Wednesday, June 10, 2009

Update on The Boy

With all this talk of the baby, I feel as though The Boy isn't getting the "air time" that he deserves.  So this post is all about updating you all on what is going on with him.

First of all we recently had a "weigh in" appointment with his gastro doctor.  It didn't go great but it wasn't horrible either.  Of course he hadn't gained any weight since she last saw him (about three or four months prior) and was still weighing in at around 27 pounds.  This is still under the 5th percentile on "the chart" and cause for concern.  She recommended that I meet (again) with the nutritionist and wants him to start back on the appetite stimulating medicine.  So that's what we are doing.  I put him back on the meds and have an appointment scheduled with the nutritionist.  

I have to say that I am not expecting anything new in that appointment.  There are only so many things they can tell me.  "Put butter on everything."  "Drown all foods in ranch dressing..."  "Eggs, cheese, fat-heavy meats..."  I have heard it all before.  I have tried it all before.  The Boy is only going to eat what he is going to eat.  And really the issue isn't that he won't eat a variety of foods.  The issue is the amount.  He takes three bites and deems himself full.  That's the problem.  So the trick is to make those three bites as FULL of calories as they can possibly be.  I do my best, I really do.  But the kid likes foods that are good for him and therefore not so full of calories.  He LOVES a bowl of salad.  A little iceberg lettuce with some dressing and he will go to town.  So he gets Caesar dressing, or full fat ranch.  He loves grapes and strawberries and apples and blueberries...but those aren't so full of fat.  He loves hummus and carrots and I try and "convince" him that it tastes better to eat his hummus with pretzels rather than carrots.  He loves chicken but GOD FORBID it be some sort of a "nugget."  It can't have any breading on it whatsoever.  Must just be the white part of the middle of a breast or he won't touch it.  I've tried getting him to eat the thigh meat which is a little fattier--no go.  He also likes fish, but only mahi mahi, or salmon, and again, must be just the plain fish.  No fish sticks here.  I could go on, but really, the kid does eat a lot of different foods.  He just doesn't eat enough of them.

He is still drinking Pediasure and there is some question as to whether that is making his appetite smaller during meals.  But he does not get pediasure at all during the day.  He gets it first thing when he wakes up in the morning and then again right before bed.  So in theory, this shouldn't be effecting his meals during the day.  And he needs that nourishment that is provided by the Pediasure.  He needs the vitamins and minerals that he gets from that.  So we limit him to two a day (one in the morning and one at night) and move forward.  The Boy LOVES his "milk" and would much prefer to drink that than to eat.  He asks for milk all day long and is instead offered a snack.  Sometimes it works, sometimes it doesn't.

Moving on...let's talk about the stuttering.  This has been a really tough thing for me to handle as a Mom.  Not only because it was (in theory) my late pregnancy and the birth of The Girl that "caused" it, but because it breaks my heart.  I haven't written much about it here because it is such raw emotion for me that I find it hard to express in words.  Hearing your child struggle to get out the simplest of sentences or requests is, in a word, horrible.  There are times when he will get stuck on a word for a good 15 seconds and will end up putting his eyes down at the floor and whispering, "I can't say it Mommy."  Cue the tears.  Of course as a parent you worry about other kids making fun of your child.  My poor little boy has bright red hair, pasty white skin, is about the size of a very small two year old, and now can't talk pretty.  If that isn't a recipe for kids to make fun of him, I don't know what is.  But so far this doesn't seem to be happening.  We have talked at length with his teacher at school and she is handling the situation great and she tells me that so far, none of the kids have said anything to him.  He hasn't mentioned anything either so hopefully that is all true.

