So I made it through this post and have had good responses from it. Thank you for those of you that have spoke up about the post and how it helped you understand our little guy better or that you would pray for our Harrison. It is heartbreaking to for other to see your child as anything other than "perfect" when he is the apple of your eye, your whole world. I know in the big picture Harrison's issues are not HUGE, we know families that have so much more to overcome but without the aggressive treatment and therapy that Harrison needs he could never function like you and me in the world. With that said I am going to try to explain a bit more of Harrison's world.
Again, Harrison met all his milestone before on or time which is often a big warning call for some of the issues that Harrison has to deal with. With that said it took us longer to clue into all of his needs. After Harrison was in speech for about 7 months we talked about having him evaluationed by an occupational therapist because he was not moving is mouth AT ALL when he was trying to talk, (which goes along with the apraxia), would not stick his tongue out etc. and since he has never been a sleeper we thought that maybe just maybe he might qualify and if nothing else it would give him more time away from teacher Mommy.
I WAS SHOCKED when the OT came to do the evaluation. Every question he asked seemed like she had know Harrison his whole life. She asked things like
* Does he drink a lot (YES, 1/2 gallon of milk in less than two days and water, and juice on top of that and would drink more if we would let him),
* does he like to eat crunchy food (YES, and for several months he would only eat try crunchy food),
* Would he let you hold and rock him to sleep as an infant (NO NO NO, just recently has he started to like cuddling and would NOT go to sleep anywhere other than his bed by himself to recently also. As a baby would have to hold him away from our body and bounce to clam him, but he would not have anything to do with us holding him tight)
* Does he sleep well ( NO NO NO NO that is a whole other post)
* does he sort, line up, etc his toys food etc (YES, we used to joke that he was OCD, we won't joke anymore :) at 18 months he would sort cars trains anything by size and color. Each type of toy has to have its own)
* Does he like to have his hands dirty (NO) and does he freak out if he gets food on them ( YES)
all of these things are clues that there is a sensory processing issue going on, which I had NO CLUE about.
So by the time she left the first day I felt like the worlds worst mother. How could I have not seen the writing on the wall. And not only were these sensory issues a big deal, he also had decrease trunk strength, a rib cage that had not moved down correctly, he did not ever reach across his mid line. I know by the time she left I had to be white as a ghost. We had her come because he did not move his mouth and that was the least of her worries. So on top of the speech which we thought was the only issue in Harrison's world and at that time we thought it just a delay and no big deal to a whole realm of new trail and obstacles to overcome.
What is a Sensory processing issue?
very basically we all have sensory things that bother us, weather you have to have a fan on to sleep, or that you can't walk bear foot on sand, or you don't eat certain foods because of the texture. But for Harrison one of those things may set him over the edge, he may freak out, he won't be able to calm himself quickly and efficiently. So what's the big deal? It could become a issue that grows to the point that he can not be in large crowds ( that make him really nervous) to not being in loud places (that freak him out big time), to not knowing how to function with peers, all of which are need skills in our everyday lives. He is NOT AUTISTIC but has some of them sensory issues that are often found in autistic children.
What Harrison does
*in a new places he retreats, acts shy, but really he is terrified and can not self calm himself.
*in loud places he screams, will actually climb up my body to try to get away, I have almost dropped him doing this more than once.
* in loud places or that he feels are loud (he is always telling john to turn the radio down etc because it is too loud, when it is not that loud) he will hand on to me for dear life.
*when people come to the house he is so overly excited that he will run circles around the house for hours.
*When he has had too much stimulation he will NOT BE ABLE TO SLEEP
* When he has had too much stimulation he will retreat to his safely areas which have become his trains, and cars, lining them up, sorting them. He will also want to DRINK A LOT and eat crunchy snacks.
*he washes his hands contently (he likes to get dirty outside but not inside the house)
* he does NOT like new places and will become very nervous and scared he knows that he is not able to control the situation and that means he may not be able to control his self.
* these all sound pretty normal but it is the extent that they bother him that is the issues.
How Harrison Calms Himself
* plays with his train
*has a tag blanket and paci not that both stay in the bed but tag still has to come out during the day some.
amazing he says juice perfect and choo choo tracks perfect, those are what are most important to him and him making it through the day so it is very important that he can tell everyone what he needs when he needs them. Now juice means anything to drink, boo boo juice is his soy milk, dada milk is John's regular milk, Mama juice is apple juice etc.
What we do or have done to help him calm
*to Harrison schedule and structure are very very very important. If we get off, he is off for the whole day sometimes for more than one day.
* He does not handle surprises, we tell him repeatedly what to expect next, before bed we tell him everything that is going to happen the next day, in the morning we go over the list for the day and repeat through out the day. If something does not happen that he is expecting it will set him off, which can be a problem, but a surprise can get him off even more. So days that we say we are going do something and it rains, the whole day is off but if we went to that someplace if it were new and he did not know we were going, none of us would be able to enjoy the trip.
*we did a brushing protocol for several months when we used a surgical brush and brushed Harrison's back, arms and legs, and did deep joint compressions every two hours. we no longer do this and this is when his sleeping got much better
*we do a lot of deep pressure play, especially before bed, with heavy objects, wrapping Harrison in weighted blankets, roll weighed balls over him, climb on and through pillows.
* during the day deep pressure pats, and rubbing of limbs and back help calm him along with rhythmic movements and rocking. So if I am holding Harrison rocking, talking softly and rubbing him hard, I am not trying to baby him, I am try to help him calm himself so he can continue to function.
* during play groups etc, he will have to leave and we will sit quietly and do some of these things till he is calm and enough to join the others.
Again we are blessed beyond measure to be able to share in Harrison's life. God is a good God that gave us the most wonderful little Red Head Wonder in the world, but we also thank God for giving us the people and tools to help Harrison become all that He has planned for Harrison