I'm starting to think that a good portion of Raquel's mood swings are food related. My girl, not being at all overweight for her age, absolutely LOVES to eat. I've been experimenting with giving her meals and snacks at different times throughout the day, and I've started to see a very familiar pattern. She definitely does not prefer to have a few big meals. She loves to graze throughout the day. And by using the word "graze", I'm not implying that she eats like a bird. Instead, she has an insatiable appetite - another possible side effect to the medication. It can either make you really hungry, or not hungry at all.
As far as snacks and meals went today, I gave them to her before I usually do. She was happy and content all morning until around 9am (very typical) when she wanted to leave and go do something. Once we came home from a few errands, she continued to be the happiest, most playful thing for the rest of the afternoon, even taking a 2 1/2 hour nap! Today I was able to do my workout with her in the room - something that NEVER happens. She hates when I do it - don't know if it's the loud Turbo music & sirens going off or her just knowing I'm going to be somewhat unavailable for awhile. But today she did great and was all smiles. At one point, when I asked her to get out of the way, she went up to the tv and acted like she was going to turn it off, and when I said, "No!", she cracked up. I've got to say that she was genuinely messing with me at that point, and I couldn't be happier about it.
Another change is that she is really turning into a "Daddy's Girl." The hubby has been putting in long hours and works the majority of the weekends so both girls (well, the 3 of us) are typically starved for his attention once he makes it home. Raquel now wants Dad to get her to sleep at night - not me - and when she wakes in the morning, runs to HIM instead of ME! What?!! So not liking that part but at the same time, the break is kind of nice and it gives me a chance to relax and have some alone time with Gabby.
I still haven't had the blood work done, but at this point, we see Dr. Mower in a week so figure I'll just do it then. Again, he didn't stress an urgency (and because I'll use any excuse to get out of anyone's blood work), and since I've been noticing her adjusting to the medications better (I think), I'm feeling a lot more optimistic these days than when I first called him voicing my concerns. But I am really looking forward to getting his input on Tuesday morning.
Tuesday, July 28, 2009
Monday, July 27, 2009
Appears To Be Adjusting To The Medication
Raquel has been really great these past few days. It seems as though she is finally adjusting to the Depakote. Her balance is improving and she's not nearly as clumsy. And she continues to babble more and more. Today, I swear she was singing along to Bob Marley...
One thing I've been doing differently is giving her the morning dose a couple hours later than I was typically giving it to her. This allows her to have more food in her stomach - breakfast plus a snack - and she hasn't been "crashing" as much, or as severe. It's really important that she has more solid food in her tummy before taking the medicine.
I've also been reading up on the side effects of Depakote, the main ones being constipation, headaches, dizziness, nausea, and drowsiness. Good times. So I've been trying to be a bit more proactive during her difficult moments. Does she have a headache? Is she tired or does she just need to lay down for a few minutes and rest? She'll now tell me - eventually - if she has a headache by either saying "yes" when I ask the question or she says "headache!" when I ask what is wrong. Both of the girls have been eating tons of watermelon, which is a great way to keep fluids in check, especially during the heatwave(s) we've been having out here.
Yesterday, we had a really great time at the beach. We haven't taken Raquel for many, many months because of it being a flipping nightmare the last time we took her. But Gabby has been begging and pleading so we finally agreed, with the deal being we'd only go for a short while. The waves were pretty big so Gabby couldn't go out as far as she'd like, but besides that drama, we had a lot of fun. Raquel absolutely LOVED the ocean this time. We jumped her over waves, and during the break between sets, she'd sit on the sand and just splash and splash around until the tide came back up. She was not even the slightest bit afraid, even when the water would go back down and make you feel a little wobbly on your feet.
After playing for over an hour, Mike took her to the shower to get her rinsed off, and once I changed her into some clean clothes, she became really content and mellow and it was at that point that I wished we would have come prepared to stay longer. But there's always next time.
Looking forward to the start of a positive week!
