It Will Get Better






Before I ever got a diagnosis of any sort for my son Gabriel, I think everyone I knew had told me some version of the line, “It will get better”. I knew they all meant well, but I wasn’t dealing with your run-of-the-mill toddler tantrums with Gabe. Not even close. My son had meltdowns. Big, long, scary and excruciatingly loud, meltdowns. Gabe would cry for hours on end, for no apparent reason and crashed into walls for fun; this wasn’t typical development in my book, and I couldn’t understand why people were so quick to dismiss it with any of the old standbys (“He’s just a boy” or “He’ll grow out of it” or the non-committal, “It will get better”). How could people think that it would just get better? I wanted to believe them, I really wanted to, but I had lived with the ‘out of sync’ behavior for years, with no sign of it letting up, so I wasn’t convinced that my son would just magically ‘get better’ one day.

When Gabriel’s diagnosis came in at age 4 as Sensory Processing Disorder, I was so relieved that I finally knew what was going on, that I steamed forward – full speed – through OT and implementing a sensory diet at home and school without so much as taking a breath. If that was what my son needed then that was what I would do for him. After all, this is what would finally make things ‘get better’, right?

But you know what? It wasn’t easy and it didn’t just ‘get better’ as quickly as I was hoping. I was tired of being told by family, friends and therapists that things would ‘get better’. Did these people really understand what I went through every single day? Did they understand how upset my son was over the smallest things? How hard school was for him? How hard having play dates was? How difficult it appeared for him to enjoy the simplest pleasures of being a child? If things were really going to get better, could they PLEASE hurry?

Then one day, about a year after Gabriel’s diagnosis, I was just exhausted – the kind of exhausted that only a special needs mom can relate to. This particular day was not really all that different from the hundreds before it; Gabriel, at almost 5 years old, was having the umpteenth meltdown of the day over some perceived infraction on the part his two year old brother, Nick, who sat statue still watching him yell and throw things while I held my 3 month old tightly to my chest shushing and pacing with him because he hates loud noises. That was my breaking point. I needed things to ‘get better’ and I needed them to do so immediately.

I flashed on meeting a fellow SPD mom at the OT’s office the week before and decided I needed to talk to someone who understood my life in a very real way and could provide testimony that the elusive ‘it gets better’ truly existed.

I riffled through my purse in the garage to find her name and phone number scribbled on the back of a deposit slip. She said I could call her any time. What did I have to lose?

I dialed the number and was beyond relieved when she answered the phone. We ended up talking for over an hour – OK, I did most of the talking and all of the crying, but it felt great. At the end of the conversation, she quieted her voice, and in a tone so genuine and true, calmly said, “Keep doing what you are doing; it gets better.” And I actually believed her.

I believed that if she had survived this journey of Sensory Processing Disorder that somehow, some way, I would too. That my life wouldn’t always be chaos and meltdowns, that somewhere in my future there would be a family meal that we all sat through (not to mention ate), that there would be fun family vacations and maybe even a day I didn’t plan down to the minute. I was optimistic.

As shocking as it is, she turned out to be right. Today Gabriel is 9 years old. He self regulates and self advocates at school, he pushes on the walls without being told, he willingly takes the trash out for heavy work, and often volunteers to take ‘quiet’ time when he is overwhelmed – both at home and at school. He has an arsenal of chew toys and fidgets to keep him focused and calm him when needed. And perhaps most impressive, Gabriel has generalized those skills and can choose to do virtually anything he wants – wear special clothing for special occasions, including ‘cleats’ for football and a tie for holidays. He can tolerate gel in his hair for ‘crazy hair day’ and wear makeup on his face for Halloween. He can attend a jump party without covering his ears and even takes his heavy blanket with him to the movie theater, ‘just in case’ he needs it. Trust me when I say that this is LEAPS and BOUNDS from where we were just a few short years ago.

So today, as many of you are reading this, and are probably living that same sense of crisis between diagnosis and “It gets better”, I want to assure you that your dedication to your child’s sensory diet, to their continued therapy appointments and to all of the millions of things you do every day to help teach your child to live in this often overwhelming sensory world of ours, will pay off, in spades.

Or to put it simply: It will get better.

H

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This was posted on the SPD Foundation's Blog last Wednesday -- if you don't check out the great posts there by all kinds of sensational parents, check it out!  Here's the link:  SPD Foundation Blog

Photo:  My darling boys all together and smiling.  The secret?  A great photographer who wasn't embarassed by my fart jokes while she snapped the photos. What?!  It worked.

