Tuesday, April 23, 2013

A Place of His Own

Levaughn's Comfort Zone
 
The post for the remaining weeks of April took me a while to assemble. I thought of support groups for families, both online and in the general public. I will attempt to list a few at the end of this post, but there also something else that came to mind, your child's environment.


What I have done here is added a picture of my son's favorite spot. Yes, it's a tent. When my son was younger, I did not understand the need for him to have his own place to go to in order for him to reboot.

There were times where he might have gone into a dark place such as a closet or behind a bed. It wasn't until one Christmas when I purchased a play tent that I understood the importance of this simple toy. At first, it started with me buying a tent for my daughter, who is not on the spectrum. I soon discovered that Levaughn loved playing in the secluded space.

The next Christmas, I bought tents for them both. They enjoyed romping and hiding and going back and forth between the two tiny forts. Then there were times when Levaughn could not regulate his emotions well and he would just go to the tent and hang out. He would reappear some time later fresh and ready to move on. Since then, tents have been a part of my Christmas shopping list as a staple. This year, we bought a real tent. I wanted something that would last for more than a year, if I was lucky. On Christmas day, we assembled his tent and he quickly put his sleeping bag and his light saber inside. He zipped himself inside and that was his own place. He doesn't use it as much now, but when he needs it, be it play or self regulation, it is there for him.

Self regulation is a big step for children with Autism. We as parents, might not understand the signals, especially when the child is non verbal. I can only give you what I noticed:

1.  Crying for no reason
2.  Going off to be alone 
3.  Easily upset with no reason
4.  Tantrums that last longer than usual

The funny thing about these clues is they occur in children with and without Autism. Some of our children just need reboot space. So if you are a parent with a child that is not on the spectrum and you are reading this, don't panic.  All children have some little quirk that makes them who they are. This doesn't mean they are on the spectrum and someone misdiagnosed them. This is just a tool that I found that seems to work for my child.

Autism Support Groups

I live in a small town, therefore support groups are few and possibly non existent. However, thanks to social media there are a number of online groups that offer discussion and sharing:

1,  http://autism.supportgroups.com/

2.  http://www.autism-society.org/

3.  http://www.myautismteam.com/users/sign_in

4.  http://www.autismspeaks.org/about-us/social-networks

5.  https://www.facebook.com/pages/The-Autism-Social-Network/160555103982991


Parenting Support Group In Lake City, FL area

1.  http://www.momsclublakecity.webs.com/




Saturday, April 6, 2013

Autism/ADHD Medicating Our Children



In keeping with the theme on Autism and the ones we love, I thought I would further by sharing my experience with medicating my son. Not only is Levaughn a child with Autism, he is also diagnosed ADHD.  Where his stemming begins and the ADHD ends is a good guess, but with the help of a good physician and little self experience we recognized the signs when things weren't going to right.

Stemming:

As you all know, most children with Autism, stem. This is a repetitive gesture or motion that soothes their anxiety, yet drives the parent insane. That's putting it mildly. For my son, beads and repetitive motion of twirling the beads seems to be his thing. He is also the perfect mimic for certain cartoons, characters and movies.

ADHD

For my son it is the inability of him to slow down from his stemming and focus in order to learn.  That simple.


The Doctor

We have had two doctors that specialize in ADHD/Autism. Both of them are very good. The first one actually diagnosed my son and started him on medications at age 3.  These were drugs to calm the constant stemming and help him with changes in the classroom. This was the office that said he would never adjust to change.  Well two things happened, we learned quickly that strawberry milk was excellent in mixing liquid meds and Levaughn did learn to adjust and was not violent so we were down to one med.

Another interesting fact, for those of you who are new and just getting into this. These medications tend to cut the appetite of the child. I would be feeding my son 3 or 4 peanut butter jelly sandwiches in the morning because I knew he would go the entire day without eating. Then when he came home, I would let him eat whatever he wanted. By the way, yes he is a picky eater. Still working on that one. No, I don't do GFCF diets because he is already limited in what he eats. I can't afford it and since he is coming along as is, will hold off on that one.


Meds we have tried (*) current medication:

Daytrana  (Age 3-4)  
-Patch Form
- Worked pretty well until he outgrew it

Resperidal
-liquid
-Worked for a limited time during the day, needed longer lasting med

Vyvanse (Age 5-7)
-Capsule
-Sprinkle in food (Mixed with strawberry milk or juice)

Concerta(Age 8-9)
-Capsule
-We taught him to take pills (Med did not work well for him, made him angry and violent/discontinued)

*Focalin XR
-Capsule
- Can open and sprinkle in his mouth with water, if unable to get the capsule down.  This is his current medicine and it works well. However, it had to be combined with Intuniv.

