A friend of mine who used to be a therapist (before she quit to stay home with her son) told me the other day that she thought my DD might have some sensory integration issues. I've been looking through checklists and a LOT of it is exactly like my DD...not all of it, of course. I've got an appointment with our family doc in two weeks (earliest they could get me in :( ), and I'm trying to go ahead and find an OT before then because I REALLY need to do SOMETHING, but I just thought I'd put it out here and see if this sounds like the right track to the mamas here.
The biggest issue for us is sleep. My DD will turn three this month and has NEVER slept six hours straight. Usually she wakes every two to three hours to nurse. Lately the issues have been getting worse...last night and the night before she woke up around midnight and was up until five. Nothing I do helps. She breastfeeds at least every three hours round the clock normally, but after a couple hour of straight nursing in the middle of the night I just can't take it anymore. (I tried for a year to nightwean but recently gave up because it was making things progressively worse.) DH never sleeps with us anymore--he has ADD and can't go back to sleep if anything wakes him--so he's been sleeping in the guest room for about a year and a half. Sometimes I take a turn in there so I can get some sleep, but DD sleeps better (usually) with me than with him...not always though. I've read every book about sleep and after reading Sleepless in America I really felt that her issues have to do with transitions and sensitivity...I've tried making nests for her with body pillows, using heavy blankets (she kicks them off), different types of pajamas...I haven't found anything that helps but I'm certain the issues have to do with that. She doesn't snore or anything.
As a baby DD was very high needs. She was fine as long as she was in the sling and latched onto my boob, so I kept her like 24/7 for the first three months and pretty much all the time till about six months. Sometime around nine months I started being able to swaddle her, nurse her to sleep in bed, and then roll away, but I couldn't do that regularly till she was about a year old. When she was really little, under three months, she would SCREAM like a siren going off every time I unlatched her from the boob, no matter how deeply asleep she was. She never wanted to be upright in the sling; she always wanted to be in the ring sling in a cradle hold so she was totally encased in the sling and protected from the world. Funny to think of her as "high needs" because she was so easy then by comparison to now! It was always really hard to get her to sleep, though. She could never fall asleep before 11 pm (I could start bedtime as early as 5 pm, but she would lie there in the dark nursing for six hours and not fall asleep till 11) until she quit napping entirely at 18 months. Now she usually goes to bed around 8 or 8:30, and on a good night she'll wake every three hours to nurse but go right back to sleep until around 8:30 am. On a bad night she'll be awake all night.
She's always hated to be touched by other people. She freaks out if someone tousles her hair or rubs her back or anything like that--she hates for me to do that too a lot of the time. She hates to have her hair brushed, wash her hands, wash her face, or take a bath--I frequently just skip these activities because they're too much of a struggle. I can get her to do them but I have to make a lot of accomodations. Like I only wash her hair in the sink, and I give her a lollipop to distract her, and I have to be really careful not to get any water on her face or in her ears or she'll freak out.
She's always hit all her developmental milestones and has really advanced fine motor control. She has an incredible attention span and loves puzzles, blocks, sandpaper letters, things like that. She was in a Montessori school which she LOVED when she was in the toddler program two days a week, but I just pulled her out of the primary class because five days a week in a big class of 19 kids was way too overstimulating for her. The teacher didn't notice it and thought she was fine because she wasn't crying or anything, but DD always said she didn't want to go and I finally realized she was just shutting down during the day, so overstimulated that she couldn't function.
After talking to my friend and reading a little about SPD, I've realized that overstimulation has always been my top concern with DD and that I pretty much have organized our entire lives around trying not to overstimulate her. She kind of has to get out of the house every day, preferably outside, but she really can't go out more than once a day. We follow a really strict routine in the afternoon in an effort to help prepare her for sleep (in my mind "bedtime routine" starts around 1 in the afternoon, because everything from then on is an effort to set her up for bedtime, although it rarely works). When we're out and she's overwhelmed she always wants to nurse, and now I'm thinking that I kind of trained her brain to be able to tune out stimulii while nursing because that's what I always did when she was a baby...which is great but I'm trying to find other ways to do that too, it's getting old to whip my boob out every 45 minutes for an almost-three-year-old! Yesterday she got overwhelmed at the bookstore--I saw her face go into "shut down" mode--and she immediately came over to me and asked to nurse. Instead I picked her up, hugged her tight, carried her out, and put her in my Ergo. Told her to bury her face in my neck and close her eyes so she couldn't see anything and would feel safe. She did that and sure enough, after twenty minutes she was fine, wanted to get out and play again. I've also been using some tactile activities like play-doh and rice in the last couple of days and it has really worked to calm her down as well. Which makes me feel like I'm on the right track with sensory issues...
