Saturday, October 20, 2012


I have so much going on in my mind right now.  I have to write it down and see if any of it makes sense.  I haven't been on my blog in weeks.  I haven't sewn in months.  My life has taken a huge turn and I am still trying to understand where it is going.

I am now taking my baby Jacob to therapy 3 times a day.  It started about 4 months ago because he wasn't saying more than 3 words and only one of those words was said correctly.  Turns out he was basically deaf.  That was a scary thing in itself to hear for me.  The doctors said tubes would help because they were so backed up with fluid the ear drum couldn't move.  I am now wondering how long this had been going on.  He never had ear infections.  The only signs of him not hearing was that he never listened when we called for him unless we yelled.  He would put his ear on the noisy toys and lay on them that way.  When I would talk to him to try to get him to say things he would just poke at my mouth and tongue and never try to imitate my sounds.  Little things like this are just swimming through my mind right now.  Why hadn't I realized this sooner.

3 weeks ago he had the tubes put in and that same day he stared repeating words!  He is now really trying to talk.  Every day he says a new word.  I will sing him songs now and he will sing a long with me!  It is amazing and often makes me want to cry because I am so happy he can finally hear!  I wish I could say that this was the end of our concern with him though.  Our next hurdle is now his eating.

Jacob has only been eating crackers and cheese since he turned one.  He seems to have a few things he will eat, sometimes a new one will be picked up at the sacrifice of something else.  He used to only eat nutri-grain bars and bananas.  Then he stopped eating those to only eat crackers, string cheese and fruit cups.  Now he eats prunes and not fruit cups or bananas.  When I say eating is a challenge I don't mean it is a little tantrum that in a few minutes will pass and he will become hungry enough that he will eat what we are eating.  I mean this is huge to him.  He will not eat anything else!  He will not look at it!  He will not TOUCH it!  He doesn't want it near him at all and it is like we are hurting him trying to get him to change.  I have anxieties over feeding him.

Our third therapy session is for eating now.  We are seeing an Eating Therapist.  I had no idea that there were Eating Therapists!  I was curious.  What can they do that I am not doing?

The first few days was just watching him eat.  He does have a muscular issue in his mouth.  He used to never pick his tongue up and that is why we thought he couldn't speak.  I am now wondering if his mouth muscles became weak because he couldn't hear to move his tongue and make normal sounds.  He always sounded like a bird...anyways, back to eating.  After trying to teach him to chew his food instead of just sucking on it and stuffing his mouth the therapist said to try bringing food from home so she could see him eat real food instead of crackers.

I brought in mac n cheese, a hot dog, green beans, a rice dish and a piece of chicken.  He saw it and screamed for 30-45 minutes.  He never ate anything that lunch.  Not even the crackers and fruit snacks we tried to get him to calm down with.  So for her to see his reaction was good because she could finally see what I go through all the time with him.  She said it wasn't good or normal how he behaves and after watching him thinks he may have a little SPD, a Sensory Processing Disorder.  She started recommending all of these other doctors to go see.  More doctors!  More tests!  More therapy!  This time Occupational Therapy!  All these new things for me to learn about and try to decide what is best for my son.  Does he really need all this to learn how to eat normally?  SPD?  Really?  What is that exactly?  I was so confused.

After a day of being in shock over his eating therapy I started to read up on SPD.  I haven't been able to really sleep in weeks and now it is getting worse.  I find my mind waking up to remember things I have said or felt about how Jacob has been developing. Things that I had always thought were interesting because my other 3 children went about it so differently.  He has this thing with his hands.  He doesn't like them to be dirty, he loves to use forks for everything when he eats.  He even used to use them on his crackers, which I thought was funny.  He used to just stare at his hands as a baby.  When he started crawling he was always watching his hands to see how they moved and it was like he was thinking about how it was going to work before actually trying it out.  Then he would look back at his legs and move them back and forth too to see how it was going to be for them.  And then after days of just doing that he took off.

He is now the most happy when he is running around and being very active.  I figured this was because he was a boy.  Our eating therapist said that we need to find things that calm him down before he eats so he can try to do something he is not comfortable doing.  So for the past few days I have let him run around outside for over an hour before bringing him in to eat.  Our eating both those days have been dramatically different!  He didn't fuss as long, and it was just fussing not a melt down.  He kept closing his eyes to see if the food would go away, but eventually he ate 1/4 of a pb&j.  He even ate a chicken nugget and 3 french fries at CFA!  That day I had him out for 3 hours at a farm, he took a nap and then we went to CFA to eat.  I was so worried about how it was going to go and so hopeful that the time outside would do the trick again.  And it did!  He has never eaten a chicken nugget before or french fries! Maybe he also built up a good appetite from being outside too.

So this is where I have become confused.  What do I do next?  Do I get him tested at 22 months for a sensory disorder?  Do I add another therapy session to our week?  Do I get a swallowing x-ray done?

I think I have a lot to learn right now.  I am going to keep learning before I answer those questions.  I have seen so many sensory buckets and activities on other blogs.  I am going to give those a try.  I never understood why those were important, but now I am starting to.  I have so much going on in my head over this.  It is good to write it all down.

This blog is to follow my life and it has taken a huge change.  I am beginning to wonder when I will ever have time to sew again.

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