Week 2

7 days with NOT ONE SINGLE INFRACTION!!!! Yeah!!! I seriously can't even believe it!! I lucked out because she was ok with having different pretzels than the other kids at Little Gym, and I was planning to provide snack for her preschool class, but my big girl ended up getting sick on Tuesday, and she was sooooo sick the rest of the week. :( It was seriously so horrible. I have never seen her like this. Her little brother had what we are assuming is the same virus last week, but he had 3 days of a fever and was done. She was 4-5 days, and her fever got REALLY high at times... she was almost to 106 at one point, at which I got her in the tub immediately, finally convinced her to take some ibuprofen, and thank God it came down. She had gagged on her medicine and thrown-up a couple of days before this, so it was a big struggle getting her to take any more medicine after that, but eventually I was able to convince her when she really needed it. If you could have seen this poor girl, oh my gosh, it was enough to make you cry. My sweet girl who barely sits still and bounces around all day, needs melatonin to go to sleep at night, etc... she would barely move for HOURS on end, and fell asleep on the couch during the day THREE different times over the course of the week. She was just so miserable. I can't tell you the relief I felt when she woke up on Sunday morning fever-free! I think the dr. was even starting to worry a little, as she called first thing on Sunday morning to check on her.

So anyway, things are back to normal around here. One thing I want to clarify regarding a previous post... I know I said this diet can be a giant pain in the ass... and it CAN be... events, parties, pretty much anywhere that someone else is having something she can't have. And yes, if I'm being completely honest, I kinda-sorta hope she doesn't have intolerances/allergies to gluten and casein, because it can be such a giant pain in the ass... but I also kinda-sorta hope it's that simple. I just don't think it is. I have seen ZERO withdrawal and ZERO changes in her behavior. Nothing. But... I know it can sometimes be a while. Doc wants us to give it a couple of months, so we will. I am VERY interested in seeing what test results come back as far as vitamin and mineral deficiencies, other food allergies, etc. I know several people who have seen great results with supplements and giving the body what it is lacking, or fixing what is off-balance, so I'm anxious to get to that part.

As far as the rest of the family, we are not exactly GFCF. For the most part, I would say we are, but we are not being strict with ourselves or our son. We don't eat anything in front of her that she can't have, I am trying to make all of our meals GFCF, but if my husband grabs take-out one night for us after the kids go to bed, or if our son is at his grandparents' house without our daughter, for instance, we are not forcing it. It's just becoming too hard, and what's important right now is that SHE is GFCF. That's the way that I'm looking at it right now. I'm afraid if it becomes too difficult that I will bail, and right now I can manage it this way, so I think that is what is in everyone's best interest. The goal is to see if GFCF works for our daughter, so that is what I'm focusing on. I'm figuring out ways to try to make her favorite things, and I have to say- it's not always working. The pizza I made yesterday from scratch... well, not totally from scratch, as I did use a brand of GFCF pizza crust mix... didn't turn out great. It was just ok. Our son LOVED it, or maybe he was just really hungry. My husband and I ate it... our daughter had one or two bites. The substitute products just don't taste as good, period. And that's fine for, and pretty easily tolerated by an adult, but a 4 year-old... not so much. I'm having better luck just giving her the yummy fruits and veggies that she's always loved.

I will say one thing about this experience so far:  any future party or event that we have, I will always try to provide common allergen-free options- i.e. simple fruit salad, tossed salad without dressing, etc. And for any larger future events, I will always ask about special dietary needs. This has just been such an eye-opener for me. My mother-in-law has life-threatening food allergies, and my sister-in-law is gluten-intolerant, so you would think I would have already been more sensitive to this. I've tried, but I haven't always been great at it. I'm pretty sure I will be better at it now. Just like anything else, you don't really understand until you are put in someone else's shoes.

SPD

Sensory Processing Disorder, from my understanding, along with constitutionally poor self-regulation across all domains, accounts for the majority of my daughter's struggles. I have so much to learn! It's truly a fascinating topic... I just wish my child was not one who had to struggle with this. Here are ten fundamental facts about SPD, according to the Sensory Processing Disorder Foundation:

• Sensory Processing Disorder is a complex disorder of the brain that affects developing children and adults.
• Parent surveys, clinical assessments, and laboratory protocols exist to identify children with SPD.
• At least one in twenty people in the general population may be affected by SPD.
• In children who are gifted and those with ADHD, Autism, and fragile X syndrome, the prevalence of SPD is much higher than in the general population.
• Studies have found a significant difference between the physiology of children with SPD and children who are typically developing.
• Studies have found a significant difference between the physiology of children with SPD and children with ADHD.
• Sensory Processing Disorder has unique sensory symptoms that are not explained by other known disorders.
• Heredity may be one cause of the disorder.
• Laboratory studies suggest that the sympathetic and parasympathetic nervous systems are not functioning typically in children with SPD.
• Preliminary research data support decades of anecdotal evidence that occupational therapy is an effective intervention for treating the symptoms of SPD.

