In December of 2012, Dr. Vernon suggested that I take Braiden to see a childhood psychologist in Warner Robins. Braiden had just turned three that September and he still wasn’t really talking. My son was three years old and if he said ‘Mommy’ I would take a moment to thank God that I got to hear him call me that.
My baby sister went with me and they sat us in this little room alone for a few minutes before Dr. Baasin came in and talked to my sister and I about Braiden. She gave him a few cursory glances and somehow assessed that he was not autistic. Of course, Braiden was cowering in fear because doctors on are on his list of things that are bad in his eyes. She told me that he was young and probably only had a speech impediment.
In January of 2013, Braiden started speech therapy with Miss Kayde Campbell at Developing Minds of Macon. He fell in love with her and loved going for the first few months, then he became aggressive and would scream and fight going. He would do fine during therapy and then when it was time to leave he would throw a fit again. Kayde is the sweetest person in the world, and she loves my son. I get a text about his progress, she sends me videos of their therapy sessions and she praises him like nothing in the world when he has a great day. I have never once seen this woman discourage him during a bad moment.
That trust in Miss Kayde was built and after eighteen months of speech therapy she told me that he had made some amazing improvements, which is very true. In eighteen months Braiden has gone from saying ‘Mommy’ and pointing and whining about what he needs to actually asking for things. While all the words don’t come out clearly and there are still moments of hand gestures, grunts and groans, he understands that I need words to know what he wants. Miss Kayde referred us to Dr. Rubin in Atlanta, a pediatric psychologist who specializes in autism.
Miss Kayde and Braiden after a great Speech day.
I went home and I cried. I told my husband and he blamed me and my family for Braiden’s behavior. He absolutely refused to believe that our son was or could be autistic. That night pressed hard on our marriage and after hours of fighting and crying I thought I was going to give up. “He’s just spoiled, there’s nothing wrong with him.” “Its because your family gives him whatever he wants.” “Its because you think I spank him too much.” These are the phrases that were thrown at me the night I told my husband that we were being referred to an autism specialist.
I prayed. I cried. I vented to friends. I did a few rounds on the punching bag. I slept in my son’s room with him that night. We stayed up late watching movies, reading books, and singing songs. After I had gotten some sleep, I decided I wasn’t going anywhere until this doctor looked my husband in the eye and told him that our son was on the spectrum. Knowing that it was such a strong possibility, I changed the way I approached Braiden. If he freaked out, I tried not to get frustrated. If he wanted something I would kneel down on the floor and force him to slow down while guiding him through how to ask for what he wanted. When Tim saw that Braiden was acting better with that approach rather than us forcing him to eat things he didn’t want to eat, or him freaking out because he got the smallest little hurt, he started doing the same things.
Because this doctor is the only doctor in our state that has this sort of speciality, we were on a waiting list to be seen in May of 2015. Luckily they had a cancellation and were able to see us July 31, 2014. When we pulled up to the building, Braiden immediately got scared because it was a hospital. He freaked out while they checked his vitals and freaked out when they put us in a room. After giving Braiden a moment to get comfortable,
The testing process for those who don’t know…
Dr. Rubin came in to meet him and Little Man freaked out. “There are no owies my hospital. We don’t do that horrible stuff here, Braiden. Here let me show you.” Then he walked out and got a small tub of play dough to show Braiden he could play. Once Braiden was comfortable, Dr. Rubin sent in a pediatrician to take Little man’s medical history as much as I could remember. We talked about milestones, first words, hospitalizations, surgeries, all down to the way he eats meals. She then did a quick neural exam, checking reflexes (Braiden couldn’t stop laughing at how she made his legs jump), watching the way he would walk and run, and made him follow her finger with his eyes.
Dr. Rubin came back in and introduced us to their speech pathologist at the center and played with Braiden for a few more moments. He watched what little man would make with his play dough, got high fives and actually got a few words out of him before he left us with the speech specialist. She talked to Braiden and did a speech exercise with him. She spoke to us about his speaking habits and the gestures he uses. After she wrote down some notes, she sent Dr. Rubin back in and he brought an occupational therapist in with him. Once again Dr. Rubin spent some time with little man and then left us in the hands of his team member.