One thing I've been doing differently is giving her the morning dose a couple hours later than I was typically giving it to her. This allows her to have more food in her stomach - breakfast plus a snack - and she hasn't been "crashing" as much, or as severe. It's really important that she has more solid food in her tummy before taking the medicine.
I've also been reading up on the side effects of Depakote, the main ones being constipation, headaches, dizziness, nausea, and drowsiness. Good times. So I've been trying to be a bit more proactive during her difficult moments. Does she have a headache? Is she tired or does she just need to lay down for a few minutes and rest? She'll now tell me - eventually - if she has a headache by either saying "yes" when I ask the question or she says "headache!" when I ask what is wrong. Both of the girls have been eating tons of watermelon, which is a great way to keep fluids in check, especially during the heatwave(s) we've been having out here.
Yesterday, we had a really great time at the beach. We haven't taken Raquel for many, many months because of it being a flipping nightmare the last time we took her. But Gabby has been begging and pleading so we finally agreed, with the deal being we'd only go for a short while. The waves were pretty big so Gabby couldn't go out as far as she'd like, but besides that drama, we had a lot of fun. Raquel absolutely LOVED the ocean this time. We jumped her over waves, and during the break between sets, she'd sit on the sand and just splash and splash around until the tide came back up. She was not even the slightest bit afraid, even when the water would go back down and make you feel a little wobbly on your feet.
After playing for over an hour, Mike took her to the shower to get her rinsed off, and once I changed her into some clean clothes, she became really content and mellow and it was at that point that I wished we would have come prepared to stay longer. But there's always next time.
Looking forward to the start of a positive week!
Tuesday, July 21, 2009
Two Steps Forward, One Step Back
That's how I've been feeling these days. Even though I definitely feel that the medication is having a positive effect on Raquel, things can still be very challenging to say the least.
The day started out fine. She slept very well, had breakfast, and was just a happy little camper. We headed to the grocery store early to beat the heat, and she had a great time shopping with me, even playing with the balloons they were given by the checkout clerks. (SIDE NOTE: I hate those balloons! I'm convinced that the checkout people handing them out have no children of their own because who would wish that car ride home on anyone?). Anyway, on the way home, I rolled the windows down in the car so she could feel the wind in her face - she LOVES to feel her hair blowing, even with a loud blow dryer - and she was all smiles when we pulled up to the house.
I have to say that I have absolutely no idea what set her off. We came inside, I put on the television so she could watch Noggin while I carried in the groceries, like I always do, but I couldn't even make it to the door before she threw herself back and started hitting her head. I immediately thought she may be hungry, so grabbed some snacks and that made her even more upset. After about 30-minutes of being unable to calm her - and visualizing my groceries still sitting in the car - asked her if she wanted to go into the bath. She got up and ran to the bathroom door, and watched intently while I ran the water. But today, the water didn't work. She started to tantrum IN the bathtub, and I have to say that panic pretty much set in because I was very confident injury was just moments away. And getting a slippery 35+ pound girl having a tantrum out of a tub was a very hard thing to do.
Finally, I called for Gabby - who was playing in her room with a friend - to help me. I know it sounds sad that I had to call in a 7-year old for backup, but don't forget that Gabby witnessed over a year of in-home therapy, not to mention 6 months of the daily sessions, just like I did. She's wise beyond her age and I am fortunate that she doesn't get freaked out by it all and truly seems to understand the circumstance. Gabby layed down with Raquel on her bed, softly talking to her and rubbing her head, and Raquel slowly started to calm. I put on the music (music didn't work earlier either), and she began to calm even more and became much more manageable.
Gabby went back to playing with her friend, and I slowly began giving Raquel little snacks to see if she was ready to have lunch. Once she was fed and had some juice, she was almost back to her normal self again. But it took over 2 1/2 hours to get her there.
