Finding the Trigger and Fixing the Problem

Angry over stimulated Benji

The last two or so weeks have been quite trying for Benji. (By the way, this is Benji's mom posting today)

Second grade is a big adjustment for him. There is a lot of homework that involves a lot of writing. He probably has the strictest teacher he has ever had. (I think this is a good thing.) He only has a couple friends in his class from previous years, so he is having to make new friends. (This is hard on Benji, but better he learn how in second grade then as an adult.)

All of these changes has had an affect on Benji that we expected. We have learned that there is always an adjustment period. However, this go around things were not proceeding normally. Benji was getting very emotional. He was constantly on the go and could not focus. If he got upset, it turned to an aggressive anger very quickly. This was very unlike our sweet, loving, compassionate Benji. After one episode of him getting angry, we got him calmed down and he told us his heart was hurting. This told me that we had to find out what was going on.

Poison for Benji

I started asking questions. I would ask about his day and get basic answers that really did not get me anywhere. That is, until Monday. After I went over his homework with him and we had our chit chat I noticed that he was hiding his jacket. I asked what he had. There, in his jacket, was a roll of sweet tarts. Nice bright colored candy with bright pink/red, blue, purple and orange pieces. If I had the ingredient list I already know what is used for the coloring. Red 40, Yellow 5/6 ... In fact, doing a quick search.

These candies are poison to my child. He is sensitive to MSG (which is cleverly mislabeled ALL the time as maltodextrin), allergic to RED 40, sensitive to Yellow 5/6. In addition, he is only supposed to have natural sugars and this has corn syrup solids. (http://www.foodfacts.com/NutritionFacts/Hard/Wonka-Sweettarts-145-oz/10320)

Now, the part that upsets me is that Benji has an IEP and the last copy I have (I say that because I am a cynic) says that he is only to eat the food we provide. Also, as a parent of a special needs child (Benji's dietary needs and medical needs) I write an introduction letter EVERY year for his new teacher. This year I gave that letter to his teacher at open house and covered the bases with her. This still happened.

Benji was getting these "rewards" daily for good behavior. He would get the candy at the end of the day and eat it without me knowing he ever got them. (He knows he shouldn't have them but it is like he craves them. Kind of like a drug addict that knows it is bad for them but can't help it.)

The good thing is I have gotten in contact with the teacher and explained the situation more thoroughly and stressed the importance. Benji now has his own treat bucket with "Benji safe" rewards. Which this works better than his plan once we explained to him the situation. Tuesday he got in the truck and told me, "Momma! I got a card pulled today, so I couldn't get any candy!"

The importance here is making sure to have communication with the teacher and the principal. The key is, when the communication fails (because it will), to not attack like a momma bear but to confidently advocate for your child in a manner that is not brash. You have to know what your child's rights are, know what is in the IEP, know what you have informed the school and the teacher of. You also have to be prepared to take the next step.

Our family is hopeful that this is the only "problem" Benji has this school year. We are understanding in regard to it being the beginning of the school year and chaotic, but it does not excuse it.

I pray that through our experience, somebody else is helped.

Latest IEP and a Gameplan

It's a belated update because I have been putting off updating about how Benji's IEP went. It's just hard to express what happened without getting emotional. So, please, bear with me.

Benji was up for his triennial review where testing is done and the special education department is supposed to take everything in context. According to Benji's kindergarten teacher, he has mastered all but maybe one of the skills that have been introduced. He had one of the highest scores on one of the tests in the entire kindergarten. All things to praise God for! When we consider how much Benji could do three years ago versus what he can do now, there is no doubt that God has been there.

The special education department did IQ testing also and it showed he is "superior". Yet, with classroom observations both the school psychologist and the school special education teacher noted problem areas with "business" and "lack of focus" also instances where he would "fall" or "bump" into others. The classroom teacher claims that Benji is a well adjusted, compliant child with no noticeable issues.

Because of what they looked at, Benji is de-certified on the developmental delay. He still receives speech therapy, but will probably only have it for another year.

This is where we get to my concerns...
1) Benji has Sensory Processing Disorder, his is also at risk for ADHD combined. One of the doctors that tested him said she wouldn't be surprised if we find he has Asperger's Syndrome in a couple years. (This was in 2009, which happens to be the report that the school lost)
2) Benji had 2 1/2 years of a special needs preschool that focused on preparing him for Kindergarten. What is going to happen next year when he is in first grade and there are no "precautions" in place if he starts having problems?
3) Why won't the school listen to the doctors? We were told point blank with one of the other kids that if the doctor said it they would do it.

