Porter stories.

This needs a little background so you can see how funny it was. At school the first thing Porter learned was what they call attending skills. It is really cool how they do this, they break down every step of sitting in a chair and it takes a while to pass off every part of it, but autistic kids struggle with sitting so it is really important. Anyways Porter had to learn how to keep his feet down and still, then he learned to keep his hands down and still. Then he learned to have a quiet mouth and it finishes with them having to make eye contact for 3 seconds. Eye contact is really hard for them that is why they say 3 seconds but they work up to having to make eye contact the whole time they are given a task by the teacher. Also ABA therapy gives a reward when they do what is asked of them. They can get a piece of food, or be able to play with a toy. Really it can be anything that interests them. For those who think this is bogus or wrong to do with kids, or like we are training them like you would a dog, (which is something someone said to me) I had it explained to me this way. When we go to work and we do our job what happens? We get paid. We are rewarded for our work. We are teaching these kids real life skills. So if you ever wonder if it is okay to reward good behavior from your kids, think of it like that. So here is the story.

This morning Porter was playing with a big stuffed dog we gave Brinley for Christmas. He brought it down to breakfast with him. Then he set it down on the floor, then he said "okay boy, feet down, hands down, quiet mouth, look at me 1 2 3. Good boy." Then he gave the dog a cheerio. He has done this a few times and he has told the dog many times "wow boy, your doing awesome". He also told me the dog was named poke. Nice name.

While I am on the subject I want to mention. He is doing really well at Pingree. I have never seen him progress so much so fast. He is really succeeding and he really enjoys being with the other kids in his class. He actually has friends and he will tell me about them. He has never had a friend before that wasn't a cousin, sibling or Tyler Coburn. Which even those he did not have normal interactions with most of the time. Now he plays with the boys across the street and asks me if kids from his class can come to our house to play. His teacher told me a really neat story about Porter the other week. Porter is a favorite in the class. The kids love to see what he is going to do and he makes them all laugh. For kids who are autistic and don't socialize normally they like to play by him. This sometimes annoys Porter because the kids all like to play by him or with him and he doesn't always want to play with people, but a lot of times too he will make up games and get the kids to play the games with him. This skill I would like to thank Nickelle for because she has taught him this. Anyways there is a little boy in his class that I have never heard speak or grunt or anything. One time I saw him with his Mom and I heard him laugh and saw him smile and that was the only time I saw anything like that. He is really sweet and works hard but he always has the same look on his face and at the beginning of the year he could not even gesture for something. Now he can point and show you exactly what he wants. Awesome. Anyways one day this little boy was following Porter around so Porter took him to a poster on the wall with a bunch of animals. Porter would point to a picture and ask the little boy to make the animal noise of the animal. Porter would make it first and then he would ask this little boy to. The amazing thing was the little boy tried to and was making noise and trying hard to repeat what Porter was saying. Porter kept encouraging him and telling him he was doing great and the little boy keep trying to make the noises for Porter. Porter's teacher told me it made her cry which she is not a crying person. I am so glad Porter is in a environment where he feels he can be himself and then grow because of it.

