back everything I put in :) It is time to go out and dust off the ever faithful Super Baby Foods book by Ruth Yaron. I have used this through Hayden and Hadley, making and preparing my own baby food in the home. I am so excited as Farmer's Market season is just around the corner too!

In conclusion of this post and another chapter of my life, I must add how I have made a very difficult decision to leave my position as Children's Minister and come back home full time. Just as I felt God's calling me into the ministry at Bryant FUMC, I feel His calling me back home to this wonderful ministry He literally placed in my lap. In just one day's time, the amount of work I do with Harper, in addition to her more formal therapy is amazing yet very time consuming. I have been given only one chance at this and I must give it 100%. Not only do I need to be available to be an advocate for Harper, but for all children with DS as well. As I have said before, I do believe God gave me this wonderful gift because He knew I would do nothing less than everything in my power to ensure her success. With that being said, I have officially submitted my letter of resignation effective March 6, 2011. Such a scary move in a scary time but if I could not follow God's plan for my life, I would not be a faithful disciple and what an unsurpassed feeling of peacefulness comes with knowing your are following the will of God in your life.

The down side of Downs

As I have mentioned in previous posts, we have encountered some of the most amazing people these past six months however, there are always exceptions to the rule. Through the guidance of our various support groups/organizations, we have undergone the tedious process of filling out mountains of paperwork, applying for additional services offered to children like Harper. These applications are monitored through agencies such as DDS and DHS, where we are assigned a specific case worker to follow our application through the system. Upon my most recent interaction with yet another representative, the Tefra Coordinator, I was appalled and left utterly enraged by what she offered up as information. The phone call I placed was simply made to verify the status of our application. This was submitted on September 1, 2010, with the general time frame for approval being 3 months. As the three month marker approached, I began making weekly calls to offer any assistance from my end to ensure swiftness of completion. The application had made it through the first review team, the Medical Review Team, by mid December. This team of doctors verified Harper was in fact born with Down Syndrome. It then went before the Tefra Committee for their review and approval, where it currently sits today. Also, keep in mind, we have been strongly advised not to pay on any of Harper's medical bills, as once approved, Tefra will retro pay from birth.This means I also make monthly phone calls with each statement received to extend the hold status of her account.

I was making my weekly phone call last week and since our Financial Counselor, who submitted the original application and has been working the case, was out of town, we were given the Tefra Coordinator's name/phone number as she is also familiar with Harper's case. I quickly gave a brief introduction and then followed with the intent of the phone call. I was immediately met with an attitude of noncompliance as not only did she not have any updated information, she had no intentions of obtaining any for us as well. She also provided that the Tefra Committee would be reviewing our case to determine whether it was A. more cost effective to have Harper raised in the home or B. cheaper to have her placed in an institution! What barbaric words uttered from her uncompassionate mouth but oh how the words just rolled off her tongue like water over Niagra Falls. She further provided, in her most snarky voice, that after all, it was the tax payers who would be ultimately responsible for those medical bills. I immediately jumped onto my high horse and told her to stop right there....First of all, what right did anyone but Jacob and myself have to determine where Harper would be raised and second, I am a tax payer as well who furthermore would be paying a monthly premium for this coverage. There is no "taking advantage of the system here," as she so obviously implied. I also explained this had been drug out long enough and ample time has passed for a decision to be made. Given her reasoning, it should be a very simple decision at that, with no aparent health issues for Harper. I knew the conversation had taken a nasty turn and left her with this thought...I was a mother who would do anything for her child/children and would continue to make my weekly calls until this was resolved. I assured her she would do no different if she were in my shoes. She muttered back that she, in fact, had been through the Tefra process herself. What?! How could any mother having been blessed with a special needs child and who has truly gone through the arduous process of filling out paperwork only to wait and wait, be so numb to the feelings of a fellow special needs mother?


The audacity this woman had, in this line of work, claiming to have been through what I have, and to be so cold and calloused, continued to haunt me. I picked up the phone again, this time to put in a call to another parent of a DS child. After explaining my predicament and the unnerving converstation I had just experienced, he said I had been through enough and it was time to make a phone call to the govenor's office. The following day, that is precisely what he did on Harper's behalf. I spoke of the instant and unbreakable bond we parents of DS children have when I visited Sarah Palin, and it was no different between myself and this particular father. That is what you do when you are a parent of a special needs child, you help, console, lift up, encourage, fight for, assist, pray for, whatever it may be, all the days of their lives. Makes no difference the need, we are all in this together. I thanked him for his time to listen and lend advise as my phone call had been unexpected. He reiterated that is what we do, we drop everything to listen and help each other.

I do not know if Mrs. Tefra Coordinator truly is the mother of a special needs child but if I were a betting person, my bet would be on no. The need and desire to help another parent of a special needs child is born in you at the very same time your child is born to you. We are not expected to go at it alone and although we may not have all of the answers, we can figure them out together.

It's all in the genes...or is it?