OT just watched Braiden play with his play dough. She noted that he kept making the same things over and over again. I watched her doodle down some notes and she watched him very closely while she spoke to us about things he did at home that were repetitive in nature. It forced me to open my eyes to behaviors that had been right in front of me and the first psychologist had told me he was fine. That a diagnosis of ‘fine’ was something I clung to and in the moment I was reciting the things Braiden did like walk in circles, recite his alphabet over and over and over, or ask the same question twelve times or when he was stuck on saying the word ‘six’ for almost a year.
Three hours after checking into the office, Dr. Rubin came in and sat down with a smile on his face. “I’m going to tell you a little bit about your son.” I found this little humorous considering that he’d known my son all of three hours, but I let the man speak. After he talked for twenty minutes and knew Braiden’s behavior better than I ever thought I could, I looked at Tim and his jaw was sitting on his chest.
“Your son is what we consider high functioning on the spectrum. He’s verbal, he’s not good at it, but he can communicate to an extent. He’s mobile, he’s got great energy, he’s happy, he’s healthy, but all the signs are there. He’s sensory impaired, meaning that he can slam his head against concrete (people that remember that??) and feel nothing, but then he can get a paper cut and you would think he got hit by a car. He smells stronger so strong stenches make him gag (its the reason he can’t go to the animal shelter to see the dogs), He hears things louder (he covers his ears when Tim plays the drums, the TV is too loud or public toilets flush). Things taste different to him so he is incredibly picky about what he eats. The starving him until he’s hungry enough to eat what you cook will not work on him, because what you cook doesn’t taste right to him so he can’t eat it. He probably eats bland things like chicken nuggets, fries, cheese pizza, mac n chess, plain pasta, bread. He’s probably really good at puzzles and has a memory like you wouldn’t believe. That’s why when you go to a doctor he thinks he will get a shot. He can recited movies and songs like its nobody’s business, but he can’t tell you what he wants to say all of the time. That frustration at not finding words or being able to explain his emotions is why he has tantrums and meltdowns. That anxiety builds up and he doesn’t know how to tell you what’s happening inside of him so it results in his form of a panic attack.”
We are going back in February to go over his progress with Occupational and speech therapy, also to see how he does for the first half of the school year, being in a mainstream classroom rather than special education. I loved that doctor and his team. They spent time with us, they got to know my son, and they made sure through the whole process that he was comfortable and had minimal freak outs. The best part? They didn’t put my son on medications or suggest I put him on medications. His diagnosis is PDD-NOS. Pervasive developmental disorder-not otherwise specified, because he shows aspects of both Asperger’s and PDD so he falls on that middle scale.
We got in the car to drive home and my husband apologized to me. He apologized for all the horrible things he said when I told him we were going to see this specialist, he cried and told me I did everything right when I was pregnant. I didn’t drink, I didn’t smoke, I gave up caffeine, I ate more veggies than he could remember, I barely ate red meat, I didn’t eat seafood. I exercised, I rested, I did it all by the book. He hugged me and told me that I didn’t do anything wrong from carrying our son to raising him and he apologized for ever thinking that I did. Tim has easier approaches to our son now. He still gives him the ‘You’re a man’ tone because we’re not going to treat him SO different, just understanding that Braiden needs things explained differently helps get the point across better.
Still with me? Still reading? Excellent. I know its long, it was even longer while time was standing still and I realized that my child’s life is going to be different than I had planned when I first got pregnant.