13 comments:

Jaimee said...

Hartley...I needed this. I think reading this post for me is on par with what that desperate phonecall was for you. Thank you!

Anonymous said...

You are doing parents such an amazing service! It's true. Slowly, but surely it does get better, and sometimes it's so subtle it sneaks up on you.

I was right there with you with the unbelievable meltdowns and the screaming, terrified baby to protect. Except you weren't on the internet then, and I was a desperate wreck. I can remember getting on the computer once the kids were FINALLY asleep, and desperately searching for answers. There weren't many back then, and that was only five or six years ago. The SPD Foundation website used to have a section called "success stories", and it was empty for the longest time (like years). On our last visit to the STAR center (3 years ago?), I remember asking them to fill it with something good or take it down because it was just depressing to keep finding it empty.

People need hope as they try and breathe after that monstrous tantrum or IEP meeting from heck, and you really do an amazing job of providing it here.

Thank you!

Cathy

Your stories are getting people through their days.

Patty O. said...

Wow, thank you! Even though things have gotten amazingly better for us over the years, it was still good to be reminded of that. It is almost impossible to see any results on a day-to-day basis; they happen too gradually, but they DO happen and if we can cling to that knowledge maybe we can make it through.

Thanks for the reminder of how far we have come and for the hope that things will continue to improve. I needed to hear that, especially at this crucial time when we are about to find out whether our daughter also has SPD, along with my son.

Wendy said...

Thank you, Hartley! I really needed to read this. We are in the middle between dx and "it will get better". The comments I get from people are very upsetting (though I know they mean well).

HUGS
Wendy

Mia @ Finding Balance said...

I still get upset when people tell me it will get better...though I try not to because I know they're just trying to help. But for us, the light is so far away it seems an impossibility at times. Our son seemingly has too many diagnosis with another looming on the bend. Juggling them all and using the best therapies for them all is overwhelming. BUT, this summer was better than last. I now can leave the room to make dinner (most times) without him attacking his siblings. So, I guess....it does get better. Thanks.

Hartley said...

@Jaimee -- I am so glad that this gave you some kind of hope! It truly does get better as our kids mature. Hang in there!

@Cathy -- Thanks for your kind words! I totally hear you about the success stories! I think the blog on the SPDF's website is helpful now -- as are the 35 blogs in the SPDBN that are sharing our stories of hope and help for all of the new SPD families out there. Thanks for commenting!

@Patty -- Having two kids with SPD is hard, but it is also eaiser the second time; at least you are already up to speed on what SPD is and how/where to get help. Let me know how it goes with her. :)

@Mia -- Mia, I hear you about the 'leaving the room'. As you know, Gabriel has MANY other challenges than just SPD, and some of them have truly gotten better with just time (maturity?) even if it is slowly...at some point, our kids will be able to use the tools we are teaching them. :)

Thanks all!
Hartley

Meg @ RaisingBipolar said...

I wrote a post about this a week or so ago but my son has, at 13, outgrown a lot of the sensory issues that plagued him as a younger child. And he had many. He still has sensitivities but they don't govern his life as some of them used to do. And he never had any therapies to help - he just simply outgrew them. So there is hope.

Megan said...

Yes, I know people can be well meaning, but sometimes things get a whole lot worse before they get better!!

Elizabeth Channel said...

If I had a dime for every time I've heard that phrase, and the "he'll grow out of it eventually" promise. Things do get better but in many cases, it is such a slow process that it is difficult for us to see unless we look back from the perspective of several years. I'm not exactly there yet but your post gives me hope that one day I will be!

Laurie Wallin said...

*tearful* That hit home. Recent ADHD/SPD dx for my 3rd daughter and I know that tired you mentioned. I'm with Jaimee... your post really blessed me!

Sarah said...

Hartley, that was wonderful. You are like that mom--the one whose number was written on the back of the deposit slip--for so many of us. And so I believe YOU when you say it will get better.

And for our son it has, a great deal (and I still pray for more improvement). Of course, this doesn't stop my mother-in-law from telling us that he's better because he "grew out of it," not because we've put in thousands of hours and tens of thousands of dollars and millions of tears into helping him.

mommabear said...

Thank you :) I am really hoping right now that someday I can look back and see this is true.

jessica said...

Wow Thank You! I really really needed this today! It seems we take one step forward then 2 steps back all the time. My son is only 2 so SPD + terrible two's is VERY difficult! Thanks for your wonderful post!