Some background on Julian

I realize that some people who may now view this blog don't know some of what's been going on with Julian. To make things easier, I'll sum it up as quickly and as simply as I can. This is what we are aware of, prior to his March 11 appointment at EMMC.

For what has now been just over a year, I have been expressing my concern that something "wasn't right" with Julian. I couldn't put my finger on it, but he seemed slower, and the best way I could find to describe it to others was that something was missing. I communicated this with many people, all of whom told me that he was fine. Still, I had the niggling feeling that something was "wrong" and decided to press the issue. It got to the point where I really couldn't stand it any longer- I brought him in to the doctor and she agreed when he didn't respond to his name that something unusual was going on. Her team referred him to a developmental pediatrician in Bangor. But I, myself, hesitant to wait three months to do anything about it, additionally referred him to CDS (Child Development Services).

CDS responded quickly and thoroughly. So far, through CDS, Julian has been definitively diagnosed with a Sensory Integration Dysfunction. This is in the Autism spectrum as a sensory processing disorder. Additionally, he has apraxia, low muscle tone, oral issues, and his left brain function is extremely low.

What all of this basically means is the entire world is extremely overwhelming to Julian. To the point that he can't properly function, learn, process, interact, etc. The tag on the back of his shirt can make his life impossible. If his socks are twisted or the lights are too bright, he won't learn anything that day because all he can pay attention to is that. He can't look you in the eyes because it is too much for him- it causes too many thoughts, sensations, awareness of surroundings, sounds, etc for him. If someone holds him, it can feel like someone is rubbing sand paper on him. The dryer might sound like a jet engine on the runway, but the fire alarm might not even register because too much else is happening. He's not even aware of his own body and self- he doesn't know where in the room he is, because he isn't sure where he begins or ends. When we look straight ahead, we know what we will look like when we look down. We know what we are touching, what it will feel like, what we are close to, etc. He does not have that awareness of self. The entire world is basically "right in his face" even if it's outside or across the room because he isn't aware of his space in the world.

His sensory dysfunction is why he literally doesn't stop moving all day- the evaluator said that children with sensory processing disorders sometimes enjoy constant movement. Also, this ties in with his poor muscle tone. He can't hold himself up straight sitting and it either hurts, annoys or bothers him to sit. (When I say my child is literally into things all day long, I am not joking... at least now I know why, hopefully that makes it slightly less frustrating.)

He is having a hard time speaking because his mouth doesn't work properly. This goes all the way back to his issues with successfully breastfeeding. He didn't want to be held, nor did he stimulate enough milk production or take enough in. He could never be an effective nurser. (Finally the stress and guilt of that is removed from my plate- I could not have safely and healthily nursed my son past the seven months that I struggled through it.) When he had his first solid foods, he gagged a lot. At the time it just seemed funny, now I know thanks to the evaluator that this was an early sign of a major issue.

Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.

Apraxia, combined with the overwhelming conditions in his surroundings due to his Sensory Integration Dysfunction, cause him to be extremely irritable, distanced from loved ones, and a poor learner.

The left side of his brain is below the level of a six month old child. Your left side contains analytical, verbal, logical, computational, factual, grammatical, and literal retention. It is also responsible for your vocabulary. He also has the communication skills of a 12 month old. But, he has the desire to share information at level with other children his age. What is around him is overwhelming- what he is taking in, however, exceeds what he can share with you. He is basically trapped in his own mind, whatever he thinks or wants he cannot get. He is also having serious issues repeating words because he does not comprehend the amount of syllables in the word. This is, again, a left brain trait. It complicates his learning abilities.

We were given a lot of information and a lot of things to do with him. It turns out that by parenting him the way that is "right" and suggested by medical professionals, parents, etc. we were doing him more harm than good. For an example, when he is upset, he needs to have pressure on all of his joints by pushing or squeezing. The evaluator actually did this while she was here and he responded wonderfully to her, it was amazing. My son who screams at a hug was letting this stranger squeeze his body- it blew my mind. She was spot on with what he needed.

Julian is now in speech therapy. If you read the first blog I posted, the therapist now thinks his muscle tone is worse than suggested in previous CDS reports. This is something I will bring up on March 11 at his EMMC appointment. We may expect to see some better diagnoses after that day, and some worse. All will be taken into account. He qualifies for two additional therapies; occupational and physical. They will only do two at a time, and it is based on availability and what services he needs the most. I don't know what his next therapy will be.

He has come a long way, and we are very proud of him!!! If you have any questions, don't hesitate to ask. I am beyond the point of being sensitive about this issue, and now feel that it is my place to expand awareness!