Thursday, October 24, 2013

Yesterdays Conversation

Yesterday was the beginning of a hard time for me. I met with Lj's Developmental Specialist. She and I talked about Lj's progress. To catch you up Lj has a diagnosis of Autism Spectrum Disorder, Mixed Developmental Delay, Receptive Expressive Language Disorder and Sensory Processing Disorder.  He also has been struggling with episodes of extreme tiredness which has led to blood tests that show elevated CPK levels in his blood. His current level is 368 and the cut off is 240. Doctors have not found out what is causing his issues. He sometime can't run, chew to even pull himself up on a chair or climb in the car.
     Now back to it. The specialist said to me, "Denise I am worried about you!" She said you are very stressed and very sick and you are showing signs of breaking down. In my mind I was saying I know, but my boys did not asks for this life and I have to make it despite what's wrong with me. My health issues now included: a slow growing Neoplasm/ now finding out a possible DNET. Also symptoms of what doctors thought I had Lupus but my blood work doesn't confirm. My body does but chemicals don't. I continue to work 12 hr shifts at night 6pm-6am and come home exhausted to get Lj off to preschool or many appointments. As well as raise Andre my 12yo 7th grader with ADHD, ODD and a Mood Disorder. I at times feel like I'm drowning but I won't die! The specialist asked, "why haven't you gotten any help?" I turned to her and said no one has responded to my requests. The government has said because you make $26 over the limit we will no longer help you with food and in 1 year time you will no longer have health insurance. I don't have friends here to lend a helping hand and I refuse to loose my home. So I get up repeat this cycle again and again to try to get ahead. She then turns to me and said you are killing yourself. There are days you get 1-2 hours of sleep and then you go to work or take you children to appointments sometime without eating But what about you. I said to her in my honest open opinion. Some people in this world are selfish. I have done just about everything I can to get help and have become somewhat bitter because I work and started back to school to try and further my education but had to quit yet once again because there is only one me. I said when asking for help I'm sometime insulted by a person or have comments from those who are fortunate to have money. I watched in a patient room the other night a well known man on tv say something along the lines of , "African American women who have children out of wedlock expect to live off the government. They put themselves in the situation and expect help". Not once did he think that maybe some of us have a baby in a relationship that they think is real love and will last.  I told my son specialist that yes I'm tired. Yes I wish I could own a home and not have to worry about rent and having someone kick us out. Yes I wish someone would help me but damn it ill die trying to take care of what I created. I will pray that someone has the heart to reach out and help. But until then I will continue to keep going. She said Lj has hit a plateau and doesn't know how to use what he has learned and apply it to life. I said I know his OT and Speech therapists said the same thing. So then I burst into tears. As the water poured out of my tired weary eyes, I couldn't answer her anymore. Lj walked over to me and watched his mother cry into her hands to try and hide it from him. He sat as I held back because I didn't want him to see me cry. I participated in the rest of his therapy session, as the specialist tested him. He had not made any progress except his aggression has gone down. I said I wasn't going to talk about this on here but this is how I vent and hope to inspire someone else going through it. At first I said I wouldn't because I've gotten rude, ignorant and just plain mean emails from people. I'm a person with feelings and this is my way of venting. Don't like it read something else. If anyone has ideas to help Lj flourish please let me know. Any ideas about how to help me with Andre I'm open. He has issue with executive functioning . I'm not going to give up. I'm going to try and let my faith override everything. Until next time blessings.


  1. You're such a strong woman to be going through all of this pretty alone. I take my hat off to you for continuing to work hard to make sure your boys have everything that they need. I think that in time LJ will show progress. Don't give up. I know that God is going send you guys a breakthrough.

    And don't let other people's negative comments stop you from venting or reaching out for help!! The Bible says we have not because we ask not. I am sure that there are plenty of people who will read your story if your continue to share it and will be more than happy to help out in anyway they can. I will continue to pray for you guys!

  2. You are strong wear that Superwomen S on your chest and wear it proudly. Have you asked the state for help like maybe getting money for the kids so you can stay at home or only have to work part time? Fight to see if you can get disability if you were in SC I would help you with that because I know the right people to get your case looked at and you would get some much needed help. Take a break for yourself before you won't be here for your kids you gotta take some time for you. Praying for you

  3. I bad preemie twins at 25 weeks and I wore myself down to nothing fighting for them... We have one survivor. We deal with lots of similar things to LJ. One thing I can say is not to lose hope. You are his mom and you will see development they don't and often times he may be working on something inside his brain- but that just has to wait to be seen. Aggression going down is a HUGE development- and brainpower was needed to accomplish that. There is NO SHAME in letting your boys know that this is a hard road. Emotions are real, they have a place, and they will go thru life appreciating that you have fought for them even when it was HARD. They will go thru continued trials in life - simply because life is hard- even with out medical concerns. What you are teaching them is to persevere. That is a priceless lesson. Beyond that- taking care of yourself is mandatory and there are simple things you can do without adding lots of stress. #1- are you taking a multivitamin that includes minerals? These are essential to all brain functions and would be helpful for the kids, too. I use the cheap equate brand of Centrum silver (even though I am in my early 30's). It has boosted my energy and my immune system. Omega 3's are also essential. From there, I carry granola or protein bars with nuts iny bag All the time because getting meals is HARD. Even just a bag of home made trail mix. I am sending g prayers your way!