We did some fun stuff with the family this week, last Monday we went with Courtnie and kids and Susy and kids to see all the 24 th floats. That is a great way to see the floats. Parades are a little stressful with Porter. Later in the week the AC in our house starting working even worse than it already was. So we called somebody in to look at it. It was so hot in the house and the kids kept waking up and throwing up in the mornings because of how hot it was upstairs and then to top it off Bennett has been getting a fever from teething so it was getting out of control with the heat. The poor kids have had heat rash for a few weeks, it has been oh so fun. Anyways the AC was working but it just seemed it was pushing nothing out and could never get cooled down and it would be on like all day. Well it turned out a whole manuel was shoved up into the coil so it was clogged and nothing could come out. Anyways it is working a lot better now. But that day we had the neighbor boys come over and swim with the kids. Porter had a hard time but Nickelle LOVED it. Porter mainly just kept to himself over to the side of the yard or tried to escape to the front.
To be honest he is really struggling these days but I feel so blessed because for some reason it has not been wearing on me like it normally does. Don't get me wrong, Dallin and I are exhausted and somedays we just don't have any patience left, but overall this has been different for me. I am not sure if it is knowing that he will be in school in a while or I am sure finally not being pregnant has something to do with it, but I am hanging in there pretty good. I know a lot of it has been the support system we have here. That has been amazing. Just knowing family is right around the corner just lifts our burden. Not to mention this ward has been awesome. This probably sounds so weird but any of you who know Porter and have seen him pretty keyed up know how frustrating and exhausting that can be. Well now imagine that he is like that all day non-stop and you are taking care of him. That is what his bad days are like. Instead of a moment here and there it is constant and non-stop until one day he wakes up and he just starts doing better. You can never really plan anything because at any moment he can suddenly be doing so badly you can't leave. Sometimes it can last a day and sometimes it can go on for many months. Our poor primary presidency has been really stressed out by it. They want so badly for us not to worry about him and Porter to have a great time. But we know this is just part of the package. He has not been doing well. In fact yesterday I went to check on him and he had run out of the room and they could not get him back in. I was out there with Bennett and then Dallin came out with Brinley and then a member of the presidency, April looked at us and said, you know what I think Bennett can go to nursery. He will do fine. So off he went. It was great to have one less kid to try to help at the moment. I am not sure if he will keep going but Dallin had to sit with Porter the rest of the day and it was really helpful. I think we will have to do that for awhile until he stops trying to test them so much. There could be a lot of reasons why he is having such a hard time these days, but what makes me sad is that we can't just explain things to him and he can process it. This is his only way for making sense of what is going on around him. It is really hard as a parent to watch when he becomes aggressive to others, this last week he had his hands around one of his cousins throats and I just wanted to cry. Last night he plowed Bennett over and kicked him in the face. His face is all cut up and so is his shoulder. I worry a lot that he is a danger to others and himself. I feel so bad for the other kids and frustrated that I can't control Porter's behaviors. I have to remind myself a lot during these times, that I am a good Mother and I am doing my best. But it is hard sometimes to remember that. Or we will be in the store and I have a 5 year old screaming and hitting me and yelling things. Here I have 3 other kids just sitting there playing and then my 5 year old on the floor. I get the dirtiest looks and then people LOVE to comment on how many children I have. You can just feel the judgement. Sometimes I just want to wear a sign that says "MY SON IS AUTISTIC, PLEASE DON'T STARE, KEEP WALKING". A few times I have had to say that to people, but overall I really don't care what people think about me. It takes a lot to hurt my feelings with things people say, I have heard everything from your son is mentally retarded to he doesn't need to be at church because he is perfect, so how about you keep him home. I have heard so many times people tell me how wrong it is that I have so many kids close together. Every where I go I hear that one. I just think to myself when someone says things like this, I think how sad I am that they are so closed minded that they are missing what gifts I have been given by my challenges. For one who knew I would end up so patient. I didn't. But I cherish every good moment in our home so different. I know how precious it is and I get a chance to see that now not when my kids are older and I missed it.
I am so blessed with my kids. To be honest I am not sure how they put up with life being controlled by their brother. He beats them up, makes it so no kids can come and play, we have to do everything around his schedule, and the worst of all is that they have parents who sometimes are so exhausted by it all that we don 't have near enough patience with them. Somehow our kids just adore their brother. Somehow he is there hero. Somehow they have learned much better behaviors even when really bad ones are modeled for them. Somehow they have learned kindness, and social skills. Our little Nickelle is so aware of other people's feelings. I think she reads them so much easier because of him. Bennett is so good at making us laugh when we are at our wits end. He is a constant reminder not to take things so seriously. Brinley just melts my heart and fills us up with happiness. Porter LOVES his siblings. Right now Nickelle just got hurt and he went and was kissing her foot. He will ask sometimes to hold Brinley and the other day he was holding her and as usual he said, " hi, I a Porter, (then he names everyone else but then he said) we love you". He is very protective of them and I love it.
It probably sounds like I am down or complaining and that is not what I am trying to do with this. I feel so blessed to be able to share what it is like with him. It is also so important to me to educate others. There is so little I can do for how others will treat Porter in life, but if I can help by being honest and then that many more people understand him , than I am all for it. I have been so tremendously blessed but if I only share only my blessings it will be hard for others to see how big those blessings are. I am so grateful that the Lord is carrying me through right now and that I really have not felt too deeply the stress of how my son is doing. Sometimes he lets me feel it all, so I can grow and other times he gives me rest. I am so grateful for the rest I have been receiving and glad that I can write it down to remember.
1 comment:
I know I don't know you incredibly well, but you are very special to me. I could relate to so much in this post. Thanks for writing it. I know what it is like to cherish the little things, because you have learned to never take them for granted. While it is unspeakably hard at times to have a special needs child, I wish everyone could do it, because it refines you in a way that nothing else can. I wish everyone could experience life like this for just a few days. It would all but erase judgment and intolerance. Keep up the great work. You're a great example to me.
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