Another amazing thing about being involved at Pingree is to met the other parents. When you have a child with needs you feel really isolated from other people. It feels like everyone around you has typically developing kids and they don't understand what your life is like. Or else you will be with other people and your child will be acting autistic and you feel you have to explain their behaviors because they are so different. Or else your five year old kid will be melting down at the store and you get these looks like I am the worst mother in the world because I have a 5 year old throwing a tantrum in a store. Then they just love to comment on how many kids I have and how close in age they are and make judgmental comments on how my hands are too full, it feels like they are saying to me, you better not have any more because you can't even handle the kids you do have. Or my personal favorite is when people tip toe around us, or not talk to us because they don't know what to say because we have so much on our plate. Which leaves Dallin and I to feel like nobody thinks we have anything to offer or that we are somehow not normal now so we need to be treated differently. It is not fun having your trials all out there for all the world to see and judge how you handle it. Sorry for my explanations but this is truthfully how families with special needs kids feel and it can be hard to feel accepted, and I think it is good to share those kinds of feelings with others so they can understand these families. Anyways it is awesome to be in a room with other adults and kids are freaking out all around you and no one stares because we are all used to it. No one acts embarrassed for you. No one is frantic to try and get your child to stop freaking out. No one stops talking to you or judges you because you are different. Instead you look at each other and think "you understand my life and you know the joys and the hardships. You know what it means to be on this unusual journey. You understand me and can accept me fully." You ask each other questions that you could not ask other women like, do you have any ideas on how to get my child to stop scrapping the walls and eating the paint off them? ( I have been asked this ), do you have any tips for how to stop banging their heads all day because I am afraid he is hurting himself. Or my child is awake all night long and never sleeps how have you gotten your child to sleep. Then you make instant friendships with these people because it is not often you meet someone with a child with needs. No matter who they are, where they are from, what faith you believe in, you make instant friends with these families because of this bond you share. How many people get that chance to love people automatically like that. That is just another one of the awesome blessings. Anyways I meet these parents who blow me away with their challenges. There was a Mother whose son was in Porter's class and he actually passed away. I hurt so much for her. One Mother who has 5 kids and 4 are autistic has two kids at Pingree and has moved from Idaho to be there. They are living in a 2 bedroom apartment because their home in Idaho has not sold. But she tells me every minute is worth it because of the school. We understand each other because we know what little was available to our kids before. One Mother has 6 kids and all 6 of her kids have been diagnosed as autistic. She has all different kinds of autism with the kids which means different types of therapies and challenges. Can you imagine knowing that the likelihood of all 6 of those kids will live with you their whole lives and have to worry about what could happen to them all when you pass away or get to old? Let alone what the financial burden would be of all their therapies and taking care of these kids would be. For one hour of speech therapy it can cost close to $300. We are told that to provide the best possible opportunity for these kids they need 30-40 hours a week of different therapies. Insurances don't cover most therapies or at most you can get 24 sessions in a year covered. Schools don't provide much because of funding etc... So that leaves you trying to figure out how you can afford it. That is another amazing thing about Pingree. You can get it all there and you can get scholarships. Anyways I made instant friends with this woman and she was so kind to my children. Another couple couldn't have children for years and finally had a little girl when they were almost 40, then to find out she has autism. They are wonderful parents and I see her Dad everywhere. They love all the kids in the class and always make me smile.

The environment at the school is so calm and positive. Nobody gets frustrated with them even though they all have bad behaviors. We have all had experiences with kids who were just really naughty and it was frustrating. How hard was it to be patient with them in a teaching setting? Now imagine 10 kids who every single day will have behavior problems. Every teacher smiles all day and is incredibly positive. Instead of hearing stop waving your hands, stop yelling, look at me, sit in your chair, don't run in the class, don't bite me, don't hit each other, etc... What you hear is positive talking. At first you think, there is no way this can work and then after time you see it working. But what you do hear is thank you for sitting in your chair so and so, thank you for walking, thank you for looking at me, thank you for talking quiet. Instead of telling the kids no, and stop they turn their attention to another child who is doing the behavior they want. By doing this it makes them engage with what is going on around them and teaching them that we should do the good behaviors of others. Not to say these kids don't have consequences they do, but they are different and on a level they can understand. But what they don't do is make them feel that by being them they are somehow wrong. Autistic kids struggle with understanding consequences. Their brains are not wired that way and so they don't connect a behavior with a consequence. In fact they don't really clue into their behaviors, all this has to be taught. I have learned so much more patience and acceptance. Instead of feeling helpless and unsure what to do. I feel empowered and I feel like anything is possible for him.

We are waiting to find out if Porter will be accepted for another year at Pingree. I am incredibly nervous and really want him to be there for another year. But I try to remind myself that the Lord has always taken care of Porter. He has always helped us find the right people, the right programs, and he has gained the skills the Lord has seen fit. He will continue to do so even if that means Pingree is not the answer. I feel so blessed that we have had this chance. I cannot believe the growth in him and the wonderful blessing this has been to our family. Just even having him in one place all day for therapy has meant for the first time, me at home all day with the kids. No therapy is going on at the home so the kids don't have to be quiet and stay somewhere else. Or me having to try and juggle being in the therapy session and taking care of the other kids. Not to mention the hours the kids spent in the car. I have had to raise Bennett and Nickelle in waiting rooms, therapy rooms, or their bedrooms so that Porter can have therapy. The sacrifice that those two have made for their brother is tremendous and I am grateful they were so young for it. I finally feel more balanced with the kids. I don't feel like everything we do is about Porter and all the other kids are left in the background because fighting for him required so much of me. It has been wonderful to see my children have time with me. They are some repercussions with Nickelle that I hope with time will heal, but overall I feel so blessed that we made it through that time and we are all doing alright. I feel so blessed and am so grateful for this year.

Sorry for the length and if you made it through you must be a true friend to read all my rambling. But we are so grateful for the support of family and friends. It has been wonderful to see the people who have stood by us and how Porter has affected everyone of us. It is incredible to see when your child affects others just because of their gifts and challenges and I feel so blessed to have been able to witness this. We love you all and have a happy New Year.