The past few weeks have felt like wasted time in my opinion. I feel as if the hour we are spending with the therapist is really just a play session but I am learning how to sign to communicate with Rhiannon and I guess for that I am grateful. On the other hand I want to hear my daughters lips speak more then just NO and Uh uh! I look forward to the day when I hear her say "mommy I love you!" I would just settle for "Mom" right now!
During our therapy sessions, Rhiannon is playing with Ella and they play. I don't really see where any therapy is coming into play, and then on the other hand I see my daughter interacting in different ways then she does with me and her siblings. I suppose because I did not go to college to be a speech therapist, I do not understand the physical therapy that is associated with speaking.
Rhiannon has a disorder called Motor planning disorder. This is where the mind is unable to properly plan the next step to get the desired effect. Meaning, our brains intake a step (or process) and then it automatically goes through a series of steps in order to generate the desired outcome. In order for Rhiannon to take a toy and call it by name there is at least 10 steps to get the toy into her hand, her mind to process what I say the name of the toy is, then her brain has to look at the toy again, process what I said, then go through more steps to get the word to form in her mouth to position her tongue where it has to be to make the sounds along with her lips and mouth shapes to get the word to come out. (WOW that is a lot of information to try to take in!) So with the Motor Planning disorder, she has to be taught how to make different shapes with not only her mouth but also with her tongue.
So here I sit teaching my princess how to make raspberries with her mouth and tongue, to blow bubbles in her milk and cereal bowls, to stick her tongue out and move it from one side of her lips to the other and many other BAD behaviors I have always scolded the boys for doing. Now I look at my daughter and think, how can she be my princess with all these bad behaviors I am now encouraging! In the process she is developing a very SASSY attitude! I am not liking this one bit!
I was getting after Rhiannon the other evening for not picking up her toys. She turns to me and places a hand on each of her hips, shakes her bum from right to left then with without missing a beat she sticks her tongue out at me and made that naughty sound "pttttt"! I wanted to laugh as it was funny to see my princess, so prim and proper do something like that! It was so unpredictable it was funny but I got after her and tried to explain to her there is a time for the therapy sessions and this is NOT one of the sessions!
It is very difficult for me to accept the issues that are going on here with her because I do not see major improvements over the past 4 - 5 weeks yet as our therapist claims she sees in her. She says she hears sounds I am not hearing in Rhiannon and believe me, I WANT TO HEAR HER TALK!! We sit and take so many things for granted in life and when we are faced with something like this it really makes us appreciate those things that much more. I am excited when I hear other peoples children are talking and doing things that Rhiannon is unable to do at this time. I am also very frustrated at times when I hear people make comments about her situation when the know what is going on. I am trying my hardest not to become so frustrated but it is just very difficult because she understands things other children her age does not understand, she can do things well above her age, and she is incredibly smart. She is just unable to process certain things and in the end, unable to speak what the true sounds are of words.
Rhiannon is trying to talk. She babbles and babbles. She is able to make syllables even to words that we speak. For instance, we were saying yellow the other day and she made "SOUNDS" that had a two syllables. When we said Red she made a sound like "ed". We said blue and she made a sound like "ou". So she is trying to process what we are saying which gives me hope that we will use the signing only temporally.
I explained to her therapist that I am a person who has to set goals and I achieve them. I told her my goal for Rhiannon is to have her saying 5 new words by the end of January. Ella looked at me and Richard and told me that is most likely unachievable. This broke my heart but I am frustrated because I need to look for employment and unable to with the schedule Rhiannon is on and in January our sessions move to twice a week every week. I feel as if I am falling further and further behind because I can't place Rhiannon in just any daycare setting, it has to be where there are people who are certified and knows some signing so that Rhiannon is not pushed further back in life. I now have my associates degree and my bachelors program is on the way now, I want to apply what I have worked so hard for but now I need to help my daughter as well. I feel as if I am being torn in too many directions.
In the mean time, I can not begin to put myself in Rhiannon's shoes and want so desperately to be understood but unable to process the steps necessary to get the words to properly come out. She tries so hard to speak, to say what needs to be said and in the end becomes frustrated and cries. It breaks my heart to help her some days. I feel so worn out when the day is over. I just wish there was a magical button to push to get her where she should be right now verbally. I want to help her and it is my goal right now to get her to say the words to help her in her daily tasks.
Potty training is not even reachable right now. She can not tell me when she has to go and she is already over her signing lessons! She only signs when she wants to because she has learned with certain people if she just screams long and loud enough they will give in. This is NOT helping me with helping her. I have my days where I am just so worn out that I also give in and I wish I was stronger because this is much more difficult then I ever expected this to be.
Rhiannon has learned many signs necessary and uses them sometimes so fast we don't see what she is asking for. Other times she wont use them and makes the noises of the words which we don't understand. This frustrates her as well as us. When we are teaching her signs we speak the words as we sign them. I can sit at night during our third session daily and while looking at a book with her say "Rhiannon can you show me kitty" and she will quickly make the sign. "Rhiannon show me milk" and again she will make the sign. "Rhiannon, show me more; open, drink, thirsty, baby.... and she will respond appropriately.
The other night, out of the blue I was on the phone and asked her to show me kitty. She did it, and then she turns her back to me and faces the t.v. on the t.v. was a baby doll and she did the sign for baby and said "BAY BEE"!!! The person I was talking too heard it as well and she turned around, saw my excitement and said it again! I have not heard her say it again but she said it! She said baby!
So now added to her vocabulary is :
No; Uh Uh and baby! I'll take it, still not mom or mommy but I'll take it! One small step is a huge accomplishment. I don't understand or agree with the therapy sessions but it is working. I may have majored in a different field and I am thankful to those who venture out and take on a tough job such as speech therapy because I firmly believe without Ella, this would not be possible because my patients are worn thin not understanding. I think there are things in our life that God allows to happen that we can not fully understand. Even those things which we can not control sometimes we have to take a few steps back and just set the cruise control and not try to accelerate because, that curve can be too sharp. I am thankful I stuck with the sessions because hearing her say BABY made me cry because I was really starting to believe I would never hear her say anything.
It may have taken a month to say a new word, but I think it was well worth the wait! I just wonder how long it will take until I hear her say my magical word I long to hear!?!?