Needless to say I am concerned. I am trying not to worry and to continue putting my faith in God. I will re-iterate, I TRUST God and I accept Benji's healing, my concerns are based on intuition of the entire situation and how we have been treated by the school system.  We have a game plan, and we will follow through it. I suggest anybody with a special needs child formulate their own.

- bring up concerns to the pediatrician and request referrals to have testing re-done to verify what the school's testing has said.
- maintain home therapy and diet
- get into the developmental pediatrician
- get into the child pyschologist
- get in with nutritionist
- check in with pediatric endocrinology
- check in with occupational therapist for an evaluation
- check in with physical therapist for evaluation and recommendation on orthodics

I think that is all. Summer will be busy with those visits... but a much required effort for Benji's best interest.

So, that meeting...

We had the meeting about the OT services. I suppose a catch up is in order.

We were notified 2 weeks ago that an evaluation had been done and that the school district wanted a meeting to discuss the findings. We had to reschedule due to conflicts but got it settled. Then on the 11th, we requested a copy of the evaluation so I could be familiar with it before the meeting. After a bit of communication I got my hands on it the 16th. As we had expected the school system's OT does not feel that Benji needs services at this time.

In the meeting we were told that he shows NO signs of sensory integration disorder and that his fine motor skills in regard to his hands are fine and at peer level. Repeatedly Benji's ability was compared to class peer level. We are VERY disappointed that the school, teacher, therapist, etc... sees no problem with the regression that we see in both handwriting ability and his sensory related behaviors.

As Benji's parent and advocate it infuriates me about the double talk that took place in the meeting. We questioned about how Benji will throw himself on the floor and his teacher said, "We do not do that in kindergarten. That is left behind in preschool." (first off... he didn't do it in preschool, he's only started it since kindergarten started) About five minutes later this same teacher openly admitted that there are some children in the classroom that "hide" under the table. After a little more discussion she again admitted that Benji will "flop on the floor by his chair" while doing desk work. (but that isn't sensory)

We also do not understand how an OT evaluation can be done with only 15 minutes in the classroom and 20 minutes in the OT room. The OT person stated herself in past conversation that children with sensory issues don't always act the same continuously. Double Standard? I think so.

Other things discussed in the meeting was how absolutely wonderful Benji is doing in kindergarten. He has all of his first nine week skills mastered and is doing wonderful for the second nine weeks. (His preschool teachers did an AMAZING job at preparing him for school.)

As a side note... We know Benji is exceeding expectations considering he has Global Developmental Delay, Speech Apraxia, Sensory Integration Disorder, plus his medical issues including his CHD, hypoglycemia, food allergies and intolerances, and the hypotonia. For the most past he is on the appropriate level for a 5 1/2 year old. As his parents we see that there are areas he has regressed in and want him to get help.

Gross Motor Excellence

Mom took me into physical therapy this morning for my yearly evaluation. I had a hard time concentrating. Mom thinks with all the back to school stuff and routine changing that I am over-stimulated. My pt agrees and is concerned.

The awesome news is that for 5 1/2 - 6 year old skills I have them pretty good. I need to work on throwing accurately and catching but I meet standards! WooHoo!

The down side... I am VERY moody, I am getting fixated on things instead of paying attention, I am sensory seeking (i.e. sucking thumb ALL the time, twirling hair ALL the time, rolling on the floor) and I am upset I don't have a schedule yet.

School starts for me full time Tuesday. Mom is concerned about my food allergies and how I will handle being in school. I really want to be in school. I tested with Ms. A and I really like her and her classroom. We just don't know if she will be my teacher or not. It's really hard not knowing.

Mom did find out this afternoon that there will be a transition meeting for my needs Friday morning. We are praying everything works out well. While my sensory stuff can get quite distracting, with the right help I can thrive in a regular educational environment.

IEP and such

Benji's IEP went well... OT discharged him, which didn't surprise me since his fine motor skills are on par. PT kept him because of his core strength and that his sensory seeking behaviors can be a problem. He likes to throw himself down for the deep pressure. This is not new, they are just seeing it more than they used to.

Right now we are on spring break and unfortunately the change in schedule has messed the little guy up. His potty training has slid some. He don't want to use the potty for his BMs, so I put him in pull ups, which causes him to not care if he urinates in his pants. So sensory stuff is fun!

Benji's birthday was March 2nd and he had his party the night before. He was so thrilled with all of his 'CARS' toys it wasn't funny. Made me glad we hit the dollar aisle at Target. Plus I got the walking talking Lightning McQueen for $15 on clearance at Walmart right after Christmas!

Other than that we are just taking things one day at a time.

Getting Behind

I am so sorry I haven't updated in a while. It's been crazy.