Now I’m able to understand why we have such bad days sometimes. Now I’m able to understand that when I’m making meatloaf for Tim and I, I’m not a bad mother for making chicken nuggets, or grilled cheese, or pasta on the side for Braiden. I’m not spoiling him, I’m feeding my child what he will and can eat. When I don’t spank him for doing wrong the first time, but talk to him and explain what he did wrong, I’m not spoiling him, I’m giving him a chance to grasp what he is doing and to fix it before I punish him for something he didn’t understand in the first place. When he had a meltdown in public and I hug him close to talk really quietly in his ear, I’m not coddling him. I’m telling him that its okay, I understand that there are a lot of people, it’s a lot of noise, and it’ll all be okay. When I want my son to look at me, people think I’m crazy because I touch my nose with the tip of my finger, but he looks at what I’m doing and then he looks at my eyes. He hears me better when he’s looking at me. If he’s not, he’s hearing absolutely everything around him and I’m caught up in the mix.
So to the people still making the comments like “You know I think he’s just doing that for attention.” “He doesn’t look autistic.” “You know you should just spank him and he’d get the point.” “He’s such a mama’s boy.” “What’s wrong with him?” My son is different. There is nothing wrong with him. The world is more clear, louder, tastes funny, and feels harsher than it does to you and to me. He’s not trying to get attention, he has my attention and he knows he has my attention. He doesn’t understand social cues like conversation between adults. We’re working on it. He doesn’t understand sarcasm or metaphors, he takes what you say literally. When you say “Hold your horses” he wants to go looking for his cowboy hat. Spanking him? I’m pretty sure that’s my business and I will do so when it is called for and not a moment before. Mama’s boy? Because I’m the one who knows him and he knows that I will fight my hardest to understand what he is trying to tell me in that moment and every other moment. I don’t know about you, but I have no problem whatsoever being that beacon of light for my child. “He doesn’t look autistic.” When you can tell me what an autistic child looks like, then that argument will be considered.
Its been a few weeks now and we’re getting into a routine where Braiden’s clothes are laid out in the morning for school, his pop tart is on the table and his juice is in the fridge. He wakes up and dresses himself (Shoes on the right feet included), eats his pop tart, drinks his juice and turns on netflix until Daddy is ready to take him to school. We get home from school and he strips down to his underwear because he doesn’t like wearing clothes (part of the sensory overload) and he’s at home. I don’t see a problem with my son running around in his skivvies at home where he’s comfortable. He has a snack, we do therapy puzzles, games, coloring, homework, singing, or he helps me sort out his toys, and he helps me cook dinner or he plays a video game while I cook (great for the motor skills). When Tim gets home, we watch a movie or have an all out wrestling match that involves tickling and a lot of S-T-O-P!! Being screamed by my son when he’s had enough. Bath time (which is horrible since he hates having his hair washed) and bedtime where I sing three songs every night to him and his dog.
That is our routine, when people come to visit and that routine is interrupted, Braiden has to adjust. It isn’t always an easy adjustment, but we aren’t avoiding having company because life keeps happening and he has to learn how to cope with things outside of his routine. But, that being said, don’t mock my son because he has trouble adjusting. He has a certain way of doing things and you’ve disturbed that balance, instead of laughing, or mocking him, you should jump in and show him how you can go with the flow too and be a part of his life. Make that adjustment work for you both. When we go to other people’s houses, I understand that my autistic child wasn’t part of their plan for the day. I deal with his meltdowns as they come. I don’t give him his way to appease him, I explain to him that things work different at other places than they do at home. I don’t expect special treatment, I just want him to be respected because he’s still the same human being that he was on July 30, 2014 before we knew his diagnosis.
That little boy is my world. I will move hell, heaven, earth, sky, moon and stars for him. The only difference between July 30 and July 31 is my attitude about the whole situation. I’m a better mother for knowing my son’s diagnosis, not less of one. My son is amazing through and through and he has a wonderful support system. Family members and friends alike are asking me questions to better understand his diagnosis and it makes me smile when people put in that kind of effort because he means that much to him.
Please visit this site, by clicking the big red button every day you help fund Autism Research, therapy and tools for children and adults on the spectrum. http://www.theautismsite.com
Writing about it helps 