When Autism came to live at our house-Part 1
The movie “Rainman” was my first and only experience with autism. Actually, it wasn’t so much as an experience but rather experiencing a person’s autistic behavior. Honestly, I still wasn’t familiar with the term “autism.” That was then and this is now. Not only do I know the term “autism” very well, we live with it everyday. My oldest was diagnosed five years ago and our lives have been like that of a roller coaster ride. We have our ups and downs, our highs and lows. Life has changed so much in those five years.
When my oldest was born, you could not have imagined a more perfect baby (yes, I’m a little biased ;)). He slept through the night, was an active little baby, smiled, laughed and was just a very good baby. My cup runneth over with this little bundle of joy God had blessed me with! I had friends who became envious of this baby who slept so well. My love for him grew as he continued to grow. He was such a delight to be around. I loved him so much and couldn’t get enough of him and his chubby cheeks. We had such a bond that could never be broken.
He was a blessing to me and I felt like the luckiest Mom in the world that God had picked me to be his Momma! When he turned 14 months, we were behind on a couple of vaccines and the medical staff thought it a great idea to catch him up with a cocktail of all the vaccines to get him current. Soon after, my son began banging his head. He would bang his head in his little crib until I came in and lay my hand on his back. I was scared that he would give himself a concussion. When I left his room, his head banging would continue and the cycle repeated itself.
His head banging was so loud that I thought it would wake the neighbors. He would stop once he fell asleep, but would begin again if he awoke in the middle of the night. When I mentioned this to his pediatrician, I was told that he would outgrow it by the time he was three. According to the pediatrician, a lot of kids did this and was a normal occurrence. I thought this was peculiar (for lack of a better word) because I’ve never witnessed another child with a head banging behavior remotely similar to my son. In fact, none of the kids I had been around banged their head. As I reminisce back to this time, there were more signs, but I was a new mom and I didn’t know what to look for. That “Greatest Mommy in the World” title I gave myself was diminishing.
Although he rarely played with cars, my little boy would carry cars in his hands. Rarely was he seen without cars in his hands. He would play with a ball by bouncing it down the steps from the top and watch it fall all the way down over and over, again and again. Because he was an only child, he was pushed to play with his toys. I could give him all of my attention and play anything that interested him. However, now as I look back, he enjoyed me reading to him more than he did playing with firetrucks or Legos.
When he turned two, he began to throw fits over the most menial things. If I told him “No” – he threw a fit. If his food was wrong or didn’t want it (food was another issue at the time) – he threw a fit. The sun was too bright – fit. Raining – fit. It didn’t matter what was wrong because a monstrous fit was on its way. I refused to be the parent who gave in. I remember times of just walking past him until he could speak to me in his “nice” voice. His behaviors became worse as he grew older and I found myself pregnant again.
My oldest was almost 3 years old when I gave birth to our middle child. We moved to another townhouse/apartment where we felt my oldest would be happier. He had a huge bedroom to fit all his toys, a playground was very close to us and we had a deck out back. I also felt he needed more “socialization” (yes, I was that parent before the homeschool momma I am now) so we enrolled him in a private Christian Preschool. This was a nightmare. A HUGE nightmare.
Everyday my phone seemed to ring. It was the school calling me to come pick him up. His teacher said that it wasn’t as if he was trying to be mean, it was as if he couldn’t control himself. I didn’t know what to do. This wasn’t my chubby-cheeked son. I called his doctor and demanded a referral for a specialist to evaluate him. Months had passed and still no appointment. No longer willing to wait and be patient, I called and got an appointment to a place. Unfortunately, we had to pay out of pocket. Fortunately, we finally knew why the behaviors.
This specialist diagnosed my oldest with ADHD and ODD. I kept thinking there was more to it because of all the research I did on ADHD and ODD. Some of his behaviors weren’t fitting within the scopes of these disorders. While I couldn’t deny the diagnosis was a possibility, I just felt there was more to it. The head banging was not consistent with those disorders. Also, he had some other issues like obsessions with fire alarms, an extreme fear of the sound of fire alarms, extreme obsession with Thomas the Train, certain foods, speaking in the third person and the list goes on and on. His teacher at preschool finally asked me if I had ever heard of Asperger’s syndrome.
I am a researcher by nature, so I headed home and began my frantic Google and later, amazon search and showed my husband everything I could find. We both knew it all fit. We just knew this was our son. Getting the diagnosis was the next step which was much harder than one would think. We have Tricare, which can be a nightmare in itself to navigate. I continued to take Bookworm to the specialist and the specialist thought it might be because we had another child that was causing the behaviors. I explained to the specialist that these behaviors existed prior to having another child. I also knew other families with multiple kids and none had these same issues. We were getting no answers and no help.
