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Wish You Were Here

Wedding pew
By Cathy Jameson

Last week, I shared a post about our family’s summer vacation.   Despite the short business trip that took my husband away for a few days and that exhausting night that Ronan stayed wide awake until 3am, it was one of the best family vacations we’d ever had.  I got to sit by the sea, the kids reconnected with friends they’d made last year, and Ronan ended up enjoying himself while we were up north. 

I’m always glad that Ronan is able to adjust to the major changes that come with a road trip.  The long drive, the new scenery, the drastic changes to his routine - it’s encouraging that he can adapt.  It isn’t always an easy transition going from our home to staying temporarily at someone else’s house.  With Ronan being able to adapt last week, like he did on a previous vacation, it keeps me hopeful that we’ll continue to be able to go away as a family in the future. 

We should all be away again this weekend.  Our oldest niece is getting married.  But a back-to-back road trip just wasn’t in the cards.  Autism helped destroy that plan.  We could’ve certainly tried to get all 7 of us there, but a 12-hour car ride with Ronan on Friday plus a 12-hour return trip on Sunday didn’t make sense.  That, plus having to spend two nights in a hotel instead of in the comfort of a friend’s house (who absolutely understands and doesn’t mind children with autism staying up until 3am) was not possible. 

Ronan hasn’t stayed in a hotel in years.  The last time he did, things didn’t end well.  Not only did he stay awake till all hours of the night, he’d stayed up and laughed most of the night, too.  After the evening shenanigans, it was no shock that he’d be exhausted and miserable the next day.  Signing “no” to the proposed activities or “home” when we asked what he wanted to do were clear indicators that he was ready to beat feat far away from the fun the rest of us were trying to have.  Not wishing for a repeat of that weekend away, which was similar to two other trips that required hotel stays, we brainstormed different options for this weekend. 

After going back and forth with ideas for several weeks, we knew that our options were limited.  We discussed all of them and every single potential scenario we could think of.  With how formal this weekend would be – the church, the ceremony, the vows, the reception, the professional photos, we were left with one option – split up.  Since it was a niece on my husband’s side of the family getting married, we decided that he’d go to the wedding.  Flying was out of the question, so we planned for him to head south with some of the kids with him.  I’d stay home with Ronan and the others.  It wasn’t an easy decision to make, especially because some of us would be missing out on a monumental occasion, but it’s what our family had to do. 

It isn’t the first time the family’s had to split up.  We do that weekly for Sunday Mass.  We do that for Ronan’s siblings’ sports and school events all of the time.  But this weekend is one that we’d hoped that we could all be together to witness and to a bride and groom begin a new life together.  As much as I’d like to be there with husband and extended family to celebrate, it’s my turn to stay home. 

As my niece promises to have and to hold her husband from this day forward until death do they part, I’ll be tending to Ronan’s needs and his wants.  His needs are great, and his wants are simple.  He doesn’t want to sit in a church.  He doesn’t want to sit still and be quiet.  He doesn’t want to wear a starched shirt and tie.  He doesn’t want to stand and smile for photos either.  I’d love nothing more than for him to be able to do all of that and to also want to do all of that.  But Ronan prefers to be home.  That’s where he is most comfortable.  It’s where most of his need

s are quickly and loving met.  Sure, he can have fun elsewhere, and yes, he proves time and time again that he’s capable of participating in some outings and some formal events.  But lately, those moments are few and far between.  To ask him to be on his very best behavior so far from home after just coming back home could be too much. 

Just as my niece will make her vows, I, too, have made a promise.  Mine was made to Ronan and includes keeping him safe and healthy and happy.  I’d like for all of us to be elsewhere and together, but that promise will be carried out this weekend here at home.  Sacrifices aren’t always easy to make, but the ones that are made with Ronan’s best interest in mind and fulfilled only with love are the best kinds to make.   

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

Cherry Misra

Im really so happy to hear about the parents here who have such deep understanding of their autistic child, that they prioritize the child's needs. Putting an autistic child into uncomfortable clothes or a difficult situation may really seem like torture to the child. God bless all of you who are trying so hard!

