You just don’t get it

I recently read a blog post from someone that was…..I’ll just say….very critical of my wife and I. Honestly,  I can’t expect everyone to agree with my thoughts and opinions. However,  questioning my character is something altogether different. I believe very strongly that everyone is entitled to his or her own opinion. I’m not going to link to the post for a few reasons but mostly because I don’t want to give this person any attention. A few of you out there know what I talking about as you have read the post and the person that wrote these things knows who they are and that’s good enough for me.

I have many new readers and I thought I would just take a few minutes and touch on why I have this blog.

I have this blog for many reasons. I want to help others to get a better understanding as to what special needs parenting can be like.  However, the most important reason for me is to spread Autism Awareness by sharing our story. My intention is not to receive pity or sympathy from anyone.  I choose to be very transparent and honest about what goes on in our life because I want people to understand how different Autism can be from person to person. I also want people to understand that every family is met with different challenges and has to handle these challenges in a way that’s best for their particular family. Just because their actions might not make sense to someone doesn’t mean they are doing anything wrong. I can speak from personal experience and tell you that many things my wife and I have to do for our family doesn’t always make sense to the people in our lives. Those that do understand are typically the specialists, doctors, teachers and those of you out there walking a similar path.

As a special needs parent, my wife and I face many challenges. Some are more challenging then others but few are as demoralizing as being openly judged and ridiculed by people who simply cannot comprehend for even a moment, what it’s like to face these challenges, day in and day out.

While it’s true that our life is challenging, it’s also totally worth the effort…and in my case….the hair loss 😉  My kids are each amazing in their own distinct way. I’ll say upfront though, that I would be lying to you if I said that I wouldn’t take Autism away from them if I could. However, with that said,  I love my kids for who they are, Autism and all.  Despite these sometimes overwhelming challenges, my kids all have amazing qualities and are each beautiful and wonderful in their own unique way.

When I look at my kids,  I only see them and not their diagnosis. That doesn’t mean I don’t see or struggle with the Autism or the resulting behaviors. While Autism does affect their lives in profoundly different ways, they are not defined by this disorder. What I mean by that is that my kids are my babies first and foremost. Their behavioral issues, while often times problematic, doesn’t change who they are to me or my wife.  

We have built our lives around their needs and that’s not easily accomplished. I’m sure many of you out there understand what I mean by this. Most of our day to day life is carefully planned out in order to minimize things like overstimulation and anxiety. Often times this requires my wife and I to give up many of the things that we personally need or want to do. While most of our family may not completely understand, they are very supportive. We also have some that should understand but instead cast judgment and have publicly ridiculed us. The very sad and ugly truth is that my family is not alone in receiving this kind of treatment from people, let alone family. Unfortunately, this is something quite common to special needs parenting in general, regardless of whether it’s Autism, Downs Syndrome or any other type of developmental, physical or emotional disorder.

What many people don’t seem to understand is how utterly exhausting special needs parenting is for many of us. It’s physically, emotionally, financially and mentally draining. Speaking to that point should not be taken as complaining or trying to elicit sympathy. I’m simply stating the reality of the situation. Let me qualify this a bit further for you. I want to make sure I’m very clear as to why I say it’s exhausting in so many ways.

Over the next 3 days my wife and I have 12 appointments (not including school) spread out between all three boys. Some appointments are local and some are out of town. Using this as an example, I’ll attempt to explain why it’s so exhausting. Please keep in mind that this is just one example and may or may not apply to everyone. Also be aware that each and every special needs family has their own unique set of challenges as well.

Special needs parenting is physically draining because it’s non-stop….all the time..with few if any breaks. The kids are very easily reactive to just about anything. These reactions are often in the form of aggression or melt downs. Now imagine having to haul your kids to 12 different appointments in three days. Typical kids would struggle with that. How do you think kids with sensory, developmental or emotional issues would do? The fallout can last for days as well. Just because you arrive home at the end of a week filled with appointments doesn’t mean you’re in the clear. In fact, you likely haven’t even gotten started with the fallout.  …..Physically and mentally draining…..

You have to get and or keep the kids dressed, which many times is far from easy. 12 appointment requires alot of driving and alot of getting the kids in and out of the car, all while struggling to keep some of them dressed. It’s not always practical to pack lunches so you have to feed the kids along the way. Even if you skip eating yourself, it’s still costly not to mention the cost of gas. Next you have lots of time sitting in the waiting room simply waiting to be seen. Then of course, there’s the wait to actually see the doctor once you get into the room. While your in the waiting room and trying to keep the kids corralled and entertained, you see the judging eyes and looks of disapproval from other parents. They don’t even try to hide it. If you’re really lucky, someone will actually make a heartless comment, most likely under their breath because they don’t have the stones to say it to your face. When you actually do see the doctor, it’s not always good news. In fact sometimes it’s horrible news, however, you can’t let the kids know that something is wrong because you don’t want them to have to worry. Keep in mind this is just the first of four appointments for that day. ……Physically, emotionally and financially draining……

When everything is said and done for the week, you now have the fallout that is often times unavoidable after this much activity. The kids will be more prone to outbursts, both physical and emotional. They may not sleep well, which is really a struggle since they don’t always sleep well on a good day. By this time there are few words to describe just how completely exhausted you are. However, there is usually no one to step in and help or allow you to get some sleep. You’re on your own and even the thought of continuing on is overwhelming to say the very last. So the very last thing on your mind is volunteering at the school or church. It’s not that you don’t want to, it’s that you at the end of the day there is simply not enough resources to meet the ever growing demand. The reality of the situation is that you have to prioritize and if it comes down to already not having enough to give the kids, anything and everything, including sometimes friends and family,  gets dropped or at the very least….back burnered (and yes, I just made that word up).