Yesterday we went to the most anticipated genetic testing appointment without having anything really to prepare us for what to expect. I had unrealistic expectations there would be blood drawn and they would send us on our way as we waited weeks, and possibly months, to learn the results. A more detailed analysis of her chromosomes was what I assumed they were wanting to studying. We checked in and they informed us we would be there a while, so make ourselves comfortable. The litany of weight, measurements and past medical history was conducted before leading us into another room to wait for the geneticist. Dr. Adolfo Garnica entered the room and began asking his own set of questions for a platform on which to begin Harper's monitoring. He then took Harper for a physical examination, to which he proposed a clean bill of health. He was amazed by her strength and great muscle tone, not to mention what a vocal and expressive child she is. Is that due to Harper being on the higher functioning end of the DS spectrum or the wonderful therapy she has been receiving since 4 months of age? Probably a pinch of the this and smidgen of that, along with a dash of love from her family! It is a total package.

I also was able to address any possible neurological issues, brought up from the most recent Easter Seals Evaluation. As soon as I began discussing the implication of neurological trauma at birth, present in the slight angulation of the right side of her head and favoring of her right side, the notion was immediately dismissed. I further mentioned that as a mother, I hadn't seen anything which would lead me to believe there had been. She was developing, growing and hitting milestones not to mention the absence of seizures. It was a relief to have that confirmation and another indication that mommies do know their children best :)

The doctor left the room and a genetic counselor, Carla Bell, MS, CGC, entered. She began by stating her surprise to find Harper off the DS growth charts. Yes, Harper, who was in the 90% for her height and weight at 4 months, is now off the charts. This simply means Harper is larger than a typical DS child but is quite average when compared to Hayden and Hadley at this very same age. She already had all of the information she needed from Harper's rapid chromosomal screening done at birth and no further testing would be needed at this time. I asked the question I most sought an answer for, which was the possibility of Harper being mosaic. To back track a bit, Harper's discharge papers, from the NICU at Baptist, noted her diagnosis as 46 XX + T21. Being that DS would have been coded as 47 XX + T21(25), coupled with her non present health concerns, that began my research into mosaicism. Very interestingly, the counselor explained how Harper's blood is simply one indication of her genetic make up. In that, the chromosomal analysis found, of the 25 chromosomes they studied, to be conclusive she is A-typical DS. However, that gives no indication of what her organs, such as the brain, or other body makeup is categorized as. So, could she be mosaic, sure, but it isn't anything we will ever know. Once again, knowing she has DS is all the information we truly need as Harper is her own individual self and will grow and develop in her own way, just as Hayden and Hadley are. We will see strengths and weaknesses no different with Harper and will address them in the same way we would any other child. So, I believe it is safe to say, a diagnosis such as DS, is such an open ended one. I must also address the original diagnosis of 46 XX + T 21 is thought to be a mistype from the hospital. Oops! Had it been mosaic, the code would have read 47 XX + T21 (25) + mosaic (#/% of chromosomes effected). It is still very interesting to me and the more I can learn, the better equipped I will be to lend my 'expertise' to the next family.

Carla also mentioned how the state of AR is unique in that it is one of only three states in the US which currently provides monitoring for individuals with DS into adult hood. Formerly, adults with DS were either institutionalized or not living into adult hood due to the varied medical conditions typically associated with DS. Clearly, there is much work to be done in the advocacy of DS! Harper will be followed annually by Suzanne Huetter, APN, in addition to her general pediatrician. This allows for the most up to date and conclusive medical coverage for children with DS. For example, children with DS frequently have instability in their C1 and C2 vertebrae. Suzanne Huetter is aware of this and will be testing Harper between the ages of 3-4 years. If instability is found, activities such as horse back riding and diving, would be off limits to Harper. We certainly hope that is not the case as we have already begun researching hippotherapy and the many advantages that come with this type of therapy. As defined by the American Hippotherapy Association, it is the movement of the horse as a treatment strategy for promoting physical, occupational and speech therapy in children with disabilities.

Another aspect of DS Suzanne will be monitoring is Harper's thyroid. A thyroid screen was preformed at birth, where everything resulted in a normal functioning thyroid. This will be rechecked at 6 months and 1 yr, followed by an annual checking there after. The nurses attempted to draw blood for this yesterday but were unsuccessful. The first attempt was in Harper's right arm, where she remained as calm and cool as a cucumber. The second, in her left arm and third, in her right leg weren't so smooth. They even sent for an additional nurse to give it a try but only left us with the option of going in her scalp. Jacob, the passive and quiet one, immediately stood up and said NO, that was enough sticking his baby for one day! It is almost more than you can take, hearing the cries of your child, even knowing it is for their own good. An order will be written for the blood to be drawn from her pediatrician's office at her 6 month check up, at the end of this month.

We were very pleased with the visit, even if it hadn't gone quite as I had anticipated. I suppose the number one thing to keep in mind, when having a child with DS, is knowing her genetic makeup is no different than knowing her blood type in some ways. It provides minimal information and what we truly need to know about Harper, we learn every single day from her. There isn't one book, test or study that can map out Harper's future no more than it could yours or mine. We take each day in stride and always strive for a better tomorrow.

Harper will also increase her PT to twice a week and incorporate DT once a week as well. I learned the importance of consistency of therapy over the past two week holiday we had. As much as Harper has progressed, the potential for regression can set in all too quickly the more time is allowed between her visits. Repetition and consistency are two key components to success. It will add a few more layers to our already busy week, but I wouldn't have it any other way! Thank you to everyone for your continued prayers and support. I fully believe it is also contributing to Harper's success. We love you all :)