autism

Adventures in Homeschool

Today is my kiddos last day of school. We are saying see ya later to 2nd, 5th, 7th and 9th grade. Yes, I have the trifecta of kids in elementary, middle and high school  and next year one of my monsters will be “homeschooled”.  Homeschooling is not a decision we took lightly. There are so many factors to consider before deciding to homeschool, the largest being is this in the best interest of my child.

Adventures in Homeschool | Country Girl Gourmet

In our case we live in a smaller county in North Carolina and I have a child with special needs. My second son has Autism and since he was 3 year old he has gone to school. In fact he even started out in the country where we currently live. Back then though I was new to the world of Autism. I didn’t have anyone helping me figure things out, in fact Autism was often considered a gray area. I have learned a lot since my son’s diagnosis 10 years ago. I have learned to advocate for my child. Simply if I did not do it, who would?

I can be thankful for being a military family because it has allowed me to see how other school districts in different states work with special needs children. My son went from what I now call a glorified daycare program here in North Carolina to an intensive pre-k in New Jersey. He went from receiving only Speech therapy to Speech, OT and PT multiple times a week. They used ABA in the classroom, Had tons of aides and my son even had his own one on one in kindergarten. My son flourished during his 3 years in New Jersey. His Early Intervention Services there went above and beyond.

From there we moved to Texas. Our transition was tough. It took almost his entire 2nd grade year to update his IEP to a Texas one. I won’t lie, I was pretty frustrated during the process but it pushed me to further research IEP’s and state and federal laws. I ended up becoming pretty good with IEP 101.  Once in 3rd grade though his school system had started a program for high functioning kids and by the time we left after he graduated 5th grade we were sad to go. My son was flourishing and doing extremely well in school.

As if transitioning to middle school wasn’t enough the Army sent my husband back to North Carolina in 2013. We researched schools and narrowed down the area we looked for houses. It was harder to find a house than we thought but eventually found our perfect house. We were also back in the school district my older two started school in. Easy peasy right? Wrong. Very, sadly wrong.

We tried, we gave it a good honest try but things just did not work out. I had already planned on 6th grade being a possibly bumpy year but had hoped for better things in seventh grade. What I found were teachers and administrators who were unknowledgeable about Autism and the fact that there is not a one size fits all formula that covers all children with Autism. I dealt with teachers who did not follow my son’s IEP and BIP. My son was even suspended after he had a meltdown caused by a teacher and his failure to follow my son’s BIP. That teacher has yet to say anything to me about that incident and didn’t even go to my son’s IEP/BIP mandatory meeting that was held because of the suspension. That speaks volumes to me. This entire incident was the straw that broke the camels back. This is what brought us to the world of homeschool.

We now had the fact that teachers and administration all agreed that my son would benefit from an one on one aide. Something I had previously requested and was told that there was no funding for. Yes, they really said that. So they were going to work on getting my son a one on one aide. This was back in March and he never received a one on one aide and we never met again to discuss getting my son one outside of one phone call.

The one phone call came from the principal. She was excitedly telling me about this great new program that the Army offers called ABA. Since my son was a military child he could get a one on one tutor with that program. All I could do was shake my head and then explain to the principal who is a military spouse herself what the program actually was an ECHO benefit and what ABA therapy is and how it wasn’t anything new. I also told her I was not going to be using my child’s medical benefits that he may need outside of school for something the school should be providing especially since they agree he needed it. Back to the drawing board she went and the topic was never discussed again.

When the final straw was broken my husband and I decided to homeschool our son. We had both looked into the possibility but it had always been just that. An option lingering in the back of our heads if things did not improve. We knew there was an online public school and as if it were fate it was the last week to sign up for the lottery. I signed my son up just so we had that option and to our surprise my son was selected. I rushed and did all the necessary paperwork to enroll my son. We had our plan. The program, NC Virtual Academy, had the same requirements as any other state public school. Our son had a regular school calendar, he would have to log attendance, school days were 6 hours, there would be structure built in, he would have a teacher and I would only be his learning coach, he would keep his IEP oh and he will do this all at home on the computer. A place where he never had the behavior problems or any of the other issues he had at his middle school. It sounded like a win-win for him.

I waited somewhat optimistically for an update about that one on one aide but it never came. I finally told his special education teacher the other day that he would not be back the next year and he would be attending the virtual academy. The next day at his award ceremony she agreed it would be good for him and understood we need to do what is in his best interest. She also reached out and offered to her help if we need it. She was in tears. You see once you learn my son’s “quirks” he is one of those kids you fall in love with.