She was playing in her room when Mike came home for lunch, moments after she finally calmed down. He took one look at me, the house, groceries unpacked in the kitchen and asked what was going on. When I told him what happened - as he could hear Raquel laughing and playing in her room in the background - I knew he thought I was losing my mind. But Gabby backed my story. :-) Then he took the girls out for ice cream to give me a break.
Two steps forward...
Mike sent me this picture from Petco when they were out.
It may not seem like a big deal to you, but it reminded me of Coach, her Applied P.E. therapist. One of the biggest things I asked him to work on with Raquel was getting her comfortable walking outside of her own element. And look at her go! She cruised around the whole store - running into her Uncle Skip at one point - and just having a good ol' time. She also now walks up to the top of our cul-de-sac, which is a hill, then all the way back down. It's great exercise for her and helps strengthen her legs.
Overall, I'm noticing a lot more positive changes than negative ones. A lot of her behaviors at this point are age appropriate, but the lack of verbal communication continues to remain the hardest part. I will be resuming the PECS so she can at least tell me with pictures what she wants or needs, until she can be more vocal.
One step back...
This morning, Raquel had a tantrum that caught me off guard because it brought back so many memories of how things used to be. I'm surprised at how easy it is to forget, but the flashbacks were loud and clear.The day started out fine. She slept very well, had breakfast, and was just a happy little camper. We headed to the grocery store early to beat the heat, and she had a great time shopping with me, even playing with the balloons they were given by the checkout clerks. (SIDE NOTE: I hate those balloons! I'm convinced that the checkout people handing them out have no children of their own because who would wish that car ride home on anyone?). Anyway, on the way home, I rolled the windows down in the car so she could feel the wind in her face - she LOVES to feel her hair blowing, even with a loud blow dryer - and she was all smiles when we pulled up to the house.
I have to say that I have absolutely no idea what set her off. We came inside, I put on the television so she could watch Noggin while I carried in the groceries, like I always do, but I couldn't even make it to the door before she threw herself back and started hitting her head. I immediately thought she may be hungry, so grabbed some snacks and that made her even more upset. After about 30-minutes of being unable to calm her - and visualizing my groceries still sitting in the car - asked her if she wanted to go into the bath. She got up and ran to the bathroom door, and watched intently while I ran the water. But today, the water didn't work. She started to tantrum IN the bathtub, and I have to say that panic pretty much set in because I was very confident injury was just moments away. And getting a slippery 35+ pound girl having a tantrum out of a tub was a very hard thing to do.
Finally, I called for Gabby - who was playing in her room with a friend - to help me. I know it sounds sad that I had to call in a 7-year old for backup, but don't forget that Gabby witnessed over a year of in-home therapy, not to mention 6 months of the daily sessions, just like I did. She's wise beyond her age and I am fortunate that she doesn't get freaked out by it all and truly seems to understand the circumstance. Gabby layed down with Raquel on her bed, softly talking to her and rubbing her head, and Raquel slowly started to calm. I put on the music (music didn't work earlier either), and she began to calm even more and became much more manageable.
Gabby went back to playing with her friend, and I slowly began giving Raquel little snacks to see if she was ready to have lunch. Once she was fed and had some juice, she was almost back to her normal self again. But it took over 2 1/2 hours to get her there.
She was playing in her room when Mike came home for lunch, moments after she finally calmed down. He took one look at me, the house, groceries unpacked in the kitchen and asked what was going on. When I told him what happened - as he could hear Raquel laughing and playing in her room in the background - I knew he thought I was losing my mind. But Gabby backed my story. :-) Then he took the girls out for ice cream to give me a break.
Two steps forward...
Mike sent me this picture from Petco when they were out.
It may not seem like a big deal to you, but it reminded me of Coach, her Applied P.E. therapist. One of the biggest things I asked him to work on with Raquel was getting her comfortable walking outside of her own element. And look at her go! She cruised around the whole store - running into her Uncle Skip at one point - and just having a good ol' time. She also now walks up to the top of our cul-de-sac, which is a hill, then all the way back down. It's great exercise for her and helps strengthen her legs.
