My husband is seeing a multitude of Drs as well. He's had tendonitis in his wrist for nearly a year now. He hasn't been faithful with wearing his wrist brace, but it still bothers him so much so he was referred to a sports injury clinic, probably for PT. He also has a firm knot that showed up suddenly under his chin 2 weeks ago. At first we thought it was an ingrown hair or clogged hair follicle, but it isn't tender to the touch. So I thought (and still think) that it's a swollen lymph node, but his Dr doesn't think it is. In fact he said "I really don't know what that could be." and gave my husband a prescription for an antibiotic. Wow. I hope it's not anything bad and I hope the antibiotic helps, even though he has no symptoms of an infection...
Now Mr Jay man! He is a mess yall. My baby hardly speaks any English anymore! He uses his sign language and speaks Japanese! NO LIE! "Hi" and "Thank you" have been replaced with "Ni Hao" and "xiexie" (which sounds like shea shea). So every morning when I go into his room, he greets me with either "A morn" (good morning!) or "Ni hao!" and whenever I give him something he wants he says "xiexie!". Too much for me. I'm glad that he does at least understand what those words mean. It gives me hope that he will eventually learn to use his words soon. As of now, he's had yet another regression with speech. Well, not really a regression, just that he's fallen into more of a "mimic" stage, as opposed to independent speech. It's almost as if he has to be coached now to talk. He cannot answer yes or no questions, but he will repeat the last word you say in your question. So "would you like to eat?" is answered with "Eat!". "Would you like to play?" is answered with "Play" and "would you like some ice cream?" is answered with a very excited "OW CWEAM!!!" and the most enthusiastic signing I've ever seen for ice cream! LOL! Speaking of which, he's getting some today (100% fruit sorbet). So I do get him to say more words by adding new ones to the end of questions. Although, in reality, that is not considered "talking", but simply repeating. But hell, I'm not a speech therapist and I really want to enjoy my son and not spend every hour of the day being his therapist. It's tough.
Wednesday we meet with the developmental pediatrician. The first meeting is just for my husband and I. J will be home with my mom. I assume that she will be able to tell us what we are dealing with after that appt b/c we are the only two who see the worse of J's issues, 24/7, and I doubt that she will see anything but the language delay once she meets him. That is unless she plans to meet us in a very loud restaurant or in Walmart on the 1st or the 15th. Otherwise, I think the meeting with my husband and I is the most important and we can get some answers next week. I've prepared myself for the worse, but I know that my husband hasn't and if we are slapped with the "a" word next week, it will hurt him. But I am glad that I've already allowed myself to grieve the loss of that "perfect" child I dreamed of raising and I accept J for who he is and whatever it is he is fighting with and I am prepared to help him in anyway he can. By being prepared, I will be able to stay strong (as strong as possible) to hold my husband up and to fight for my baby for the care he needs. I'm hoping for a written diagnosis by next week. That may sound awful, sorta like I'm hoping that my child has autism, but trust me that's not the case. The problem is that J has an obvious problem that needs to be worked with, and unfortunately for him (and us), he is not a priority without a diagnosis. So a diagnosis will hopefully turn these tables around for us and make it a tad bit easier to get him help and into a preschool that can offer him the services that he needs to live as normal a life as possible as he grows up to be the man I'm raising him to become. Mainly, I want him back in Early Intervention ASAP. Like yesterday. As he gets older, I'm noticing more behaviors popping up...temper getting worse, repeating instead of speaking, and now a complete lack of expressive language. I can't help but think that some of these behaviors wouldn't have popped up if he was still getting the therapy, but there's really no way for me to be sure. What I do know is that if he was still in therapy, I would have his therapists here to see the new problems and to tell me and show me what I can do for him. Another thing is our trip to Disney is coming up soon, in August and I want him to have the best time possible, considering his sensory issues. Last year, Magic Kingdom was just too much for him. Last night I let him wear his weighted vest to a restaurant and it certainly offered a calming effect and he did extremely well. Even sat still the entire time while eating. So on my own, I believe I've learned that the added weight and compression helps to calm him in scary or overwhelming situations, sort of like how I calm him when I hug him real tight when he's scared and the weighted vest looks much better than the choke hold he usually needs to be put in to calm him down! LOL :) Kidding, sort of...he WANTS the pressure! So the weighted vest will accompany us to the parks, but there is no way that I expect him to wear 2lbs of weight and the vest over his clothes in 100 degree weather. No way. It will become a last resort. I'm hoping that we can get other pointers to make his trip more enjoyable. I do know that we can get a letter from the Dr explaining his condition and we could get him a special needs pass to skip the long lines, which would be a life saver b/c heat, crowds, loud noises, and waiting will set him off!
