I am maddened. I am defeated.
We found out my middle child, Bean has SPD about six months ago. We started therapy about four months and have a great OT. She has walked me through everything and even gave me her cell phone for “emergencies”. We have a ton of activities to do at home and see her every other week. Bean has mild SPD but in my mind it’s so obvious. I haven’t told any family besides my sister and only a handful of friends. Everyone else just makes comments like “she’s a bruiser, she’s a tough cookie, wow she’s active!” or my favorite “doesn’t she ever get hurt?” I’ve been kind of suffering in silence since she was born. Again, my OT is my life saver.
Like many of you, I knew she was different. As a baby she cried all the time but when she wasn’t crying she was beaming like the happiest baby alive. She had two moods, MAD and HAPPY. She still has not slept through the night for more than three consecutive nights and she is three. When she was a baby she’d sleep in the crook of my arm face down and have to be moving. She was always very aggressive. She never seemed to get hurt. She “was too little” to do many simple things like go down the stairs or pick up a blanket. Now I know she’s just a sensory seeker. She’s clumsy and falls constantly. She loves to play with her food, touch everything, spin, hang upside down for hours, and lay on her brother. After our discovery of SPD and work with the OT I actually love her more. I see the wonderful Bean inside the one I normally saw. It used to be I was always on edge with her, always waiting for her to do something else destructive or hurtful. I was always mad at her. I never understood her. I hated myself for feeling that way about my child.
I am exhausted. I am overwhelmed. I was told recently by Bean’s OT she needs at LEAST 30 mins of heavy work twice a day. Not including the therapeutic listening. “Wow” was all I could tell her when she told me this. That’s a lot of time. She goes to school now two mornings a week besides outside activities. Now, I don’t know about everyone else, but it’s really hard to make my three year old do something that she doesn’t want to do. I’ve tried to make the therapy fun, a game, even rewarded with treats. It’s like I’m asking her to walk through coals (wait, she’d probably like that!). Plus, it’s really tough to do it with my 19 mo old and 4 year old watching or wanting to do it themselves. I feel overwhelmed having to do all of this on my own, keep a house (I’m a stay at home mom), and take care of my other children.
The problem is I see a difference when we have the time to do the appropriate activities. I’m finally getting to read her better and see what she needs when she needs it. The fact I recognize her need is frustrating (if I’m unable to give it to her) and wonderful (when I do it, she calms). Some days she needs some heavy work or pressure every 30 mins to hour. Some days she is good for hours. One day I held her upside down for 20 mins (no joke) straight. I hate the unpredictability, the uncertainty. “Does she need some deep pressure, or heavy lifting? Does she need something calming like her blanket and silly putty. Or is she just acting out because she is three!”. I get annoyed when her siblings are needing something when I’m trying to do work with her. I feel like I’m always yelling at someone for something silly because I’m stressed that I need to get this therapy in or the world will end.
I am tired. I am alone. Bean doesn’t sleep. Ok, she sleeps on average 9 1/2 hours in a 24 hr period. I know because I’ve been keeping a sleep journal off & on for 6 months. We’ve tried routine which is invaluable but when something messes with that we have hell to pay. We have tried melatonin and that helps knock her out but she still wakes up any time after 1am (lately it’s been 4am). Sometimes for an hour or two, sometimes for the day. Maybe she will take a nap, most likely not. Before melatonin it would be a screaming fit for two – three hours for her to fall asleep. She wants us to lay with her, there are monsters in her room, she is not tired – sound familiar? But this sleep thing isn’t unusual. This has been since she was born.
I have close friends who know about my situation and listen. But those same people try to make me feel better by minimizing my situation. “I must have a sensory kid too – she doesn’t like fleece pjs” or “I have the same thing, my daughter doesn’t like yogurt consistencies”. OK, the difference is you can put your kid in cotton pjs or not give your kid soft foods. If I don’t do this heavy work several times a day she explodes. We call it “raging”. Sad we have a name for it! Comments like this from my friends make me not want to talk about the struggles with them. As a newbie all I want to do is talk about it and make sense of it. I actually really enjoyed the post (sorry I can’t remember the name) about how moms spend every waking moment researching and beating this stuff to death. Their lives revolve around this. I felt like I was reading about me.
