This or That

Keeping Ethan focused on a task can be difficult. His mind often wanders away when he’s doing something that’s hard for him. He’ll do just about anything to avoid challenging tasks, so we’ve had to find ways to get him back on track. Telling him what to do or asking him to do something that he doesn’t want to do just does not work. Aside from any of his learning differences, he’s a three year old. Three year olds are not exactly the easiest going creature.

What seems to work for him are choices. He’ll get two options and he has to choose one. During OT, if he resists doing something his OT will tell him he can either do it himself or she’ll help him, but he has to do it. When working on motor planning, she’ll ask him to walk like a bear, hop like a frog, do wheel barrow walking, etc. If she wants him to walk like a bear, but he doesn’t want to, she’ll give him the choice between walking like a bear or hopping like a frog. He usually chooses the bear walk (feet and hands on the floor and bum in the air).

It works for us at home, as well. Ethan won’t take showers. He says it’s too dark with the curtain drawn and he doesn’t like the way the water sprays from the shower head. If we ask him if he wants to take a shower he literally melts down. When it’s bath time and he’s refusing for one reason or another, all we have to say is “Bath or shower” and he’ll say “Take a baff” then head up to the bathroom without hesitating. It works for food and drink choices at meal and snack time and clothing choices when it’s time to get dressed. He often gets wound up (to the point of needing some help calming down) in the afternoon when his brother and sister get home from school. He gets to choose to calm down on his own, or to sit with me for some deep pressure squeezes. If that doesn’t work, then he can choose time out in his room or sitting on the steps.

Ethan is also a very visual child. He likes using sign language (this website has become my close friend). He responds to visual cues better than he does verbal cues. We’ve started using more and more sign language with him and have started using picture cues for things like hand washing, using the potty, and doing different tasks during therapies. His OT used some pictures of scissors, glue, and crayons today during his session. She laid them out on the table to show him what they were going to do. She also had pictures of someone doing the signs for “quiet” and “listen” and when Ethan would get too loud or wasn’t listening, she’d point out the pictures and he’d get back on track. When he was done cutting, she had him put the picture of the scissors away in her bag, then the picture of the glue, etc. A little side note: he did FABULOUS with cutting today.

Using the two choices approach and the visual cues seem to be paying off. All of his therapists have been implementing these strategies with him and he’s been doing really well with everything the past couple of weeks. I’m really proud of him.

The Twenty Second Rule

Ethan’s SEIT did some testing with him recently and discovered that it takes him twenty seconds to process language. Not all of the time, but if it’s somewhat of a tricky question for him it takes him twenty seconds to respond. Try having someone ask you a question, then count to twenty before you answer. It’s a long time. A very long time.

It had always seemed that he just didn’t understand what we were asking of him. Until now. Ask him a question and wait… wait… and about twenty seconds later, you’ll get a response. In the past I would ask a question and wait a few seconds. When he wouldn’t reply, I would rephrase the question into language that seemed easier for him and he’d either answer or not. If not, I would just assume that he still didn’t understand the question or that he was just uninterested and we’d move on to something else.

Ethan and I went on a field trip with his class today to a miniature horse farm. He had so much fun feeding the horses and getting to ride in a cart pulled by two of the miniature horses. His laugh was so loud and from his belly when he was riding in the cart. Other parents and his teachers were laughing right along with him. Just infectious and so genuine. After the ride we sat in the barn and had a snack. He mostly ate grapes, but did have half a cracker and half of an Oreo. On the ride home I asked him what his favorite part of the horse farm was and started counting. At eighteen I got “Um, cracker and Oreo!”. He did process my question, but I was surprised at his answer. It really seemed to me that the cart ride was his favorite part, but what do I know?

I’m FOUR!!

Ethan’s preschool celebrates unbirthdays for kids with summer birthdays. Ethan doesn’t turn 4 until July, but he had his unbirthday at school yesterday. He got to bring in a special treat (he chose Oreo’s), they sang Happy Birthday and he got to wear a big number 4 necklace around his neck.

