A Parent Support Thread

[Jacob]

While we were in Philly for his surgery, we met with orthopedics to discuss his feet and the stuff they told us was COMPLETELY different than what we’ve been told at our local children’s hospital. I mean, even speaking into the future, the ”would be” outcomes of Nicholas’ mobility were night and day. I’ve been told by our local group that he will not walk or if he can, it will be tiring and he wont be able to walk without support. The hospital in Philly said he should ALREADY be walking, and wants him to have surgery on his feet soon. Last week, we had to do x-rays of his feet and today, we had a CT scan of his feet because they said he has a collapsed talis, among other issues.

Oh my gosh, I've just been reading up on this thread and I'm so sorry to hear about all of the struggles your son is going though! Poor thing. He'll be in my thoughts!

I am curious, though, which Orthotics company you visited in Philly? My family owns an Orthotics and Prosthetics company based in Philadelphia (well, offices all over the philly area.) I don't know too too much about their specialties, but that might be a crazy coincidence if it was Lawall. They work a lot with legs, braces, etc.

 

[Foreverfox]

Oh my gosh, I've just been reading up on this thread and I'm so sorry to hear about all of the struggles your son is going though! Poor thing. He'll be in my thoughts!

I am curious, though, which Orthotics company you visited in Philly? My family owns an Orthotics and Prosthetics company based in Philadelphia (well, offices all over the philly area.) I don't know too too much about their specialties, but that might be a crazy coincidence if it was Lawall. They work a lot with legs, braces, etc.

Oh wow, that is cool that your family owns an orthotics company there! Thank you for your kind words about Nicholas. he is a trooper and such a happy boy. He honestly has more confidence in his wheelchair going into a room than almost every other typically abled kid in the same room.

We worked with Boston OP. They have a clinic local to us in Ohio too, so it was nice that the rep in Philly knew our rep here and they could communicate.

 

[Shawna]

Don't get me wrong, I love my parents, but I cannot help but have a complicated relationship with them, especially my mom. She doesn't live with us anymore, but me, my dad and my brother make arrangements to visit her occasionally. I think the majority of it stems from the fact that I am on the spectrum and they are still ignorant to how we function. I feel like my mom is the worse of my parents. I am not saying she is a bad person, but she can be extremely insensitive towards my situation. My dad too to an extend, but he is the saner of the two. The same can be said about my paternal grandma and my brother, but this is about parents, so I won't get too carried away.

I feel like we, the people who are on the spectrum, may have better relationships with their parents if our parents had more knowledge, patience, and tolerance for us.

 

[Foreverfox]

Don't get me wrong, I love my parents, but I cannot help but have a complicated relationship with them, especially my mom. She doesn't live with us anymore, but me, my dad and my brother make arrangements to visit her occasionally. I think the majority of it stems from the fact that I am on the spectrum and they are still ignorant to how we function. I feel like my mom is the worse of my parents. I am not saying she is a bad person, but she can be extremely insensitive towards my situation. My dad too to an extend, but he is the saner of the two. The same can be said about my paternal grandma and my brother, but this is about parents, so I won't get too carried away.

I feel like we, the people who are on the spectrum, may have better relationships with their parents if our parents had more knowledge, patience, and tolerance for us.

I meant to reply to this last night, but didn’t get time to sit down to write a thoughtful reply. I can’t imagine how complicated a relationship with parents is, when they don’t understand that neurodivergence is real. I think most parent-child relationships are complicated, because in some way, there is no way they wouldn’t be. I definitely understand having a complicated relationship with parents, as I do with mine. Please feel free to message me if you ever need to talk about anything more. I don’t really have advice sadly, other than that it seems like your mom won’t change. I’m not sure if it’s entirely unwillingly, it might be that she’s really just doesn’t have a category of understanding for people on the spectrum. Maybe that is frustrating to her because maybe there is a part of her that wants to understand but just can’t. When that happens, people either put forth the effort to understand or they don’t, and it sounds like she won’t. I think for you to find some peace about it, you will have to accept it and sadly create a small mental barrier. It’s sad, it really is. I’ve had to do that with my own mother, otherwise she just gets me upset. I keep her at arms length, and keep conversations really high-level with her. Occasionally, we have a good day I can lower that barrier a bit and I end up glad that I did, but then the next day, it goes right back up. I hope this was helpful to you in some way, and as I said, I’m always here if you need someone to talk to.