Overall, I'm noticing a lot more positive changes than negative ones. A lot of her behaviors at this point are age appropriate, but the lack of verbal communication continues to remain the hardest part. I will be resuming the PECS so she can at least tell me with pictures what she wants or needs, until she can be more vocal.
Monday, July 13, 2009
Staying Optimistic
I am very happy to report that Raquel has gone back to her somewhat normal sleeping patterns. Besides staying up a bit later, she's sleeping pretty sound again and has stopped giving me - knock on wood - my 3:30am wake up call.
She's still just really out of sorts and I don't know what to make of it all - except hearing that mother tell me that things can go backwards at any given time. Maybe that is what happened this last week or so. We did not do the bloodwork last Friday because it was such a rough morning, so I'm planning on taking her this Friday instead.
Raquel is still very much about routine, but it seems as though her routine is constantly changing, if that can even make sense to anyone but me. She no longer enjoys going on walks - perhaps it's just the stroller she's not liking anymore - but she can't tell me what the problem is. Halfway up the street she starts freaking out and we have to come home. Gabby thinks the sun in her eyes is bothering her, which is definitely a possibility with her sensory issues, and she doesn't seem to mind being pushed around the mall, so that's where we go sometimes before the stores open for our morning walk.
She does seem to be talking more - especially in the morning when she wakes up. Some of it I understand, some I don't. She may have developed her own language of sorts. She gets really animated and her pitch changes as well as her facial expressions. I definitely feel she is talking to me and trying to communicate, and I just answer her back, acknowledging the words like I was taught to do.
There are two things that have never changed: Raquel's love for (1) music, and (2) water. Both are secret weapons that snap her out of her tantrums almost immediately and I am constantly rotating between the two. The water can be a bit tricky at times because if she's not ready to get out, it can get pretty ugly. And you definitely cannot say, "water", "bath", "pool", or "wa-wa" without following through. Music works great - especially when we are out and about. I have her favorite songs on my cell phone that can be easily played in elevators, grocery stores, parks, etc. and make trips back to the car much more pleasant.
Actually, there is a third secret weapon - the Moose & Zee characters on Noggin. If she is playing in her room and Gabby is watching tv, she'll yell, "Raquel! It's Moose!" and Raqi comes running down the hall to watch. (NOTE: I have been unsuccessful at locating a Moose stuffed animal or blanket. If anyone knows where I can find one, please let me know. They are not sold on Noggin, as far as I can tell.)
I'm still in the process of getting Raquel's therapy resumed. Her pediatrician refused to sign the form stating therapy was a necessity, so now it goes to her neurologist. I'm sure he won't have an issue signing the form, especially with LKS in the picture. I thought I should have started with him in the first place but was obeying the chain of command I was given. Again, more valuable time wasted. When will I start listening to my gut?
I also spoke recently with Bev, my education consultant. She continues to be such a wealth of information. I don't know what I'd do without her input and guidance. And she makes herself so available to me - days, weekends, evenings. Anyone with a special needs child should definitely have a Bev in their corner providing accurate information. When I asked about her thoughts of putting Raquel in a "typical" daycare setting instead of a school one, she made a really great point about how the school is supposed to be working on potty training and self-care issues, and to make sure a typical daycare would be focusing on that as well. Just more to think about in the next month or two.
Besides a rough morning, Raquel had a really great day (so far) and I'm optimistic that things will get back on track a bit this week.
She's still just really out of sorts and I don't know what to make of it all - except hearing that mother tell me that things can go backwards at any given time. Maybe that is what happened this last week or so. We did not do the bloodwork last Friday because it was such a rough morning, so I'm planning on taking her this Friday instead.
Raquel is still very much about routine, but it seems as though her routine is constantly changing, if that can even make sense to anyone but me. She no longer enjoys going on walks - perhaps it's just the stroller she's not liking anymore - but she can't tell me what the problem is. Halfway up the street she starts freaking out and we have to come home. Gabby thinks the sun in her eyes is bothering her, which is definitely a possibility with her sensory issues, and she doesn't seem to mind being pushed around the mall, so that's where we go sometimes before the stores open for our morning walk.
