60 visits…..are you kidding me?

by Karla Barnett on January 22, 2012

For the life of me, I will never understand how or why insurance companies limit the amount of therapy visits a patient can receive. What is the number based on….other than the old might dollar!!! Therapy services allocated per year, at least in my case is 60 visits. The number includes occupational, speech and physical. If my son required all three, which he did at one time, he is only covered 20 weeks out of the year. What am I suppose to do the balance of year? What are my options?

• Cover the cost out of pocket at $1,000/week
• Determine which therapies are most important and attempt to perform the others on my own

Not only does the insurance company dictate the # of visits but they also determine if the treatment plan is required. Keep in mind, they have never seen my son, nor do they know his history but I have to fight tooth and nail with a customer service representative, who is not qualified to make the determination. As if I don’t have enough on my plate, I have waste my time pleading my case for his treatment. Last year, the insurance company tried to deny all of his therapies indicating they were not medically necessary. Really????? He has very little speech and struggles with fine/gross motor skills and has sensory issues. I consider those reasons medically necessary. Oh and by the way, I have a script from my doctor deeming the treatment medically necessary. I believe that trumps your decision. What a nightmare!

I challenge anyone from the insurance company to stand in my shoes for a day and then provide me with their decision. I’m sure if a few of the executives had special needs kids, requiring therapies, the criteria would be a little different. Don’t get me wrong, I totally understand the business end of things but not when comes to interfering with my kiddos progression.
I do realize that I am one person but this is a hot topic for me and MANY others and I plan to add it to one of the items I add to my list to take on!!!!! As always, I’m looking for your feedback and solutions?

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Picky Eating SAGA!

by Karla Barnett on January 17, 2012

I really want my son’s therapist to move in with us. Meal time has truly become a stressful time. While she makes feeding look easy, I continue to struggle and, literally, want pull my hair out. She is stern, compassionate, structured and persistent. Ana is going above and beyond to provide me with every tool and technique I need to make progress. A good therapist specializing in severe feeding and sensory issues is key to making your child successful!

Today was the first day I was able to sit in the observation room, and watching her go through the process made me laugh and almost cry. We video recorded today’s session, and plan to watch the footage with Jonathan. In addition, she created a document spelling out the techniques. One thing we were doing wrong is introducing too many foods and utilizing the process at breakfast, lunch and dinner. The therapies will now be conducted between meals and snacks. We have selected four new foods to try until he comfortably eats each one.

During today’s therapy, he almost ate an entire small container of applesauce and a few bites of deli turkey. He had an easier time with the applesauce than with the turkey. When she presented him with the turkey, I could see the fear in his eyes as he struggled to bite a small piece. He continually rubbed his head and pushed it away. The turkey made him uncomfortable and FRUSTRATED.

Since we began implementing the process, my son has dropped yogurt from his food repertoire, which means he now only eats pretzels, Nutri-Grain bars and turkey bacon. I’m thinking he is rejecting the yogurt due to a recent change (removal of high fructose corn syrup in the yogurt formula. One step backwards, but, hopefully, two steps forward. I continue to do my research on oral defensiveness and really have a problem putting my arms around this issue. How can food be the enemy? I’m looking forward to him telling me how it makes him feel one day.

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Mommies little helper!

by Karla Barnett on January 12, 2012

Ever since we decided to take on picky eating and utilize the tools and techniques provided by Jonathan’s therapist, we quickly realized that we have additional help. As I explained in an earlier post, the process consists of going through a food hierarchy which will eventually allow my son to be comfortable with new food choices. With each new food choice, the goal is to get him to touch, lick, kiss and eat. Sounds simple enough but it’s a struggle if you have sensory issues and you view most foods as the enemy.

My 23 month old daughter became quite interested in this eating technique. We observed her touching and kissing her food when we prompted her brother to. After the first full day of utilizing the feeding process, Jazzy picks her waffle and hands it to her brother and said, “Kiss the waffle Jonathan”. By the end of the meal, she was placing the rest of her food on his plate saying, “here you go Jonathan”! Now while we thought this was a nice gesture and realized she was trying to be helpful, Jonathan did not quite see it that way. Her assisting us in the process made him extremely frustrated. He perceived it as her teasing him.