*Intuniv
-Tablet
-Works well with Focalin XR in helping him maintain focus throughout the school day


For those of you wondering why we have had so many medications, well as my son's body chemistry changed, he outgrew his meds or his system just acclimated to his medications.


Over the years, I have used strawberry milk or juice to deliver medications to my child. But as you know medications that are extended release are not that plentiful in liquid form. At least during those years there weren't any. Now there is a new med that is available called Quillvant. It is the first extended medication in liquid form. http://www.quillivantxr.com/

Know Your Child

As I have stated before, we could always tell when it was time to adjust Levaughn's meds. His behavior would change drastically. His teacher would notice that the medication would wear off earlier or just was not taking at all. The next thing was his appetite. If he started eating a lot at school, we knew that it was time for a change.

Also, watch for negative changes after the medicine is administered. The anger and unwillingness of my son to work for his teachers was our immediate cue that Concerta was not right for him. In addition, earlier on he was given Intuniv and it made him very sleepy. However, now that he is older he can tolerate it better when paired with the Focalin XR.

A Hard Road

No. No it isn't easy, but take it by the horns and learn the cues, learn your child's language. Most of us with children with this disease communicate in Autism all the time. It is up to us to translate that to our teachers and physicians. I say that yes, I am bilingual, I speak English and Autism.

I hope this has helped.

L Redd

Monday, April 1, 2013

Autism: Battle on the Home Front -L Redd



Autism: The Battle on the Home Front

So today I have been asked to submit a blurb about my life and autism. I am quite pleased to do so because I feel my story is one of success in the making. My son was a blessing from the beginning. Born at 28 weeks and weighing in at 2lbs 10oz, we were faced with a number of uncertainties. I sat by his NICU bed praying and hoping for any miracle that would keep him alive and well. You can imagine when he suddenly stopped eating and was diagnosed with meningitis how crushed I was and unsure of where life was taking us. However, Levaughn pulled through and shortly after valentine's day in 2004 I was able to take him home. You can only imagine my joy and elation at packing his bag and saying goodbye to his sterile but loving environment at the Shands in Gainesville, Florida.

As a new parent, you have no idea what to expect. Yes, you buy the books, your watch the many shows on TV about bringing home a new baby and the nine months before and after, but nothing really prepares you. The months following bringing Levaughn home were doctor's visits to make sure he continued to gain weight and stayed healthy and thank the Lord, he did.

We made it to birthday number three and by then, things were starting to manifest that I knew were not typical behavior. My little man never spoke and seemed fixated on the television and twirling objects. Looking back on it, he seemed confused with the world around him and was just taking in what he could. I have to admit that as a new mom, I had no idea what was going on and am sure that I didn’t handle things as I should have. It wasn’t until a trip to the pediatrician that I was made aware that he may be a child with autism. I contacted the school system for testing and at that time my son was evaluated and due to his delays, was placed in the school setting. It was in the spring when he was officially tested and labeled as a child with moderate to severe autism. That was the worse day of my life. My world crashed around me like a mirror in a bomb factory. The shards of glass for every moment in his life that I wanted to cherish now lay crumbling in piles at my feet. Pieces of graduations, first driving lessons, marriage, grandkids, all of those events were now shattered and unrecognizable. I drove home from that meeting in tears and wondered what I could do and what was going to happen to my little boy. I arrived home exhausted from depression and endless amounts of tears. Autism was and still is, a disorder in which cases are increasing daily and no one has any idea of how it happens or how it is cured. Back to me at home from the appointment and sitting at my dining room table contemplating options. It was then that a sliver of hope reached out and gave me strength. Levaughn wanted a toy that was on top of the entertainment center. I watched him get a chair and climb up to the unit and retrieve his toy. It was in that instance that I realized that if he can think, he can do, autism or no autism. My crusade was fueled with a passion to find the right educators and environment for my son. We have had many battles since and have overcome a number of obstacles.

Levaughn was already enrolled in a pre k classroom for two years. I held him back an additional year because I knew that his next placement would be a school where they would pigeon hole him as a child with autism and stick him in a room with other children with disabilities. He would be there full time and never be allowed inclusion in a regular classroom. In my mind, that would never do. I understood that he needed the special classroom as he learns at a slower rate and stems, however, he had so many other qualities that were not being addressed in that special class. In addition, I knew that school system would not be as accommodating, no matter what the rules are. If the regular education teacher felt that him just being there was too much, he would be moved immediately back to his special class on a permanent basis. I was at the proverbial fork in the road.