– from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD ) p. 249-250 by Lucy Jane Miller, PhD, OTR

I also recently read a wonderful article that gives me lots of hope for more understanding to hopefully be entering our public schools. Though this is in Canada, maybe it's a good sign?? SPD is often associated with autism, which it DOES  very often accompany autism, but if you have SPD, you don't always have autism! One in twenty kids has some sort of sensory processing issue! I also saw this quote today:

"A lot of children really need 10 minutes of every hour on sensory-based activities to self-regulate and soothe."
~Dr. Stanley Greenspan via Fun and Function

We've been struggling with implementing some parts of the prescribed sensory diet (brushing, Therapeutic Listening)... it turns into a power struggle and it's pretty much impossible to force my daughter to allow me to do her brushing or listen to her therapeutic cd for the 30 mins. that she's supposed to. I'm going to try a reward system for this to hopefully get her to the point where she realizes how much better it makes her feel, so she actually wants to do it!

On another note, GFCF is going well this week! This is Day 3 of week 2, and so far... no dietary infractions in Week 2!! Woo hooo!!! Now, I was told she should be having withdrawal symptoms, and she's not. So I'll be honest... I'm wondering if she even has true allergies to gluten and/or casein?? Shouldn't she be having pretty bad withdrawal? I expected it after a day or two with ZERO infractions, so I'm not sure what to think. Maybe I'm just hoping... so we don't have to keep doing this? Although... I'm afraid of when we get the food allergies test back, to see what else we may need to restrict... ugh.

Thanks for keeping us in your thoughts and prayers!!

Week 1

Well, all in all, I think we did ok. For our first week, for an extremely strong-willed 4 year-old, for having activities where I am not there with her, for Mommy still having A LOT to learn, for traveling in the car, and for going to the lake with lots of goodies around... we actually did pretty darn well, if I do say so myself! (In MY mind, but I guess in actuality we kind of sucked). There was one infraction each on six of the seven days. Ugh. Three were totally my fault, because I thought McD's fries and hashbrowns were GFCF, but alas, it seems they're not. Note to self: check and double-check what you read online! There was some snack-sharing that occurred at her Little Gym summer camp, birthday cupcakes were brought in to school (had I been aware, I would have sent a special one for her), and a family member taking care of her one day forgot about the diet and gave her a little piece of string cheese. So this is going to take some getting used to, and is going to be an adjustment for everyone involved. I have to say, though... I'm pretty happy with the way the first week went, as it went better than I thought it would. I am luckier than most, because my daughter is already a really good eater- LOVES her fruits and veggies, salads, loves healthy snacks... totally accepted having hummus to dip her carrots into instead of ranch. I know moms who have done this, and all that their child would eat before starting the diet were chicken nuggets, mac and cheese, etc... so we certainly are in a much better position to start than many. That being said... it's still pretty freakin' hard! Honestly, home is really not an issue at all. She eats healthy, I try to cook healthy, she simply hasn't been offered anything she can't have, she just can't see it if it's even here, and around her, we all try to eat GFCF. She has asked for things, and has been told that we don't have it, etc. That she is accepting. What I know she will not accept is when she is told she CAN'T have something... so I'm staying away from that word as much as is humanly possible. I have to give a HUGE thank-you to her Gaga (my Momma) who took care of her all day on Friday while I snuggled with and tended to my sick little boy. She took the new diet very seriously, which I SO appreciated, even when I told her to not worry about it because I was so overwhelmed and unprepared that day. That was one of her best days!! Also to her Mimi, who tried to keep all of the snacks hidden, which was super-hard to do with a little cottage at the lake and having to feed lots of people! It means so much that the most important people in our lives are taking this so seriously.

