Thursday, March 20, 2014

speak no evil

My sweet little Greyson has suffered from a speech/language disorder since he was born. I was worried about his speech development when I had him evaluated for early intervention services when he was six months old. Of course, that is really early to be concerned about speech development, and (against my better judgement) I agreed to wait it out for another six months and see if he improved. He didn't improve, but life got in the way and instead of starting speech at age 1 we didn't start until closer to age 2. He is now three-and-a-half, and his speech hasn't progressed beyond the one year old level. He is able to communicate somewhat effectively with pointing, noises, and tears, but those methods certainly can't fulfill all of his needs. Now that he is exploring independence and really developing a personality, he is increasingly frustrated with the world. His new act of defiance is to 'shush' me and he has even started hitting when upset.

He has gone through surgeries for ear tubes and his hearing appears to be functional. The irony being that he can't tell me if he isn't hearing well, so we have to guess what is going on with his senses. Trying to weed out typical three-year old boy behaviors, versus cognitive or speech deficiencies, versus mental health or sensory concerns is a daily nightmare. I really don't know what is going on with him most of the time and it is incredibly frustrating. Grey received in-home speech services until he started preschool. He sees the speech/language pathologist (SLP) twice a week in class, and all year they have been cheerfully telling me that he is making progress. The progress he has made is relatively small, however, and difficult for me to celebrate. Going from no discernible verbalizations to a few word approximations and basic signs isn't cutting it. So, our next task is to go through yet another speech evaluation in hopes of getting a diagnosis of apraxia. Once he has a diagnosis, the plan is to get more targeted, one-on-one speech therapy services. 

However, getting started is the hardest part. Earlier this week children's hospital was chipping away at my sanity. I had been playing phone tag with the speech department for a week. Every time I got a real operator and begged them to let me talk to a real person I was sent to voice mail. I asked them to call both phone numbers, but they only called the home phone, and they only tried once a day. No wonder parents give up on getting services! The struggle just to talk to a real person is ridiculous. Finally, after calling five times in one day I was able to talk to a real person and they told me what I needed to do to get started. All of our paperwork has been sent in and now we wait for an initial evaluation to be scheduled, and then for an actual therapist to become available. 

I feel like every day that he is not getting targeted services is a loss. There is already enough mommy-guilt for missed opportunities in his short life, and I don't know how much more I can take on.

1 comment:

  1. Wow. That sounds incredibly frustrating. I know the medical system can be a bitch, but that is just ridiculous!! Hang in there. The fact that you're fighting so hard for him shows that you're a good parent. Enough with the mommy guilt. I know that you've done the best you can all the way through this; it's not like you're actively and intentionally neglecting him.