Today I disenrolled him from school. It was easier than I thought it would be. They had me prove he was enrolled in the NC Virtual Academy which made me wonder what do parents who traditionally homeschool do? As I was leaving his special education teacher saw me and gave me a good bye hug. I told her I would still be around. I had a 6th grader that would be there next year. Yes, I’m trusting them with my youngest son, well for now.We will see how 6th grade goes. My oldest did ok so i’m trying to stay optimistic. The fault in the school is the lack of support for special needs students.

My reassuring moment was when I was leaving I walked past the principals. Typically someone says something about my son, or has a story, something. There is almost always a something. I was thinking maybe they would say something about that one on one aide but no. So I told the principal of the school my son would not be back and received a rather unconcerned reaction, I was kind of surprised. This was the same principal who called me a couple months prior that was working to get my son that one on one aide. Wow, I didn’t think this was going to be that easy but ok, thanks for making this easy. I knew in that instant I had made the right decision for my child.

So here we go onto our newest adventure, homeschooling. It’s an adventure I never really thought we would take on but I guess, never say never! Here’s to 8th grade and a smooth transition to the homeschooling world!

Autism and My Family: Part 2

I’ve started this more times that I can remember. I really don’t blog about my kids. I don’t blog about my tweens and teens because they are teens and tweens. Who knows where a blog post I write may land one day. Honestly who cares if their friends and classmates find out that their friend has a mom that blogs but rather i’m concerned with their future. Future colleges, employers and who knows what. There is something that keeps nagging at me and I feel I need to continue on a story that I first blogged about in 2009 on health.mil. My families story about our life with autism. My original blog on health.mil is now gone but you can read it HERE. Six years have past but Autism is still a huge part of our life.

AUTISM and MY FAMILY: Part 2

My son is now 12  and will be 13 in a few days…he is in middle school. It is an interesting life. His childhood is remarkably different than that of his siblings. He could use help in the areas of OT and PT still but he does not qualify for those services in school but yet they will comment about his handwriting or his participation in PE. The best was the language arts teacher who wanted me to teach him how to write cursive. To combat his handwriting he uses an iPad in school. When we moved from Texas to North Carolina his new school took him out of Speech. While he has progressed by leaps and bounds his articulation is not perfect and forget it when he gets upset. These things are now a story of finding places that will see him with our insurance and waiting because they have waiting list. Waiting lists for after school appointments are long. Getting one of those appointments is like finding the golden ticket.  Social skills are not my son’s forte. He also no longer has social skills therapy in school, they simply do not offer it. I am left seeking out social skills therapy groups for teens which are non existent in this area. My son’s school has suggested I enroll him in this “new” Army program, ABA and  when they say that it makes me want to shake my head. The Army program is ECHO (which has been around since 2009) and one of the services provided is ABA therapy, a therapy my son did well with and no longer utilizes. Not because he doesn’t need ABA but he no longer needs it. It is a constant struggle getting schools to cover services. It is often a combination of understaffed and undertrained.  I’ve also learned the majority of services for children with Autism outside of school are focused on younger children. Teens and young adults are often sadly forgotten.

There are many differences in our life that are just not the same as those who do not have special needs children. One of the easiest things to see is me, at the bus stop with my middle schooler in the morning. Then there I am hanging out on my front porch sometimes for an hour in the afternoon waiting for his bus to come home. My son is not allowed off the bus without an adult present. Want to know what happens if someone isn’t out there? We get a phone call, a where are you phone call from the school. It’s fun,trust me…not really. Like, we knew the bus was going to be early. Give a parent a break. For my son there are no invitations to birthday parties, no kids coming over to our house to hang out with him and no one inviting him over either. When you have problems with social skills, friends don’t come easy. It is a sad truth. On the other side there are mean, horrible kid’s out there, bullies. They pray on anyone who is different. Despite all the program’s in place in schools bullies still exist. All I can do there is make the school aware and drill into my son that he needs to tell someone when someone is mean or hurts him. Add into this stress for him the pressures of being in class from the lights, to the temperature, to the sounds, other classmates and adapting to changes in routine. Next add in teachers who do not completely understand special needs students and we have a recipe for disaster. While my son does not have behavior issues at home, they are present at school. He has been suspended because his Behavior Intervention Plan (BIP) was not followed and he had a meltdown and he threw a pencil. The situation sadly could have been avoided. My son once liked going to school but since we moved to North Carolina those days are over. Homeschooling is something that keeps entering both my and my husband’s minds and my husband isn’t a huge fan of homeschooling. We have to think of what is in the best interest for our son though.