What I have learned this week is that in one way, this is going to be easier than I thought, and in another, it's going to be harder than I thought for an active kid like mine, who is out of the house a lot without Mommy. Her doctor had suggested "keeping her home" for a couple of months to see if the diet would work for her, and I almost laughed out loud. For one, I don't know what I will do if I don't get little breaks. She suggested getting a babysitter to come to the house and I go out. Ha! What she doesn't get is that my daughter will go CRAZY! She gets stir-crazy even in our relatively spacious house. She needs LOTS of structured activity, and I do the best I can, but the fact is that I also have another child at home who needs different things, and needs me in different ways. It is impossible to give my daughter all that she needs, all on my own at home. So we're just going to have to do the best that we can. I imagine it will take us a few weeks to get into a little routine, and hopefully to have my daughter, and all of us, adjust to these changes.

So far, Week 2, Day 1 is going well! Let's hope for zero dietary infractions this week!! :)

Day 1

So we got through Day 1 of GFCF. I honestly didn't know if we would. Now, Mommy did have some creamer in her coffee (bad Mommy!) because almond milk tasted like crap in it and I didn't think to pick up any non-dairy at the store, and Daddy did have a piece of bread with his salad at lunch... but the kids did pretty well. If I'm being 100% honest, though... OMG I want to give up already.  Some things are just a bigger pain in the ass, and the last thing I need is a bigger pain in the ass. Truly, my daughter already eats pretty well and loves her fruits and veggies, so we can get away with it at home. We have yet to attempt having a "different" snack than the other kids at camp and school, so we shall find out today and tomorrow. My plan is to have them offer and encourage it, but not force it if there is a meltdown, because that will just cause more problems than it is worth with me not around to help. I know it's cheating, and I know it's making a dietary infraction and probably screwing the whole damn thing up, but I don't know a better way to handle it for now. Same with this weekend at the lake. All the kids my girl will play with all day will probably go get ice cream after dinner... how do I tell my sweet babe that she can't have any? She LOVES ice cream. We tried coconut milk ice cream last night and she wasn't thrilled. I HAVE to have a good substitute on-hand to replace these things with, and that just isn't gonna cut it. So is this all going to be worth it if there are infractions sometimes? I don't know.

And I'm worried about my 2 year-old son. He's a picky eater as it is... I just don't know how I'm going to do this with him. I'm not pushing it with him outside of the home or when Sissy isn't here... but when we're all home together, I can't very well give him his favorite waffles or mac and cheese and not give Sissy any, (if she wants it) you know? But I also can't restrict his diet so much that he won't eat!!!! He's a baby.  So... I'm worried. But we'll keep plugging away and taking it day by day... that's all we can do.

My daughter's perspective

I can often tell when my daughter has some sensory stuff going on, and is craving more sensory input. This afternoon she started running, jumping, crashing, just moving her body all around, fiercely... she was trying to sit at the table and eat and just kept jumping up in her chair and kicking her legs, etc. I asked her "What does your body feel like right now?" She said "It feels uncomfortable. It just feels really uncomfortable." It has been described to me by some as feeling like "restless body syndrome," if you have any experience with Restless Leg Syndrome. I found a really interesting article written by a young woman with PDD-NOS, who helps us to understand self-regulation, and what it feels like to struggle with it. Read it here. So incredibly interesting, and just gives me a little peek inside of what my daughter may be feeling sometimes.

Today I feel...

a myriad of emotions. That's a pretty normal day for us, where this mommy (and really, this whole family) feels a huge range of emotions. First, I have to say I am PROUD. So proud of my big girl for finally accomplishing a big milestone she's been so anxious to accomplish!! She is completely out of nite-nite diapers!!!! She's been daytime potty-trained for 2 years now, but nights were soooo hard for her. She kept wanting to try, especially within the last few months, but just could not wake up with a dry diaper. In fact, she would wake up pretty wet. Then completely out of the blue the other night, she woke up at 4 a.m. calling for me, which is a typical occurrence, but when I went in- she was ON THE POTTY and HER PULL-UP WAS DRY!!! She peed, went back to sleep, and when she awoke, HER PULL-UP WAS DRY AGAIN!!! She was just so proud, and I promised her if she had a second night of the same thing, that she could try panties the third night! So... success again the second night! Third night... panties. I was a little nervous, but SHE DID IT!! :) Last night was the second night in panties, fourth night overall of waking up dry!!!! YAY for my BIG GIRL!!! She wanted this so badly, as she kept telling me how uncomfortable her pull-up was to sleep in, for one... for two, she wanted so much to be like her cousin, (who is the same age and she is super-close with) who was able to be trained during nights and days at the same time.

