I’m a mom to two kids who have been diagnosed with ASD, or Autism Spectrum Disorder. First, you should know that there are a number of children and adults on the scale, and you should also know that Autism affects each person and family differently. Also, there are a number of blogs out there that just like this one, seek to break the stigma surrounding children and adults with ASD.
If you are a parent of any kind, you know your time is extremely valuable and highly limited. You have chosen to give your time to your child, (children, fur babies, etc..) and provide them with love, shelter, food, clothes, knowledge and providing those needs is all consuming, and we do it willingly; lovingly. Like they say, it’s a tough job, and we parents do it willingly.
With as tough as being a parent is, we get no sick days, no time off, no paid vacation or retirement plans. We also have to work, attend school meetings/functions, come home, prepare dinners, clean up, get everyone bedded down so we can get up and do it all again the next day. Weekends are spent preparing for the next week of the grind, intermixed with HGTV episodes while laundry is being folded.
Tired, yet?
Don’t misunderstand me. I love my kids. Adore them actually. And I, for the most part, enjoy being a mom. Autism though, has really put a damper on that for me. Just like there are books about parenting, there are books out there that are about parenting a child with Autism. But even if every parent read every book ever written about parenting, not all scenarios will fit your particular child, and not every tip of advice for an Autistic child will fit that child. The big difference for me, as opposed to parents who have children that can communicate, is that my kids CAN’T communicate. They babble mostly. I think when a person first becomes a parent there is a feeling of loneliness that occurs when you bring your baby home and it’s just you. There’s no one to talk to. You can talk to your baby for sure, but it’s not the same as having a conversation.
That’s what I wish more than anything I could have. A way for them to communicate. To each other and to me. I can easily verbally express my anger, frustration, joy, sadness, etc to my husband or my kids, but they can’t verbally express those feelings. Instead, my daughter watches the sappy moments in her favorite animated films and then she will make herself cry. My son gets frustrated easily, so he throws things and hits his sister. Hard. They want to be together and yet, be apart. It depends on how they feel that day. This is typical behavior. Autistic children don’t usually want anyone in their personal space. However, we are a very loving, huggy type of family, and I think we’ve rubbed off on them. A bit, anyway. I feel that if they could communicate their feelings, the meltdowns wouldn’t be as bad, but maybe they would. Who knows.
On top of this, I feel guilty. This entire post has been about my frustrations, what I want for my kids to be. At the same time, I know my kids are frustrated as well. To be trapped inside of their own heads, to have to find different ways of communicating other than verbally, to have their senses completely overwhelmed all of the time…I can’t even imagine how that would be, but it doesn’t sound nice at all.
On top of this, even with websites and supports out there, I still don’t tell very many people that both of my kids have Autism. As you can tell from this post, ASD doesn’t have a short definition. It’s not the same for every child. What one Autistic child can do, another one cannot. Even if you give two children the same treatment there’s no guarantee that it will work for both kids. I just don’t feel like I have anything in common with ‘regular’ parents. No offense, honestly! But while parents of normal children talk about reading goals, sports or sleepovers, my kids get passed through the grades, because school levels don’t mean anything. They have no friends, and aren’t allowed to partake in PE. I just don’t know what or where the common ground is located.
I’m not even done.
My daughter goes to a special needs school in a town 30 minutes from my home town. She’s made enormous growth going there. My son, however, is still stuck in the special needs classroom in the school district where I live. You see, when you have normal kids, you, as a parent, can choose where your kids attend school. I don’t have that luxury. I have to work with a ‘team’ who decides what’s best for my son. You read that right. Even though I raise him, spend the majority of time with him, know him better than anyone else, and I don’t get to decide what’s best for him. My opinions and wants count for nothing. Zip. Zilch. Zero. Nada. The ‘team’ says that they do, but it’s basically 8 people against me. I am my son’s only voice and advocate; and I can’t win alone against an entire school district. I would have to hire a lawyer, and that is something I cannot afford.
Speaking of things I can/can’t afford…
I just had to file guardianship/conservatorship against my daughter. This is something that parents of mentally challenged children have to do when they turn 18. Cost? About $1000.00 That’s right: Even though being a parent is costly enough as it is, being a parent to a mentally challenged child costs even more. Benefits? I get to manage her money, and make medical decisions for her. I think though that for the money and court time, I should have filed power of attorney, and I think I will when my son turns 18. It’s just easier.
This is the most recent article that sums up the cuts that keep happening in the world of mental health. I am starting to think that politicians think that if they don’t fund mental health care, that the problem will just go away. Trust me, it won’t. Kids and adults with mental health issues/concerns need help, and they need it fast. Missouri can’t keep ignoring this and issues like this with constant slashes to funding. I’m not saying I have all the answers, but I am saying that we need to re-focus our priorities. These problems aren’t going to disappear, and families like mine and so many others need more help than the zero we are getting.
Rant over for the time being.
#autism #parenting #autisticparenting #autistickids #frustrations #mentalheath #myvoice #opinion
whatisnormalyou 
I’ve bluntly told them that what they do with placement for my children will blow up in their faces, and not to come complain to me when they do the exact opposite of what I’ve asked of them. As a autism parent of two I understand the high level of nonsense with public schools, bit it is improving slowly, and you have rights as a parent. And also remember that teachers in special education give everything for very little to nothing in return. My kids are completely different at home and at school, I’m a big fan of natural consequence for decisions. Such as the school system putting my severely autistic kid in a regular kindergarten class without an aid in a new school, my response, good luck with that I already told you what she needed at her IEP, first day of school I didn’t even leave the parking lot didn’t make it to my car, she lasted five minutes. But the problem was fixed once I stopped her screaming, let the school system learn their lessons the hard way then enlighten them too your mode of thought.
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