I've debated talking about this on my blog, but I view my blog as my therapy and so therefore I am going to blog about it. I in no way mean to offend anyone but the reality is, this is how I feel right now (perhaps some of this may be hormonal) regardless my feelings are true:
I have a sad heart because I feel like my little Nathan is so far behind. I know we aren't suppose to compare, I know each kid is wired differently, I know each kid will do it in his own time BUT that doesn't mean it doesn't hurt and that this journey isn't a hard mountain to climb.
I've seen my RTS mom friends go through a lot, I've seen them go through pain and frustration but I've also seen so much progress with their kids. Many eat by mouth now, many sign, some talk, some play with toys (actually play with them) not chuck them across the room, read books, identify colours, numbers and do puzzles.
Nathan is 31/2 years old and NONE of that is happening here. He has made a few sounds and has said " Mum Mum" a total of five times in his entire life. I have not heard him say it in months and no new sounds are developing. Only 1/3 of RTS sweeties are programmed to talk and realistically I don't believe Nathan is one of them. Okay fine- so he can learn sign or use PECS or communication devices- How do you even begin with all that?? Hasn't happened yet!
I've been working on signs with him for well over a year and he has yet to sign back. I just don't see how any communication is gonna work. If I ask him something, he doesn't engage in the conversation, not even with eye contact. He's not interested in reading books with me - he just pushes them aside. I know that he doesn't know his colours, he doesn't know the alphabet, he doesn't know numbers etc.... Then theres eating...
We have had NO progress in the eating department. A good friend, once told me, "Christine- there are no known RTS adults with feeding tubes- Nathan will eat- he will." I want to believe that but as each day passes it gets harder and harder to believe that. I think Nathan will be the first EVER RTS adult to be fully 100% tube -fed. I feel like giving up!! ( I know your all thinking Don't, be persistent, he will ) Well at what point is worth stressing him and me over eating??? Food is not anything he cares about. Food ALWAYS ENDS UP ON THE FLOOR. he doesn't even want to touch it. He will lick every surface on earth EXCEPT food. So again... tell me what the hell am I suppose to do?
I'm frustrated and jealous of the progress of all these other wonderful RTS kids, I just want one of them to be Nathan- Today I feel absolutely alone within my RTS family- I feel like we don't fit in. I'd like to say that I am a stronger person and a better person but TODAY I am jealous of you. I am jealous of your childs progress. TODAY- I HATE RTS with a PASSION- I just wish it would go away!!!!!!