Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

Up from down

Lately the girls have been in a tough stage. Things had gotten a little easier for a while but like all children as soon as a nice smooth schedule settles upon them they feel the urge to shake everything up. So that past couple of months have been tough trying to keep up and adjust. We get one kid somewhat squared away and the other ends up upside down. Some days I feel like I spend 12 of my 18 waking hours putting out fires.

We have been doing a LOT of tweaking to their sensory diets. This is the unfortunate age where many of the sensory issues that have gone dormant will begin to show their heads. Abby is showing some very strong precursors to OCD. This is something that happens in many cases of RS but we had hoped to avoid it. She has to count certain things in certain ways. There are a few toys and objects of hers that cannot be put away by anyone but her and they have to be in a certain way. It is both sad and disheartening to watch. We knew it was possible but hoped that prayer, begging, therapy, support, etc would keep it at bay.

Grace seems to be moving in the direction of full blown SPD as a preschooler. With some kids who deal with sensory issues and SPD they can "outgrow" their significant needs. Sometimes the right kind of therapy early on will be enough of an intervention that later interventions are unnecessary. This does not seem to be the case. At least twice a day we have meltdowns to the point of her throwing up. On one hand I want to throttle her. After the hundredth of these I just want to completely blow up. On the other hand when you watch it you know that they have lost complete control. She gets this horribly sad look in her eyes because she knows that what she is doing is wrong but has lost all control of herself. It is awful.

And here I am in the middle of it. These two amazingly beautiful and perfect children but so much to deal with. It all falls on me. The therapy, the sensory diet, knowing what equipment we need to invest in, coordinating therapists and doctors and specialists. I had so hoped that as the girls got older and things got more settled this part of my life would fade somewhat. Instead it feels like the biggest part of my life. There is hardly time for housework, cooking, my job and getting anything done when you spend nine tenths of your day trying to avoid complete hysteria.

Hopefully we can find a good behaviorist who can start helping us figure what of Abby's symptoms to ignore and what to work on. And then hopefully that same behaviorist can start helping us find behavioral techniques to help teach Grace better coping mechanisms when she loses it. I am relying on my background to deal with it all now but it is shocking how much of it goes away when you are dealing with your own kids and your own life.

For now we'll just keep trying to keep it together.




About this blog

Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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