The way we are supposed to handle it is to slow down the speed of our own speaking.  His speech therapists call it "turtle talk."  We talk slow like turtles.  When we talk like this, he will start to mimic our speech and talk slower himself.  We are never supposed to tell him to slow down, or to try again, or god forbid, jump in and finish what he is trying to say for him.  We keep eye contact with him and let him know we are listening and that we have all day long to hear him say what he needs to say if that's what it takes.  When it first started happening we were not to speak of it at all and simply slow our own speech down to try and help.  Since he has now acknowledged the problem on his own ("I can't say it Mommy") we can talk about it.  If he tells me he can't say something I say to him, "Let's try it again in turtle speech."  And so far, he can always get it out when he does that.  Or if he is getting stuck while speaking we can let him finish and then say, "You know what?  That word was kind of bumpy.  Let's try that again in turtle talk."  We are also doing about 3 periods of about half an hour each where we talk very slowly and read books or do some other mellow activity with him.  I should mention that it is damn hard as an adult to slow down your speech.  It seems unnatural and is really tough to do on a regular basis.

The hardest thing for me with the stuttering is just that my sweet little boy doesn't talk to me as much.  He used to chat about his day and tell funny stories and make up little songs.  He doesn't do that anymore.  He uses the bare minimum of words to get his point across and doesn't say much else.  He grunts and he makes unintelligible sounds and hums a lot now, but not so much with the words.  I miss hearing what is going on in his little mind.  I miss our conversations.  I breaks my heart.  I can only hope that all the things we are doing will help him get through this quickly.

With that said, I will say that things have turned around a little in the last week or so.  He seems to be doing much better and talking more.  Maybe we have turned the corner?  Not sure, but I will keep doing whatever I need to do to get him through this.  And he is still in speech therapy.  Although his therapy that is through his school district (the free one) has stopped for the summer (great timing, right?) so he is only in his private therapy once a week.  And remember back when I blogged about my fight with the insurance company to pay for his therapy?  Yeah, well I lost.  They will not cover ANY of his speech therapy.  And his private therapy costs $70 a week.  For one half an hour appointment.  It is killing me financially.  But I will continue to do it because he needs it.  He probably needs more than once a week right now, but I just can't make it happen financially.  Damn insurance company.

With everything that was said above I need to point out that emotionally this kid is fine.  He has no idea he is too small.  He doesn't even seem to be too bothered by his stuttering.  He is happy and funny and sweet and LOVES his new little sister.  He is the same perfect little boy that he has always been.  I don't want to give off the impression of a little boy who is bogged down with all of his difficulties because fortunately, he doesn't seem to be aware of them.  They weigh on MY mind as his mother, but part of my job is to not let him see that.  My job is to make sure he understands that he is the best kid out there and there is not a damn thing wrong with him and that he is perfect exactly the way that he is.  So far, he seems to be buying it.  He thinks he is hysterical and funny and perfect and sweet.  And you know what?  He's right.

1 comment:

Cathyo said...

It is hard to hear about what you are going through with your son who stutters. I too stutter and know a lot of other people who stutter so I understand your son's feelings. It is easy to see how much you care for your son but know that you are not alone. There are other parents you can talk to who can relate to what you are going through, offer advice and guidance and simply, support you as a parent of a child who stutters.

As a person who stutters, I find that emotional support is just as important as therapy for our stuttering (if not more important). To meet other people who stutter who can relate to our lives as people who stutter helps us accept our stuttering more than anything else. For 33 years The National Stuttering Association (NSA) has been doing just that. The NSA is the largest self-help non-profit organization for people who stutter in the country. They offer several programs which provides the opportunity for people who stutter to meet and interact with other people who stutter at local chapter meetings, workshops and annual conferences in which over 600 people who stutter (including kids and teens) attend each year! Conferences in recent years have included such keynote speakers as VP Joe Biden, Arthur Blank (Owner, Atlanta Falcons and founder of Home Depot), Bob Love (Chicago Bulls), Annie Glenn, John Melendez and John Stossel. They all shared truly amazing stories.

To learn more and to be put in contact with parents of children who stutter, pls contact them at:, or 1-800-937-8888.

There are several parents who stutter who also have children who stutter who can offer great insight on your situation.