I’m optimistic. I’m lucky. At least what I have to keep thinking. It could be worse – it always could be worse. It’s getting better – really. I wouldn’t have wanted to read what I would have written two months ago. At that point I was grasping at straws, not doing therapy as much as needed and was just angry. Now we’re in a zone. I got a positive report from the psychologist and the OT. First time ever!! I almost cried. We are getting there! SO, thank you all for just being there and giving me somewhere I can feel support. This network has helped me in so many ways and I truly feel it has helped me be a better mom. It’s already getting better with the tools I’ve gotten from other people on the network.
Comments
Karen Sauder
“It used to be I was always on edge with her, always waiting for her to do something else destructive or hurtful.” describes my life with my son to a T! I too have other preschoolers and it’s so hard! Thankfully we have a wonderful OT which has been so helpful!
Forgotten
I understand completely! My Twin B is like this. He contantly goes and goes and goes. He head butts and tackles his siblings and jumps on everything and hangs off of me like a monkey. I’ve figured out including him in what I’m doing actually helps. Having him stir food or pick up stuff when I’m dusting or letting him push the couch up when I’m sweeping the floors. Having him carry toys to his room and move chairs for me. Letting him set the table at dinner time. He loves to be where I’m at so it keeps both of us a little calmer if I can give him something to do for me to work off that energy. When he needs pressure, I hug him tight and then have him hug my leg and then I’ll have him balance on my feet holding onto my legs as I’m carrying things back and forth in the kitchen. He and I both get a good workout!
Maybe finding ways to include your child in what you are already doing will help you? Ask your OT about ways to turn everyday activities into therapy.
I hope this helps.
Joyce S.
Thanks for the suggestions! They are great ways for me to think outside the box. She does love pleasing so having her be “mom’s helper” will be the selling point. Plus, it’s a benefit for her to be on task in a way. I’m finding free play is where we start to go down hill. The help is much apprecitated!
april
Yes! Ethan does this too! He constantly likes to wrestle and play physically so we’ve learned to set aside physical time for him and us to play. It has also helped Ethan to know what is an appropriate time for physical play. He still plays a little rough however with my niece (who’s seven) because he really enjoys that input. Trampoline was a lifesaver! So is a swing, he loves the motion. He’s still frightened of slides….
And we include Ethan as well. We have found that if we make most of the activities around our house hands on that it limits some of the excess need to seek input. Unless we are grease frying (which splatter concerns us) he helps us in all of our cooking endeavors. He actually has gotten pretty good with remembering recipes of regularly cooked items.
Tara
I sympathize completely with the issue of other people minimizing what we go through. My son has mild SPD in the sense that most people just think he’s a really hyper, active child. Which he is. But whatever my friends go through with their 2 year olds is multiplied by 10 with mine. Yes, many 2 year olds have trouble sitting still but mine actually cannot. Many 2 year olds are picky eaters but mine has 5 foods that he eats and he can’t tolerate other foods in his mouth. I realize that people who have not experienced SPD cannot really understand the difference but it makes me feel so alone in what I go through. As if no one really understands. Thank God I discovered this blog, it is such a relief to read stories of parents going through the same things I am.
april
You have just one hundred thousand percent mentioned exactly how we feel and what we’ve been through for the past three years. There’s the helpless feeling of “what exactly DOES my child need today?” With us, Ethan has limited verbal capabilities. He talks. Says sentences, has a massive vocabulary but doesn’t have the ability to vocalize things like “this hurts, this scares me, I’m hungry, I’m tired, my belly aches…” Knowing how typical children at age three are still limited in talking about these things…then adding on that my child doesn’t even know how to process them….it leaves us some days feeling so exhausted, useless,helpless and ineffective as parents.
We’ve been down the road of no sleep, sleep aids, routine….all to no avail. I was going to school for OVER full time and working, my husband was working full time (+). All during three years of limited sleep. Ethan would wake up sometimes up to six times a night. It got to the point that I now STILL have problems with my ability to perform cognitively. My memory is just gone. Its like four hours of sleep or less each night with the stress of everything has caused by brain to completely fry.
