A Family of Five
‘I think it’s terrible that you go places without Cooper all the time. I think you are awful, awful parents. And you are teaching your other children that Cooper doesn’t matter. Shame on you.’ -An excerpt of a recent email from a super fan.
Very little amazes me on this blogging journey anymore. Even an email like this one.
But what does amaze me is how people still don’t understand the agonizing decisions that special needs parents have to make every day.
And that even though we make the tough decisions, which are the right decisions, we still feel guilt.
My husband and I have three children. Three beautiful boys.
Cooper is 8. Sawyer is 6. And the baby is 5 months old.
Cooper loves trains and dancing. Sawyer loves hockey and playing outside. And my baby loves eating and laughing.
Cooper also happens to have autism and anxiety. A perfect combination that makes leaving our home hard for him.
Sawyer happens to be a social butterfly who loves going places and staying as active as possible.
They are the exact opposite.
Together, we make up a family of five.
A year or so ago, as Sawyer approached age 5, he started playing t-ball and hockey. He made friends. He started kindergarten. He developed hobbies.
In a sense, he developed a social life. A very active one.
He also learned there is a whole world outside the walls of our house.
Prior to that, honestly, we were always home. Why? Because Cooper needed to be home. Home was and is his safe and happy place.
So instead of splitting our family up, like so many special needs families are forced to do, we stayed home together.
We made our home the fun place. Or at least we tried.
But that all changed a year ago. Sawyer got to the age where being home all the time wasn’t fair to him. And as parents to two very different boys, we respect that.
So, we started splitting up. One went with Sawyer and one stayed home with Cooper. Often it was me who stayed home. I am his person. It just made sense.
But I immediately missed Sawyer. And I don’t mean just him as a person. I missed him hitting a baseball off the tee and him scoring a goal. I missed watching him slide down a waterslide and grab candy at a parade.
I missed everything. Yes, I watched it through SnapChat and through photos. But that wasn’t enough.
So, after agonizing about how to make this right for both of my sons, I decided it was time to make a change.
I threw everything I had into finding a personal care attendant to be with Cooper a few hours a week so I could watch my other son experience the world.
It took 6 months to find someone I could trust with my nonverbal, vulnerable, little boy. But I never gave up. I searched. I interviewed. And eventually found two women that have become part of our family. They love Cooper.
It’s been amazing. Life changing really.
One night a week we take Sawyer to do things outside of our home.
We go to restaurants, hockey games and Chucky Cheese. Sometimes we get his hair cut or go to the grocery store. It doesn’t really matter. The only goal is to get him out of the house.
And while I know I shouldn’t, I feel guilt. I miss Cooper. I miss the family we should be out in the community.
I feel sad. I feel guilty. I beat myself up over it.
And no one will ever be harder on me…then me.
I am a mother of three. Not two. We are a family of five. Not four.
And for the longest time I refused to even take pictures of us out doing fun things. Even though I knew Cooper would never have fun doing them. That he was happier at home.
Then one day it hit me. Even though I was out, I was missing Sawyer’s life by being sad. So I started taking the photos. I collected the memories.
And, it’s working. It’s working for us. For Sawyer. And for Cooper.
He is so happy with his PCA. He practically pushes us out the door. And the other four of us get to overcome the isolation of never leaving the house.
And for the delightful woman that wrote this email…trust me when I say…we are working on it.
We are working on safety. Stopping. Listening. Walking. Calm body. Calm hands.
You name it. We are working on it. Every. Single. Day.
When we look to the future, our number one dream and goal is to get Cooper into the community.
He deserves to be there. And the world deserves to know him.
But he isn’t there yet. The keyword being yet.
No need to worry about us lady. Our family is just fine. Learning as we go I guess.
But I’ll tell you one thing we won’t do…and that’s feel one ounce of guilt over your mean email. Because you have no idea how hard we have worked to get where we are today.
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I for one am so happy that you have the chance to get out! Cooper is happier at home,why torture everyone….it’s not like you leave him home all the time!
A very wise man said to me “He who is persuaded against his will, is of the same opinion still” Some people are so set in their way of thinking, that nothing you say or do will convince them otherwise. They will hate…no matter what. You are doing a great job!
I too as a parent to two wonderful boys of opposites one the older neuro typical and the youngest autistic. I felt for a long time like I was missing out . I felt the guilt of not being present for the oldest cause I was drowning in trying to navigate this new to me world . It’s still hard to this day to leave the house with my youngest but I keep trying new adventures cause like with new things we are learning together. He shows me how to look at things different.
I for one am so happy that you have the chance to get out! Cooper is happier at home,why torture everyone….it’s not like you leave him home all the time!
I’ve followed your writing for many years now, we have our own beautiful boy on the spectrum who is now 15 and our life has been so different to those of my friends and family who have kids. Different worries, fears and hopes that all revolve around him, he has a sister who is two years older, nobody gets this that hasn’t lived it, and I want to just give you all a hug and say well done to you all! Keep sharing and you make a beautiful difference to so many people that you’ll never meet, who read your words and feel hope, feel love and feel community and can have a little laugh or share a tear, much love xxx lisa
I love this. What you ARE teaching your children is not that Cooper isn’t important but that his needs are important and that theirs are JUST as important!! I am guessing the same woman that wrote the email would be the one to chastise you if you brought Cooper along and he was unhappy and communicated that with his behavior. I have an older brother with autism (who is almost 60) and watched my parents agonize over this very situation for my whole childhood. He is now very happy to go anywhere with us <3 How fortunate for you that you found a solution with a PCA that Cooper likes and everyone can be happy!