It has been a full week on the new eating plan. I must say, crackers are still out of the meal plan and we will now utilize them as a reward. He has touched and kissed 5 new foods! I spoke to his therapist and she suggested narrowing down the food choices to 5 instead of offering him something new each meal (She is able to successfully get him to try new foods). This will allow him to become comfortable with the texture and flavors. If he eats the food choices offered, he will be rewarded with a cracker. Next week, we will begin videotaping his therapy sessions and watch each session as a family.

Today, day seven, has proven to be the most frustrated I have seen him since we’ve started. I have to keep reminding myself that his eating will improve, and I will look back at these times and realize it was a step we had to conquer on our journey.

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My picky eater surprised me!

by Karla Barnett on January 11, 2012

Just when I was feeling a little defeated, my son gave me the best surprise this morning. I decided to try turkey bacon for breakfast. I was expecting a fight but what did I get…eating with a smile!!!! It was obviously good to him as he was humming after each bite. To top the morning off, he requested two additional pieces. Talk about a mommy on cloud nine and performing the happy dance for my son!!! I’m looking forward to the day when my little man eats a plethora of new foods. Day seven of the picky eater battle has proven to be victorious!!!!

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That was then, this is now!!

by Karla Barnett on January 8, 2012

Connecting with other moms, on a similar journey, has been extremely therapeutic for me. I once had a mother tell me having a child with special needs is like being in a secret society. Initially, I did not agree with her, but the more I thought about it, I changed my opinion. Think about it, a majority of your friends don’t have the type of issues we deal with!

1. Weekly therapy (occupational, physical, speech and sometimes behavior)
2. Integrating therapies into your life
3. Sensory integration issues (vestibular, oral, tactile, etc.)
4. IEP’s
5. Consistently rejecting friends and family’s invitations because you don’t want to explain your child’s quirky behavior
6. The list goes on!

I’ll never forget the first person I spoke with early on in my journey. Not a mother, but a man, and he was my boss. I never imagined discussing my fears with him and thinking he would understand, but he did. I could not get my arms around having a baby and having him immediately taken away from me to fight for his life. He was 2.5 lbs and extremely fragile. His hand fit in my husband’s ring and his skin was translucent. Come to find out, my boss’ daughter had the same experience with her child, and he was an amazing source of support for her. He arranged a time for me to speak with his daughter, and for a brief moment, I felt relieved. I’m not alone! A day later, it was back to reality. I visited the NICU for 7 grueling weeks, living each day in a FOG! I never told my boss what his support meant to me. I hold a special place in my heart for him, because for a period of time, he was my main support!!!!

It took me a few years before I actually connected with someone else that I truly felt comfortable with, and sharing my innermost feelings about the journey. I actually met her while at a therapy session, and I approached her because she was crying. I did not need to know why she was crying. The only thing I wanted to do was to let her know that she was not alone and it’s ok to cry. This particular day, her son was struggling through therapy and, at that moment in time, she felt defeated. I totally understood !!!!! We soon became friends, and when I found that she could relate and reciprocated similar feelings, I felt a huge weight lifted from my shoulders. I had finally found someone who truly understands what I’m going through.

With the little support I had, most days I felt as if life was just passing me by and I merely existed. Yes, I had the full support of my husband, and he is amazing, but he is not a mother!!! I soon began to rely heavily on God. I truly believe God selects you for a journey because He is trying to birth something in you and establish your purpose. Prior to this journey, I had very little faith, and I now know that He placed me on the journey to increase my faith. Did my faith level increase immediately? Absolutely not! I can honestly say that my faith level did not change until the 3rd year into my journey. It wasn’t until I decided to allow God to take charge, and allow Him full access, did I see the progression in my son.

Who is your support and how have they helped you get through your journey?

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Time to stop taking the easy way out……

by Karla Barnett on January 4, 2012

Yes, I said it, I am guilty of taking the easy way out when it comes to my picky eating son! His limited food choices consist of crackers (wheat Ritz only), yogurt, pretzels (occasionally), nutri-grain bars and milk. Jonathan has oral sensory defensiveness which means he has a limited food repertoire and avoids certain food textures and flavors. I often wondered how he feels when presented with certain foods and a therapist indicated it’s similar to you or I eating a roach.