To make matters even worse, you have the occasional person that decides to take it upon themselves to express their opinion and seemingly kick you while you’re down. It happens to my family and many others out there. I hear from people all the time seeking advice on how to deal with this type of situation. It’s really sad that after everything we as special needs parents go through, we are still faced with judgement and ridicule. It saddens me that people feel they have the right to do this to people or families that are already overwhelmed and possibly even struggling.

Speaking for myself and my family only (although I know many, many of you out there probably would agree), I don’t share our story to try to get people to feel sorry for me. In fact that is the farthest thing from the truth. This isn’t meant to get preferential treatment for anything either, including schooling issues. I certainly don’t use my kids diagnosis for personal gain, unless you consider raising awareness personal gain.

The reality is that because of the challenges my family faces we do need help and often times, way more then we actually get. I don’t feel entitled to anything but some compassion and understanding would be nice. I share our story in order to help people have a better understanding of what, at least,  my special needs family in going through. I want to raise awareness for Autism and special needs families across the board. My hope is that the more people understand the less families like mine will be judged. My dream is to help bridge the gap between the typical family and special needs family.

I know that it works because I hear from people all the time about they have taken what they have learned here and used it to better understand and support a special needs family in their life. I hear from other special needs parents as well, thanking me for sharing our story because it puts into words what they have been trying to say. There are always going to be the people who are just incapable or unwilling to show compassion or understanding. That’s just part and parcel to the whole special needs parenting bit. I simply choose to leave those people behind and move on.

I hope that this has provided at least some insight. I know that I can’t reach everyone but hopefully this will help at least some.

 

0 0 votes
Article Rating
Subscribe
Notify of
guest

This site uses Akismet to reduce spam. Learn how your comment data is processed.

14 Comments
most voted
newest oldest
Inline Feedbacks
View all comments
Amy Knox

I love that you share your story so openly warts and all! I just recently started following and already you have touched on many areas that I thought were my struggles alone. I have lots of people who love and support our family (autism and all) but as much as I know they care, empathize, sympathize, whatever…you just can't understand my personal struggles, fears, defeats, battles, exhaustion, triumphs and trials unless you too carry a screaming, tantruming, 60 lb child up the stairs to find out he's moved all of his bedroom furniture (by himself) and has taken a notion to paint his room tonight. (no I don't know why). It helps to connect with others that share the pain and also understand the saying no pain no gain. You and your family are an inspiration to me I am in awe of what you accomplish on a day to day, esp. considering your wife's condition. (I have a condition which drains my energy as well) In my opinion the respect of your peers…people like me …is so much more important than the inconsiderate, uninformed BITCH that wrote the status I read yesterday! My God bless and protect your precious family.

@TwinsMa

I'm right there with you. I'm just beginning this journey but I'm already seeing who is in my corner and who isn't. The sad part is that most of who is in my corner isn't family. I have a few who are but I've found more support on twitter than the majority of my family, exempting my mom and my brother.____As bad as I hate to admit, I'm already starting to cut ties. It's getting ridiculous. ____I'm sorry that someone was being mean to you and I swear if I was closer, I'd try to help as much as I could. Take care of you and your family and tell the rest to disappear if they don't support you.

Lost_and_Tired

Sharing your story helps people to better understand. Thank you for your support and know that you have mine as well. If you ever need anything please let me know. We have accumulated some knowledge and experience in this area and are happy to help in any way we can.

Thanks everyone. This particular post was attacking us on a personal level. You just have to roll with the punches…

Kristin Oberg Hubbard

New to your blog. Have an 8-year-old son with autism. Have 3 older, neurotypical kids, too. Most of my friends are childless and I think I just realized why ….. they don't judge like parents do. At least in my little world.

I'm sorry someone was so insensitive, particularly a family member. I had to call someone out in a waiting room yesterday for making fun of my son … I can't imagine having to deal with my family like that.

Well said. I chose who to have in my life. You can have people who bring you down or lift you up. I chose to remove the ones who brought me down. It’s not easy and I occasionally miss my family but I’ve got to do what’s best for myself and kids. I appreciate your blogs for their honesty.

Great blog. I admit that I don’t read all of your blogs because of things going on, but took the time to read this one and am glad that I did. Well said.

I agree! And I also really enjoyed reading your post today-keep up the honest, good work!!

Sounds like a slow day in blog land when someone needs to pick apart another blog…honestly why do that? You don’t force anyone to read yours, if they don’t like your input than don’t read it.

April Landers on Fac

Sounds like a slow day in blog land when someone needs to pick apart another blog…honestly why do that? You don't force anyone to read yours, if they don't like your input than don't read it.

Sounds like a slow day in blog land when someone needs to pick apart another blog…honestly why do that? You don’t force anyone to read yours, if they don’t like your input than don’t read it.

Dearest_Nikky

sadly it wasn't about the blog in general. It was a real life family memeber who quite honestly was not acting like someone in a family should. And that's coming from a mom of two nuero typical kids!

Lost_and_Tired

Thanks Nikky

Dearest_Nikky

😉 anytime!!

14
0
Would love your thoughts, please comment.x
()
x
%d bloggers like this: