Joel is changing...

...in so many ways, lately. He is doing several new things just since the last time I posted. On the good side he is saying more and more partial words. He now says "Dada", "Mama", "momo" for more, "outsss" for outside, "issss" for this (like when he wants something he'll say "issss"), "pu" for up, occasionally when eating he'll copy us with "mmm mmm mmm" or "ahhh", and he used to say "Bye-bye" but I haven't heard it in more than a month. It's the second time he's lost bye-bye. This is the interesting thing about Joel. I don't know why it happens and I haven't heard a good explanation from anybody I've asked, just some guesses. He has had several words that I have heard anywhere from one to one hundred times and they just disappear. I have no idea why. The speech part of his brain may have been removed when they did his brain surgery, but we don't know for sure. Just speculation. A couple weeks after his surgery Joel was saying "Dada" but speculation is that he was just experimenting with sounds. About three months after surgery Joel looked deep into my eyes with the most loving look and said "Mama". That was the first time I heard him say mama and it melted my heart with the look he gave me. I know he was calling ME mama. I know it because of the way he looked into my eyes when he said it. Joel doesn't look deep into our eyes often. In fact it almost never happens, so I know it was for me. But speculation says that he was probably just experimenting with sound since we didn't hear it again for 12 whole months. His surgery is now 16 months ago and he seems to be pretty much on track with a child about that age. But then how do you explain his words he said so soon after surgery? And why did he say "bye-bye" for more than a month with waiving and then just had it disappear for more than 3 months? I don't have any answers. Joel is very complex and this area is a mystery not only to us but also to his therapists and doctors. Good things happening lately also include his using gestures to direct us to what he wants. If he wants a toy from his toy bookcase he comes and makes us pick him and up and then he uses his upper body to take us to the shelves he can not reach which hold his favorite toys. If he wants to swing (which he LOVES, by the way) he will come get me and take me to the swing and pull on me and protest with his voice (anywhere from whining to screaming, if I'm not fast enough) until I put him in it. I love that he is communicating with us what he wants. What I don't love is the not so good things happening around here. Joel has started throwing temper tantrums. When he doesn't get exactly what he wants exactly when he wants he totally loses control. Deliberate screaming and uncontrollable crying is happening more and more. Often he gives me a look before he starts...the look that says you are not giving me what I want and I'm gonna let you have it because I'm mad. It's hard to figure out exactly what is going on. Is he just catching up developmentally and starting to act like a two-year-old? (We all know about the terrible twos.) Or, is he frustrated because his thinking is more advanced than his communication skills? Or could he have the start of behavioral problems? This last one is one of my biggest fears. Many different behavioral issues are linked to TSC (click here to read about it on the Tuberous Sclerosis Alliance website) including aggression, sudden rage, hyperactivity, attention deficit, acting out, obsessive-compulsive behavior, repetitive behaviors, staying in their “own world,” being nonverbal even at an age when most children are speaking, and other autistic behaviors. Please be in prayer with me that these temper tantrums are just typical two-year-old behavior and not a behavioral issue from the TSC. Also, please pray that my fears will be quieted and that God's peace will come over me as I deal with this newest behavior. Thank you to everyone who is reading this blog. I have had Tuberous Sclerosis Awareness on my mind and heart lately and I am feeling led to focus more on this. I would like to help other families who are dealing with seizures and/or TSC, visual impairment, autism. If you know of any blogs dealing with these issues could you leave the address in the comments...I would like to put up links to other people dealing with these issues. Thank you. PS I forgot to mention that Joel has become a book-worm. We moved the board books out of my older boys room and into Joel's room and he decided he was ready for them. He now follows me around the house with a book wanting me to sit and hold him and read to him. I LOVE IT! I was worried that he wouldn't develop a love for books (or even like them) like my other boys do. I believe that reading or even being able to sit and be read to is a key to education and I think this new interest will open new paths in his brain and help him learn in new, wonderful ways.