Another thing that worries me is how she interacts with other kids. She loves other kids, wants to play with them. She'll go close to them and sometimes touch them gently or try to interact with them. But then as soon as they touch her or come close to her, she freaks out and pushes them away. She can't stand it when they initiate touch, even if it's unintentional. She also cannot play independently for any length of time. She's okay when she's by herself, for maybe five or ten minutes at a time, but she comes back to me constantly wanting interaction and help. She loves challenging tasks but gets frustrated really quickly and wants help. I was comparing her this weekend (something I don't do often :) ) to two of my friend's kids, an 18 month old and a two year old, and I realized that both of these much younger kids can play independently for MUCH longer than DD can. And whenever she's around other kids, she has constant meltdowns where they touch her or something and she freaks out and hits or pushes them. I feel like all of my friends are at the point now where we can be at playgroup and their kids can just play together in the other room, whereas with DD I have to be constantly watching to stop her before she hits someone or freaks out. I really am not a helicopter parent but I feel like I have to be constantly on the alert to protect the other kids!
Oh, one other thing is that she overreacts when she falls down. I've been nannying this two year old and it totally blows my mind every time she trips and falls because she just gets right up, no problem, and keeps playing. Whereas DD FREAKS OUT. Screams, cries, runs to me, wants mama milk, keeps saying it hurts. Every time she falls or bumps into something or anything like that.
So...I'm thinking tactile defensiveness? Do you think I'm on the right track? It seems to me like this is pretty mild compared to other kids I've read, but maybe I'm just so used to DD that I think she's totally normal? :)
Whew! Sorry about the novel. I guess mostly I just need to vent. I'm so tired right now, we were up ALL night and I'm so sick of not sleeping. I really hope this IS the issue because it would be so awesome to have a reason for the sleep problems. Even if we still can't find anything that helps, at least I'll have an explanation.
Thanks for listening. Would love any ideas I could try in the meantime while I'm trying to get an appointment with an OT. I'm going to try a heavy blanket again but like I said she always kicks them off. Other ideas?
I just wanted to say that our DDs are about the same age, and we currently are waiting for our assessment from the local school district for SPD. Most of DD's symptoms make me think she's more toward sensory seeking with some defensiveness. And her sleep always has sucked!
Have you read Sensational Kids? I think all sorts of bells would go off for you if you read the chapter on defensiveness. I do have to say, though, that it is nice to make sense of a lot of my DD's quirks--even if she doesn't get a "diagnosis".
Also, I know little to nothing about your state, but here Early Intervention ages out at 3 but services (and evaluations) are available through the school district and are free.
I really like the book The Out of Sync Child. The first half is about sensory issues, the second half is ideas of things to do to help. It helped me figure out the right sensory diet for my DD.
In addition to the advice of PPs, I'd consider contacting the above practice for a referral to a good OT. Don't be alarmed by the focus on autism, all ASD kids have sensory issues, but non-ASD kids do as well. You might be able to address DDs issues on your own, but it's really helpful to get a great initial assessment.
It sounds like you really have your hands full that is for sure. You know I think you are on the right track with looking into SPD. The best way to know for sure is to have her evaluated. I have just started OT with a wonderful practice that specializes in SPD in Smyrna. http://www.pdc-atlanta.com Both of my boys (9 & 4 1/2) are seeing OTs there. The evaluation process is extremely informative. I felt such a relief knowing what was going on, and now can get them the help they so desperately need, especially my 9 year old. I put it off for so long with DS1! I kept telling myself that he would grow out of things. He would go through stretches of time when he seemed balanced and able to cope with the world around you, but this year it started affecting his school work, and I knew I had to do something.
I went straight to the OT practice, as in earlier conversations with my Pediatrician they eventually referred my to see a Developmental Pediatrician, but I knew that this was not the right evaluation for my two.