We enrolled my oldest in Karate. He was so excited to go and I was so happy seeing him all dressed up in his outfit! I was one proud Momma. We get there and Daddy takes off work and shows up, too. We can’t wait to see him shine!!! However, all he wants to do is run around in a circle. We thought, “No worries. This is his first time.” Then it happened the second time he went; and the third time; and so on. It happened every time. I give a lot of kudos to the karate instructors because of their unwavering patience. My mom came up and watched him and thought maybe private lessons would help. Yea, not so much. We got the same results – running in circles.
We continued the swim lessons he had taken since the Mommy and Me classes. He was now 3-1/2 years old and he moved up to the big boy class. He refused to get his head wet! His fits grew worse.
We moved again to another house with a yard. Maybe he just needed some room to get the wiggles out and help with the fits. This house even had a play room. Right before we moved my son had begun to urinate in places other than the toilet. He had been potty trained since he was 2 and we couldn’t understand this. At this point it was just in the bath tub but once we moved it got worse. His urination expedition went from the bath tub, to the carpet, to the closet and various other places. His bedroom reeked of urine!
We tried everything from punishment to rewards to making him clean up the mess. We read every book and tried every method to correct this behavior but nothing worked. His fits got worse and I once again was pregnant with number 3. His fits and a pregnant momma made life really rough. Luckily, my husband has the patience of a saint! 🙂
Fits happened over anything and everything. We decided to not send him back to preschool the next year. We were not pleased with the school he attended the previous year and I thought that teaching him at home would be best. Actually, it was my husband who began the homeschool research. When we discussed this option, he told me that if I wanted to do it, then go for it. I ordered the materials I would need and got a room set up. I was so excited! Besides, I was already teaching my kids since they were born!
My oldest, whom we refer to as Bookworm, is incredibly smart. His memorization skills are impeccable. When he was just two-years-old, he memorized John 3:16, John 3:17, Psalm 23, 1 Corinthians 13:11 and 13:13 and many more. By age 3, he memorized over 50 verses and just about every Dr Seuss book! He would recite the Cat in the Hat to me! Our immediate thought was that he was bored in school, which is another reason we decided to homeschool. I thought homeschool was going to be a piece of cake.
My pregnant self began teaching him and, oh, I don’t know, 10 minutes into the lesson and he has a major meltdown. So much for homeschooling being a piece of cake. I was at a loss. I didn’t know what to do. I panicked and placed him in another preschool. This one assured my husband and I they would take the advanced kids and push them on to more Kindergarten level work and he would be fine. This was another private Christian school, one highly ranked and we felt it would be great for him. Again, it wasn’t. It was another nightmare and he didn’t learn anything new. I wanted to scream!
I was still trying to get a diagnosis. I just wanted answers. I was pushing to get seen at the local Children’s hospital and I was met with one roadblock after another. Then, out of the blue, my husband received orders sending us across country. We pulled our oldest out of preschool, packed up the house and began our trek to another place we would call home.
I had every intention of enrolling my son into school when we arrived at our new destination. I was not such a die-hard homeschool advocate at the time. Come to think of it, I was more like Jonah who continued to ignore God. However, we can only ignore God for so long until He makes His plan abundantly clear by closing doors and directing our path. The school district at our new residence refused to mainstream my very smart boy because of his issues. They said that he would be placed into a special needs class because of his behavioral and social issues. We have nothing against special needs classes; however, we know our son. We wanted him to progress and not digress. The classroom intended for him at this public school would reinforce other poor social and behavioral skills.
At the time, my son would mimic what other kids were doing (i.e. banging their head, writing on walls, throwing toys, eating crayons, spinning in circles, climbing up slides rather than sliding down slides, etc.). The class intended for him consisted of children with severe learning disabilities. My son didn’t have a learning disability, but rather social and behavioral issues. Many of these kids couldn’t talk or perform tasks equal to their age. As I mentioned, I don’t have an issue with these types of classes and, in fact, thrilled these classes exist.
My husband was deployed during this time. It wasn’t fair! He needed to be here to help me through this! I desired his guidance, direction and opinion. I had two options moving forward. Take care of this myself or wait until I could talk to him. I waited until he called. HA! My wait was short. He actually called the next day and I unloaded everything on him. I remember hearing him saying, “Uh-huh. Okay. Right. Yes.” Finally, I wasn’t alone. He agreed with me. I knew he had some connections or resources to get our son mainstreamed in the school system. I knew he was going to call the big wigs and get this handled immediately! Once I finished, he said, “Laura, it’s simple. You will just homeschool him.” There you have it. Our homeschool journey began and, honestly, this was the best choice that we have EVER made regarding our kids’ education.