She does seem to be talking more - especially in the morning when she wakes up. Some of it I understand, some I don't. She may have developed her own language of sorts. She gets really animated and her pitch changes as well as her facial expressions. I definitely feel she is talking to me and trying to communicate, and I just answer her back, acknowledging the words like I was taught to do.
There are two things that have never changed: Raquel's love for (1) music, and (2) water. Both are secret weapons that snap her out of her tantrums almost immediately and I am constantly rotating between the two. The water can be a bit tricky at times because if she's not ready to get out, it can get pretty ugly. And you definitely cannot say, "water", "bath", "pool", or "wa-wa" without following through. Music works great - especially when we are out and about. I have her favorite songs on my cell phone that can be easily played in elevators, grocery stores, parks, etc. and make trips back to the car much more pleasant.
Actually, there is a third secret weapon - the Moose & Zee characters on Noggin. If she is playing in her room and Gabby is watching tv, she'll yell, "Raquel! It's Moose!" and Raqi comes running down the hall to watch. (NOTE: I have been unsuccessful at locating a Moose stuffed animal or blanket. If anyone knows where I can find one, please let me know. They are not sold on Noggin, as far as I can tell.)
I'm still in the process of getting Raquel's therapy resumed. Her pediatrician refused to sign the form stating therapy was a necessity, so now it goes to her neurologist. I'm sure he won't have an issue signing the form, especially with LKS in the picture. I thought I should have started with him in the first place but was obeying the chain of command I was given. Again, more valuable time wasted. When will I start listening to my gut?
I also spoke recently with Bev, my education consultant. She continues to be such a wealth of information. I don't know what I'd do without her input and guidance. And she makes herself so available to me - days, weekends, evenings. Anyone with a special needs child should definitely have a Bev in their corner providing accurate information. When I asked about her thoughts of putting Raquel in a "typical" daycare setting instead of a school one, she made a really great point about how the school is supposed to be working on potty training and self-care issues, and to make sure a typical daycare would be focusing on that as well. Just more to think about in the next month or two.
Besides a rough morning, Raquel had a really great day (so far) and I'm optimistic that things will get back on track a bit this week.
Thursday, July 9, 2009
Why Respite Care Is So Important
Today, I was very fortunate to have Jennifer come and watch Raquel so I could briefly go to work, take Gabby to lunch, and then sit in on her summer literature class. I've said it before that one-on-one time with Gabby is very much a necessity right now, and today was another perfect example of that.
This morning wasn't the best. I mentioned yesterday that Raquel has been waking up earlier and earlier these days, and today was not an exception. We started our morning at 3:30am. I tried everything to get her back to sleep and finally said, "Screw it!" and made coffee. She had breakfast at 4:30am, watched a little television, and then Mike heard us shortly after 5:30am and asked what was going on. I told him that I was just about out of patience - AGAIN - and he said to go take a break while he dealt with her. About 20 minutes later, she was fast asleep. I guess she wanted her dad.
And then it was Groundhog's Day. She woke up around 8am, and we did the exact same routine: breakfast, a little tv, listened to music. I really didn't know what to make of it all but once I saw the enormous smile on Raquel's face when she saw Jennifer walk through the door, I had really high hopes for the day and looked forward to the alone time I was about to have with Gabby.
I really shouldn't have text messaged Jennifer at lunch to see how it was going but couldn't resist. I was hoping for a good report, but apparently Raquel was carrying on with her just like she has been with me and Jennifer wrote back: "Not a good day", which is really surprising because she's always very easy for Jenn to take care of, or at least to redirect. Today, it was hit or miss with her. Finally, she fell asleep and slept for about 1 1/2 hours.
