It Changes Nothing....

In the months since I have posted our family has had countless appointments, made unforgettable memories, and we have seen, worked on, and met dozens of challenges. Jackson has challenged and enriched us the same way we challenge and enrich him every day. Just a few weeks ago my little baby turned two years; a milestone that was much more difficult for his mama to get through than she thought. The days and weeks leading up to his birthday were so fun but I was sad; turning two meant that he was really no longer a baby, at this point people expect him to be a little boy. People tell me he is a big boy and that he isn't a baby, that doesn't change the fact that he will always be my baby! He is my first and thus far only child and that makes him my little baby. He had a great time at his party even if he didn't open any gifts, eat any of the food we got including cake, or play with anyone there.
Jackson had his two year well visit on Monday, he is weighing in at a whopping 29lbs and around 38in. He is a nice healthy weight and is still staying well above average in the height department. His pediatrician was pleased with his progress but reminded us that he still has a long way to go in his development.

Jackson Alexander; there are so many things you can say about him. He is happy and smart, but there is another side to him as well. Jackson still engages in self-stimulation which is defined as repetitive body movements or repetitive movement of an object. He engages in this behavior for a pretty high percentage of his waking hours; we have been working with his occupational therapist and his early intervention teacher to reduce the amount of time he engages in this behavior but sometimes no matter what we do its something that Jackson needs to do and we have to accept that this is okay. These "stims" are caused by something affecting Jackson in a way in which he needs to find comfort or that he needs to respond to and self-stimulation provides him that comfort or response. Yes, is it hard to see my little baby running/crawling around in circles or spinning a toy for minutes or longer unable to help him feel better. Yes, I hate seeing him run around flapping his arms or moving objects or his hand across his visual field. It is the worst feeling when two year old would rather lay on the floor or couch and flap or shake his body than have me hold him or play with him; but that is our life. That is what Jackson needs sometimes. Self-Stimming is okay in our home when it needs to happen. Of course, we often try to draw Jackson back into our world, sometimes it works and sometimes it doesn't. It has gotten to the point where sometimes the removal of Jackson's stimming object will cause him to pace, wring his hands, and hyperventilate; so to the person in the store or anywhere that judges me for letting my child cope this way in the store YOU don't know what this is like.
Jackson still has a lot of trouble communicating with us despite the over 100 words he can say and understands how they are used. Of his 110+ words, Jackson uses 25ish in a functional manner to communicate his wants and needs to those around him. He has been working with a speech therapist to help him speak better so we can better care for his needs and hopefully reduce his stimming.
Jackson's genetic test results came back negative normal which means no extra or missing pieces of chromosomes were found, great right? It is except it means we still don't know why our baby was born with clubfeet, hypospadias, a partially bifid uvula, a sacral dimple, hypotonia, and behavioral differences. We are moving on to a more extensive test to help us find answers as well as getting an autism screening this summer.

There have been many friends and family who don't agree with our course of treatment for our son; but its Austin's and my personal decisions. We are aware that it changes "nothing". That phrase "changes nothing" is completely useless. Yes, it won't change who Jackson but it may help add to his identity. A diagnosis will give us a clearer path to what he will/may need in his future. A name will tell us if he needs to have any other specialists follow his case. Information will tell us if he needs to medication. Most of all it will tell two parents who have worked for 2 years to make their child the best that they did not fail, that they did not screw up, that there is nothing could do to stop or change what Jackson has and is going through. It will tell me as his mother that I am not crazy that he needs every service, doctors appointment, medication, and piece of equipment he has. It will give Jackson comfort in the years to come that his needs have a name and he will eventually be able to tell someone that. It will give his family a name when people comment on his behavior or his delays.

There are some things diagnosis won't change. It won't change the fierce love I feel for the little boy laying on my floor watching Moana. It will not change to joy I feel when he waddles up to me and screams that I am his mama. It will not change the fact that I love playing kitchen with him and talking to him on the phone even if I can't pick out one word from the conversation.  It won't change the fact that Jackson Alexander is one of the most special and loved children who could be going through this.