Exactly.
I applaud you and your husband! You are doing great! I can’t even fathom how we would be handling this if we were in your shoes. Being a parent is the most rewarding thing, but along with that comes struggle and pain. When our kids hurt, we hurt. You’re doing good stuff momma, good stuff.
Kate & Jaime, I am so sorry you have to listen to these people who have no compassion…
As for me, I think your wonderful, kind, and loving parents.. Im happy to see you get out
with your family.. I loved seeing how excited you were that Cooper went to Target with
you, and it was a good day… Ive been following you for the last year and have learned so
much about autism from you.. I do not have anyone in my family with autism.. But now, Im
more aware of it…And when I see children or adults with disabilities, I don’t distance myself
from them. Their human and deserve respect just like you and I.. We’re all different…
Keep your heads high cuz you both are making a difference for Cooper and other families..
Have a Blessed weekend. We love you
help if need be..
Kate, it hearts my heart to know that there are people who haven’t walked a mile ( or even a step ) in your shoes and make negatives comments. I cannot even begin to imagine what you must feel. Go forth and be the parent that is best to parent your child and children. Forgive us simple minded folk for whatever reason we think we know best. You are an amazing mother.
Please don’t feel sad. Only feel sad for the judging, rude, misinformed nitwit who thinks her opinion matters. How wonderful it must be up on her high horse way above us mere mortals struggling to raise our families. How nice for her to be so perfect while she looks down her nose at us “awful parents”. All I can say is try not to feel so much guilt Kate. I say try because you will never be able to. It goes with the territory. Unless of course you are Ms. Perfect Knowitall.
I don’t know if you know the Vlog “Fathering Autism”, but their daughter who is 12 is non-verbal on the same spectrum as Cooper, and, they do take Abbey with them everywhere. They also have a son, who does not have Autism. It is a challenge for them, but they get through it. Perhaps you could reach out to them, as they seem to be a very happy family like yours.
Well said! I have spent 15 years juggling the intense needs of my son with special needs versus the typical milestones and desires of my other children. This road is never easy. Those that haven’t walked it- should try grace and just remain silent.
People can be so cruel. I’m so glad you are able to go out and have that time with Sawyer, he deserves that tme. He will remember these times and maybe one day his big brother will be able to join also.
I’m happy you and your family are getting out together. Our son has severe autism and epilepsy. We are still at that point where one of us stays with him while the other takes our daughter to her activities. We very rarely get to go as our family of four unless it’s to Wal-Mart, and that’s because he wants to go to look and see if they have new rubber ducks (one of his major collections). I hope that one day we can all go out regularly together. Once in a while, while he’s in school, the three of us go somewhere and eat lunch. And while we miss him very much, we know he would HATE the noisy restaurant, having to wait for food, and the stress of eating with so much activity around him.
So you guys keep doing what you’re doing! You are amazing parents with an amazing family.
Cooper is happiest home and you all get to do what you enjoy. It’s a win win. People stuck in one way thinking and the “shoulds” need to change. People have all different needs. Families are all unique. If you give a child what he needs, he will thrive. Stay strong you two!!
I’m so sorry Kate to hear of such negative comments! Obviously this person has no understanding what it means to have a child with special needs. My child has been diagnosed on the spectrum and is still being evaluated. Recently I was told that I’m in a “box” and that I’m too protective and keep my son in a “bubble “. No matter how much you explain how terrifying it is for your child to break away from you and run freely in a parking lot, or have an hysterical tantrum at the checkout some people just don’t get it. I’m so thankful for your honesty and I’m glad your able to enjoy time with Sawyer. What’s wrong with enjoying each child..one on one..and developing a special bond according to their needs? I see the posts of your one on one time with Cooper, it’s beautiful to see you enjoying time with Sawyer Harbor And Jamie now too. This life of special needs parenting is rocky enough without hateful comments as these! You keep doing as you do!!! Thank you again for sharing these precious moments!!
Kate,
Don’t give rude people like that a second of your time. It’s so easy to set back and say what people should or shouldn’t do. Nobody knows Cooper anymore then you and your hubby, you know what’s best for him, go with your instincts. If Coopers happy with this, we should all be happy. Bring a mommy, you have to divide your time between children so they all experience special times and I’m sure Sawyer is having fun too. Look at that big smile! You and hubby continue being the great parents you are, you’ve got a whole cheering squad behind you!!! ???
My son had crippling anxiety and we locked ourselves away. Everyone said to force him. To me it didn’t make any sense. It was like dangling someone with a fear of heights over a cliff. That will never eliminate their fear. It only makes it worse. It traumatizes them and reinforces the fear. I am so happy you have found a solution that allows you to be a part of Sawyers life outside of your home. It is important for all your boys to know they matter and mom will do things with them. I know some will judge, but if you know you hare doing the best you can, how can anybody judge that? I hope Cooper’s anxiety goes into remission. I hope that even if it is just a walk in a park on quiet day, he gets to a comfortable place outside the home. My son has been in remission for 2 years and it is so weird being normal for the first time in our lives. I hope your family can experience weird normalcy sometimes.
What an emotional journey and what an excellent result! Reading this post left me very emotional
Kate you and your family are amazing. You have such great insight and not taking negative replies to heart. I don’t have a special needs child but have learned so much from your videos regarding what you have gone through. I especially was grateful for your video regarding a child having a melt down in a public place and how I can help and show support. It is a joy to see and hear about the acvompolishments that Cooper has made.