Wednesday, December 2, 2009

Being Braves Mama #1

My older son Brave, has Trisomy 21, AKA DS or Down Syndrome. Every day is a challenge. He almost always has a smile on his face and is very talented at bringing smiles to the faces of others. There are some things that I have found to be very stressful. One of those things is when he learns something new, he stops doing other things. This is typical behavior for all kids his age but because is 4 and is functioning mainly inbetween 18-30 months, sometimes this lapse in knowledge lasts a bit longer. It also takes him a lot longer to 'get' things and to respond. He doesn't really speak yet, and what words he can say are only comprehendable to me. We
ve been signing with him since we first adopted him 3 years ago. SOmetimes he signs, sometimes he doesn't. I've been potty training him for 2 years, inititally it was habit training. He now will go to the potty all on his own but won't tell anyone when he has to go so he still has to be prompted in unfamiliar territory. After enrolling in the SP. Ed preschool program at the beginning of the year, all of these things GOT WAY WORSE!! He stopped using the toilet all together, he stopped signing completely and picked up several bad habits like spitting and biting. I pulle dhim out of the program after 4 months. I've been working with him at home. He can now match picture cards, he vocalizes a lot and makes really cool connections (like when he sees a dinner table in a book or movie, he will say and sign eat). SOmetimes he blows me away with what he knows!! He started saying a compound sentence " Stop Dokkie!!" (stop doggie, we have an obnoxious little puppy who loooooves licking Brave). This morning, we were going over sounds and words and he tried to say Bear, Boat and Goat when asked. HE HAS NEVER DONE THAT BEFORE!! Usually he just smiles at me and starts laughing. SInce he is doing so well, I though about enrolling him back in school, in the preschool program. They didn't know their arse from a hole in the ground and kept transfering me over and over and I end up with a "someone will call you back". Haaaaaaaaaa. I'm discouraged. I know I shouldn't be but the education system where I live is terrible (average school ratings are 1 and 2). I'm afraid after I put him in he will lose the info he has gained because the teacher/student ratio is so high, he won't get the attention he needs to retained information. I've struggled with the idea of homeschooling until he reached first grade, compulsary education. Sometimes it is so divine, and sometimes its so damned hard, Being Braves Mama.


  1. I'm sure you're on top of everything, but is he getting Regional Center services?

  2. You're right, it's divine and difficult! However, I have learned that I celebrate MeMa's accomplishments way more than I did my "typical" son's. I encourage her more, challenge her more and expect more from her. And she never fails to reach the just takes her a lot more time!

  3. Yeah, he's 'getting' RC services. THey honestly don't do much though, other than make me fill out the same paperwork over and over again. Its a constant battle between IRC and the school district. One says the other is responsible for this and that and vice versa..

    CJ- I agree with you. I do challenge him more than our typical son and expect more from him and get SUPER excited when he does anything but end up feeling guilty about that.