Does yours have the night terrors? Ethan wasn’t officially diagnosed with them. There was NO WAY we would be able to do a sleep study with him, but my niece was diagnosed with them and they run in my family. They were awful. If I think hard enough about those times, I get flashbacks, frightening flashbacks.
Ethan doesn’t feel most pain (or maybe feels it but doesn’t verbalize it??). Yet, he seeks tactile and oral input. He really likes to rub things across his face and he likes still to mouth things like string and hair.
I could go on and on…so I’ll stop now…but man….this is so our story, too!!
Joyce S.
Bean used to have night terrors when she was a little over a year. We started putting her to bed earlier and getting her on a more regular schedule and they seemed to go away. Now it’s once every several months.
Ethan sounds very similar to Bean. She doesn’t really feel pain either it seems. She can verbalize it but it doesn’t bother her. Now she reacts because she “knows” to react. After seeing how other kids cry when they fall etc. she will do the same with a fake cry.
Forgotten
My boys both are insensitive to pain most times but other times things will push them over the edge with just the slightest touch. It’s the weirdest thing.
The smaller of my twins has had night terrors. He wakes up screaming at the top of his lungs and scares the daylights out of me. His have slowed down since getting him in bed earlier, too. I think being able to get more rested sleep has helped a lot in that department.
Michelle Schmidt
I also felt like I was just reading about myself and our struggles. I do feel isolated because family and friends just don’t get it and all I want to do is talk about it. We are still waiting for insurance to send us to OT so I am still struggling with what to do when. I am thankful for the internet so I can read storied like this one and know that we are not alone. Thanks for the post and best wishes!
Joyce S.
Did you read the Out of Sync Child? Also, I just found out a local college offers pro bono clinics within their OT department. Just a couple of suggestions to get you through til you get that OT.
kim
i just want to say you are not alone. our M is our 4th kiddo of 5 and SPD is something we just started learning about and getting OT for him in August of this year. wow…what a whole new world. we thought we had been through it all, being that we have 3 kiddos older than M….ha!! God showed us there is always more to learn from our kiddos. and lots to educate our society about sensory needs of kiddos…..thanks for your post!!!
jill
I could’ve written this myself! I too have a 4 yr old and 16 month old and my middle who will be 3 in Feb has the SPD. We found out in Sept and get behavioral and OT once a week since Oct… I feel so alone. Even my husband thinks she’s like this cause I “give into her”. Ugh!
She’s such a sweetie when she wants to give hugs and kisses, then the devil comes out when she pushes, bites, throws things and yells a screeching NO!
Some days I’m just so exhausted I just want to give up…but then I remember she isn’t doing it on purpose (most things) and she can’t help it and I NEED to stay ontop of her… and I hope things get better. She had her tonsils/adenoids out in Oct and her BT said her SPD son had his out 6 months ago and he’s a changed boy! Here’s hoping that will help with my DD.
englishchick
I’m curious about having the tonsils removed. My son is 3 and barely says 5 words. Is it a proven thing that by removing them the SPF and speech maybe helped? I am debating consulting my pedi about it
Heather Finnegan
BIG HUGE CYBER HUGS!!!!!! It’s so hard to be a sensory momma! Mine is 6 now-an avoider but really not any easier than a seeker. My 3 year old is busy, but totally a seeker. What I found worked is to make a game that ALL can play. When I was brushing my 6 year old, I also brushed his little brother, and sometimes the kids I babysit too. I have had to lower my cleaning standards, hard to do when we have a cat and a dog (large golden retriever, and we used to have 3 cats). And talk about being obsessed with knowledge…I have a 30+ slide power point presentation that I have given at my son’s school and at a early childhood teacher’s conference. Do what you can, when you can. Make slow, realistic changes….and vent to us any time! We have all been there, and totally understand! Merry Christmas!
Sandra Ross
Hi Joyce,
My daughter has a son very much like your daughter. Others have addressed your sensory issues but I want to address the sleeping issues. Melatonin worked for us it was temporary and he has been sleeping great 99% of the time since with out it. I recently saw this and wondered wouldn’t it be great for a child with a sensory need to help them fall asleep? Do a search for the Nightwave as I don’t want to post a link on this blog. There is a video about how it works. Would love to hear your thoughts.
Sandra
http://www.nightwave.com/
Joyce S.
We actually ended up taking her to the sleep clinic at Children’s hospital. It’s a process but we’re going in the right direction. She does get melatonin every night but it just helps her fall asleep. It’s helpful none the less. I’ll look into your suggestion – thanks!
Sandra Ross
oops, I forgot to remove the link before I posted so sorry!
martianne
Every child is different, so I am almost reluctant to share the following in case it gives false hope: Reading your piece put me back a year and a half to two years ago and beyond. The no sleep. The crashing. The lack of coordination, yet high energy. The wondering and not understanding. The endless research once I did understand. Siblings needing attention and wanting to join in. The being on edge while trying to do everything I was supposed to (re heavy work and brushing, which we quickly realized did not work for our family – key word, family – not necessarily son. It was just too much for Hubby and I with work, home, homeschooling, younger kids.) So much of it… Then, things got quite ugly last spring with a period of impulsive and dangerous behaviors. I stepped up OT, brought in Behavior Mod, brought in a feeding specialist, has an new neuropsych evaletc. Some things have been working. Others not. A new dx of ADHD was made. Other possible dx’s have been mentioned by therapists: anxiety, OCD, ODD, Aspergers… It’s been an ever-changing road that I probably should have been documenting here or somewhere, but just could not process well enough to write about and had other things I wanted to share online elsewhere, almost escaping from the SPD thing mentally during my treasured post writing time (in between immersing myself in it reading others posts and researching.)
Anyway, now my son is six. It occurred to me the other day how much he has changed. I was observing his 18 mos old brother at a party one day and at my sister’s hair shop the next and noting how different he is to what my SPD kid was at 18 mos old. My youngest is typical, almost to the point of seeming complacent at times in comparison to how his brother was at his age. recognizing this difference makes me recall all the unique things about our eldest at his age and how much I dismissed or made excuses for, yet wondered about, until his was nearly four, when I finally sought label/seek help…
Now, two years later, I suddenly feel like I have a new child. It was NOT sudden. It just feels that way. where he used to be everywhere, doing everything, he is now apt to lay around while he does stuff or to choose building toys, drawing, etc. over the too-active pursuits he used to. I asked his current OT if this was a typical stage with kids like him. She said that, to be honest, she cannot answer about the change in him and that she rarely sees children with as low arousal levels as he has since parents whose kids have low arousal levels rarely seek OT; parents with active kids who are everywhere (like our son used to be) do.
This OT did not know our son when he was high energy; she met him when he was explosive and impulsive (though she rarely has actually witnessed these things). She sees sensory issues and has even ID’d one I’d never though of (visual tracking and processing), but she thinks his issues are more behavioral than anything.
Other folks have told me that behavior patterns can stem from compensation/coping methods relates to SPD. While still others question of there are additional or wrong dx’s to explore.
I have not been ready to dive into all this. I am simply riding the wave of calmer times while I can.
and to bring my rambling to a close, I just want to say reading your piece truly brought me back to the beginning and middle of my journey so far. I am wondering if in a couple years you will relate to this comment — finding a complete switch in your child’s actions and arousal level. I am also wondering if anyone else has experienced this.
Gosh, maybe this comment should be its own post.
Brooke Shumaker
I love hearing your story martianne. Thx for sharing b
Brooke Shumaker
My son is a seeker and is now 5.5. I will say for us, it has gotten a bit easier to give him input. I have lots if things he can just go do at home and it is less of a struggle than asking him to do things. He shovels heavy things outside – dirt, gravel, snow. We have a swing in his room that we csn change out forveings or a ladder. He also loves cooking and helping with some house/system work. Keep it up and find a sensory Mamma friend you can call to share stories
or call me 
That has really helped me a lot.
Joyce S.
Thanks to EVERYONE who commented and read my post. The support this network gives is immeasurable. I’m so lucky I found it when I did for advice, support, suggestions and laughs. Happy Holidays!