Friday, October 18, 2013

Guest Poster Stacey from Hailey Bugs Closet

(Taya) Today we have Stacey from Hailey Bugs Closet telling us about her little Bug's story.  Stacey explains so well how SPD kids' needs can fluctuate from day to day.  Thank you Stacey for sharing your story!

Remember the weighted vest pattern is on sale for $5 at Craftsy through Monday!  The Sew-Along starts on Monday!  I hope we have a lot of participants and that together we can make a difference in many kids' lives!  Here is the link to the pattern:
Here's Stacey!

I wanted to thank Taya for having me as a guest this week on her blog and for bringing awareness to SPD. For those of you who don't know me, I am Stacey Mann, owner and designer over at Hailey Bugs Closet. I originally started my shop selling clothing I had made. I made clothing that was comfortable for my little Bug and what was comfortable for her. However, her needs change, sometimes weekly and what she likes today she says hurts or isnt comfy the next week. Trust me this is a common issue in our house! So, from there I started creating designs and patterns that made HER feel good. People liked them and I basically went from selling custom clothing, to selling patterns so other mommas could make boutique clothes for their little ones. Enough about me though, I wanted to share with you my journey with Bug and how she and I and our family cope with our ups and downs and just shed some insight into what her world is like.

Bug is lucky, her condition is not severe and pretty much at this point in her life our real main struggles are clothing and sometimes food. She is incredibly picky though so I think that is more our food issue as opposed to textures but that wasn't always the case. I noticed at only a few weeks old when I would nurse her she would often times gag on the milk. I thought it's probably normal, I was a super producers and I bet I am making too much milk. I will admit, I tried to nurse my oldest and she and I just were not having a good go at it and I used formula. Yep, there I said it, please don't shun me, she really is a bright girl about to graduate from high school early and makes Honors. So, since I bottle fed previously I had no idea gagging on milk and puking it up wasn't normal. That is until my sister in law had my nephew 3 weeks later. We were sitting one afternoon chatting and nursing and Bug gagged liked she often did and I asked my sil how often my nephew did it. I was SHOCKED to hear that he NEVER did that. I mentioned it at the next pediatrician appt and she said what I thought, she figured Bug was gagging because there was just too much coming out at once. At 6 months though our insurance changed and the new doctor asked about her nursing and I told him and he said we need to watch for this. He mentioned there was a chance she may need a speech specialist as she got older.....NOPE, chatty Cathy can talk til the cows come home and started early too lol. But we did have an issue with baby food. She hated most of it. She gagged on anything too thick, she would puke if it was chunky and I was so worried about what I could feed her. It took a lot of trial and error but as she was able to finger feed things that could be sucked on and get real soggy were great. Noodles were a nightmare and instant gag fest every time. Squishy foods like bananas and avocados were faves, although she can't stand the slimy squishiness now at all! Over the years what feels funny or bothers her in regards to foods has changed although she is pretty hesitant to try new things. It doesn't help that she has a peanut/tree nut allergy too. She is most comfortable sticking to her basics and I have been able to work things like steak onto her plate and she loves it. Although she prefers chicken nuggets and frozen GoGurt. I initially started out making food just for her, but it got old FAST. Now she knows I will put the food we are eating on her plate and always make one thing she likes. If we are having something she just cant stand or is spicy I will make something for her BUT this isn't a nightly thing. I also always offer yogurt with her dinner so that if she just decides she isn't going to eat chicken tonight because it feels funny she has something in her tummy.

Another thing I noticed with Bug early on is that 1. she HAD to be swaddled, up until she was 7 months old or she would cry when she slept, and 2. when she nursed she had to grab, pinch and rub my bicep ALWAYS. To the point it was raw and it hurt when she did it. I was told to try and give her a blanket or a toy or something to rub but nothing worked. Its a soothing method she has used as many kids with sensory issues struggle with some level of anxiety. She will be turning 8 in a few days and still when she is having a rough day she will rub on my bicep and she instantly starts to feel better. Anxiety is something that runs high for her but is not disabling. She has a hard time with new things and she stresses out. An example is this year she is in a combo class and she is in 2nd grade. The idea of 3rd graders scared her. She cried for the 3 days leading up to the start of school. I told her if she got in there and hated it we could talk to the school. Her first day she was so nervous, but lo and behold she loves the class, has 3rd grade friends and is picking up some 3rd grade math along the way. We have chosen not to medicate her as her anxiety levels are not high regularly. It comes and goes depending on the situation.

Something I have noticed with her and chatting with moms of other little ones with SPD it seems like many of them are not good sleepers. Bug is one of these and she functions quite well on little sleep. She can stay up if I let her longer than I can. It takes her a long time to wind down to fall asleep and regardless of bedtime is always up between 6:30 am and 7. Even if she is up on New Years. She stopped napping at about 26 months as well and still wouldn't go to bed until 11. Even that was a struggle with her to get her to finally go to bed on her own in her own room....she has a lot of willpower!

Clothing is our BIGGEST issue and always has been. Certain clothing as a baby would make her cry. Just having a wet diaper set her off big time. I was SO thankful she was an early talker and was talking in full sentences at 15 was crazy. Of course I had my son after her and couldn't figure out why he could only say a handful of things at that age when she could tell me exactly what she wanted. I thought he was broken lol. Basically with Bug nothing heavy can be worn ever. Not even when sleeping so blankets are just kicked off. Pants are hated. That was all well and good while living in SE TX but not in Northern CA where we are now. She prefers leggings but not tight ones. OMG, finding the right ratio of tightness but not too loose can be a nightmare. They need to be semi fitted and a soft material. However, the tops she wears need to be longer and over sized but her short sleeved shirts cant be too long. I know a lot of children are the opposite and need more weight and that's why weighted vests and blankets are so important. What feels good today may not feel good next month either and you may need to play around until you find the right combo. She and I work together on what works best for her but also what is logical, like socks. She hates them. She will wear them with sneakers (that was a HUGE break through as all she used to wear were flip flops and Crocs) and she will remove them at home. Even in the winter she would rather have cold toes....but hey I am ok with that so long as when we are outside she is protecting her feet. Shoes are a struggle and I will buy her 1 pair of shoes that are pricier and more comfortable, she gets attached anyway and even when she chooses something else to wear it's usually only once or twice and she goes back to flip flops or her sneaks....right now we are wearing leopard printed Converse with everything.

I am lucky since Bug is older and has also falls into the category of "highly intelligent." However with that comes another can of worms as very intelligent people tend to be a little quirky, think Einstein and Bill Gates. We deal with some OCD stuff and a kid who is too smart and gets bored. Thankfully she loves to learn and read so she stays out of trouble. She just needs to be constantly challenged and why she LOVES her combo class so much now, she is able to learn things another grade is working on. I embrace all the little details about her though and she has helped me grow as both a mother and person. I try to be a little more patient now and realize that not everything has to be done perfectly and we all don't need to fit into the pretty little mold. I have discovered that Chucks really do look cute when paired with a floral peasant dress and when it makes her smile I smile too. I am thankful that we no longer have fights about wearing our undergarments and that together we can decide which things are most important and find a compromise, and what we can say to heck with it. Like riding a bike, I am not sure she will ever be off training wheels but oh well. On our tough mornings when she is stripping her leggings off in the car because they hurt even though she wore them the week before (yes true story) I have learned to laugh, have a little more coffee and tell her "fine, don't wear the pants, but you might get cold." and in the end, or in my case the next week she was wearing those pants to school and now they changed "in the washer" and feel good. Everything changes for her and I just try to roll with the punches and tag along for this journey she has taken me on and try to enjoy every moment with her.

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