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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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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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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SLC Therapy conducts and interview on Dynamicmom.com

by Karla Barnett on July 28, 2011

http://www.bluetoad.com/publication/?i=76724

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Respite Care

by Karla Barnett on June 24, 2011

I often struggle with finding the right person to care for my son if my husband and I want to have a date night/day.  I’m sure he would be fine but I truely feel people don’t understand his behavior.  So what do we do…absolutely nothing and we begin to burn out.

About a month ago, I stumbled across Respite services and I thought this would be perfect for us!!!  I searched online for services in our area and came up with nothing.  I was chatting with a friend the other day and she told me about a service she uses, I called them up and have an interview with them next week.  What you pay depends on your income but the cost is minimal and you will receive quality care from a professional who understands your childs needs.    Listed below is information on Respite care.

 

What is Respite Care?

Respite care provides families with temporary relief from the stress of raising a child with special needs.  Respite care is different from day care because it usually occurs on a short-term or intermittent basis.  While respite is a much-needed break for parents, it is also an opportunity for children with special needs to have some time away from their parents. Believe it or not, sometimes children need time away from the stresses of being at home as much as their parents do!

Benefits of Respite Care

Raising children can be challenging at times, especially if raising children who have special needs. Some parents do not use respite care because they can’t imagine anyone else having the knowledge and experience to care for their children. Because their children’s needs are so great, parents are not often afforded the luxury of a night out or time to regroup.

Parents often forget how important it is to take care of themselves. Respite care gives parents time to take care of themselves and reenergize, and can help relieve stress. Some parents need respite to run errands or get a good night’s sleep. It is also an opportunity for parents to put their home life into perspective. Respite care can also offer additional learning and recreational experiences for children and their families.  If it is used properly, respite care can be an essential tool in keeping families healthy, happy, and together.

If you are looking for a respite care provider, be sure to get referrals from your support group, community liaisons, caseworkers, and foster care/adoption agencies.

Do your research and don’t be afraid to ask questions! The following

questions can be used as a guide when interviewing potential respite care providers:

  • What is your training and level of experience? How long have you been providing respite care?
  • Do you offer in-home care?
  • Do you provide organized activities?
  • Do you provide meals?
  • Can you administer medications to my child as needed?
  • What procedures do you have for emergencies?
  • Do you have training in first aid and CPR?
  • How far ahead of time do I need to call to arrange for services?
  • Can you provide transportation for yourself and for my child?
  • What is the cost of services? How will payment be arranged?
  • What is your knowledge of the special needs (FASD, RAD, etc.) of my child? 

Preparing Your Respite Care Provider

Once you have found a respite care provider, it is important for you to train the provider in caring for your child. No one knows your child better than you do and the smallest details about your child may be the most important for your provider to know.

Talk about what you hope to achieve from respite care. It is important for your provider to understand what your expectations are. You also need to be open when discussing your child’s needs with your provider. The more your provider understands your child’s needs, the more prepared he or she will be to handle the various situations that may arise.

Set aside some time for your child to meet with the provider in your home. If your provider plans to care for your child in his or her home, have your child visit the provider’s home as well. It is important for the provider to develop and nurture a relationship with your child. This will also give you an opportunity to observe the interactions between your child and the provider. Your child should be comfortable with your provider and you should know that your child is being left with a safe and capable caregiver.

Let your provider know what works for you and what doesn’t when caring for your child. Breaks in routine and structure can be difficult for children, so the more consistency between you and your provider, the more beneficial the respite experience will be for your entire family.

Take Care of Yourself, Too

Parents of children who have special needs should remember that taking care of themselves—in addition to taking care of their children—is essential to keeping their family strong and intact. Every parent needs a break every once in a while, and parents of children with special needs often require extra support. Don’t be afraid to ask for help! Remember that you are not alone and there are resources to help you in your parenting journey. Taking a much needed break can help you be a better parent and can greatly benefit your entire family.

To sum it up, my husband and I have NO SUPPORT and this makes Respite extremely attractive for us!!!!

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Share your parenting experience with other Dynamicmoms

by Karla Barnett on June 24, 2011

Parenting is a rewarding, but often difficult challenge…start a blog on Dynamicmom and share how it’s impacting you. Your blog may be focused on the unique challenges you and your child face or the everyday moments that make parenthood so meaningful (and sometimes comical)!

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Moms need to schedule time for yourselves!

by Karla Barnett on June 10, 2011

I decided today to start taking better care of myself.  In order to be all that we can to our kids and husbands, we need to ensure that we are keeping ourselves up.  I have noticed a significant change in my appearance and I really don’t like what I see.   The day to day regimen can really consume you mentally.  The countless therapy sessions and doctors appointments can take a toll on you and burn you out.  It is imperative that we recharge our batteries on regular basis.   I established goals for myself:

  1. Lose weight
  2. Exercise 4 times a week
  3. Schedule a special day for me~Pedicure, manicure and eyebrow wax
  4. Pray on a regular basis

We as mothers spend so much of our time making sure our families needs are met and we tend to forget our own.

Make sure you take time for you!!!!  Start today!

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Interview on Special Needs Radio with Rick Clark

by Karla Barnett on June 8, 2011

Rick Clark, an awesome man of God and special needs advocacte group developer as well as trail blazer in the special needs community conducted an interview with me regarding DynamicKids.

http://www.blogtalkradio.com/rcater/2011/06/08/special-needs-radio

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