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.
HARTLEY STEINER lives in the Seattle area with her husband Jeff and their three sons: Gabriel, Nicholas and Matthew. After taking placement of her oldest son Gabriel in 2002, the adoption process was finalized at last in 2005 completing her family. Gabriel struggles with Sensory Processing Disorder, High Functioning Autism, Bipolar and Learning Disabilities. His adoption opened a new chapter in Hartley’s life leading her to become a dedicated advocate for all children with special needs. Hartley is the author of This is Gabriel Making Sense of School, a contributing writer at Grown In My Heart, and even squeezes in organizing a local support group for families with Autism near her home. Hartley also chronicles the never ending chaos that is her life on the blog Hartley’s Life With 3 Boys and started the SPD Blogger Network. When she isn’t writing, or dealing with a meltdown, she enjoys spending time in the company of other adults preferably with good food and even better wine. You can follow Hartley on Twitter: ParentingSPD.
This was sent by God and just what I needed to hear today! Thank you!!!
Wow I really needed this!! I know things will get better but we have been fighting this for almost 2years and I don’t know how much longer I can go on…or how long my daughter can go on…
It sounds like our family! We just got the SPD diagnosis, but had suspected that for quite some time. We’re trying to figure out how to go about changing what needs to be changed for our almost 5 year old and still allow the 2 younger ones to do their thing. We know we’ve just started the road toward “it gets better,” praying for the strength to make it, for everyone in our family.
Hartely!!! You have no idea how much I wish we were best friends!!!
Thank you for that! I am actually printing it out as we speak and putting it in my son’s binder at the very front. I am so tired of my family saying, “it gets better” when they have NO IDEA what I go through on a daily basis. So, coming from you, as it came from your friend, I believe you. Thanks!
It is insane how you just wrote this yesterday, and today, I have finally forced myself to begin figuring out how I am going to educate our son’s teachers about SPD, when he begins school for the first time in a week and a half. I am so hopeful that it will get better and that going from homeschool to public school will not be more of a harm than help. I have already seen some results, I am so glad that all really does come out great in the end! Great piece! Thank you!
Before I could reply, I had to wait until I stopped crying. Thank you. I needed that. When someone tells me “it will get better” or “this too shall pass”, I want to to scream “Yeah!? When!? How!?” And, in fact, do ask those questions–much more nicely than I’m feeling inside–at times. I often feel alone on an island. No one gets what a day entails, especially with three other little boys (one just 6 months old) that have needs of their own and a husband who travels just too damn much. How difficult everyday things are, like a trip to the grocery store when we run out of milk. Oh, and those people who give those looks! You just want to pick up the nearest item and send it flying at their head and scream: “You don’t get it! I can’t control it. HE can’t control it. It’s out of our hands.” In many ways I am lucky. We have a wonderful preschool who hasn’t kicked him out because he wasn’t potty trained at 3, or 4, or still at 5. I have found the elementary school (thanks in part to my hyper-volunteering) who is educating themselves and willing to help. Never underestimate the power of making copies or cutting out things at home gives you in a school. Yet, I do cry most nights because I just don’t know how I will get through another day. I do now believe, it will get better–some day.
Thank you
Drying my eyes too, and thankful that I am not alone in this challenging journey.
Wow, this sounds like my house. I have 2 kids with Sensory Processing Disorder and they are so different. My 9 year old is able to self regulate a little better now,but can still be very impulsive and unpredictable. My 7 year old is the queen of tantrums and even that has gotten a little better, but my days always need to be planned out so she knows what to expect and she doesn’t know what to do when she’s overstimulated. It’s nice to hear it will get better.
