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Tactile Defensiveness/Extremely High Needs 2yo

post #1 of 14
Thread Starter 
Hi All:

I'm kind of starting to come to terms with some things that have gone on with my DD for a while. It seems as though as she's gotten far better at communicating and telling me what's going on, I see more and more of an issue developing and I'm not sure how to handle it.

DD has always been exceptionally high needs. She's 25 months now and still nursing every 20-30 minutes, more if I'm sitting. I recently nightweaned her because she would actually forgo sleep for nursing and would be plainly exhausted the next day, dark circles and all. She still, three months in to the process, screams and roots and grabs for a few minutes before I can settle her down. She wakes between five and seven times a night and gets about ten (broken) hours of sleep per night, plus about a two hour nap (also with TONS of nursing- we haven't been able to napwean ).

She's always been alert and sleep has always been an issue- always. She's very high needs in general, always needing to be carried, held, etc, which I have always obliged her. I SAH with her, so it's not a separation issue, it's just how she is. She cannot sleep alone, even for naps, so I sit with her and use my laptop. Due to the sleep issues and the high needs, I literally never have time to clean or anything unless my partner takes her for a bit, and that's iffy since she only wants me most of the time. My partner and I are in the process of separating too, so that support will be gone soon.

The high needs issues are one thing, but I've noticed some tactile defensiveness issues lately that concern me. I'll try to list them without making this too much longer!
  • FREAKS OUT about being sticky. We're talking total meltdown.
  • Can't handle taking medication, and vomits if even approached.
  • Refuses to eat foods due to stickiness/gumminess.
  • Refuses to wear clothes and strips them off as soon as they're put on.
  • Cannot handle most shoes, particularly with socks. Socks are a nightmare.
  • Obsesses about her "owies." Everything hurts, all the time.
  • Unexpected touches, regardless of how rough or gentle, are completely meltdown-worthy.
  • Our dog brushing against her back or head results in hysterics and assertions that she's hurt
  • Screams, cries, and generally freaks out about hair brushing and nail clipping (nail clipping is currently accomplished during naps, but inevitably results in short, bad quality nap)

This is coupled with some very, very severe constipation that's been going on for nearly six months. Last month, she didn't poop for THREE WEEKS. Upon doctor's orders, I now give her some kids' laxatives (thank god for the new dissolving strips) if she hasn't gone in two or three days. She's been evaluated for food allergies, etc, and everyone we've seen agrees that it's behavioral. At least once a day, she can be observed actively attempting NOT to poop. I'm not ashamed to say that we bribe her with ice cream now which seems to make a slight difference.

I realize that two year olds are difficult, but this doesn't feel right to me. I'm not sure what to do. We're a traditional foods family and I'm very careful about her nutrition. Luckily, she does enjoy a few foods from each food group, and a typical day will have her eating four servings of fruits/veggies and plenty of protein. She gets the occasional treat here and there (organic lollipop for instance) but I haven't noticed behavioral issues associated with the sugar.

I have a history of ADD/OCD and I'm gluten intolerant. When I avoid gluten, my symptoms recede for the most part. I've tried GF with her but it isn't effective- should I try GF/CF? She drinks raw milk, but does eat pasteurized cheese.

She is exposed to about an hour of TV a day because honestly, that's the ONLY way I can get anything done and prepare her lunch. And sometimes it really seems to me that she needs that escape from reality for a while. However, she still comes running and whining to me every few minutes, and I usually gently explain that sometimes mommies need a break and that I'll cuddle/nurse/whatever her in a little while, which satisfies her.

Any thoughts? Is there any benefit to having her evaluated, or WOULD they even evaluate her this young?

I'm sorry this is so long.
post #2 of 14
mama. I'm going through the evaluation process with my 2.5yo right now, and I'm finding out that it's a very long road. I found that going through EI didn't really get us anywhere since "sensory issues" doesn't really seem to be on their radar. They did offer to have him in a preschool setting at the special school for 1.5 hours a week, though, which we are considering right now because they would get him some occupational therapy there and it would give him some practice in a social setting (he is very anxious about strangers and other people in general).

We also went to our ped and got a referral to a developmental ped and the wait list is veeeerrrrrry long.

Definitely read The Out-of-Sync Child. It will help you pick out the things that are sensory related and get a "big picture" idea of your child's needs, and it has some suggestions that might help you to cope.

I can't help you a whole lot with tactile defensiveness, but we have similar sleep problems. We broke down and started giving him melatonin when we knew it was going to be a bad night, and for the most part, it has been a God send. What was normally a 1:30 fight to get him to sleep at 11 PM is now 30 min of peaceful breathing to get him to sleep at 8:30. It's not a cure-all, but you might think about it.

again.
post #3 of 14
Thread Starter 
Ah, maybe we'll try the melatonin, thank you! I'm wondering if sleep isn't a large part of the whole picture here- seems like the nights she gets less sleep, the more she has trouble with sensory issues.