In the meantime, I was starting to hear good things about the Hamilton county school system. A small quaint town, Hamilton is west of Columbia by fifteen minutes. The town, the hometown of my husband, is a place where people care for each other and outsiders are welcomed, but they better know their place until they are accepted. The move was not a difficult transition and Levaughn did well. He started off at the Greenwood school, which was dedicated to children with disabilities of every level. The facility had gained a strong positive, reputation for working with children and getting them mainstreamed and/or placed in the ESE, Exceptional Student Education classrooms at Central Hamilton Elementary. When I transferred Levaughn, some people were shocked and asked did I know what I was doing. I didn’t care, anything was going to be better than him being placed in a room where he would be forgotten. We moved to the new school and met a wonderful teacher name Mr. Torres. He immediately saw the potential in my son within weeks of his enrollment and began working with him on language and self control. At the end of his first year, Levaughn was starting to speak and request items that he wanted. He was able to use one word to do these things, but that was fine with me. He seemed happier and smiled more and actually looked forward to school. One year with Mr. Torres and he was starting the rudimentary skills that he needed to carry on to the next level.

Following summer school that year, Mr. Torres called me and told me that my son would go to Central Hamilton, which is the elementary school in Jasper, Florida. He would be in a classroom with other children with disabilities, but it would be a small class that ensured more one on one with Levaughn. In addition, he would be mainstreamed for the purposes of observation. I was thrilled and scared, my son had tested out of Greenwood but he would be under someone new. That was when Mr. Torres lowered the second bomb, he was moving to Central and would continue to be Levaughn's teacher. I was smiling and crying at the same time. My prayers had been answered. Someone who was familiar with my son and knew what it took to work with him was going to be at the healm.

The first part of that year was amazing. Levaughn added more words and began to be curious about his environment. In addition, the greatest thing in the world happen, he started calling me, "mama." Yes, he had said the word before, but it was with a blank stare, almost like a speech to a stranger. However, now when he said it, there was feeling and love in his eyes. I shouted out his progress to everyone we knew. I could tell that some people did not believe me and some were ecstatic. The reason being, In addition to his Autism, he is a child with ADHD. He is medicated to control his impulses and by the end of the day the meds wear off. So if we attended any functions, you would see the side of him that was unmedicated, especially if it was after 3pm. Anyway, I knew the progress and none of the other naysayers mattered.

That was when I learned for sure that with every positive a negative would rear its ugly head. Mr. Torres, guru, became very ill and had to leave his position. I was devastated. Levaughn's team called a meeting and I met with a new group of teachers to discuss what would be done. Once again, Hamilton was all over it. Levaughn would have a new teacher, but not as thrilled as Torres. She was good, but was a teacher that was meant for regular education students. Nothing bad about her, but once you work with special needs children you have a better understanding of what it takes to make them learn and how they learn. He remained mainstreamed but I felt that I had reached a pit yet again. That was when another wonderful blessing came my way in the form of Mrs. Amy Bailey. She had been asked to take over Mr. Torres' class as she had a background in working with children with disabilities. She was the spark that we both needed. With some hesitation, she took on the class and Levaughn's world exploded into a loving environment filled with discipline and caring once again. Levaughn was able to come off of one of his medications as he learned how to transition without causing a stir and using negative behavior.

Since the induction of Amy Bailey, he is starting to read (sight words) and doing very basic mathematics. He is now only on ADHD medication as he is a true hyperactive child. He plays with other children and is atypical in his autism in that he has compassion for others and loves hugs. Amy is on top of every moment keeping a photo diary of my son and sharing his special class moments through text messages and videos. We talk all the time and share ideas of what works and what doesn’t. My son is an A B honor roll student. Yes, he is in his special class, but that does not mean his accomplishment is any less. I know now that if I had kept him where he was, he would be just that kid in “that” classroom. In Hamilton, he is Levaughn Brown and everyone adores him. He gets up on stage to get his certificates and trophies with a smile. Even though, we know the road ahead will be paved in stumps and cracks, it’s easier to maneuver with Hamilton county and Mrs. Bailey at my side.

So if you are reading this and have a child with a disability and are at that point where you feel your child can do more and you are not getting what you thought you should, speak up. The only person who can truly have a voice for your child is you. Lachelle Redd