I too am crying and typing. My daughter, age 24, left an abusive husband and lives at home again. As a full-time college student, I offered to babysit Maddie whenever she needed me. We have recently found out she has SPD but our luck is that she is only two years old. I know it never gets “better” but we are looking forward to OT, speech pathology as well as family counseling. After raising two children, I recognized that Maddie’s actions were definitely not routine. Just cutting her nails, brushing her hair or even sitting still for more than 30 seconds become manic and difficult. Yes, many friends and family think she will “grow out of it.” When you mention SPD, their eyes glaze over and of course they have never heard of it. We are looking forward to finding a support group for parents to help my daughter cope and meet with others who also have long, difficult days. Play dates have been unsuccessful as Maddie is not interested in other children and often just walks right by them, even at the Little Gym. Thank you for your words of wisdom as they came on a day that we both needed them. I look forward to purchasing your book. With luck and hard work we can see the light at the end of the tunnel. A grateful Grandma
Thank you, thank you thank you! Your email was EXACTLY what I needed to read today. We’ve just begun our journey. and I am feeling really overwhelmed as my daughter only recently qualified for early intervention services for SPD. It has been quite a struggle for our family on many levels. To add to our frustration, I just got home from a meeting (battle) with the staff at my daughter’s (22 mos) daycare. I was basically told that if she isn’t developmentally ready to transition to the next group in 4 months, we’ll have to find alternative care. It was all I could do to hold myself together today.
Thanks again
Thank you to everyone who left a comment — I love knowing that we are all on the same journey, just on different parts! I wish you all speed between diagnosis and “It gets better”. You are all on your way — Hang in there!
Hartley
http://www.hartleysboys.com
PS. Emily? I thought we *are* best friends? No?
Wow, I really needed to hear this today. My DS started kindergarten this week and was sent to the principal’s office on day two for hitting. I had requested an I.E.P. before school started because my DS has really started escalating this summer even though we’ve been in therapy for over a year. The teacher and vice-principal had no idea what SPD was and tried to avoid the subject of an I.E.P by saying “SPD symptoms sound like typical 5-year-old behavior”. I couldn’t help myself, I started sobbing at the thought that I had put my son into a situation with 28 other kids and administrators who knew NOTHING about SPD. They finally took pity on me when they saw me crying and agreed that we would have a meeting with the school psychologist, vice-principal, teacher and others next week about a plan for my son. That evening, I literally wailed with frustration at the apathy in the public schools. Sometimes I feel like there is no one out there who understands or cares. So it’s nice to read that there is hope that this will improve if I keep doing what I know to be right.
I just happened upon this site and not sure where to begin with our 5 yr old…thanks for the encouraging news that this “issue” does get better with time…aprox at the age of 2 and has only progressed- our daughter just started with using furniture as a trampoline,acting hyperactive/fidgets,chews on some of the most ungawdly stuff like shes teething,couldnt tolerate any type of restraint (clothing,seat belts,socks,shoes etc)on her,now shes having outbursts as well as tantrums that she didnt have before as well as other actions that i didnt have with my 19 or 25 yr old as children (though i have been told sensory issues can be passed down and only seems to get worse with each child). Ive read books on sensory problems and spirited children i’ll assume this isnt one in the same? I finally broke down and confessed to her doctor were having problems with her (family members used to say it was because she heard alot of argueing her first few years,others wandered if it wasnt from a few bumps on her head when playing or her immunizations??)now the doctor wants her to go to a neurologist and behavior specialist…should she? Im trying desperately to NOT have to use any medications for her problem…..Where do I start? are there any local support groups in Brooksville Florida? Can this be “worked with” without meds? How should i discipline her? nothing seems to work as far as discipline on her shes very strong willed and very intelligent for 5(right now i just “redirect her in other ways when ever possible). Would very much like to hear from others with children having this problem….
Hartely!!! You have no idea how much I wish we were best friends!!!
Thank you for that! I am actually printing it out as we speak and putting it in my son’s binder at the very front. I am so tired of my family saying, “it gets better” when they have NO IDEA what I go through on a daily basis. So, coming from you, as it came from your friend, I believe you. Thanks!