There is No Crying When Dealing with Special Needs

                                                                 (Not happy after brace)

The other day, I had a very sweet lady come up to me and say how much she enjoyed and learned from my blog about David. She went so far as to say that while she liked and read my other blogs, she truly looked forward to my David ones. That made me feel good that David has that kind of a following and that people care so much about him.

While life with a special needs kid is full of happy and rewarding moments, there are also those times that as a parent, I want to sit down and cry. Most of those times revolve around David being in pain, being sick or being frustrated. When I can't help him to avoid these situations, it truly breaks my heart. Last Friday was full of two out of three of those parent crushing events.

It is early September and it just so happens that a good many of Davids regular appointments fall right now. Friday we were lucky enough to cram several into one day. That right there is difficult for both of us, especially now that Z is working and going to school. I no longer have him along as my muscle to help me lift and transfer David and his wheelchair in and out of the van. No, we don't have a wheelchair van, so every appointment stop requires me to pull his wheel chair out of the back of the van, assemble the wheels, lift David from the car seat into the wheelchair and then when we come out.....we do it all over....in reverse. Now you have four or five appointments in a day and this momma's back is not happy and David is exhausted.

Friday our day started with blood work. David has to have his medicine levels checked periodically for his seizure meds. If they get too high or too low, then they have to be adjusted or he will start having seizures again. David used to be really good about getting blood work done because it was only an occasional thing, but after this past winter and spring where he was constantly in the ER or hospital, you come near him with a needle and he is going to react. Quite frankly, we have this down to a science. I hold his opposite arm and someone else holds the arm to be stuck and then the phlebotomist sticks him. This method works pretty well unless.....they miss the vein on the first try or it blows on them. That morning I gave him plenty to drink to avoid vein issues, but the fact is, after all the picking and prodding of this year, his veins are skiddish to say the least. His arms are nothing but needle mark scars and finding a good vein is not always easy. He held still the first stick, but when the vein blew, they went for his hand. I cringed because nothing hurts worse than a hand blood draw. As they stuck his hand, he turned pale and then began to show his disapproval of the whole ordeal. Knowing how he must be feeling, I could feel tears burn against the back of my eyes, but there is no crying when dealing with special needs, so I sucked it up and tried my best to distract him. The vein once again blew. Finally, a good one popped up in his arm and they went after it like a dog after meat. Unfortunately, David was pretty much over all of it and as a line of people was forming behind him for their own blood work, I held his arm tightly while managing to also hold his head so that he would not hit it backwards, while the other two held the other arm and drew the blood. Once he saw the blood flowing freely into the tubes (4 in all) he settled down. This wasn't his first rodeo and he knew this meant that the vein torture was soon to be over.

The minute the band aid was placed, David was back to his happy self, waving at those in line behind him and saying "bye" to his favorite nurse. He doesn't hold grudges as he forgets the pain the second it is over, but he knows when they are going to poke and prod him and he is not above putting up a fight in hopes of avoiding another stick. It makes me sad and it hurts me to see him hurt. I would do just about anything to keep him from having to go through that, but truthfully.....it is just part of the life he has, thankfully though.....it is a very small part.

While the rest of his appointments were much less invasive and there was no more sticking, David was not the most trusting child the rest of the day. I had to explain to him each time before a doctor walked in that no one was going to stick him. After our pep talks....he was fine. The other appointment though that did not exactly leave him with a smile, was the one where we went to get his new back brace. This brace is not what I expected and it kind of left me wishing that I had had them do it at Shriners, but I just couldn't afford two more trips back and forth in a 60 day period, so we got the script and had them make it here in Wichita. The brace looks like a plastic corset with velcro straps. Once he was put in it, it made it so that he has no choice but to keep his trunk straight, however.....he can still bend to the side, something we are trying to avoid.

It was obvious he hated his new brace and it was hard for him to hold himself up in it. After about two hours and another appointment, I could tell he was very uncomfortable. I felt horrible for him, while I was driving the half hour home. The brace maker told us that he should start out wearing it 2 hours of a morning and 2 hours of an afternoon and then each week gradually move up a half an hour. After seeing how uncomfortable he was in it Friday, I let him have the weekend off . Yesterday I put it on him and sent him to school. He sits so straight and after having the weekend free, he was holding his own pretty well in it. After the two hours though, not so much. By afternoon he was in fight mode when they tried to put it back on him, so he ended up going without it. I decided to call his new PT and ask her what she thought and she said....it's his core. He has no strength in it, therefore putting this brace on him at this time is not really helping. She suggested we start strong core exercises with him (balancing on an exercise ball) until he can sit on one and balance on his own for 15 minutes. At that point, then we put the brace back on and start at 30 minutes twice a day. It sounded good to me and if it helps to keep his discomfort down, then I am all for it, so wish us luck!!!

As a parent with a special needs child, the good times are amazing, but like any parent, seeing your child in pain, sick or frustrated is awful. We want to step in and fix things, but that is not always possible and yes....it is hard to watch the struggle. There has been many a time I wanted to cry seeing him have to go through these things, but tears solve nothing. He and I both have to be strong.....and we are. After all, like I said....there is no crying when dealing with special needs!