For the first time since Benji was born we had to go to the doctor for a sick visit that put him on meds. It was a sinus/ear infection so nothing major. Thank God. The same day big brother was diagnosed with Strep and Scarlatina. This is dangerous for Benji because Strep can go into Rheumatic Fever and affect the heart. (Benji has a bicuspid aortic valve with stenosis already)

So we had that to contend with and lots of other family stuff going on.

Today Benji has his yearly IEP at school (he attends preschool for special needs kids so he gets his socialization and therapy 3 hours a day, 3 days a week.

I am praying that it goes well. I never got the notes and recommendations from the OT he was going too and I don't have anything in writing from the PT that he is still going to. *sigh*

I'll post later to let you know what all goes on. I know that after his birthday he goes up to 4 days a week. (The days are based on age. 3yos go 3 days a week, 4yos go 4 days a week.)

~ Faith

Growing Up is So hard to do, especially for Mom

This last month has been crazy with me sick and Benji having lots of stuff going on.

I think I am going to just go with a gist of it post. If I can.

Benji has given me a few surprises here and there, or as I call them glimmers of hope.

He went two days of staying dry during the day and using the potty. He however wouldn't have a BM and ended up a very unhappy camper. We believe it's a sensory issue. He will use the potty and even ask to on occasion. It was so funny towards the end of the week last week we had gone into Walmart and did some shopping. Once we were done Benji said something about potty and we just kinda shrugged it off. Then as we were leaving the store he demands "to go potty". Jeff and half the kids were ahead so I gave the truck keys to Brittany and sent her on with Micah and the "rest of the groceries" while I took Benji in to go potty. He went... boy did he. I was proud of him he did good.

As I shared two weeks ago Benji had a good time with finger paints. He hasn't done it since, insisting on using brushes and other things. LOL... I am looking for the goop recipe so he can play with some slime.

Let's see....

We had Benji's M-team meeting Friday (2/29/08) He qualifies for the special ed preschool. Which that did not come as a surprise at all. I will still need to get with Bill Wilkerson and get the feeding therapy set up with them. I don't enjoy driving into Nashville, but I will do it if it helps him. It will be once a week. Back to the meeting. Benji will go to preschool 3 half days a week, Tuesday, Wednesday and Thursday from 7.45 to 10.45. The down side is that unless Nana can pick him up I will miss MOPs. (It's on Thursdays from 9-12, but I haven't talked to her yet and I am sure we can work out something.) While he is in the preschool he will receive his therapies. He will get Occupational Therapy once a week to focus on his fine motor skills (pencil and scissor grasp) and sensory integration (textures, sensory overload, etc). He will get Physical Therapy once a week in addition to wearing his shoe inserts, this will be to work on his stability in walking and running, strengthening his coordination. Speech therapy will be twice a week and will focus on the formation of 3-4 word sentences, articulation, plus naming colors, objects, shapes, etc. So... little man is going to be working hard.

Saturday was Benji's birthday party. He was so happy, he didn't even mind that he didn't get the Cars cake he wanted. It was okay I think, it had a 4 wheeler on it, so to him it was a car... LOL... For his birthday Benji got a stuffed musical rabbit from Nana and a Cars shirt. Uncle Ron and Aunt Wanda gave him Money, as did Great Grandma and Aunt Jean. Gale got him the Go Fish, Snazzy CD. He loves to dance to it. And while it is catchy we have discovered that after listening to it 5-6 times we need to change CDs. He also got... The Cars racetrack, Cars balloon, party pack of playdoh, a Cars T-shirt, and a Little People Construction set. With his money he bought.... Cars kick ball, Cars Dinoco McQueen, Cars sunglasses, and a 3 ring pool that we are going to use as a ball pit. So... little man loaded up. LOL..

Tuesday Benji got to go up to the school and meet the School Nurse and his class. I met with the nurse and the principal to make sure we were all on the same page with the hypoglycemia and also his heart condition. They took pictures of Benji so his picture is on his medical file. That way they have a picture ID. (I think this is a WONDERFUL idea) And the nurse will get a plan of action. I am also going to take some juice boxes up there along with some snacks that will help him in the event his sugar were to drop.

After we were done with the nurse we went to visit the classroom. Benji got to meet his classmates and his teachers. He was a little anxious, but I really think that was just a matter of new place new people. He was looking around alot, very inquisitive. Hopefully a good sign. The class was very well behaved even with it being during centers and another child was visiting too.

I am very impressed with this school. It just blows me away. I wish the elementary school the other kids are going to would impress me like this.

It's all in God hands though. The Lord has provided for the kiddos and I am sure that He will continue to do so.

Spring Break is next week, so don't be surprised to see lots of pictures!