As a parent dealing with possibly 2 autistic children life tends to get me down. I hate that some things are out of my control. I’m a control freak but so much control has already been taken from us. I just like to feel in control of my life. The holidays tend to be the hardest time of the year for me. Here’s why:
So it’s Easter Sunday and I’m feeling pretty crappy. I want so much more for our kids. I’m still not feeling 100% yet and Lizze has been dealing with a migraine for about a week now. The kids are all excited because the Easter Bunny visited them last night.
The family is all going to my brother and sister in laws house for Easter dinner. Once again we won’t be in attendance because of everything. I think my dad is going to pick up the two youngest and take them with him to my brothers. Myself, Lizze and Gavin (who is already well beyond his sensory limit) are probably just going to hang out at home. We so desperately need the break. If we went we would simply be chasing the kids around an un-baby proofed house. Everyone says they are going to help but it will fall on us. At least at home we can contain them a bit.
The other thing is that going over to my younger brothers house will be like a kick in the gut. His new house is gorgeous and my house is falling apart around me. I have a small contracting company that we have run for about the last 10 years but I’m always to tired or we just don’t have the money to make the needed repairs. My wife and kids deserve so much better and that’s really hard for me to deal with. I realize our hands are tied most of the time by circumstances outside of our control but it doesn’t make the reality of it any easier to live with. It’s also painfully obvious how close everyone is with each other. I almost feel out of place anymore after all we are the only ones with kids (special needs kids at that) so we don’t go to the parties and concert together like they do. I’m quite envious of their relationships with each other.
I wish so desperately sometimes to just be a normal family and have normal problems. At 31, I’m the oldest of six kids and my parents are still married. No one lives more the 15 mins away. We never get visitors or even phone calls just to see how we’re doing. In the months I have been blogging I don’t know that anyone even reads it. I don’t feel close to anyone (outside my wife and kids) anymore.
The holidays really seem to bring out these feelings of inadequacy. I guess it’s because that’s really the only time we see everybody.
This is just how I feel today. Tomorrow will be another day. I have found that putting my feelings out there seems to lighten the load a bit.
I have to admit it, but we basically do without holidays in our family. Due to my son's severe sensory integration problems, he could not handle holidays without having a meltdown. So we have downscaled our holidays and keep pretty much to the same routine as every day, but WE know it is special. We'll have a special meal and open gifts, (if it is Christmas) while Steven watches tv down the other end of the house. I have often said I save tons of money on him for Christmas. We put a large bag of presents "from Santa" under the tree every year and Steven gets up on Sunday morning, walks right past the presents and goes to watch tv in the family room. Every year. Not ONCE has he ever even peeked in the bag of presents. We may not have very exciting holidays, but at least they are peaceful…
Lindsey Petersen http://5kidswdisabilities.wordpress.com
I read this. And as much as you or I can in this digital age I "know" you and you me ;). I'm just sayin!
I totally understand where you are coming from… I am fairly young at 39 years of age and sometimes I do get envious of my peers who are traveling, vacationing, going to picnic… A picnic with Max would be horrendous, we would NEVER get to sit down and do anything, we would constantly be running after him and pulling stuff out of his mouth.
But, then when I am home, and I look at Max, I just feel like, this is just what life as dealt me… Max feels loved, he gives love and his laughs and he smiles and seems to enjoy life… And that means alot.. They feel your love, and one thing about having a special needs child is that you appreciate every single positive thing they do so much more then a "normal child." We practically have a party when Max goes to the bathroom alone 🙂
It's a lonely life though… But you have your wife, so you guys are blessed to have each other and your relationship is probably stronger then most of peers.. Granted they may have a nice life on the outside, but you guys have a strong and sustaining love for each other and the kids.
There are times when I am happier just being at home with Max and doing stuff outside my house.. It beats chasing him around someone Else's house.. He seems to disintegrate when he is around a lot of people anyway.
Good luck and just know.. there are lots of folks just like you guys..You are not alone.
that sucks about not being able to 'connect' with your family. In my family I am the youngest but due to having the twins out of wedlock I am disowned by my family. So we bond with his parents. Which due to situations we are staying with til we can find a place. What makes it hard is the kids trying to keep them out of things. It's very hard. Everyone tries to be accommodating but then I realize they're his parents not my own. Which is hard to swallow. I totally get the wanting a normal life. There are times I would love nothing more than to have a normal house. But then I look at my kids and in a way I feel closer to them with them around even with their autism then if they were normal by this stage they would be doing the whole I don't want a kiss from you infront of my friends, not cool mom. So I am atleast glad they still accept kisses and hugs from us. But there are days when I get bummed (depressed), I try to muddle through it. Not much else you can do.
I agree. My side is the only family we have left. When I said normal life I guess I just meant like people coming over and getting to hang out. To be honest when I look at Gavin I see Gavin and not autism. I certainly empathize with you. I have to say that you guys are really a great example for the rest of us. You guys stick together and you make things work. My wife and I always say if we can make it through this we can make it through anything. There are times I find myself humbled and more often then not its meeting families like yours.
Thank you for the change of perspective. Good luck with everything 🙂