Monthly Archives: May 2016

4/27/2016

Today I sat in Chapel crying. Wiping tears that I hoped no one would notice (as is usually the case) but at the same time I wanted to get up and shout, ‘Look, look at him! My Mr. Man, he did that!’ It was a small thing, but very few truly understand how much it actually meant. Let me explain..

It’s April, which means it is insect month at school. All the classes are learning about butterflies. They have watched caterpillars grown and disappear into their chrysalis’s. Today was Wednesday, Mr. Man’s favorite day of the week. Wednesday means Chapel and soccer. Important things in a little boy’s life. Today was an extra special day. The pastor had asked for his help in chapel. He was going to help demonstrate the life cycle of a caterpillar. We had discussed what was going to happen. He was excited, but also visibly anxious. He wanted to do it, but was unsure. The teacher wrapped him in toilet paper to illustrate the caterpillar inside its chrysalis. Then as the entire school counted to 3, Mr. Man smiled with so much excitement and laughed when the pastor asked if he was ready “yeah!” His face shown, pure joy (start tears). At 3, Mr. Man threw up his arms and burst out of the chrysalis as a butterfly. The symbolism was not lost on me. A year ago my little man would never have gotten up on that stage in front of all those people, he wouldn’t have been able to stand being confined and wrapped up and he certainly would NOT have been smiling and laughing about it. He would not have spoken in front of that many people, even if it was just a simple ‘yeah’. He has grown SO much this year. My little caterpillar has changed and he is emerging. Starting to show the world the beautiful butterfly within. We are truly blessed.

The developmental pediatrician ruled out Autism. She said he was too open and friendly toward her. (Go figure the one time in his life he was ever cooperative with a doctor/stranger.) Around this same time, Monkey entered our world. With far less fanfare than his brother. We were worried Mr. Man would react poorly to this new little intrusion, but were surprised, for the most part, he really didn’t notice his presence or decided to ignore it entirely. Developmental pediatrics wanted ST to continue and wanted him enrolled in a preschool where Mr. Man could hear language used by other children. So for the next few months, Mr. Man went to class a few days a week, had ST and life continued as “normal”. He didn’t talk and we walked on eggshells as to not upset “the beast” which typically resulted in the fear our neighbors would call CPS from hearing the prolonged raging or something hard being thrown at our heads (Kid has always had very good aim). 

 Just shy of his 3rd birthday, the developmental pediatrician told us a she believed Mr. Man had Developmental Apraxia of Speech…. Ensue mama research mode. Apraxia-kids

At three, state services would no longer cover Mr. Man’s speech therapy. He was referred to the local public school’s priority preschool. He received further evaluation and I was introduced to my first IEP meeting, from the parent side of the table. Mr. Man qualified for the preschool program with delays in Speech, Fine Motor, Cognitive, and Adaptive Skills. Although we were not concerned with his cognitive ability, we chose not to question the evaluator because the results helped qualify him for a program that would give him the speech therapy he needed. I was told that his scores in receptive language were actually lower than his expressive language, which I laughed at because the child didn’t speak! How was that even possible?! I was told this was because he did not respond to what the evaluator asked him to do. Of course he didn’t, they were strangers. But we move on….

Mr. Man loved his school. The teacher always said he was such a great helper and never showed any anger. He went to his priority preschool 3 mornings a week and the rest of the time he went to a “regular” preschool with “typically developing peers”. He was doing great in speech and blew through his IEP goals. His speech took off. What an exciting year, to hear his little personality come out. Mr. Man was excited about everything, and what a sense of humor! It was interesting to hear how he looked at the world, as he has a very unique perspective on things.  

The doctors told us that his intense anger was frustration due to his inability to communicate his wants and needs. We expected to see the anger subside as his language improved. However, this was not the case. His anger was intense and sudden. It would come and go like flipping a switch, suddenly and dramatically. Often, there was no obvious trigger. When he got angry, he would also become very impulsive and act without thinking. He was getting bigger and stronger. I began to worry that he was going to hurt himself or his brother. As suggested by previous doctors, we decided it was time to take him to a psychiatrist.