Over the years i’ve read all sorts of things about how to cure Autism. In my opinion there is not a cure. There are a variety of interventions that are helpful. Some people choose to change their families diets, others add probiotics and others seek out DAN doctors and follow their suggestions. Our family somewhat follows Feingold and we try to limit processed foods. While I am gluten free my son is not but that said he does not eat as much gluten as most other kids his age. Some people use medications to help symptoms while others stay far away from it. We do use medication and it has almost always worked for us. The only time it didn’t was when Target pharmacy accidentally over dosed my son on Prozac and he became manic. Yes, that was a scary time but we got through it, while my husband was deployed no less. Medication can be a risk and it is not a decision I take lightly. It took a few months of trying everything for my son’s anxiety and skin picking before I finally said ok to Prozac. My favorite intervention remains therapy and getting children into Early Intervention Services. While my son was 3 when he began services they helped him in ways that are completely immeasurable. I don’t want to think how our life would be now if he had never had any of his therapies. If there is one thing I have learned over the years what may work for one child with Autism may not work for the next. You just have to continue trying until you find what helps your child.

I am sure this is coming across as whoa is me and i’m only touching the surface but trust me despite all the struggles and frustration and tears there is plenty of good. My son is smart, sweet, kind and funny in his own way. There is so much more to him than his Autism diagnosis his quirks and those pesky awkward social behaviors. It is my hope not for a cure for Autism but for acceptance. I wish for people to look past their diagnosis and to learn who they are. A person is not their diagnosis. Until the day that this happens I will continue to be there for my son, fighting and advocating for him.

Autism and My Family: Part 1

I originally wrote this for Health.mil in April of 2009. Autism Awareness Month is here and I just wanted to share again along with a follow up to what our life is like now.

Autism and my family: Part one

On April 7th, 2002, my family’s lives were changed forever. We had just had our second son, and our adventures with autism would soon begin. My second son was different from his older brother, but I wondered how different could brothers be? I knew enough that no two children were the same, but my mother’s intuition told me something just wasn’t right.

From the time my son was about a year old, I was constantly telling the doctors I was concerned about his development, but they wouldn’t do anything. The doctors kept telling me he’s ok, he is developmentally on track, and boys talk later than girls. I couldn’t I get a doctor to listen to my concerns. I was concerned about more than my son’s lack of speech. At two and a half he lacked speech, did not like being touched, was not affectionate, would not look you in the face, lined things up, had no fear, and wouldn’t respond to his name. It wasn’t until I changed my children’s primary care manager that I finally had someone listen to me and tell me that my son was different. Soon thereafter a pediatric neurologist diagnosed my son with pervasive developmental disorder (P.D.D.), or high functioning autism. My suspicions had been confirmed now and it was time to figure out how to help my little boy.

The one thing that has helped my son the most is therapy. He receives speech, occupational, physical and ABA therapy in school. He receives additional speech therapy outside of school. He would receive other services but in our area service providers are few and far between. At home we do a lot of repeating, constantly saying “use your words” and modeling. Practice makes perfect, right? With therapy my son has gone from being non-verbal to having fifty percent speech intelligibility at seven years old. His skill level is improving as well. He is developmentally at the same level as his five year old brother. It takes time but when you see your child doing or saying something new it is the best feeling in the world.

Routine is very important in our house. We have a schedule taped to the fridge and rules taped to the walls. If we need to break from the schedule without thoroughly explaining why in advance, meltdowns occur. Meltdowns are not fun, so if you can figure it how to avoid them, you do. My son gets anxious in crowded places and starts humming jingle bells, a song I really do not like anymore. He may even bust out with a funny dance too. He doesn’t play with other kids, only near them. He doesn’t understand the difference between doing something on purpose and what an accident is, no matter how many times we explain it to him. I can go on and on, the list seems endless. Things that are normal to me would puzzle most people.

My son, like other children with autism, has his “quirks,” and no two kids with autism are the same so what works for one child may not work for the next. As parents we learn what we can do to improve the quality of our child’s life. Above all we learn we are our child’s number one advocate, if we don’t fight for our children who will?

Curious about our life with Autism 6 years later? Read: Autism and our Family: Part Two.