I also continued to spend countless hours researching Asperger’s. Although my son didn’t have an official diagnosis, everything fit. Throughout my research, I found a therapy called ABA (Applied Behavior Analyst), which is proven therapy successful for kids with Autism and ASD. I never heard of ABA prior to this. So, the next item on the list was locating an ABA therapist in our area. I searched and searched and finally, through a blog post, I found one. I don’t mean a good one, or a company that provided one, but ONE. Yes, only one!!! I called her immediately and requested a meeting with her. She came over to my house soon after, met my son and I immediately felt a sense of peace come over me!
After speaking with my husband, we decided to hire her and private pay until we could figure out a diagnosis if one was to come. Besides, her evaluations of my son would either confirm what we already knew or discredit what we thought we knew. Either way, it was still a step in the right direction. When she began her evaluations, my son’s sleep regimen was out of whack. He had gone from this sweet baby who slept through the night to this toddler who could stay awake for three days. It was a nightmare to say the least.
Our first ABA therapist was leaving. Her hubby was military and received orders to move. She got me hooked up with another ABA therapist before departing. With the help of both ABA therapists, we got my son the help he needed. I can never say enough about our ABA therapists. Both of them were absolutely wonderful and the timing of their arrival was perfect! Drastic improvements were made with my son’s behavior. He stopped banging his head to fall asleep; he slept through the night; he could finally go places in public without so many meltdowns. He wasn’t perfect and we still had quite a way to go, but we were on a wonderful path within 6 months of beginning the therapy.
God taught me so much during this time period. I learned to trust and rely more in Him. I learned that, because of my hubby’s job, I would have to do many things without him. I learned to pull up my big girl pants and tackle each obstacle head on. It never gets easier when your husband is deployed to an area where he may never come back home. Many nights I just wanted to throw my face into my pillow and cry.
Although my mom came to visit quite a bit to help with my kids, I needed the man I married. I was overwhelmed and stressed out. I wanted to quit, but God was faithful. I learned a great deal about patience. I learned that while the plan may not always go the way I intended, God has a plan that is always better. I had a hard time feeling His presence and feeling His encouragement, but He was always there, holding my hand on sleepless nights. I spent countless nights so tired I was unable to sleep.
Through the meltdowns, the tears, the times I wondered why everything was so hard for my son, God was right there. He will never leave us nor forsake us. He doesn’t tell us life is always fair. He doesn’t claim life to be a bed of roses. Nor does He say that nothing in life will ever go wrong. However, the Bible is full of promises to help us through the times we so desperately want to curl into a ball and just cry. The Bible is full of comfort for the times we are so tired that we’re unable to cry. Often, God uses the trials we face to pull us closer to Him, which was the case with us. I always felt like I had been a good Christian but let me tell you, my son taught me more about God than I ever thought possible.
When my oldest turned 6, we finally got his diagnoses of Asperger’s. The doctor who diagnosed him said it was very obvious and found it hard to believe he wasn’t diagnosed sooner. Many parents are upset when they get such a diagnosis, but I was relieved. We could finally move forward and figure this whole thing out. My son has Asperger’s, but Asperger’s doesn’t have my son. I refused to change who he was – who God created him to be. I wanted to learn how to parent him the best way that I knew how. I dove into more research. I read anything I could get my hands on. I even sent my husband books while he was deployed. We were a team and I needed him to know more about our son’s diagnosis and how to work with him once he returned from deployment. I sent my hubby paperwork from the doctor and a plethora of internet links. When hubby came home on R&R, he used that time to learn more how to work with my son. He observed his therapist at work with him and was able to take that and apply it to his parenting. We wanted the very best for our son. Between homeschool and his ABA therapy, we were able to give my son the 40 hours of ABA that was recommended for him to thrive and thrive he did! Our son was reading on a 6th grade reading level once he completed Kindergarten. He was able to leave the house and go just about anywhere. He thrived on a schedule and did wonderful! We eventually PCS’d. I had my doubts concerning how he would handle this change, but he continued to thrive.
At the time of writing this, he is now 8. Some days are harder for him than others. However, those days are becoming fewer. We are now in the process of moving again and I could not be more proud of my son. He has knowledge about God that most adults do not have. He loves the Lord with all his heart and wants to live for Him. He is finishing up his third year in AWANA, his second year in Cub Scouts and is wonderful at the piano. He is well above average in all areas of school except writing, which is a common trait of Asperger’s. Many days you would not notice he had Asperger’s. He has come so far in such a short time. I give all glory to God. He is the Creator and the Healer!
That is the first part of how Autism came to live at our house. I hope you will stay around for part 2!!! :