The psychiatrist felt that his anger was the manifestation of underlying anxiety. He suggested some medication and we agreed to try. (I am not a fan of medication, especially for children. But, at this point, something needed to change and I was willing to try anything!) It took awhile to adjust the dosage…we had some low moments, but eventually we began to see some improvements.  For the first time since he was born, I began sleeping through the night. Mr. Man was a horrible sleeper and usually woke me up throughout the night. Monkey had been sleeping through the night for about a year and Mr. Man was still keeping me up! The medication helped him relax and sleep…..thank goodness. We also noticed a great improvement to his impulsivity. While he still gets angry (a lot!), we’ve noticed that he now stays present during his fits. This allows us to talk him through the anger and help him understand reasoning and appropriate ways to behave in given situations. We have a long way to go with this…..but he’s working so hard. The most exciting improvement (to me) is seeing a complete change in his focus. He can now attend to what he’s doing in a way that I never realized was an issue before. All of his fine motor delays, disappeared. He went from scribbling (not able to even draw a line) to drawing circles and coloring in the lines, overnight. He’s working on learning to write his name and is currently tracing his letters superbly. 

As we quickly approach Mr. Man’s 4th Birthday, I realize that we still have quite a way to go before he is “where he should be”. He talks a ton now, but it is still very difficult for those outside of our family to understand him. Socially, he has quite a bit of catching up to do. But I am confident, with the amount of improvement he’s made this year, he will get there. He will and this is our journey…..  

I will spare the birth details, but needless to say Mr. Man arrived in summer of 2012. Most people talk about the joys of birth. At the time I didn’t know better, but came to the conclusion….those people are idiots, because it sucked. Complications, on my part, led to a very long recovery and Mr. Man entered the world quietly, which I was told is a bad thing. (Rest assured, I let everyone know that I was confident, in time, he would master the art of crying….boy did he!) There were concerns over his breathing and he was rushed off for tests and monitoring. Six hours later, he was deemed fine. Hindsight is something, maybe it has nothing to do with anything, but sometimes I do wonder….

Mr. Man had a typical infancy. A few ear infections, found out he had a penicillin allergy, but nothing major. He was a very happy baby. I remember telling my husband we were lucky…he was far too easy. He met all his milestones, though a bit on the late side but nothing overly concerning. After all, children develop at their own pace. He started talking.. Mama, ball, quack (for duck), meow (for cat), etc. By this point, several people had commented that they were concerned. He had several peculiarities, as well as major stranger anxiety. If anyone other than my husband or I were present, he would shut down . He didn’t play with toys normally. He would either line them up, throw them, or pile them together. Then the anger started, slowly at first. He would often slam his head into the wall or on the ground. He was very sensitive to lights, sounds, and textures. None of this concerned me in the least and, having been a teacher for 10 years, I knew the red flags. I knew what people were thinking. I was not concerned. Until 18 months, when he stopped talking.

It was as if the few words he knew were completely erased from his memory. This I knew was not normal and now I was concerned. I really don’t remember all the details, but we had him evaluated and were told that he didn’t qualify for any type of services, he was fine. Great! (I’d like to add a side note here for anyone wondering about vaccines. As a family, we were still deciding how we wanted to handle vaccines. So, at this point, Mr. Man had yet to receive his MMR. Whatever your view on vaccines, I am personally glad that he had not gotten it yet. I don’t have to question whether or not that was a factor in the sudden disappearance of his language. I don’t have to play the guilt game. There was no way this could be blamed on his vaccines.) By two-years-old he had made no further progress in language and he was getting angry, REALLY angry. He was having night terrors and would fly into rages at the drop of a hat, for no apparent reason. His eyes would glaze over, he would scream and rage like a wild animal for 30-60 minutes. You could not reach him. Night time was the worst, his longest meltdown lasted 1 hour 45 minutes. He didn’t want consoling and any attempt at contact was met with massive physical aggression. As you can imagine, this mama was a mess!

We later realized that he had started talking, we were just unfamiliar with the language. Mr. Man had his own words. Cheese was owsh, popsicle was mungin. You can see why we were slow to recognize this. I demanded another evaluation. This time he qualified and we were sent to a developmental pediatrician. Speech therapy was set up and our journey began…