Good luck! I hope you find the answers that will help your family have a happier life!
I think that a more comprehensive evaluation can be a good thing as it covers sensory issues as well and it doesn't preclude going to an OT. We first saw an OT for an evaluation (before ds' "Firebender" episode led us to address his ADHD first with a psychiatrist) and the developmental ped evaluation led us back there, primarily for ST (social issues) but OT as well. We received a confirmation of his ADHD diagnosis, an evaluation of the Asperger's question (at this point, maybe), and a referral for a CAPD evaluation (which no one had brought up before) which was flagged by a large disparity in his verbal and non-verbal IQ scores. Before the evaluation husband questioned going to the developmental ped after already seeing an OT, psychiatrist, and therapist, but saw the value afterwards.
your description sounds exactly like my dd1, now almost 6. I took us a while, but last fall we finally got her a comprehensive OT evaluation and started OT and it has made a huge difference...so many changes, but I think for me one of the big ones is she seems so much happier, she is so much more regulated and better able to cope with sensory input and it frees her up to enjoy life more and be less anxious. We are still working very hard and it is a day to day process (currently doing listening therapy 2X/day) but so worth it, and my only regret is not pursuing it sooner.
good luck & hugs to you
I would recommend the book The Out Of Sync Child to start with. It has a ton of good info.
Your DD definately sound like she has sensory issues. But she may also have something else going on. If you can I would try for a full spectrum evaluation with a team or specialist that deals in the autism spectrum. An OT is awesome & a great place to start! They should be able to point you towards a good place for further evaluations too.
((HUGS)) You are doing a great job. Getting your DD evaluated is a huge step & will hopefully help you a lot.
The two best books about this are: Sensational Kids and The Out of Sync Child. The Out of Sync Child is a good place to start and you can see if it resonates with you. If it does, then you can go for the more detailed (but more helpful for me) Sensational Kids.
It sounds to me like your dd does have issues with being hypersensitive to things -- touch, pain (that's why she freaks out when she falls down), sound/motion, etc. I would highly recommend an evaluation by an occupational therapist trained in sensory processing disorder. We got OT for our son at age 5, and it made a huge difference for him.
As for the playing by herself, that might just be temperament. It's very very common for 2 year olds not to be able to play by themselves for long. If she's an extrovert (and as she's interested in other kids, it sounds like she might be), she needs contact with a person to recharge. If you read threads around MDC (Toddler/Childhood Years, in particular), you'll find that many parents have kids who don't play well by themselves. It may or may not be related to her sensory issues. My sensory kid actually played beautifully all by himself as a toddler/preschooler. He got a lot more social AFTER OT and he could handle the interaction. My younger child (who's sensitive but not hypersensitive) needs a lot more social contact.
Have you looked at/tried the Wilbarger brushing protocol? That helps desensitize to tactile stimulation.
I started reading "Raising a Sensory Smart Child" after ds received his SID diagnosis. I don't know how it compares to the others mentioned though.
I agree with what everyone is saying. Sounds like sensory issues and all the books mentioned are great. I just wanted to say that be careful when you talk to your family doctor. Most doctors do not know anything about Sensory Processing Disorder and might just dismiss the idea. That is what happened to us. we did we did not seek out an OT to start therapy right away because our Dr said it was not necessary.
Hi and Welcome to MDC, Veronica. You may not realize that this board supports a mom and child's right to breastfeed as long as they both want and is extremely supportive of extended nursing into toddlerhood/childhood. You will find a great many of our moms nurse well past a year. If you want to know more about Mothering and MDC, you can check out our Web Statement of Purpose.
Hugs to you Mama. Its so hard trying to figure out what's going on but it does sound as though there are sensory issues. My LO has some of those similar symtom but his story in terms of diagnosis is still being written. Hope you get some answers soon.
Hi, I see that your post was written a while ago but I wanted to comment on how much this sounds like my DD at that age. DD is now six and has been in OT the past year which has helped quite a bit. One of the big challenges right now is self regulation and we are looking into therapy to help DD with coping skills. We were so focussed on getting her help for a speech delay that the SPD was overlooked until she was older. I would love to hear what others have to say about SPD and suggested therapies.