I also feel quite BLESSED. Blessed to have two sweet, smart, silly, beautiful, loving children. Is there anything like hearing your four year-old say, "I just love you so much, Mommy"?? Or hearing your two-year old, still learning to talk, say "Mommy home. Daddy home. Sissy home. Happy." Just so, so sweet. I think my favorite part of watching a child grow is seeing and hearing the language development.

Then... the flip side. :) Your two year-old learning to talk... and really mastering the word "NO!" And a very defiant "NO!" with a foot stomp. Your two year-old picking up his sister's bad habits (ugh)... this is an especially difficult one. He's two... so he's not really "getting" time-outs or any attempts at discipline, so I'm struggling with how to handle this situation. And let's face it, his sister obviously has some very bad habits. So... this Mommy is having a pretty hard time right now. The words would be FRUSTRATED and OVERWHELMED.  Some days it truly feels like I'm barely keeping my head above water. I've been in survival mode for a long time now... probably since my son was born. Many days, I am just doing what I can to get us through the day. It's sad, but it's the truth. Many days, I feel more like a referee or a zookeeper than I do a mother. I know this is just a part of being a stay-at-home mommy to two young children, so I try to keep them busy the best I can. But the fact of the matter is, it is pretty hard for either of them to really do a whole lot independently while I try to get the everyday stuff done. For example, my daughter was busy coloring, which she enjoys, but within minutes had completely covered her body in markers. You would expect this from a two year-old, but unfortunately my four year-old has impulse-control issues that I am told are "off the charts..." and things like this happen frequently. So it's hard to not watch her every minute to keep things like this from happening. To say that everything else in life has taken a backseat to our children... our house, our marriage, our friends, our own interests and activities... would be the understatement of the year. But it is what it is, and they have to come first right now. I know (hope) it all will pass, and we will get through this tough spot in our lives, and we will live a new kind of normal that we will all adjust to... knowing that light is at the end of the tunnel really helps.

I'm also feeling GUILTY. For alot of reasons. Which is a whole other post that I will eventually finish. But I guess I wouldn't be a mommy if I didn't feel guilty, right??

I also want to say that I feel SUPPORTED. You are reading this because I shared it with you. And I shared it with you for one, more, or all of these reasons: You have been a good friend to me. You have shown love and compassion to my daughter. You have lifted me up when I needed it. You are important to me. So... thank you. :)

This is more than just bad behavior. This is more than just a child acting like a little brat. This is more than parents who don't discipline correctly or give in too much. This is more than just "a kid being a kid." A mother's instincts- from the age of 15 months- are rarely wrong. Her teachers were not wrong. The pediatrician, psychologists, therapist, (who has seen her weekly for 8 months now) and other mental health professionals... are not wrong. I wish it were as simple as some may think. Put your foot down. Don't give in. Show her who's boss. Be consistent. You're the parent. So easy to say when you don't live with it 24/7. So easy to do that with your kid when he/she may need discipline or parental intervention a few times a day- even once or twice an hour. So easy to see me and what I do/don't do and pass judgment.

I think what's hard for people to understand... even for me to understand sometimes, is that my daughter can have moments... minutes, hours, sometimes (although rarely) even whole days of normalcy... total and complete typical child behavior. She has the ability to focus, even hyper-focus, on things of great interest to her. It is at these times that the thought crosses one's mind... maybe nothing really is going on. But trust me... there is.

There are things that people say to parents that just don't help- they may even hurt. Please don't say: "I really don't think there's anything wrong," or "Maybe they were wrong," or "She can't have -insert diagnosis here- because -insert reason here." You never know how long a parent may have been dealing with this... how long it may have taken them to come to grips with the fact that something more might be going on... how long it may have taken them to pick up the phone and make that appt. for an evaluation... and how long it may have taken them to finally accept the answers they received, not to mention how long it may have taken them to actually share that with you. Please don't give parenting advice if you don't have a child with similar special needs, or if you don't work as a professional in dealing with children who have similar special needs. It doesn't help, and in fact can make me feel quite inadequate. I promise you, I am doing everything I can. I have already enlisted the help of several professionals to help me figure out what to do. It's slow-going, but it's a start. And what works for one child, your neuro-typical child, most likely will not work for my child. What you can and should say to someone who is parenting a child with special needs, and you want to help and be supportive, is: YOU ARE DOING A GREAT JOB. If you know that parent is doing everything out of love, and what they truly feel is best, even if it's not what you would do.... tell them they are doing GREAT. Sometimes that's all someone needs to hear to give them that little extra boost to get them through the day. :)