 

[Shawna]

I meant to reply to this last night, but didn’t get time to sit down to write a thoughtful reply. I can’t imagine how complicated a relationship with parents is, when they don’t understand that neurodivergence is real. I think most parent-child relationships are complicated, because in some way, there is no way they wouldn’t be. I definitely understand having a complicated relationship with parents, as I do with mine. Please feel free to message me if you ever need to talk about anything more. I don’t really have advice sadly, other than that it seems like your mom won’t change. I’m not sure if it’s entirely unwillingly, it might be that she’s really just doesn’t have a category of understanding for people on the spectrum. Maybe that is frustrating to her because maybe there is a part of her that wants to understand but just can’t. When that happens, people either put forth the effort to understand or they don’t, and it sounds like she won’t. I think for you to find some peace about it, you will have to accept it and sadly create a small mental barrier. It’s sad, it really is. I’ve had to do that with my own mother, otherwise she just gets me upset. I keep her at arms length, and keep conversations really high-level with her. Occasionally, we have a good day I can lower that barrier a bit and I end up glad that I did, but then the next day, it goes right back up. I hope this was helpful to you in some way, and as I said, I’m always here if you need someone to talk to.

Awwww thank you, you are so sweet
I’m not saying my mom is all bad, but I do wish she would be more considerate about certain aspects of me ^^

 

[Foreverfox]

Awwww thank you, you are so sweet
I’m not saying my mom is all bad, but I do wish she would be more considerate about certain aspects of me ^^

I totally understand l, mine isn’t all bad either, just…we’re different people so something she thinks are acceptable, I don’t think are acceptable. And we’re both strong personalities.

 

[Foreverfox]

Just coming over here to brag about Nicholas again. He has certainly gone through his “I will only eat these one or two foods all day, everyday, for life” phase, but he has really been on a roll this month. Just for January, he has tried 8 new foods! Eggs, chocolate, bacon, corned beef, fish sticks, spaghetti squash, and pickle! He INSISTED on trying pickle. When he was a baby, we used this company, Little Spoon for his baby food, and one thing I loved about them was that their food flavor combinations were SO unique. They always said that it matters what you introduce your child to in the first 1,000 days in order to set them up for a more developed palette and willingness to try new foods. I’m not sure how much truth there is in that, but it seems reasonable enough. I’m really proud of him and he is always willing to at least try foods. For now he still sticks with about 5-6 favorites, but he’s definitely improving! He will regularly eat pasta with alfredo sauce, pasta bolognese, pizza, waffles, yogurt, cereal, and cut up banana rolled in crushed graham crackers. The cutest part about it is, when I ask him if he wants to try something and he doesn’t want to, he will go, “Heh heh, no thanks.” But in the most polite way possible. Completely melts my heart.

 

[-Blue-]

I have nothing really to add, but your post about all the different foods Nicholas is trying reminds me of when my sister was his age and would always state that when she was older and had her own apartment she would just eat pizza every day for every meal lol. Obviously, she didn't grow up to do that.

Sometimes you never know what you might like if you don't try it so it's good that he is experimenting with different foods. I grew spaghetti squash (by accident) and I never even knew about it. I still like regular pasta more, but it's a good healthy substitute.

 

[Foreverfox]

Oof. New struggle here. So, Nicholas just turned 5 and is starting kindergarten. He’s been reading for like, 4 months and can count to 100. School started last week on the 19th while we were traveling, so today was his first day attending with his classmates. He is attending school online at home, and his session with his class is an hour long, followed by independent work through the day at our own pace. He made it about 30 mins before fizzling out and losing focus and acting out. That is completely within reason for a 5 year old, but I just don’t know how to get him back on track. His teacher said that most of the kids get wiggly after 30 mins, which makes me wonder why they don’t break it up into two 30 min sessions…it was a little rough for both of us. I had to turn off his camera because he kept hitting me and I kept having to be stern with him, and then he got upset because I took the computer out of reach because he kept switching screens. Ugh. How am I going to do this. He has his first standardized test today too, and like, he is WAY smarter than tests, but if he doesn’t do the specific things they want, he’ll place lower than he is. A new level of anxiety I didn’t know existed, great. I don’t internalize it, but I do at the same time?