So how do we fix oral defensiveness? I currently take him to weekly feeding sessions with speech therapist. The sessions consist of presenting him with new food choices. When I first observed the process she goes through, I thought, “You have got to be kidding me!” The goal of the feeding session is to make him comfortable enough to touch, kiss, lick and eat the food. I’m thinking meal time will take hours. I was literally relying on the therapist to resolve the issue and not utilizing the techniques at home, but it doesn’t work that way. I had to realize he is with the therapist 50 minutes a week. Not enough time to make a dent in his progress. She provides the tools to eliminate oral defensiveness and it’s up to the parents to effectively implement the process at each feeding.

My hubby and I had a long discussion relative to Jonathan’s eating last night and decided we need to stop taking the easy way out. That means introducing new foods daily versus giving him his favorite staple, Ritz crackers, for every meal and snack.
The process make take days, weeks, months or even years but I have to start it now. So, I am mentally prepared myself for the challenge of eliminating crackers from his diet and introducing healthy food choices. Today was the beginning of my quest to conquer picky eating and this was clearly one of the worse days of my life. For breakfast we started with French toast, eggs and turkey sausage. Keep in mind, the three items may not be on the same plate and I’m using the process indicated above. As I attempted to feed him, there was crying, screaming and consistent request for crackers. I fought back my tears and tried to comfort him with hugs, kisses and words of encouragement. None of which seemed to matter. There has been a pit in my stomach all day and I’m trying to remain strong for my little guy. I have been through many trials in my life but this is proving to be the most difficult. It seems cruel to deny him of his favorite food but I have to realize the short term pain we are both experiencing will benefit him for life.

Will this be a simple task? No

Will the long term benefits be worth the battles, tears and frustration? Yes

Stay tuned for the good, the bad and the ugly!

Do you have a picky eater? Feel free to share your tips with me!

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Raising two beautiful kids (one with special needs and one without)

by Karla Barnett on January 2, 2012

Who knew how much guilt a mother could feel raising two children, two years apart, one with special needs and one without! I hate to admit it but I spend a vast part of my day wondering if I’m doing everything possible to enhance my son’s life….specifically as it relates to speech and his picky eating habits. Speech is one of the challenges we are facing and the main area of frustration for my little guy.
His expressive vocabulary is extremely limited while his receptive language is age appropriate. Imagine if you had a lot of things to communicate but there is a disconnect between the signals from brain to lips, tongue, jaw, and soft palate (Apraxia of Speech). He feels total frustration and it breaks my heart!!! Throughout the day, we constantly work on perfecting speech by using a multitude of mediums including iPad, flashcards, objects, books, etc. While we are making progress, it is a slow rigorous process!
Here is where the true guilt comes into play. As we are going through our therapy sessions, my daughter is in the background belting out each word. Her expressive language is expanding rapidly while my little guy’s creeps along. You may ask, “Why this would cause me guilt?” Well…..I want the best for both of my children and I HATE TO SEE one struggle.
After meeting countless amazing mothers with special needs and typical children, I have come to realize that the feeling of guilt is a common thread. Initially, I thought I was the only one feeling this way.
I’m so thankful for the women I have met at therapy sessions, doctor’s offices and through Dynamic Mom. I now realize I’m not alone and have the support I need to make it through the day!

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My Inspiration!

by Karla Barnett on September 2, 2011

My little guy, Jonathan Michael, is my awesome source of inspiration.  He has taught me to appreciate the smallest accomplishment,  improve  my patience and gave me hope.    Life before Jonathan was filled with judgement, very little compassion for others and a lack of faith.   Watching him thrive on a daily basis brings tears to my eyes and joy in my heart.  He makes me a better person!!!Never let health care professionals or teachers place your child in a box because they will always prove them wrong.   As parents of special needs children, we need to raise our level of expectations and continually challenge our angels because they will shock you!  We need to stop avoiding mainstream activities because we think they will melt down and we will be judged by others.   I was guilty of restricting Jonathan’s activities as I was worried about the judgement.  Toddlers have meltdowns, some more than others, the goal is to manage the situation and not run from it!Always keep in mind, special needs children deserve every opportunity a neurotypical kid experiences.    Don’t let others hinder you from allowing your children to enjoy everything life has to offer!

