Talk to me about SPD

[crunchy_mommy]

I don't know if DS is just normal (but intense) or if his little quirks signal something more serious. A couple people on another thread I started (here) suggested I look into SPD so wondering if you all can talk to me about it...

DS is almost 18mos.

He is very high-needs. He has gone through 'separation anxiety' since the day he was born & he doesn't settle down once I'm out of sight, he just escalates. He has a high suck need and nurses several times an hour, though he can sometimes go longer stretches during the day if we really distract him. He wakes up frequently throughout the night and will ONLY nurse back to sleep (we're going through another bad phase & he's waking every 45-90mins but a few weeks ago he'd sleep for as long as 3-6 hours straight some nights, though the 6 hour end is rare).

He spit up all day long, massive amounts, from birth to about 6-9 months and now usually doesn't spit up unless he has a cold. He has always gagged or spit out his food and is getting better about swallowing most things (but still spits out grapes or oranges for example after he chews them a bit). He is always asking to eat but rarely takes more than a bite or two (though he loves fruit & tofu hot dogs right now & will sometimes eat more of those but it's really hit or miss).

He loves to be flipped upside down, tossed around, roll around on the ground with me, 'flying', running in my arms, jumping, etc. and those are almost sure-fire way to calm him. But he hates swings. He used to hate the car but doesn't mind it since we got a new car seat 6mos ago (though we still never drive more than 45mins because he hates long rides). However he's really not all that active, I'm not sure if that's because he can't/doesn't want to be or because he wants to stay near me & I'm not that active due to medical issues. For example, if we go to the playground, he wants to just sit & watch everyone. He will play a bit if I encourage him but mostly he prefers to be in my arms or sitting next to me, mostly watching the other kids or picking up rocks & digging in the sand. But he doesn't like to have dirty hands and is always asking for soap when we're outside, and wipes off any dirt on his or my pants.

He is pretty strong & most of his development was a bit ahead of schedule (pulled to standing at 5mos, taking steps at 7mos though he waited 'til he had it 'perfect' around 12mos to walk full-time, has 300+ spoken words & starting to say short phrases, can stand on one foot, brush his own teeth, spit in the sink, take deep breaths, climb everything, etc. -- basically good physical & verbal development, weight right on track for growth, good muscle tone, etc.)

He hates the vacuum & white noise from the radio but loves white noise from the TV or a/c etc. He loves loves loves music. He has really good hearing (or maybe good attention?) & seems to pick up on things like airplanes flying overhead or trucks in the distance even when we're in the house. He responds very well to songs, humming, rhymes, etc. when he's upset (as long as he is not wanting to nurse, that is!) We took him to see fireworks & they were in the distance (so, not loud) but he was TERRIFIED of the sight of them. He's also scared of puppets or people in costumes but I'm guessing that's normal for toddlers...

I don't know if I'm even focusing on the right things here... He just seems to get very very upset soooo often all day long. And I can't always figure out why. It's like everything needs to be JUST RIGHT and he needs constant stimulation & interaction. I don't know, I feel like he's so strong & healthy & smart so how could there be something wrong with him? But at the same time he doesn't seem 'right' to me, he's just so extreme & intense... Any insight????

[marge234]

You can contact Early Intervention (or zero to three) in your state and ask for an evaluation. A number of people on this board have gotten help through EI. You're entitled to it--referral is not required. The intake people might discourage you because he's hitting milestones but it's my understanding you're entitled to have him assessed (for free) anyway. So you could push, you want to rule out sensory issues, and I'm pretty sure they'll do it.

Different states have different rules as far as how much of a delay there needs to be to qualify for services. So you might not qualify for free therapy, even if they find a sensory issue. But EI might be a way to get an assessment. If they tell you if there is an issue, even a slight one, you can decide how to proceed.

That said, our son's SPD was missed by EI at 6 months--they did have us to PT for gross motor delays--but at 10 months I got a second opinion from a developmental psychologist. She said he has sensory processing issues and that all the BFing troubles--painful for me, inefficient for him--we'd had we're consistent with what she saw at 10 months. We're getting OT and other therapies. So, based on just my own experience, I'd suggest contacting a developmental psychologist or OT who has a lot of experience with babies/toddlers.

Here's one place to look:
http://www.icdl.com/usprograms/clinicians/index.shtml

[crunchy_mommy]

Thanks! I guess before I contact EI I want to figure out if my suspicions are even remotely on track. I don't want to take EI services away from someone else who really needs it if I'm just totally off-base, you know? But I didn't know that they pretty much would have to assess him if I insisted...

