Hard

So having a child with special needs is really hard. I try to stay positive about it, but sometimes I reach my breaking point and Sunday was one of those days. For those of you who don't know Jake's background, he has Epilepsy and severe developmental delays. He is well behaved at school and church, but he has serious behavior problems at home and around other kids in unstructured situations. The last month seems to be worse than ever before. Jake hits or pushes every time he walks by Nathan or Max or any kid that's near him. He screams all day long even when he is happy playing. He is very destructive and loves to throw toys and anything he can get his hands on. He dumps his food on the ground all of the time making a huge mess. He is a challenge, to say the least.

Every time we go anywhere I am always worried about Jake and whether or not he is going to hurt someone or himself. It gets tiring. He still isn't potty trained and has bowel issues every time we go swimming so while our friends and family spend the summer at the pool, we spend the summer at home. We did buy a new waterslide this year so that Jake can at least have some water fun since this is one of his favorite things to do. All day long I hear Nathan crying and complaining that Jake hit him AGAIN. I can't handle it.

Sunday we were at my mom's house and I went upstairs to check on Jake and found my 7 year old nephew crying hysterically because Jake threw a bowling pin at his head (it was a small one, but still pretty hard so I understand that it really hurt him). My sister made a comment to me about it and I just went upstairs and lost it. It wasn't her fault, she was just concerned about her son, but I was already feeling really frustrated and it was just enough to push me over the edge. I really think I cried uncontrollably for about an hour or so. To make matters worse I could hear everyone singing to the May birthday people downstairs, When they sang to Nathan I cried even harder because I felt so guilty that I wasn't dowstairs getting excited for him, instead I was up there crying about Jake. It's not fair to Nathan and Max that they are always getting beat up and that Jake takes so much of our attention. I really don't know what to do.

We have been to so many doctors and specialists trying to get help for him. We are taking a parenting class right now that we are now 7 weeks into and still haven't noticed any change. Jake doesn't make any connection between discipline and the behavior. He will just turn around and hit or scream 5 minutes later and wonder why he's getting in trouble again. I finally went to a new doctor on Monday and he suggested trying behavior medications that might help Jake be more in control. Up until now I have been somewhat against this idea because unlike some children with ADD/ADHD or Autism, Jake can pull it together at school and in structured situations so in my mind he should be able to behave at home as well. However, I've reached the end of my rope. Something has to change. The doctor thinks the medication will help and won't cause him to be any more delayed. The worry is that it might interfere with his seizure medication causing him to have more seizures, something that we do not want to happen. So I think we are going to try it and see how it goes. I figure that we can always stop if it's not working.

We just had Jake's IEP at school which was a total stressful nightmare, but in the end we got what we wanted. Jake is going to repeat Kindergarten in the same collaborative class that he is in now. He has made so much progress this year, but he still isn't close to being ready for 1st grade and I refuse to put him in a special day class where he is only with other kids with special needs. He needs typical role models to emulate because he is such a follower. He is going to have a one-on-one aide again which eases my worries a little about him having a seizure and falling off of the big toy or hitting his head on something. I hope this is the right choice.

I really have a special place in my heart for Jake and love him so much. He can be so sweet and loving at times, it just seems that those times are getting fewer and farther between. I hope that this helps him be happier and more socially acceptable so that kids will want to be his friend and play with him. It's so hard to watch kids not want to be around him because he is so physical, though I totally understand it. Kids don't want to get hurt. We don't go to parks or playgroups for fear of what Jake might do. I try to do fun things with Nathan while Jake is at school so that Nathan isn't totally deprived. I don't want him to grow up resenting Jake. Jake has been aggresive since he was little and I hoped that he would outgrow it or that it would get better. It hasn't. It's gotten much worse and now that he is bigger it hurts a lot worse.

The bottom line is that I'm tired. This is way harder than I ever imagined.