Even though I knew Raquel was being difficult, I knew she was in good hands and was able to really enjoy my time with Gabby. She was an absolute doll the entire day, from being with me at work, to lunch, to watching her in class. I had so much fun seeing her have so much fun in a literature class!! There are only about 10 kids in it and everyone took turns reading out loud, doing skits about the stories they read, and playing a really cool tic-tac-toe game played with word endings. I'll definitely be doing that with her at home. What a great way to get them excited about creating words! And Gabby was so proud to have me in class. She kept looking towards me, giving me the thumbs up when she answered questions, and was just beaming the whole time.
So why is respite so important to me? Because when you are with a special child all the time, you need a break from it all. When you are with ANY child, you need a break from it all. But at least if you have a "typical" kid, they are much easier to hand over to others. Jennifer knows that Mike works 6 days a week and has limited time around here to help and that the responsibility of it all is pretty much on me and, sadly, Gabby. And she feels bad that she can't help more. I'm just thankful for the 4 hours a week I get and that she works to give other families 4+ hours a week so they can have their break. Most respite workers are highly qualified to deal with special needs children & adults, the elderly, and are certified in CPR, but make very little money in doing so. I think that is a really sad thing.
Today when I came home and saw my little curly locks - and knew at any given time she would, and did, start up - I had patience and was ready be a Mom again. And that is what really is important.
This morning wasn't the best. I mentioned yesterday that Raquel has been waking up earlier and earlier these days, and today was not an exception. We started our morning at 3:30am. I tried everything to get her back to sleep and finally said, "Screw it!" and made coffee. She had breakfast at 4:30am, watched a little television, and then Mike heard us shortly after 5:30am and asked what was going on. I told him that I was just about out of patience - AGAIN - and he said to go take a break while he dealt with her. About 20 minutes later, she was fast asleep. I guess she wanted her dad.
And then it was Groundhog's Day. She woke up around 8am, and we did the exact same routine: breakfast, a little tv, listened to music. I really didn't know what to make of it all but once I saw the enormous smile on Raquel's face when she saw Jennifer walk through the door, I had really high hopes for the day and looked forward to the alone time I was about to have with Gabby.
I really shouldn't have text messaged Jennifer at lunch to see how it was going but couldn't resist. I was hoping for a good report, but apparently Raquel was carrying on with her just like she has been with me and Jennifer wrote back: "Not a good day", which is really surprising because she's always very easy for Jenn to take care of, or at least to redirect. Today, it was hit or miss with her. Finally, she fell asleep and slept for about 1 1/2 hours.
Even though I knew Raquel was being difficult, I knew she was in good hands and was able to really enjoy my time with Gabby. She was an absolute doll the entire day, from being with me at work, to lunch, to watching her in class. I had so much fun seeing her have so much fun in a literature class!! There are only about 10 kids in it and everyone took turns reading out loud, doing skits about the stories they read, and playing a really cool tic-tac-toe game played with word endings. I'll definitely be doing that with her at home. What a great way to get them excited about creating words! And Gabby was so proud to have me in class. She kept looking towards me, giving me the thumbs up when she answered questions, and was just beaming the whole time.
So why is respite so important to me? Because when you are with a special child all the time, you need a break from it all. When you are with ANY child, you need a break from it all. But at least if you have a "typical" kid, they are much easier to hand over to others. Jennifer knows that Mike works 6 days a week and has limited time around here to help and that the responsibility of it all is pretty much on me and, sadly, Gabby. And she feels bad that she can't help more. I'm just thankful for the 4 hours a week I get and that she works to give other families 4+ hours a week so they can have their break. Most respite workers are highly qualified to deal with special needs children & adults, the elderly, and are certified in CPR, but make very little money in doing so. I think that is a really sad thing.
Today when I came home and saw my little curly locks - and knew at any given time she would, and did, start up - I had patience and was ready be a Mom again. And that is what really is important.