I guess as we notice his behavior getting worse, strangers in public notice as well. We no longer get the sympathetic look from other adults. You know the looks they give you when your child starts to scream and act up b/c he couldn't have a candy? The look that says "Awww, I've been there and I totally understand!"? Well, we don't get that look anymore. Instead, when Jayden starts screaming a very high pitched, shrill scream that will seriously wake the dead, and honestly makes EVERYONE look our way, or when he slams himself to the ground and then deliberately bangs his head, or when he throws everything off of a table in a restaurant while screaming, we get looks (scowls actually) that say "That child is out of control!" or perhaps maybe "She needs a parenting class." When they look at me and shake their heads and frown, I usually think it's the latter that they are thinking. It may not be true, but the scowls really do hurt and make us feel like we are just not welcome anywhere with him. In fact, last week after my cousin's funeral, we all met at my aunts house and we have a HUGE family. It was too much for J and he honestly SCREAMED the entire time. He wouldn't eat, he wouldn't play with the other kids, and he wouldn't just sit on my lap and be comforted. He screamed. The only time he wasn't screaming was when we let him play alone in my brother's truck (outside in the heat), away from all of the noise and the crowd. As we were getting ready to leave, one of my (step) cousins said to me "He is horrible. You have him rotten." WHAT?!?! I almost lost it on her. I was already not in the best mood b/c my cousin (her step brother!!) is gone, and then my son was just on edge the entire day. But I stayed cordial and I simply said "Look, you have no idea, trust me." and I left it at that. Through my experience I've learned that we should never pass judgement on anyone and their situation b/c you have no idea why a person is the way he/she is. I thank God for J. He was not only sent to fill my empty heart, but God sent him here to teach me (and hopefully many others) things that I need to learn while here on earth. Some of the lessons I've learned form him so far are that no one is perfect and that I cannot always strive to be perfect, patience, increased faith, and not to judge. I'm still learning from him each day and I love him for it. My pootie bear :)
3 comments:
I've been following your blog - I found the link on the bump. This post makes me want to reach out and give you hug. I have s son with some sensory issues and I know all about "the looks," and comments. I hope your son recieves the therapy he needs soon.
nia, it's so good to read your blog. i was on the msn ttc board with you and i'm on the activeboard too (ivygalore). your story is so very inspiring and i pray that j gets the services he need asap. i've worked with several parents managing a challenging child, but i could never feel the strain from it as i can when reading your story. i can imagine the hurt that comes from this through reading your blog and i thank you for sharing. over the years, i've learned that perfection is our acceptance of what/who we are. J is still your perfect baby boy!!
Gloria, I am so glad for your post. I've had this blog since long before we realized that something was not quite right with J. When things started to go wrong, I asked myself if it was something I wanted to share with strangers and quickly I decided yes, for a number of reasons. The main reason was b/c I could use this as a journal for myself. J's behaviors pop up out of no where. All of a sudden he has a new addiction, or a new strange behavior. By keeping this blog, I've been able to put togethere an outline for the appt with the developmental pediatrician. Had I relied solely on memory, I wouldn't have it all together. Secondly, I decided to blog about it so that other people can understand just how hard it is to have a child with special needs and that they should never take their typical child for granted, and also that they should not judge other parents b/c you just never know the situation. I want people to know anout the everyday struggles. About the stares. About the way our entire life has had to change to make things easier for J. Maybe it will help others be more sensitive to parents of special needs, or "spirited" kids. That's my hope!
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