Tips for the sensory hypersensitive types?

[momto2pandas]

Wow, thanks for all of the great advice! We will give it a try!

 

Ouff, I feel like I am reading about my daughter! After her very first PANDAS episode at 3.5, this was the only remaining symptom for the next 3 years before the next exacerbation. We had no clue. It is much better with extended antibiotic treatment - so exciting shopping with her now! Before this, socks, shoes, hair, noise, lights, shirts, jeans, stockings.... maddeniHowever, after a very brief episode (about 8 days) of sudden onset OCD - treated with higher levels of antibiotics & ERP - and the OCD was gone - and she is actually even better than before. But the sensory thing seems to stick just a little - suddenly all her shirts are wrong, etc.

 

With Meg, we have three distinct stages:

* OCD, Panic and Agoraphobia - nearly unbearable, needs extreme treatment with abx, along with tools to make it through the time that she is "PANDAS"

* Sudden onset OCD - this can effect clothes to a pretty extreme level - but more because of "contamination or just right OCD"

* Sensory issues - that seem to linger after medical treatment and are around at low levels almost all the time. We have done OT for this & developed our own language about it. Maybe we still need more medical treatment, but we still can't find an underlying cause that will get us IVIG - and for the time being she is 98% better & such a happy kid. Some times she asks "for help to habituate to my clothes". She loves this because sometimes she wants to wear a "really cool" shirt, and then is driven mad by the fact that she can't!

 

Meg is very clear about what is OCD and what is "a habituation issue". The 2 minute rule is our deal too - but we have a little routine that we do to get outselves there. Here is the extreme version of that plan (depending on the level of the issue, you can pull out parts of this, mostly the fun dancing, running about part):

 

I wrote this post for a family with a daugher - so please excuse the references to a girl!!!

 

• Plan on starting this plan on a weekend, so the stress level the first 2 days is at a minimum.

• On Friday night, have their daughter help them pick out clothes for the next day. If she wants to try them on, that would be wise. Once the decision is made, it is final. (check the weather on Saturday that Friday night!!!) No changing the next morning. Be sure they are clear about this the night before. I would strongly suggest that the child is NOT tired or hungry when they pick out clothes. I find 4 or 5 pm is a good time, after an afternoon snack. (We used to play musical chairs with her clothing & music every Sunday night – it was a fun way to pick out the weeks clothes – gave her some control, but kept a time limit on the decisions. We did if you landed on something, that was a choice for one day – once you landed on 5 pairs of pants, the rest of the pants were out. We looked the other way when she hopped on a different pair at the last second. Then we let her arrange them by day & put them in daily bins. We don’t do this anymore, but we do still pick out the night before, almost every day!)

• Be sure she goes to bed on time, Friday night.

• On Saturday morning, start the morning with an immediate protein & carb snack. We call this our miracle start . I’d recommend Kashi Crunch – it is mildly sweet, but has great healthy proteins & carbs in it. If they are more traditional, scrambled eggs with cheese & a piece of toast.

• NO TV! Be sure to discuss this the night before, if this is an important part of the morning. We do NOTHING in the morning except our routine, until Meg is dressed. Then if there is time, TV is fine (there is rarely time….) this is not negotiable. There is limited time in the morning, and if you are rushed, it is much harder to keep your cool if some illogical situation raises its ugly head!

• Now you are ready to get dressed. I’d suggest helping her for the first week. Before you get to this Saturday morning, discuss the idea of “habituation” – I find this is a fun “word of the week” for a 7 year old – it is fun to say in a sing song voice or to use an announcer voice: HAb-IT- U –A-TION!!! Essentially this means that when your clothes feel really icky right away, your body CAN get used to it. You can use examples – do you like your jeans when you are on the playground? Do you even notice them? Well, that’s because you have Habituated to them! So our job in the morning is to help your body Habituate to your clothes! You need to get agreement that when something does not feel right, that she’ll not rip it off, but will try to Habituate. Give her some control – if she tries the exercise & still hates it, let her rip it off & try again in 5 minutes. But don’t change the outfit. Ok, so use some common sense on Friday night – for the first few days, pick some favorite, comfortable clothes!!! Our favorites are Yoga pants (soft cotton), an undershirt, really comfy undies, and a t-shirt that is not too tight, especially under the arms or on the seams or around the wrists. We also tend to buy the socks that don’t have inside seams! Help her with sleeves – don’t let one get bunched up under a sweater at this stage, be sure she has the sleeves in her hands before pulling the sweater sleeves down! And watch the back of the shirt, try to help her smooth this down her back before it bunches up around her neck. Personally, we buy undershirts with no tags, so the shirt will feel better. These are pretty easy to find. Any tags that are scratchy or bunchy (thick) – I’d cut these out. We even have underwear with no tags – we LOVE the brand of Hanes, that I believe is called “the worlds’ most comfortable panties” – it’s a cotton/spandex blend – although she can now wear lots of other brands too.

