Friday, September 5, 2014

Finally getting help

I am not even sure how to start except with...if you have a special needs child, you need to speak up for yourself!

Just a little background, for those that don't know it. 
 Our son was born just over 2 years ago. We were first time parents, and our baby had a lot of issues. We knew that he would never be "normal." We told everyone our financial worries and how we didn't know how we would make it if I had to quit my job. Well, for 2 months, while he was in the NICU, we asked everyone we knew if they could help us out and watch our child in our home. We didn't know how we would pay for it, but we would figure it out.

We searched high and low and couldn't find anyone and I was forced to quit my job. We put our lives in God's hands and hoped for the best. After awhile we did find a few people that were CNA's that could come for a few hours a day so I could do farm chores outside. 

When we first brought him home I got about 4 hours a sleep a day and seriously considered putting him up for adoption. I just couldn't take it. He was so needy. His issues were so big. He turned blue more times than I care to talk about. I didn't leave the house for 2 weeks; not even just out the door. I was literately loosing my mind. And we had no help

Fast forward 6 months.
Our son was in and out of the hospital every month for a lot of different reasons but mostly because he kept getting aspirated pneumonia. His lungs were so bad. He needed o2 all the time. He was on monitors. He had gotten a surgery to twist his stomach and put in a gtube during one of the hospital stays. He couldn't handle a lot of food going in at once so he was on continuous feed. Life was stressful enough with everything he had going on and to top it off we were barely making ends meet because of me not bringing in any income. But this was the life God gave us and we had hope. We were optimistic about the future (or insane) and somehow just knew that our struggles would end soon. We still had little help, and the help we did get, we could barely afford to pay. We put our fragile son in situations he probably should not have been in because we couldn't afford to pay any helpers.

1 year old!
Our son is still on o2 and monitors all the time. He had not had any hospital stays that were not planned. He could handle feedings better and faster so we didn't have to have him on continuous feeds. It was nice to get rid of that cord for a few hours a day. We still had no help and were struggling to make ends meet.

2 years old!
He is doing better and growing stronger. We are now focusing our attention on pushing our son to eat through his mouth, standing more, using his fingers more, and trying to get him to communicate what he wants. We have a second child, that is healthy. We are still struggling to make ends meet.

With all of the therapy that our son needs, and trying to care for the baby, life is still a struggle. There are days when I think I am still going to end up in the loony bin. I have a constant guilt that I feel. Like I am not doing enough. I think that he could be doing so much better if I just push myself, if I just let the baby cry for a bit, if I just followed what the doctors tell me to, if I spent every free moment working with him and trying to get him to do something.

So what happened?
I finally got someone to hear me. I broke down to a complete stranger. I had been telling everyone that asked what had been going on at home and how hard it was for us. How we were barely making ends meet because I was not working. How frustrated I was with no being able to fit in all of the therapy that our son needed. I told people about the guilt I had. Even with all of my worries complaints, and guilt; I would always put a positive spin on it. And I always smiled, even through the tears. Said it was all God's plan and that He was setting us up for something really big to happen in our lives. That may have misled people to think that it was going to be ok and that I/we were handling things. We were...kind of...not really. 

Then finally...finally...I broke down. I cried. To a complete stranger. She was going to be a new therapist that would come to our house, and give me one more thing to do with our son. One more thing that I would have to try and fit in. One more thing that I would get to feel guilty about if it didn't happen that day or he wasn't showing signs of progress. I wanted this therapy. I knew our son was ready. But on that day, I couldn't take it. I didn't know if I could try to do one more thing. She must have looked at me and thought I was a complete mess because she talked to some people, who talked with other people, and now (finally) we are getting help! We are getting skilled nursing care, up to 20 hours a day, 7 days a week! They come into our house and help with anything we need help with. They will come to doctor appointments. They will do therapy. They will come to the park to play. They will go on vacation with us and be an extra helper.

This is a good thing
I can finally get a break. If the youngest was up all night and is finally taking a nap during the day, I can go to our bedroom and take one too; without feeling guilty about not doing therapy. My house can be just a bit cleaner because I don't have to choose between cleaning or therapy. Maybe the hubby and I will go on a date and actually be able to enjoy ourselves because our son will have the care he needs. And the best is all covered through our sons insurance (Medicaid)!

What you should do 
 After talking with one of the nurses I found out why we didn't get help 2 years ago. The discharge Doctors in the NICU (and every Doc after that) sent him home on a scheduled O2 rate. If one of them would have put in the order that if some event happened (ex. turned blue after coughing) then the O2 should be turned up, we would have gotten help right away. Being sent home with something scheduled does not require a skilled nurse to make a decision about cares. There has to be a qualifying event that forces someone to make a decision about the care of the patient. (this reasoning makes me so mad, and may only pertain to the state of Wisconsin, but that is a subject for another day)  

If you have a special needs child and are feeling worn out, guilty, and like you just can't go on you need to tell everyone. I was telling all of our providers (16 of them) for 2 years about our struggles. I knew they heard me because they would respond. But they must not have known just how bad it was, because no one took action. They said our son wasn't sick enough for us to get help. It wasn't until I cried "uncle" to the right person. So keep talking. Keep telling your stories. Keep trying to get help. You shouldn't have to try to do it all. You shouldn't have to choose between therapy and a clean house. You deserve sleep. You deserve time to yourself to do what ever YOU want, and you shouldn't feel guilty about it. Just keep talking. And I will keep praying for all of you that don't have help, are feeling desperate, and want to just give up. If there is some way I can help you, whether it is a specific prayer, or trying to find you help, please contact me. I don't want anyone to fall through the cracks like we did. I want to help you in anyway that I can.  


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