“We have alarms on all our doors so that if Declan were to open them and try to go outside, we would know. Sometimes he gets out, but at least I can tell what door he used and chase right after him. Thankfully, he has never gotten far.”
“We use the alarms as well for the same reason. We also added a latch at the top of our door. Unfortunately, my daughter is 16 now and has figured out how to open it. So, we are working on a new plan.”
“Oh man. That’s scary! Keep me posted on what you decide to use. I may borrow your idea.”
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“The medical bills are so high. I can’t believe how much money we have to pay out-of-pocket for his treatment.”
“Do you have Medical Assistance? Declan has had to have procedures where the co-pay was thousands of dollars. Thankfully, the Medical Assistance picks up those costs.”
“No, we never pursued Medical Assistance. I guess we should.”
“I would. The application is long and appears complicated, but you will be approved. If you need help, I can help you with it.”
“Thanks! I really appreciate it!”
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“They said they were recommending moving my son from his current school to the school in the district that has the autism specific classroom. I told them I did not agree. We just moved here, and they are not following the IEP. He needs time to adjust, and they need to focus on what does work for him before they give up and move him out.”
“Yeah, definitely. Does he like his school?”
“Yes. He likes his teachers and never complains about school. I would like for them to try again before they move him out. And follow his IEP!”
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I am an Autism Parent.
I have no shame in having children on the autism spectrum. I have no shame in saying that I am an autism parent and I should not be shamed to say those words.
If you know me, you know my name is Robyn. You may know I am married. I have three kids.
If you know that I am a parent, we can talk kids. As any parent knows, parenting is a challenge. We can talk about what each of our kids are doing. At home, in school, in sports, with friends. We can problem solve, laugh and share stories.
We can do the same if you know that I am an autism parent. But there’s more. We’ve learned as special needs parents that parenting a child with special needs is different. So, then we can talk about the OTHER things that we don’t talk about with other parents. Like the conversations I’ve had with other autism parents written above.
I do not say that I am an autism parent to gain any kind of emotion from my listener – positive or negative. I use the term to identify myself to other autism or special needs families. To say “Hey, I’m here. We can talk about those other things.”
The conversations I had above with autism parents – these people were all people I met after Declan was diagnosed. I was blessed to find and form friendships with them. To find these connections and be able to have these conversations. This kind of support is invaluable.
So, if you are a parent like me, we can talk kids. I am an autism parent, too. And if you would like to talk about parenting a child with special needs, we can do that too. I am here to support you all and I love the support I receive from you.
There is no shame in that.
My daughter belongs to several groups, and it is a lifesaver for her family.
She must value the support – that is awesome!
With no family near, me in the US, her husband parents passed, it’s not easy. Pleased she has them.
Absolutely! I admire you guys for surviving through it all and telling the tale too.
Sharing is caring and wasnt the old fashioned way to provide support to each other, without institutions.
Thank you!
Oh yeah!! It’s nice to know you can talk about all those *other* things without judgement too. The really rough parts that no one who hasn’t lived it can understand. 💌💌
I agree! It’s just great to have the support of others that “know” 🙂
Yes, community is important. You probably give far more support than you could ever imagine.
That is very kind – thank you, Jeff!
I’ve met the most wonderful people since my son was diagnosed. Great post! ❤
Thank you!
Lovely in its poignancy and courage. Beautifully written and I’m glad you decided to move to the WP blogosphere because of all the parents you will probably be helping and are already helping. 🎈
Thank you!
Our young grandson has recently been diagnosed with level 2. Grateful for this blog
So happy to connect with you! Thank you!
so happy with your post. i myself have a son who has autism…
Thank you!
I totally agree with you. It may not be easy being an autism parent;there’s now a new thing where there’s an argument about even possessing your child’s identity… Etc but love for your child makes it so much easier.
I agree – that perspective is what drove this piece really. I am not trying to possess my child’s identity or talk over them. I talk to other parents about being the best parent I can be for the child I love – and when your child has special needs, those conversations are different. Thanks for reading and commenting!
Hello Robyn. I enjoyed your post. Overcoming the feeling of shame is important step for any parent that has a child on Autism spectrum. In the beginning almost 14 years when my son was diagnosed I remember myself the feeling of shame each time I went somewhere and other people kept staring because they could not understand his behavior. I didn’t want to look at anyone in the eyes since I did not want to see in their faces the expression of pity or judgement. It gave me anxiety to even leave the house with him just thinking about that. I am grateful that despite how I felt ,that did not stop me and it should not stop any other parent out there since shame for one thing ,leads to isolation. You try to avoid things and places and people just because you feel ashamed. Our children are smart and sensitive and they can sense how we feel even without us saying it out loud. As a parent we have to think what is the message we are sending to our children ,not just by words but most importantly our actions. Being ashamed is exhausting which can leave you drained mentally and emotionally to face the other challenges. To any parent out there who are feeling this way understand at first that is normal feeling but please don’t get stuck there. Overcoming the feeling of shame it will free your mind and heart and you will feel with renewed energy to help yourself and your child in turn. Sorry for the long post. Keep up the good work with yourself and your child. Kleida🌸
Thank you, Kleida! You keep up the good work too! 🙂