I'm so sorry about the social issues, etc. A doesn't really have social problems, which is why I hadn't sought help before. If I thought she was on the autism spectrum, I would be far more concerned, oddly enough. But she seems actually more confident socially than many of her peers.

It's rough. I'm sorry you're going through it too, but it's nice to know that I'm not alone. Good to know about the evaluation too. My plan essentially is to try to soldier through until next Sept when she starts preschool and see how she does. I feel like after she's been in a preschool for a while, the teachers may be able to offer some perspective too. It's hard to get an unbiased view of your child when you're her mother.
post #4 of 14
Not sure from your user name or not if you are in Virginia, but just outside the Blue Ridge in Charlottesville is Kluge Children's Rehab., which is associated with UVa. My daughter was evaluated there at 10 months for sensory and feeding issues (very closely related). They're quite good. I think a formal evaluation and treatment could do you, and her, a lot of good. My LO goes to preschool too, and it was good to be able to inform her teachers about her sensory needs in advance, rather than waiting for their input. And OT makes all the difference with sensory issues, IMHO. Why wait another year?

Feel free to PM me if you're interested.
post #5 of 14
Quote:
Originally Posted by blueridgewoman View Post
Ah, maybe we'll try the melatonin, thank you! I'm wondering if sleep isn't a large part of the whole picture here- seems like the nights she gets less sleep, the more she has trouble with sensory issues.

I'm so sorry about the social issues, etc. A doesn't really have social problems, which is why I hadn't sought help before. If I thought she was on the autism spectrum, I would be far more concerned, oddly enough. But she seems actually more confident socially than many of her peers.

It's rough. I'm sorry you're going through it too, but it's nice to know that I'm not alone. Good to know about the evaluation too. My plan essentially is to try to soldier through until next Sept when she starts preschool and see how she does. I feel like after she's been in a preschool for a while, the teachers may be able to offer some perspective too. It's hard to get an unbiased view of your child when you're her mother.
Thanks, it's more like he just has social anxiety, but he seems to know how to interact with his peers. We're not really worried about him being on the spectrum.

I'm sorry you misunderstood, when I said that EI didn't really do much for us, I didn't mean that we weren't doing anything. My son NEEDS OT, it is just taking us a long time to go through the process of getting it. I agree with PP that it might be something to look into, before you have change in routine like jumping into preschool, especially if her teachers don't know what's going on, or are not versed in sensory disorders.

As for the melatonin, you can buy it at any GNC or the like, but others here might have other brands that they like better. We just give him the sub-lingual prep, .5mg, but only if it seems like it's going to be a bad night. I would say that happens about 3x a week, right now, but we're trying to get back to his no-nap schedule where he doesn't need it at all. On the nights that he does though, I am sooooooooo glad we have it.

Good luck to you, I have felt like this is craziness to navigate, and we don't have a lot of family support either. They all think he's just "being a boy" or "being a 2yo". There is an SPD support thread on this forum that you might check out.
post #6 of 14
Melatonin is very good for going to sleep for many kids but not as helpful for staying asleep. Try an extended release form and see if that gets you a good long chunk of time.

I do think an eval. for OT for sensory stuff would be helpful if you can do that. And there are lots of good books about sensory issues too. The PP mentioned The Out of Sync Child. There is also the Out of Sync Child has Fun. If you search one of the above on Amazon and get other suggestions and look at reviews you'll find other book ideas.
post #7 of 14
Wow, my oldest son was SO much like that as a toddler. Seriously, I could have written most of your post, minus the poop issues.

The main thing I wanted to address is your feeling that something is not right - take that seriously. I didn't know anything about sensory issues when my DS was that age, so good for you for looking into stuff now. The Out of Sync Child is good, and I also really like Sensational Kids. It's pretty easy to find from the library/Amazon/etc.

I'd look into getting an OT eval for sure. You might also like to check out the book Sleepless in America, since it sounds like you are having a lot of issues with sleep. We did use melatonin on & off too and I think it helped a bit. I highly doubt that a lack of sleep would explain ALL of the issues you are dealing with, but I bet it plays a role.

Good luck
post #8 of 14
Wow, Blueridewoman, I feel your pain. My daughter was the same way. I couldn't even say she nursed like a newborn because she nursed far more than a newborn.

It turned out nursing was very organizing for her and helped her immensely with her sensory issues. (Sucking provides a lot of sensory input and is very organizing.)

