I am not a parent of a special needs child, however my younger brother is a special needs child, he will be 18 in July and I will tell you the most magnificent boy he is. He has had countless surgeries, doctors said he wouldn’t be born, he wouldn’t live an hour after birth, a week, a month, a year, past 10, past 12…and he is 17. He was born with approximately 72% of his brain outside of his skull, he has countless issues wrong with him but I will tell you what, he is a miracle! Just about everything they said that he would not do he has done! He even goes to school! He doesn’t talk, and only signs a little bit. His favorite movies are Cars and the guardians. He loves swings and playing outside. He is such a special boy who I have helped care for all of his life and has taught me so much. The only problem we have now, potty training him is hard seeming the school won’t follow the scheduele we have made. So it doesn’t help him much to have the scheduele at home when he’s there and not have it at school. Second, there’s only so much he can mentally grasp, we love teaching him new things as best as we can but now that he’s older, there isn’t much for him to want to do, or learn really. He will always depend on someone for his life, which is no problem because if anything were to happen to my stepmother (his mom) I am getting him. I just keep trying to find something else that will spark his interest, or get him to do besides the normal, usual things he likes to do. He loves arts and crafts but will become bored after 30 minutes or so. Anybody have any ideas please share
Wow, sounds challenging. I was a social worker for many years and have a son classified as multiply disabled. However I have never dealt with such a profound disability. However being that no one is responding, I will try my best. After all, two minds on a problem are better than one.
My son is only 2 to 3 yrs behind developmentally in many areas. Anyway, sometimes I think explicitly telling my son what I expect or what would make me happy makes a difference. Sometimes I assume that a job is too difficult for him when in fact he can do it, but just needs continually prompts and reminders. It’s hard work being consistent, prompting, and reminding. It’s easier to just think he isn’t ready to do a job because he seems disinterested. School sometimes encourages dependence that is hard to break at home. At school they are trying to get many kids to complete the same task within the same time period. It’s easier for the aide to just do a lot of tasks for the more disorganized kids instead of slowing down the whole class. It destroys his ability to self initiate because at school the aide is continually making accommodations and managing his day. At one point, I had to hire an advocate to fight against some of his accommodations because they were not helpful and instead we detrimental to his overall personal growth. Perhaps you might have to eventually go that route too if the school is not promoting his growth. Anyway independence is an issue that I am continually struggling with at home too. I’m not sure that I am doing a great job but I am always trying my best. Our success doesn’t look like the norm so it’s hard to tell whether I am doing okay. At the moment he looks good in a regular classroom with kids a year younger than him as long as he has his aide to keep him on task. It hard not to beat ourselves up when things aren’t going on schedule but it sounds like you and your family are working hard.
In the interest area, I tackle the problem from many angles. Sometimes I want my kids to expand their interests too. I have one sneaky way. I leave materials where they are likely to find them and get into them all by themselves. If I wanted him to improve his fine motor control then perhaps I would leave modeling clay or beading stuff on the kitchen table for him to find on his own. Also I encourage by modeling behaviors. For example, I will just decide to draw or watch a documentary after dinner. No one has to join me in this pursuit because I am doing it for my own self improvement. However of course I always get enthusiastic participation. If I asked first, perhaps instead they would beg me to let them play on the iPad instead. In the car I listen NPR, etc. Now my son is addicted to it too. When they were younger I worried a lot about materialism and it’s effect on our society and values. So I found a CD with songs that presented my values and world view, and that is the only music I played in the car. My kids were obliviously singing songs such “all I really need is a song in my heart, food in my belly, and love in my family…” Now it’s noticeable that my kids are not materialistic. They are grateful for our modest lifestyle because in comparison to many we are extremely fortunate. Anyway I give these examples because they kind of demonstrate my technique of making interests and values insidious so they are naturally reflected in my children.
Since your brother likes being outside you could add to his outdoor interests with things such as binoculars, magnifying glasses, a sensory box filled with water or beans or sand. Maybe even an outdoor xylophone or boomwhackers (plastic percussion instrument). Perhaps he would like construction toys - blocks, legos, superstructs, etc. Honestly, building stuff is interesting and challenging even to adults if you have the enough materials. He sounds sensory inclined with the swinging stuff. My kids will play with colorful foam pattern blocks for hours. Ours are from Didax. They are designed for younger kids but if you buy enough of them then they are really interesting. You can make huge mosaic designs on the floor. If he is into scents, I bet you could even perfume the blocks with vanilla or another scent to help capture his interest. He might like to help with baking too. Whatever you do, if family members get involved too it will be more interesting.
Also I hate to think about limitations, instead I like to believe in neuro-plasticity and just keep enriching because there can be more growth. I read a lot of books from Glenn Doman. I think they could be helpful to you. I wish I had more insight for you. He is lucky to have a sister like you who is so invested in his growth.
Good Luck, Lori
Hey Lori, thank you for all you have shared. I am relieved that there are others that still work hard for their children with disabilities. You would not believe how ,any people have walked up to us in the park and just asked, “What is wrong with him?” I always get infuriated, But I simply say nothing is wrong with him he is just a little extra special. One woman even asked me if I wished he were different, a normal teenager. I told her I would have a heart attack before I wished that, he is perfect in my eyes and I wouldn’t change him for the world. Yes it would be easier, more brother and sister fighting probably, but I love him just the way he is.
My daughter loves smiling at him and grabbing his finger it’s adorable.
Unfortunately, he doesn’t talk, can’t hear and doesn’t have the best motor skills. He is still a bit wobbly with walking but still does pretty good. He doesn’t understand the concept of binoculars even if we were to show him he doesn’t have any real interest with things unless they move and light up. Like big toy romote trucks, the big foot that flips and stuff, loves swings. He doesn’t care for building things. And he would put legos in his mouth 
Just this year we finally got him interested to try to decorate eggs. The other day I got him to sit on the floor with my husband, our daughter and I. And he played with the light up moving ball she has. He kept lighting it up for her and pushed it towards her as she kicked it. After about 15 minutes he was bored and got up on the couch to watch t.v. Like you I don’t like to think of limitations, but unfortunately with him there are quite a bit. But we’re still going to think positive and try as much as we can. He loves going to the park, swimming (with someone there holding on to him, he doesn’t swim just kind of floats) And in a couple days my husband and I are taking him, our daughter, my other little brother, and our nephew out to Mosi 
Hoping for lots of fun!!!
I will definitely look into those books. Thank you again so much Lori!!
Hey just wanted to say I looked into those big foam blocks, we’re going to try those and we found these humongous lego pieces we are going to try with him too We also got him some more outdoor things. making stepping stones and stuff like that. THANK YOU!