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This topic, the top 10 things a special needs parent wish you knew, has been on my mind for a while. Probably at least a year. Being a special needs parent, in my case a autism dad, my life has it’s challenges and rewards just like you and that makes us very similar.
- We are not crazy. (and yes, I do question this myself weekly) Although, at any particular time the things we say and how we may act would suggest this to others. It comes down to that we are just like you in many ways typical dad, we’d stand in front of a gun for our child. We want them to heal and would like them to live as close to a normal life as any other kid. And there is some selfishness that we too, the special needs parents would like more of a normal life.
- We don’t want your pity. I’d be much more happy for people to ask me about what is going on with my kids’s life and show genuine interest. Listen, maybe offer some advice in any way you know. Shit, even offer some talk about other things going on in life, my known interests or yours. Even some respite (could be forced too) would be nice once in a while. But don’t feel bad for me, I got this (most of the time). I’ve been through the victim stage and it took a while to get out. I revisit sometime too but that says I’m human. We will rarely ask for help, but that does not mean we don’t need it either. (see #8)
- Going out is TOUGH. Seriously we appreciate the invites and don’t stop them, we’ll try but don’t be passive on it either. Don’t stop asking. You need to understand that going somewhere involves a LOT of forethought that includes:
- length of time away – will it be too straining on my son? Will he have separation anxiety? Who will put him to bed? Will I be able to have them, or will I be able to mimic his typical process to go to sleep well so he actually can?
- If we went away I need to bring a juicer, access to fresh organic veggies and able to prepare a specific diet for him? Will that be as simple as it is at home?
- who would watch him that is actually qualified, understands his non-verbal suggestions and needs and would not just throw an iPad in front of him all day/night? Finding a special needs sitter, that is actually qualified and not $50/hr is not simple.
- Is there a therapy going on that we’d need to reschedule, and can we afford to switch it? What’s the next days’ sessions / work / life schedule look like?
- Are we taking him? Will your home, place we are going be comfortable with a special needs kid? Ya, seriously – the looks, stares, accommodations – many more times than not we’d be constantly on him or watching him; avoiding treats or outbursts and that makes us “not there”. Could we actually engage and enjoy it?
- Will we be able to actually enjoy ourselves at all or sit and check in on his progress all night?
- …. and that is just a few of the many things we consider.
- see #8
My kid is not a brat. I’m not a bad parent either, it’s not about my disciplinary skills. It’s called a sensory disorder and he may be affected by lighting, a sound or overload of many things going on that causes him to whine or have a meltdown. Staring at us like we are yelling racial slurs, burning a kitten and an American flag pisses us off. When our kid melts down we know what to do and if I’m out, I have to make the call on “if” I can calm him, “if” I really need that one thing for home or I should just jet to a happy place for him. Telling me that I should put my kids shoes back on when he’s in the cart at Target is just asking for me to give you a smart ass reply. Telling me that “her” long hair pulled into a pony tail is beautiful when he has on a Cameo Johnny Cash shirt and cool shorts (again no shoes or socks) in Target will only get me to respond “Thanks, and for his age he has a really large penis too!” Those looks of shock are almost priceless. Telling me my kid needs a spanking is only going to get you an angry remark. You’ll blow my fuse. Take a step back, maybe offer some help from a genuine point of view. Or just smile and move on.- I’m not lazy, I’m beat. Seriously, more times than none when we have the opportunity to ourselves we try to get a few personal things, house things, bills etc. done but mostly try to sleep. We need the energy as a special needs child can be both physically and mentally exhausting. There are times I’m in a daze from ongoing weeks of disturbed sleep and losses in my son’s progress, work, life. Yes, it can be taxing but we get by as we can. There’s an order of importance of what we need to do and we know it well.
- I’m not a mess. Ya, I’ve maybe skipped a few haircuts, talked myself into a beard and have not washed the car in 7 months. I’m evolving and sometimes we forget, or it’s not on the top 25 list of importance that day/week. Sometimes it’s nice to just do nothing when we can. I mean nothing – sit and stare at something and try to gain inner peace. Sometimes I cannot just make it to a car wash and honestly I talk myself into knowing it’ll rain in a day anyways.
- Advice needs to be delivered with candor. I get it: you have a smart phone and know “the Google” and read about autism, and this and that and this. Thanks, appreciate your insight on what you read about with no idea on what it really means. I appreciate the PubMed article you read the headline on that you think will help me. Or that person at your work, who’s brother in-law’s kid has autism and goes to speech therapy, so we should try that. I seriously appreciate your tips but would rather you read and understand #8.
- Yes, we have a new special sense. All of us have 7 senses but not everyone uses them all, or some better than others. Special needs parents have been given an 8th sense: the ability to detect the geniality of a statement or gesture. We can sense your half-assed unthoughtful suggestion or display to 100% perfection. This goes for family, friends, providers and the general public. And you know what? It’s a damn nice feeling when that suggestion or display is genuine and heartfelt. The suggestion on a new amino acid test that could outline if there is a depletion in my child because of his diet delivered with true compassion is very welcome and appreciated.We can see the love and intent a mile away.
My life doesn’t suck. Yes, it is challenging but it is also very rewarding being a special needs parent. I’ve learned so much in three years about life and my outlook is completely different. We have many challenges. My son may not be my first mate on the fishing boat or that super-star boxer I wished for. He may be under our wing for a long time and then the legal responsibility of a sibling. He may completely recover too. Both are ok, it’s not want we planned but we’ll get this. We vacation as much as we can with schedules and school. We save little that we can and invest in “memories” together in a foreign land. The latest Gucci shoes or that one watch model I’d like really does not matter any more. Seeing my family together and happy far surpasses any article of clothing, new car, ribbon or trophy. Pictures of fun on the beach Christmas day are what we long for.- Ya, I’m still me. I’ve not changed, I just evolved by choice. This little dude needs me and I’ll be here, fighting until the end for him. Maybe I can’t go out all the time, or decline that invitation on Sunday to a football game just realize that it’s not you, it’s me. Maybe stop by without invitation. Maybe try again. Don’t stop trying and know I appreciate your friendship, love and respect for what we’re going through. Stick around and we’ll get together soon.