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Lauren Hussain shares her feelings of isolation while raising a special needs child

by Karla Barnett on August 7, 2011

Dynamic Mom asked me if I would relate my experience about feelings of isolation. For those of you who don’t know me, I’m the mother of Chuck, a 20 year old who was diagnosed at the age of two with a multitude of disorders and disabilities (behavioral, physical and cognitive) and a grim prognosis for the future, but who turned out to be a normal kid, and even graduated as an honor student.

Chuck is an only child. When he was born, no one we knew had little kids, and we had no one to compare him with. We lived in the middle of nowhere, and had no neighbors within walking distance. I always thought I could do whatever I set my mind to, but within weeks of having Chuck I had the feeling that motherhood was something I wouldn’t be successful at.

Although it took about two years to get any diagnosis on him, I knew something wasn’t right within a few weeks. I really thought the problem was that I was just inept at mothering. It was hard to accept that something as basic as being a mom, which should come naturally to any woman, was the one thing that made me feel like a complete failure. I was thrown out of restaurants, play yards, birthday parties, department stores, and once a library because of Chuck’s behavior. People stared at me everywhere I went as if to say, “Can’t you control him?” I’d look back as to say, “If I could, don’t you think I would?”

I was married to Chuck’s father until Chuck was four, but even during the marriage I felt like we were dysfunctional. We couldn’t do much as a family. One of us would go out (shopping, out with friends, errands) while the other stayed home to watch Chuck. It was just too stressful to take him with us. When our marriage fell apart, I moved back near my family, but I was afraid to take Chuck to anyone’s house. The minute you put him down, he was into everything, and very destructive. He broke everything from knick knacks to refrigerators to VCRs to computer keyboards to windows. (His first complete sentence was “You broke it” at age four.) In public, he’d walk by other kids and smack them with no provocation. I was persona non grata even among my best friends and relatives. The first few years of his school, an aide, assigned only to him, had to be hired for any time he was in class, pre-school or after-care. At home, I had to install combination locks on the top of all the doors leading to outside to keep him from escaping when I fell asleep.

Chuck had a private nanny until he was four, as no day care was able to handle him. I took seven years off work to be with him, from age four to age 11. When he wasn’t in class, he was with me, and I volunteered several times a week at his school. My initial feelings of isolation morphed into what came to be our theme song, You and Me Against the World by Helen Reddy. We had an unusual relationship that wasn’t typical of mother and child. We were more like teammates or contemporaries. He was my constant companion. Even when he seemingly didn’t understand or respond to anything I said, I tried to treat him like an intellectual equal with a stake in his own future. I couldn’t raise him in a conventional way because he didn’t respond to a conventional world. I endured a lot of raised eyebrows for the way I was raising him, but I just developed a thick skin and convinced myself that I was doing the best I could.

It took years of testing, therapy, behavior modification, counseling (for both of us) and yes, medication, to be able to bring him places without disaster. It took years after that for him to assimilate into the outside world. I didn’t just feel alone; I was alone. Alone with Chuck. And to this day, that is one of my favorite places to be.

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Inspirational personal story posted by my neighbor!

by Karla Barnett on August 2, 2011

I just want to write a few words of encouragement for those of you with young children facing this diagnosis. My son grew up with an extremely severe case of SPD. He had been diagnosed with everything from Autism to PDD to mental retardation, and had severe developmental delays due to his sensory integration and processing disorders…. He had years of therapy from OT to PT to Speech and Vision therapy and many years of special ed. I just want to say that he is a perfectly normal 20 year old. My advice to those of you living through this is just love and enjoy your child the way s/he is. I think the goal is to help your child rather than try to “fix” him or her to fit in.

Just to give you some idea what it was like, my son was extremely hyperactive, a head basher, non-verbal, fearless, seemingly impervious to pain with no impulse control. He was on Ritalin by the age of 3. He was almost 6 when I got him toilet trained, about 8 before he could help dress himself, and almost 12 before he could tie his shoes. His IQ tested consistently in the 60s well into his elementary years, and his developmental pediatrician insisted I was in denial for not facing his mental retardation. By high school, he was in regular education, with an above average IQ, and he graduated Cum Laud with a 3.4 GPA. I hope this is inspiring to some of you!

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