Mary Maxwell

Hi Cathy, Denise, Grace, Elaine, KWS,

I am a non-autism family -- I think I understand a little (very little) bit of what you have described.

Right now, as a candidate for US Senate, I am being asked to offer my health-care plan. I am doing so, in 4 parts, at www.gumshoenews.com. Today's Part 2 is all about Jeff Bradstreet. I saw him speak at the 2013 and 2014 conferences in Chicago, but not his final one in 2015.

I am as angry as any of you at his death, maybe even more so since I have free time to dwell on it! Sending love,
Mary Maxwell. ("Call me Senator")

Denise

Hi Cathy,

After reading your post today and the one regarding your vacation I want to say how lucky you are to have such a great husband and father to your son. I would love to go ANYWHERE but have no one at all to even juggle that with. My child's dad decided autism was just holding him back and he had sacrificed enough (as if autism has some kind of expiration date where they don't need care any longer!) and wasn't going to waste his life any longer. He takes wonderful vacations, has a girlfriend, and refuses to help at all. I feel sorry for my child. He absolutely is aware he no longer cares nor will do anything with him. Narcissists are truly disgusting individuals.

When the going gets rough just remember how lucky you are your husband is willing to care as much as you do about your son.

Grace Green

I was very interested to read this article. Most of the members of my family for several generations are slightly autistic, and some don't even know it! However, they would mostly agree that we don't like formal social gatherings, and would rather go on a self-catering holiday, or just stay at home, especially as we get older and diets etc become more restricted. The thought of spending time in an airport would be my worst nightmare. So I have a lot of sympathy for your ASD children, Cathy all of you who have commented, and glad you've found what keeps them happy. On the other hand, congratulations to Ronan for managing another step forward.

ELAINE STARRS

I too understand sacrifices need to be made in supporting our kids on the spectrum. My 17 year old son was due to attend the first ever Prom at his special needs school and a lot of planning and cost of buying outfit suited to the event had taken place. On the evening prior to the prom my son's anxiety took over once more and cost him to have to be off school due to gut issues caused mainly in over-thinking of how he would get through this event and not sabotage all of it due to overwhelming anxiety to try and keep on track of expectations of others. His prom didn't take place for him personally but in missing it he satisfied himself in being home and using Facilitated Communication in typing how he felt in the time preceeding this event. He really did desire to go and wear his "finery" as he put it, but the event was expecting him to be able to put aside all his usual desire in wearing comfortable clothes and responding to usual routines and have to cooperate in extreme of unusual routine albeit meant for fun. We have to do whatever is best in these circumstances and my son instinctively knew he wasn't up to it, it's really addressing why we need to have to explain at all when every other day for our kids with autism is such a challenge and uphill battle why then would we expect this being put to one side just because "our" expectations signal this is a special event? I love your articles Cathy, love to you and yours x

Cathy Jameson

kws,

We've cut many an outing short, including a wedding several years ago. Most everyone understood why we bolted as quickly as we did, but it was so disheartening. The couple and their guests hoped we could push through what autism caused, but we could not. I'm better at planning and managing events we're invited to now. Even so, I really like your plan and that you've set up boundary conditions--do what you know your family can handle. It's perfect. Oh, and save me a spot at the beach! We LOVE it there.

xo, Cat

kws

We missed a wedding recently too. My family really doesn't understand what autism is, what causes it, or how to treat it. I've tried many times but they really don't get it.

For us, airplanes and hotels are out of the question. Friends' houses always have a lurking chemical or allergen that triggers severe allergies, multiple chemical sensitivities, and the resulting meltdown. I don't even try to explain foods to people and just ask that everything he eats comes from me. When a breakdown occurs its fair to say we don't have good time, there's a scene, and we leave early. After repeating many times over the years, we set boundary conditions to ensure safety.

Instead we grabbed our favorite toys, went to the beach, and had a great time. We were missed but that's the breaks in the age of autism. See you at the beach :-)

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