I need a little vent today. I will eventually get to the posts about family life with pictures and fun stuff, but not today. Today I need to talk about Micah. And this is long winded and more than a little boring, so consider yourself warned.
OK. So, Micah is my challenge. We have established this, yes? He is as extremely happy and charming and hilarious as he is angry and sad and frustrating. He is just extreme. But his emotions come and go quickly, and I'm used to the moods. NBD. But he is also my challenge in that he has been delayed in every area developmentally. I had an inkling something might be wrong around the time of his first birthday, but decided to wait it out and see. By the time he started walking at 20 months, I knew something was wrong and started pushing to get him evaluated. I was told to wait and see, and then wait and see some more. He still wasn't talking by 2, so at that time I was finally able to get an assessment. I was told that he had speech and motor delays, and we were approved to get speech therapy started. We started speech therapy in September. I was so hopeful that we would finally start to see improvements. After a some initial improvements in his non-verbal communication (eye contact, etc), I feel like we have completely stalled. It got to the point where I would leave every therapy session overwhelmed with anxiety and crying the whole 30 minute drive home. It is so hard to feel like I am working so hard on something (getting Micah to talk and meet his speech goals), and no matter what I do, NOTHING HAPPENS. He meets none of his goals, in fact his goals are often revised to be less ambitious, and then he doesn't meet those goals either. Let me put it this way: when he was first evaluated he was given a developmental age of 12-15 months (he was 25 months at the time, so a 50% delay). At his 6 month review (when he was 31 months), he was given a developmental age of 12-15 months. The same as he was 6 months prior. He has gone from a "moderate delay" to a "significant delay." We started doing more speech therapy and still nothing. Its so hard to go to class and see kids who are just starting the program, barely two years old and making these huge leaps in their abilities. I feel like every time I go to his class I leave with more bad news and feeling more discouraged than ever. I have been having terrible anxiety, especially on the days he has class. And just to be clear, the speech therapist is wonderful and sensitive and kind and capable and none of this is about her. I really think she is a good fit for Micah and me. She has been really helpful.
After about a month or two in her program, she started expressing concerns about his physical development. But because everything is hard to get approved and get moving, it was only today that he finally had his physical therapy evaluation. His initial evaluation showed that he had delays in this area as well, but I was pushing so hard to get the speech therapy approved, I didn't push for PT services as much as I should have (nothing gets approved unless you fight hard for it). Anyway, his physical development (large motor skills) is at 16 months. Also, 50% delay. She said this qualifies him for PT services, and I was so excited. And then I felt bad because I was excited that my kid is so badly off that he needs this therapy. I mean, obviously I don't want him to be delayed, but he IS, so I was just happy that he is approved for services. Both the PT and the SLP (speech) have also recommended occupational therapy (small motor skills), but I don't want to overwhelm Micah.
The services are currently being paid for by the state, but the services are only available to kids under three. Once he turns three, the case is turned over to the school district. It is notoriously difficult to get services through the district. There is no money and programs are getting cut all over the place because of the continuous budget cuts. His social worker (manages his case, coordinates services and evaluations), his speech therapist and the physical therapist have all given me reason to believe that he will continue to qualify for for services through the district once he turns three. Again, I shouldn't be happy about this, but I am.
The one bright spot is that everyone he has met with has been very quick to tell me that he does not have autism. Which really does put my mind at ease. Micah is extremely affectionate and loving, so that is why autism has been ruled out. There is no diagnosis for what is going on, other than that he is delayed. We have more extensive evaluations coming up in May, and I am hoping to get some more answers as to what is going on and what I can expect in terms of future progress.
I'm just so frustrated right now because I feel like none of the work and effort that we are all putting in is doing any good whatsoever. The pediatric developmental specialist (M.D.) that did his initial evaluation told me that we would likely start to see big improvements after 3-4 months of treatment. It has been 7 months and we have seen hardly any improvement. I am starting to get really discouraged and feeling like this is all a huge waste of time. Jake pointed out that at least I know I have done everything I can, which the logical part of me knows is true. This does give me some peace of mind. But its so hard not blame myself and torture myself and ask over and over and over "what am I doing wrong??? What am I NOT doing???" Its hard not to take responsibility for Micah's behavior. But I'm his mother for crying out loud. Its what I do. I just can't shake the feeling that this is all my fault and that there was something, somewhere that I did or didn't do that screwed him up. I feel like a terrible mom. I have to tell myself constantly that this isn't the case, and maybe if I say it enough I will start to believe it.
And yes, I KNOW that things could be far worse. That I really have it easy compared to other kids and other families. There are an infinite number of things that could be going on in my life or going on with my kids that are so much more serious and scary and difficult. I know that, and I am truly, truly grateful that things aren't worse. I know they could be. But this is my life and my kids and I want them to be happy and well and complete and whole, and its hard for me that they aren't. So I don't need to be reminded that "it could be worse." I know that. I know I am being overdramatic and blowing things out of proportion, but when it comes to my kids, thats kind of the direction I always take. I'm working on it.
There really is no point of this post except for me to whine and complain and maybe someone reading this has some wonderful experience where you/your sister/your friend/anyone you know was in a similar situation and everything ended up perfect and wonderful and the child was totally caught up to his/her peers after a few years? Anyone? Anyone? I really do appreciate when people tell me stories with good endings. And maybe that would help me remember that I am not an awful mom and doing everything wrong and that all my efforts are not in vain. Because most of the time I'm not so sure.
Tuesday, March 6, 2012
Subscribe to:
Posts (Atom)