[Eligracey]

I guess if you could get an eval easily enough why not do it? But most of that stuff sounds within the realm of normal to me. I have an 18 month old who also hates long car rides, loves being turned upside down and bounced, spits out oranges after he sucks out the juice, spits out apple peels after he's eaten the inside white part, wants the dirt wiped off his hands, is scared of fireworks and people in costumes, and likes me to be in the same room at all times. I read your other post, though, and it seems like what's really frustrating is his separation anxiety and poor sleep? I just don't think that sounds like SPD.

Do you work or have any childcare/babysitters? Maybe his separation anxiety might be helped by trying to gradually ease him into being comfortable being taken care of by a babysitter or friend who might swap childcare with you? Also, when your DH is home to give you a break, just leave the house. Take a walk, sit in your car and read a book, whatever. Or have your DH take your DS on a walk, to the park, whatever. I had the same problem--when DH was "watching" him my DS would climb the stairs and bang on the bedroom door calling for mama and wouldn't leave me alone. He would cry when I left him with his dad but I'd call 5 minutes after leaving and DH would always say he settled down and was happily playing. Even if he cries, it's NOT hurting him to leave him with his other parent. You're just helping him develop a relationship with his dad.

I'm also wondering if putting some limits on nursing, especially at night, might help you feel more sane. Like "OK, we can nurse, but only until I sing The Itsy Bitsy Spider twice and then we're done." Nightweaning saved my sanity. I'm guessing if he's nursing so much that might be why he's not eating much.

Your kid sounds pretty intense, but you don't need to feel responsible for keeping everything exactly right every second of every day. He may cry when you set limits on nursing, leave him with his dad or a babysitter, but you need to do what you need to do to stay sane.

[crunchy_mommy]

Originally Posted by Eligracey

I read your other post, though, and it seems like what's really frustrating is his separation anxiety and poor sleep? I just don't think that sounds like SPD.

This is what I'm looking for -- I don't want to go through a whole evaluation etc. if it doesn't even sound like SPD. I know he's incredibly intense & I just have a hard time pinpointing which things are 'normal', which are 'extreme but still technically normal' and which indicate a bigger problem. I did the SPD checklist & checked off more than half the items (actually after doing that list I'm pretty sure *I* have some auditory-language dysfunction) but I am guessing the list is not designed for toddlers & many of those things are 'normal' when they're still babies...

We don't do babysitters & I'm not willing to, the times we've tried with 2 close family members, it was a disaster -- he doesn't calm down after 5 or 10 minutes. But DH is trying to help & maybe I just need to change up how we handle 'daddy time'...

[CassnBeth]

Speaking as an adult with SPD -- I'd get your son evaluated. A kid with those markers who was cheerful, slept well and played with other children would be the kind of kid who might not need evaluating but your son sounds like he is unhappy sometimes and life can be hard for him so I would be pushing to see if there is something that can be done to make things easier for him.

[LynnS6]

Originally Posted by CassnBeth

Speaking as an adult with SPD -- I'd get your son evaluated. A kid with those markers who was cheerful, slept well and played with other children would be the kind of kid who might not need evaluating but your son sounds like he is unhappy sometimes and life can be hard for him so I would be pushing to see if there is something that can be done to make things easier for him.

I agree.

The other thing is to look at why he doesn't sleep. Yes, lack of sleep can lead to a seriously unhappy child. But one of the signs of SPD is difficulty falling asleep/staying asleep.

SPD is a disorder of self regulation. Kids with SPD get wound up and cannot wind themselves down again. These are the things I see that point to SPD in your child: His inability to calm down when you're out of sight, his high need to suck, his gagging on food, his not being able to stand being dirty, his love of being flipped and spun, his supersensitive hearing, his fear of loud sounds.

He also sounds like he might have some reflux too. I'm about to take our dd in to have her evaluated for that. It's only now that she's six that she can articulate for me what's going on. But she too needed to nurse back to sleep and woke much more frequently. She wanted to eat frequently because it made her tummy feel better.

You said yourself he seems not quite 'right'. I will say without a doubt that Occupational Therapy was the best thing we could have done for our son. Ds and my dh both have SPD. Ds is sooo much more comfortable in his skin than dh now. Yes, dh learned to cope, but it took an enormous amount of his energy, and he has some aversions that he simply can't overcome. Most are 'harmless' -- he can't stand wool, he never goes without socks, he has to have auditory stimulation constantly (so he wears his mp3 player EVERYWHERE). But he also has strong eating aversion and eats no veggies and fruit only under duress. that's not good for his health. When we were talking about this one day, dd announced "He'll probably die before you, momma." She's right and that makes me sad. But he cannot overcome this aversion. If OT had been available to him when he was a child, I think he could have.