I would encourage you to get her evaluated for sensory issues. I had preemie twins who both had sensory issues. My son started therapy at 5 1/2 months and my daughter closer to 1 year. (It took 3 evaluations before the therapist recognized her difficulties. Long story.) Anyway, I followed the advice of a Spec. Ed. teacher who told me that children who start therapy very young and aggressively seem to do better than children who wait to start therapy. Delays can compound. For instance, sensory issues, such as tactile defensiveness, can mean that a child avoids activities that help develop fine motor skills, leading to deficits in that area.)

Personally, I have had better success with academic teaching hospitals, but I'm sure there are many exceptions and variances.

Good luck

BTW, sleep issues are very common with sensory issues.
post #9 of 14
Thread Starter 
Thank you all so much! I ended up using Valerian Super Calm on her the last two nights-- we hadn't tried that yet and I feel a bit safer with that than the melatonin since it's herbal and not hormonal, if that makes sense. It did reduce her falling asleep time from one and a half hours to half an hour both last night and the night before, and she missed two of her usual wakeup times, so I think it's making a difference. Supposedly, it's a bit culmulative and only gets more effective, so I'm hoping it makes a difference. She's seemed about the same these last few days, but I know it takes a few days of good sleep before *I* recover from bad sleep, so I'm hoping it gets better.

Purplecat, THANK YOU for your post. I really don't know much about SPD and hadn't considered long term implications of not having her evaluated. We're in Charlottesville VA, which is where UVA hospital is and we're really lucky to have some amazing medical care here. I'll speak with her ped this week and figure out what we can do.

3girlmom, yep, we're about 10 minutes away from Kluge Children's Hospital-- I think it's run by UVA? I've always felt really fortunate to have them around even though we've never had to use them, and I guess now we might. Thanks for the recommendation.

Um, does anyone know if Medicaid covers therapy like this? My partner and I just separated and while she's invested in providing financial support, etc, my personal finances are bleak. We'll make it work, but if it's covered, it sure would help.
post #10 of 14
Actually, you may be very fortunate to have Medicaid, given your proximity to a major teaching hospital.

I have Medicaid for my twins. What we have found is that basically no private practitioners will take it. That means we cannot go to Private Ped. Rehab Therapies. But the academic teaching hospitals have had NO issue with my children receiving Medicaid. My children have gone (and go) to Children's in Chicago for their therapies. I think there therapists are top-notch.

Equally beneficial is that Medicaid pays for unlimited visits without going through on-going pre-approval processes. For instance, if you have Blue Cross or another private insurer, teh overall number of therapy visits allowed per year might be capped at 20 or maybe 50, etc. But you cannot just go to therapy until you reach that cap. You get pre-approved for maybe 4 visits and then you have to get further approval for visits after that. A private insurer may decide that your child does not need therapy after 10 visits and refuse to pay for more even though both you and the practitioner think more is in order.

With Medicaid, we have went every week for almost 4 years without anyone blinking an eye. I've had several therapists rejoice when they learned my kids received Medicaid because then they could determine how long my child needed therapy (and my child actually receive it) without any hassle or negotiation with insurers.

If your partner is vested in assisting, swimming is super beneficial for kids with sensory issues. I like it, too, because it lets my kids get "therapy" while being with their peers and doing a very normative, fun thing.

Good luck! Keep us posted!
post #11 of 14
Thread Starter 
Funny you mention that-- Audrey's FAVORITE activity of the week is our Baby and Me class at our gym's warm water pool. When I get her squared away with a therapist and everything, maybe I might bring up the potential of some sort of swimming class or something. Hey, maybe that means I can write the gym off on my taxes.

Thanks for the thoughts on Medicaid- I'll call our contact tomorrow and work that through, but it sounds like this is actually GOOD news.... We've been happy with our coverage, but this would be a huge benefit if it can happen.

Thank you.
post #12 of 14
Sending you a PM with a therapist's name.
post #13 of 14
Your DD sounds a lot like my 2 boys (I have 1 with autism and 1 not autistic but very sensitive). Yes, they can be evaluated at that age and therapy can help significantly with many of the issues that you describe. You can request a free evaluation in your local school district. I strongly recommend going to the library for the book "The Out of Sync Child Has Fun" by Carol Kranowitz. It is packed with easy, messy, fun activities that you can do at home for free that will help your child right now. And the intro to the book is basically the short version of her other book that was recommended in post #2 above.
post #14 of 14
I could have written a similar post when dd was 2, things improved a lot once she was able to communicate better with speech. Reading OUt-of Sync child really helped me realize that my dd was high needs because she actually has a disorder and now we are taking steps to help her, OT, sensory diet, etc. Its a long road, for sure and takes ALOT of patience. Hang in there Mama, sounds like you are a very stable person for her.
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