Update on JJ

I am not sure I am in the best frame of mind to be writing this post but I have a little time so here goes.

JJ met with the GI Specialist and he said that JJ was just fine. We met for a Feeding Study and the OT and Speech Pathologist said that as far as eating goes, JJ is just fine. They noted some sensory and OT issues. We met with the Neurologist. He was a very old man (I am guessing close to 80) and we very much appreciated his decades of experience and wisdom. He said that we could do an MRI but wondered what the point would be as it would not alter the treatment plan. We appreciated that he did not send JJ off for more testing where he would have to be put under anesthesia without a solid good reason. We felt like he heard us. He asked good questions. He was good with JJ. He said that JJ did have Apraxia - but that the diagnosis doesn't really give us any real information that would drive treatment - other than to continue Speech Therapy as that seems to be helping him. He actually had some things to say that were difficult to hear regarding prognosis. He diagnosed him with Rumination Syndrome, which I had never heard of, and we have been given the name of 2 Psychologists who specialize with that disorder.

After doing some research on Rumination Syndrome, we are using the techniques that we have learned and JJ is not vomiting into his mouth as much as he was. We can pursue the specialists if we can't get it under control ourselves now that we know what it is.

Neurologically I am very sad with the conclusions the specialist drew, and quite frankly am angry. I know JJ doesn't present that he talks much or engages, but once he feels safe he talks non-stop, is actually understandable most of the time now, and has so much personality and character that he is a joy to have around. One of the comments the neurologist said was that we may have to medicate him for his behavior within 5 years if he continues with the emotional dysregulation. After having the Middles gone at camp for a week and JJ having only 1 outburst it is clear that there is more to it than him just being out of control. Life in this house is enough to make ME emotionally dysregulated a good chunk of time lol!

Then we just got word 2 days ago that the company where JJ does his Speech Therapy is going to stop doing outpatient work. My husband and I had been considering for awhile having him stop as what they are doing with him are tasks that we could be doing ourselves. So while we were upset we have come to realize that if we just do what they were doing, and be intentional about it daily, then we can probably make better progress. We got lazy and left it to the Speech Path and she never gave us take home work, so we will just do it at home and later have him reassessed and see what he needs to work on next. JJ has made HUGE strides in the 18 months he has been in speech therapy. Most of them related to him feeling confident enough to express his needs if he has to, and feeling more comfortable with strangers. The articulation issues are what they are working on now, and word retrieval, but we can be doing that at home after watching how they have done it for the past 12 months since JJ actually got comfortable enough to talk during speech therapy;)

JJ has also been making big strides in making friends and being social. He stayed with a sitter last Thursday by himself and did great! He chose the sitter, the activities, and asked if they could stay at our house where he felt safe - but he did it! He also attended 3 days of VBS even though it required him to wake 2-3 hours earlier than usual (we did let him keep sleeping on Wed. I got him up and dressed but he was a limp noodle and just kept sleeping so we let him). Getting up early has not resulted in him going to sleep any earlier than 11:30 (partly due to late baseball and softball games - but partly because he just can't fall asleep any earlier than that. The Neurologist told us to not even try). He is readily and appropriately playing with other kids at the pool and other social situations. He isn't talking much with them in a group and still looks to me to answer for him. When people talk to him he mostly grunts and just stares at them. I try to understand what that looks like to others because in situations where he feels safe he never shuts up and is extremely animated... But last week he had his first individual play date (without his older siblings around to "interpret" for him) and he did just fine. The boys played together very well with no difficulty with being understood and I was intentionally not jumping in to clarify what he was saying.

I guess my Momma's heart is hurting to get discouraging news, but it is also bringing out the Momma Bear in me. JJ is precious. He is perfect just the way he is. He is adorable. He is hilarious. He is smart. He has so much personality and can "read the room." He is tenacious. He is kind, gentle, sweet, and so loving. He is thoughtful. He never forgets any idea (struggles with word retrieval, but he will never forget a rule or concept - and insists that it be consist every time!  I can get away with NOTHING lol!). He asks so many questions and wants to know how everything works. Sure he won't stop asking until he gets satisfactory answers no matter how inconvenient the timing. Sure he talks in sentences that are often times with messed up word sequences so it is like talking to Yoda. But he is JJ. He is unique and I love him to death. I refuse to believe the prognosis that was painted for him. He is a survivor and has parents and a family who will do whatever it takes for him to succeed. He was created by God who has a perfect plan for him just the way he is, not in spite of the way he is.

So...it will be well and I am going to focus on my son JJ, not what he looks like on paper and defined as some category, but as a created child who is full of possibilities:)


Yes, it is not lost on me that I was initially afraid that no one would believe us and they would say he was "just fine" but then he was given descriptions/prognoses that have made me say, "No! Darn it! He will be just fine!"  Sheesh, I need to make up my mind;)