|All photos by Nat.|
It was one of those silly milestones that I have agonized over, put false deadlines on (maybe he will say mama for my birthday, Christmas, his birthday and on and on) and pushed for. We saw a performer who's son has Down syndrome and she talked about how her son did not say Mama until he was four years old. My heart broke for her and my heart broke because never in a million years did I think Joey would not be able to say Mama for that long. It can be so difficult and so frustrating when you start comparing, asking, wondering and putting arbitrary age ranges on milestones such as walking, talking and potty training. As my mom and grandma used to say, it's kind of like trying to teach a pig to sing. It annoys the pig and frustrates you. Joey-- I'm not saying you are a pig or a trainable barnyard animal- I'm just trying to explain what certain acts of futility feel like and I have started to learn when I just need to give you some room to breath and some room to do it on your own. It goes back to what Miss Donna first taught me-- the OWL principal. Observe. Watch. Listen. It works for more than speech therapy--it's a lesson for every day of life.
Instead of false deadlines, Joey has taught us to set high expectations and then let him show us when he is ready for each incredible milestone. He has taught us that providing opportunities (practice, therapy, playing, playing and more playing) is the most important thing we can do for him. Like a little seed who needs sunshine and water, he is growing and blooming in his own way and in his own time. When we let him do just that, it is incredible what he accomplishes.
What was that you just said, Joey????
That being said, being non-verbal is a very real issue for many individuals who have Down syndrome. We decided early on that speech therapy would be one of our number one priorities for Joey with the belief that if we can help him learn how to communicate and how to express himself he will have that many more opportunities in life. As a mom, I want him to be able to communicate clearly for safety reasons as well. I want him to have a voice and to be heard and to be able to express himself as well as defend himself if he ever needs.
Just about six weeks ago Joey's amazing speech therapist and I made a decision to no longer ask Joey to say Mama. She believed that he was completely capable, but it had now become a power struggle and he was receiving a LOT of attention from me constantly asking him to say it. It was a tough habit to break, but after a week or so I quit asking him to say Mama.
And just like that, once it was on Joey's terms, came that glorious word that sounded like all of the angels in Heaven singing at once....Mama.
I held on to it for about two weeks. I thought it was a fluke. A "happy accident" that we talk about at speech therapy. But then Tommy heard it. And then Tom heard it. And then one day I walked in the kitchen and he said it again while looking into my soul, "Mama." I still don't completely believe it when I hear him say it. I am so very grateful that his verbal skills are growing and that he is motivated to talk.
We think he has started to say, "Ba" (for bath), "I did it", "mine", "go go", "quack", "drink", "cracker", "more", "ha" (for hot) and "all done." We have also been doing sign language with Joey since he was born. Tommy and I both know about 50-100 signs and we try to use them throughout the day with Joey. Joey also knows quite a few signs and he uses many of them with the words he says. We have used almost all of the Baby Signing Times DVDs with some success and both boys really enjoy watching the DVDs.
There is also an awesome FREE app called "ASL Dictionary Lite", which has videos for a ton of every day words. This one is exceptionally helpful when are out and I'm trying to find the sign for a word we need to learn. This is how we learned the sign for "school" and for "teacher" for Joey to learn.
For those moms who haven't gotten to this "Mama" milestone yet, it will come. One mom told me before it happened that the reason he didn't say mama yet was because you don't need a word for the person who is your everything in life. My thought was, "Yes you do. That word is Mama."
With that in mind we celebrate Joey finding his voice and I pray that your children are achieving their own milestones in their own time and meaning. We just read about a friend's daughter on Facebook who took her first steps! So much to celebrate in our world of incredible children who are differently-abled as well as in our every day lives.
Does your family have something fun you are celebrating right now? If you look, I bet there is something to celebrate.
Also- I'm working on a post examining the question...
If you could take away Down syndrome from your child's life, would you?
I have received some wonderful thoughts on this. If you would like to express your thoughts, please email here. All names will be kept confidential.