Roller Coaster

We been going through a roller coaster (little one) for the last couple of weeks. I was so excited when Benji's pediatrician finally saw what we were talking about with Benji that I lost my mind. Okay, maybe not completely... but I did forget to follow up with the developmental pediatrician.

I found myself a week after the appointments, with no follow ups scheduled. So of course, I had to start emails and phone calls.

Benji goes to the Food Allergist on April 16th. It's in Franklin, but I figure if we can get answers it will be good. It would be great to know if he is outright allergic to things. We know the digestive problems with cows milk. We know the hyperactive reaction to anything with red 40. We avoid high fructose corn syrup due to his hypoglycemia, we also try to limit other sweeteners. I still have pages to fill out for that appointment. (I love paper work, at least I make copies after I feel things out now.)

Finally got the call back yesterday about developmental testing.. It won't be until June 16th. That has it's pluses and minuses.... I am suppose to have his teacher fill out a questionnaire on him close to the test date. We get out of school at the end of May... hopefully it will be good enough.

I believe Benji is about to hit a growth spurt, his moods are erratic and he is sleeping alot more than normal these last couple days. He just got off of antibiotics too... He had strep. Little guy always keeps us busy.

The Good, The Bad, The Stimmy!

So, Benji went to the Child Development Center at Vanderbilt Children's for his suppose to be yearly developmental pediatric visit. His last visit was 18 months ago when he was diagnosed with the Disorder of Childhood and was referred over to Vanderbilt Bill Wilkerson to be checked out for Sensory Integration Disorder which he was then diagnosed with.

So, Dr. Cooper was glad to see us and reviewed Benji's progress with me. Or.. I should say I shared Benji's progress.

• His Speech is almost completely caught up. He still has some articulation to work on and he needs to pronunciate better, but he is a talking machine once he gets going.
• His fine motor skills are nearly on par. It's more of a stubbornness problem than not being able to do something. (i.e. He knows how to hold a pencil/crayon but chooses not to do it right)
• Gross Motor is improving. He still needs to strengthen his core muscles and we still need to work on those ankles.
• He is off the blood pressure meds for his heart. It's will be a year in May!
• While he does have low sugar episodes, we catch them quickly and he recovers fine. Mostly happens when he has been playing all day outside and doesn't want to stop for anything.

Dr. Cooper appreciated my knowledge on what was going on. Which this is a soapbox of mine... Do parents just not pay attention to their kids? I mean really. Benji has some medical issues, so I do the research and I do what I can at home to help him. That's how we realized it was the cow's milk that was causing the colic when he was little. That's how we discovered the sensitivity to red 40. (OH MYwas it wonderful when we got rid of that! The hyper activity disappeared!)

Anyhow.. so Dr. Cooper thinks we should do pretty much the same testing we did last time and see what comes up. His non-official opinion is that Benji is either a quirky 4 year old or we are looking at Asperger Syndrome. This does not surprise me at all.

• Ridgidty ~ Must have schedules. If normal routine changes he gets very non-compliant with anything. It completely disrupts him. (eating, sleeping, pottying, mood, etc)
• OCD type ~ While this isn't as bad as it could be. Benji is very particular about how things are. If he puts something somewhere, it had better be there when he gets back. Things also have to be 'just so'. It's hard to explain... would you like to come over and see one day?
• Obsession ~ for over two years the only thing Benji wanted was Cars. You know Disney Cars? It is still an obsession and he has moved to include Hot Wheels, Wall E, and Transformers with it. They are all mechanical and he loves to "help" work on the car or just to help with tools in general. He is also now obsessed with video games (PS2)
• He is very sensory seeking. The deep pressure type. He loves getting in his sling swing all cozy and swinging. Also jumping on a trampoline. When he is seeking he will throw himself on the ground or against the wall and laugh.
• While exercises have helped he is very tactile defensive. He will play in finger paints now but he doesn't like it and the second he thinks he is done he wants his hands cleaned.
• Can't stand to be sticky, slimy, itchy, etc.

So... that was the visit with Dr. Cooper. We are waiting for the call to get the testing done.

TEIS

TEIS came out this morning. We are going to be doing the referrals for Benji. One for Speech language and comprehension. He's not talking but we are finding ways that he does communicate. The other referral is to Vanderbilt's CCD (Center for Child Development) They are going to do a full psych evaluation on him and then we will go from there. They are much more extensive than the school system and after it's done they will be able to determine if more is needed.

I am really hoping that all of this is just in our heads and he's really fine. It bothers me. I imagine pretty much every mom feels that way when autism or PDD is brought up in concerns of their child. Especially when he was developing right on target up until a few months ago.

You ask what is it that makes us think there is a problem?
1) his words went for 15-20 at 16 months to now 3-5 (he's 26.5 months)
2) When I tell him no he starts hitting himself in the head and crying
3) There is low muscle tone in his legs. (He wears DAFO #5 for his feet supports)
4) He gets frustrated easily if we don't understand what he wants
5) He understands us 80% of the time but when he don't we tend to have a melt down.
6) He used to love going to Walmart and such, now it's like he is getting the sensory overload. Most trips to the store will result in a meltdown.
7) He don't like change. Things have to be a certain way
8) with his stacking pegs he puts them in color order. (red orange yellow green blue.)
9) He is fixated on yellow toys
10) Has to get dressed a specific way
11) Will only play with Micah. If there is anybody else around he secludes himself. Does not play with others in Sunday School.
12) Can't stand for anybody to hold his hands.
13) He licks everything.
14) EXTEREMELY high pain tolerance

Anyhow... there are concerns there. Giving the benefit of the doubt... He is a heart baby. His feet went purple twice prior to surgery. Plus there was increased blood pressure to the brain prior to surgery. (compared to his left arm and legs) From the get go he has had low muscle tone in his legs. When he walks even with the supports, his feet are floppy. He has always fisted his right hand and sucked his left thumb. He has in the last few months required to be holding his silky 75% of the time. (It started out being a nightgown and I bought a yard of satin and cut it up for him.) Something with the texture he just has to have it.

His lack of speech is the least of the concern to me because I know him being the youngest of 6, the others try to talk for him. WE stopped that but, I am not too worried about it. I do know we have to get on it ASAP though because once he turns 3, TEIS drops him and it's up to our insurance. (Which he is on TennCare but our primary is Cigna. The combo effect you would think we never had to pay for anything. HA!)

Anyhow... that's what's going on there.

I need to get off here and fix lunch. It sounds like two little boys need a nap. They both woke up on the wrong side of the bed.