• If something she puts on seems “wrong” to her & she starts to want to pull it off/get frustrated – try to stay calm yourself – maybe even go ultra calm (low quiet firm voice, don’t get stressed) – ask her to keep the article of clothing on while doing her Habituation exercise – you can vary this up as you wish – even make it different for each “fit” – the important thing is to make it fun & tied in to activities that your daughter thinks are fun – be excited and firm about this (“you can do it, kiddo!”). For Meg, this means Humor & Exercise. We have her do something like the following “Let’s do our relay race. Run down stairs as fast as you can, do 8 jumping jacks on the front porch, go into dad’s room & spank him on the back, run back upstairs, spin three times, jump up & down & give Mom a bear hug (I hug her tight too). Meg wants to be “timed” on everything, so I use my watch (or count) to say – “high five!!! You did it in 28 seconds!” Then I’ll say “great, ready to try your socks? (or whatever). For every article of clothing that she gets on (undies, socks, pants, etc) without needing a relay, give a high five – “yes, you did that – see, I knew we could be a great team!”. You have to find a relay that will distract her – really engage her attention. Maybe that is music, dancing, whatever. Physical is usually better & more distracting. You want at least 30 – 60 second activities so her body can get ready!

 

If this works, consider setting up a fun & achievable reward system for week one. I’d suggest taking her out to a fun dinner on Saturday if she meets the goal. Keep the first goal REALLY reasonable – you want her to make it & even go beyond. I’d suggest “if we have one pleasant morning this week, then we will all go to Chuckie Cheese on Saturday & play games together (or whatever)”. Keep your definition of pleasant really flexible. One small fit is not that big a deal if you currently can’t get her ready at all. Getting dressed in 60 minutes instead of 2 hours might mean a success for the first week. Stay calm & work though it. Really reinforce the positive “I know you threw your shoes out the door, but you tried again and did it – that’s great (I am being funny here )” - you may feel a little insincere here for a while, since you want it to just be normal – but once you see how hard she is trying, you’ll quickly start to believe that every step forward is a big deal worth celebrating, because it is getting you closer to your real goal. Keep the faith that this will improve a lot once she sees what she can do & starts feeling confident through practice. Remember that she is currently practicing the idea that she CANNOT do this – so it will take a while to build up her confidence in the new approach to the day. Week 2, you may want to set another goal – “we’ll all do Pizza on Friday night, if we have 2 calm mornings as a family” – I’d suggest NOT ever going to 5 perfect mornings as a goal (at least not that she knows about). Perfection is very intimidating at this age – having some room to make mistakes often take the pressure off the situation. I constantly remind my daughter that she is a kid & is just practicing now for how she will be when she grows up & is a mom herself. That she still has a lot of years to practice – and that every kid has to make mistakes in order to learn. We try to emphasize that this is her job – making mistakes so she can learn from them. Meg felt like she was the weird kid – and that put a lot of pressure on her. She is now very confident again, and doesn’t worry so much about making mistakes in this odd process.

 

I should really stress – that all this is dependent on 2 things – getting enough SLEEP & having some FOOD in her system. The lack of these 2 things don’t cause the stress – but they make it MUCH easier for it to arrive. And do everything you can, not to be rushed.

 

Whether it works or not – read The Sensational Child or The Out-of-Sync Child. Also, I TOTALLY agree with the "don't rush, we are fine" comment - that really helps - just taking the pressure off something that is already driving them mad, is so important. I used to be an "on-time" person.....