The whole thing is confusing enough for any kid, but a kid with a language processing delay? He totally thinks he’s 4 now and doesn’t understand when I tell him that was just for school because he won’t be in school for his birthday. I wonder if he’ll think he’s 5 in July…

Summer Services

We had a CPSE (Committee on Preschool Special Education) meeting with the school district today to discuss Ethan’s Individualized Education Plan (IEP). Ethan’s whole team of therapists were there with us. We discussed his current services and goals and came up with a plan for the summer and for next fall.

Right now he has PT, OT, and speech twice a week for 30 minutes each session and his special education teacher (SEIT) sees him twice a week for an hour each session. After discussing his progress and (in some areas) regression, we decided to continue PT, OT, and speech for the summer. He’ll have PT once a week for 45 minutes. OT and speech will be two 30 minute sessions a week. I’m happy with that. I was really worried that the district wouldn’t offer summer services for him and was pleasantly surprised at how quickly they agreed to it. I am sad that we’ll be missing his SEIT over the summer, though.

As of right now, I have Ethan registered to go back to his current (private) preschool in the fall. He goes T/Th from 9-11:30 now and next year, he will go M/W/F in the same time slot. There is a chance that he could go to public Universal Pre-K (UPK) in the fall. We applied for it, but have yet to receive an acceptance or denial letter. I love the school he is at now, but the UPK is at the same school that he’d be going to Kindergarten the following year. It’s going to be a tough decision if we do get the acceptance letter. At the CPSE meeting, we had to go with the assumption that he’ll be back at private school in the fall since we know that is a sure thing. His services for the fall are PT and speech two 45 minute sessions. One at home and one at school. He’ll have two 30 minute OT sessions at school in the fall. His SEIT will see him at school twice a week for an hour each time and once at home for an hour.

Overall, I’m happy with how the meeting went. It was nice to have his whole team all together discussing him and figuring out strategies to get him on track.

A Little History

Our third child was born in 2004. He was a big baby boy weighing in at 12 pounds, 8 ounces. Naturally with no pain medication. It hurt.

But anyway. Ethan was perfect and beautiful and we had no reason to think there was anything different about him. I can’t remember exactly when, but it was within the first several weeks that we started noticing little brown spots on him. They looked like little birth marks. Mostly on his belly and back. Not knowing what they were, I asked the doctor at one of his check ups. The doctor brushed it off and said “We’ll keep an eye on it.”. Time went on and Ethan was getting more and more spots and every time I brought it up to the doctor he said the same thing. This doctor had been my two older kids’ doctor for more than 5 years. I trusted him and figured that if he didn’t think there was anything to worry about, then I wasn’t going to worry. These were just little brown spots, after all. How harmful could they be?

Finally at Ethan’s one year check up, his doctor said the word “neurofibromatosis” to me. He also said the words “rule out”. We left the office with a phone number and referral for a pediatric neurologist. I really assumed that Ethan was just fine and that we would be ruling out NF.

Then I googled.

And read all kinds of information, saw photos, and cried my eyes out because from what I was reading, I could already tell that my son had this disorder. I was terrified.

Since then, Ethan has seen several doctors every year, had an MRI and is due for another early next year, and has had numerous blood tests. He has been amazing through all of it. At his last neurology appointment in January, we got the official diagnosis of NF-1. He had to meet two criteria before they would diagnose. Up until this year the only criteria that he met was the brown spots which are called cafe au lait spots (CALS). He now has freckling under his arms which lead to the diagnosis.

About half of all kids with NF have some sort of learning delay. Ethan has gross and fine motor and language delays. He also has Sensory Integration Dysfunction (SID). He sees a speech therapist, a physical therapist, an occupational therapist and has a special education teacher. We’re seeing some progress, but he has his setbacks sometimes, too.

In no way am I claiming to be an expert on any of this stuff. I am just a mom going through life with a child who has NF-1 and learning differences. What you’ll read here is what’s on my mind and in my heart.