It's Going to be OK

There is something to be said about meeting other special needs parents.

We have a few families we are close to in the area who have children with special needs and they are amazing. They 100% get it. They just GET IT. They understand the cost, stress, sleepless nights, isolation, fear, and anxiety, plus everything else that comes with parenting a child with special needs. If you think Matt and I rock at parenting, let me introduce you to some incredible people in our lives…there are many and they all put us to shame.

This leads me to two weeks ago when I got to meet someone very special…my husband’s boss, Rob.

 

I met Rob for dinner, with Matt, too. This was after a long and stressful afternoon with Brody at home. He was nutty that day (nutty = throwing dirt for no reason, requesting a zillion popsicles in an hour, constantly stripping, hiding his shoes, you know, the usual) and our babysitter was a welcome sight for sore eyes! So by the time I met up with the guys for dinner, I was emotionally spent from the day…but anyways….

So, Matt told me before that Rob had a daughter with special needs. As soon as we ordered, I asked him about his daughter and wanted to know everything about her diagnosis. My attention and my eyeballs were completely glued to this guy, who kinda looked like Santa Claus in a business suit.

Rob’s daughter Katie is mentally disabled, and 23 years old with an IQ of 60/mental age of 10. They have three biological daughters…two of them are in college, and one is getting married in a few weeks (one is at Baylor and the other is shopping around for medical schools…I immediately thought of Destin when he said this….Destin will be our scholar I think…anywho…). His daughter with special needs has a job, a boyfriend, and lives with them at home, and probably always will. And he is fine with that, so is she. 

They are very careful about who she “hangs out” with and she is terrible at managing money. She goes to summer camp every year at Camp Barnabas and loves it. She is very happy and loves living at home with her sisters, mom and dad. She’s had a long road; high school was very tough but they got through it together as a family. They have two adopted daughters who are much younger and also have special needs (Down Syndrome).

Katie, unlike Brody, showed signs of her disability at birth. She was “floppy” meaning low muscle tone and missed all of her milestones. She did not walk until she was two and did not talk until she was four. She also could not gain weight as a newborn and they went to hell and back trying to figure out what was wrong. His wife was a neo-natal nurse at the time and she could not figure it out either.

Rob gave us Katie’s complete history…he explained all of the therapy she received, the IEP process, everything. He even talked to us about high school and puberty and all of that stuff that frankly scares the Be-Geezus about of me. There were moments, while he was sharing her story, where I could feel that lump in my throat like I was going to break down in my fajitas and start “ugly crying” in the restaurant.

You could feel the love he has for his precious daughter and how hard he had to fight to get her the help she needed. I have no idea how he managed to be so successful in his position, climbing up the corporate ladder so his wife could quit working, and manage to be such an amazing daddy to his girls.

If I were to walk you through every question I asked this man, while my husband sat back taking in my motor mouth, this blog post would be sixty pages long. So, I will spare you the specifics. He gave us some great suggestions for support groups, summer camps, IEP responses, and advice about raising children with special needs. But he went even deeper than parent-teacher conferences and information about speech therapists…he got into who Matt and I are as parents….

Brody is only seven years old and his daughter is 24. And you know what? Rob and his wife Donna? They are OK. He kept saying this over and over again….

“You know, Cassie, Brody is going to be ok…” he said, in between my relentless questions. I think he could tell I was tearing up over and over again during our conversation.

“But the real question here, Cassie, is…are you going to be ok?” He asked. And this coming from Santa Claus, is a hard question to answer.

“Oh yeah I’ll be fine.…” I said, drinking my 8^th cup of lemonade, wishing it had vodka in it.

“You matter. You are putting up with some serious shit that most people would be unable to cope with. You both are and you’re doing a great job. I mean think about what you do every.single.day. Not many parents could handle what you Matt handle day in and day out.”

He went on…  “Brody will do amazing things; he has an amazing future ahead. Because he has you both.”

By the end of the four hour conversation, I was hugging Rob goodnight. He kept saying the same phrase over and over as we parted ways…

“It’s going to be OK.”

The conversation with Rob didn’t cure Brody and it didn’t change the fact that when we got home, Brody up to his shenanigans again. It’s didn’t make Brody speak or change his stimming patterns. But it did put me at ease, and Matt, too. We met with someone who had been to hell and back, and came out on the other side to tell parents how to survive it.

It seems like every day we read about a parent of a special needs child killing their child or themselves because they cannot take it. They do not see any other way out, so they choose to do the unthinkable. Perhaps the cure for this abuse is education or even something simple like a support group.

If this new baby cooperates, our first support group meeting with MO-FEAT is June 26…wish us luck.