Wednesday, July 8, 2009
The Bookstore - Not Such A Great Idea
Raquel has been a bit out of sorts these days. I am very curious as to what adjustments (if any) her neurologist will make with her medication once her bloodwork is complete. One of the things I've learned from the mother I've been communicating with is to be prepared for regression at any given time. She said that sometimes her son will have great days, weeks, or months, and then will slip and have a couple of bad days, weeks, or months. I guess it can be a day-to-day thing at times. And patience is a virtue, right?
I don't know how to describe her "moods" except to say she has these difficult phases throughout the day that can start up at any given time. She's getting mad a lot more, and when she's mad, she'll hit her head and kick her feet until I can break her from doing it. Sometimes that can take me 30 seconds, other times 30 minutes. She's still napping very well during the day - between 1 1/2 - 2 hours - but I've definitely noticed a change in her night-time sleep patterns. She's tossing and turning a lot more. When I check on her, I find her in different positions with the blanket usually kicked off, and she's waking up earlier and earlier in the morning, which I'm really not thrilled about.
One thing she absolutely hates - and will trigger the behaviors - is me following her around in places outside our home. Here, cabinets and doors are locked, she can play quietly in her room, and roam around the house as she pleases. That's not true elsewhere. I have to constantly stay on my guard with her, which really takes the fun out of going places for the most part. For instance, our outing to the local bookstore...
I had to make a very quick stop to pick up a book for Gabby's summer literature class. Since I knew exactly what I needed and thought the timing was good, I decided to take Raquel with us instead of waiting until Mike came home from work. Everything was fine at first - both girls were playing on the little stage and having fun - until Raquel spotted some really enticing sound books on the bottom shelf and started pushing the buttons to hear the noises. Since there were only a few people in the store, I didn't make an issue out of it. After all, a little girl is entitled to have some fun at the bookstore! But then she got up and bolted from me, taking out as many books as possible along the way. I ran after her, picking them up as quickly as possible, trying to neatly put them back while preventing her from doing more damage. When I was finally able to grab her, the lady working there quickly asked what I needed and immediately went and fetched the book for me. She then showed me where to check out. I'm thinking story time at the library is probably not in our near future.
I do realize that a lot of her behaviors are age appropriate, which is truly a good thing. But when you factor in her inability to effectively communicate or express herself, it can make a bad situation even worse. But I continue to learn and am getting better at reading her. And I'm noticing that certain times of the day are most behavior provoking: around 8:30am, 10:30am, & 3:30pm.
Next up is her bloodwork, which is happening on Friday morning. After that, I'll talk to her neurologist early next week and see what he recommends.
I don't know how to describe her "moods" except to say she has these difficult phases throughout the day that can start up at any given time. She's getting mad a lot more, and when she's mad, she'll hit her head and kick her feet until I can break her from doing it. Sometimes that can take me 30 seconds, other times 30 minutes. She's still napping very well during the day - between 1 1/2 - 2 hours - but I've definitely noticed a change in her night-time sleep patterns. She's tossing and turning a lot more. When I check on her, I find her in different positions with the blanket usually kicked off, and she's waking up earlier and earlier in the morning, which I'm really not thrilled about.
One thing she absolutely hates - and will trigger the behaviors - is me following her around in places outside our home. Here, cabinets and doors are locked, she can play quietly in her room, and roam around the house as she pleases. That's not true elsewhere. I have to constantly stay on my guard with her, which really takes the fun out of going places for the most part. For instance, our outing to the local bookstore...
I had to make a very quick stop to pick up a book for Gabby's summer literature class. Since I knew exactly what I needed and thought the timing was good, I decided to take Raquel with us instead of waiting until Mike came home from work. Everything was fine at first - both girls were playing on the little stage and having fun - until Raquel spotted some really enticing sound books on the bottom shelf and started pushing the buttons to hear the noises. Since there were only a few people in the store, I didn't make an issue out of it. After all, a little girl is entitled to have some fun at the bookstore! But then she got up and bolted from me, taking out as many books as possible along the way. I ran after her, picking them up as quickly as possible, trying to neatly put them back while preventing her from doing more damage. When I was finally able to grab her, the lady working there quickly asked what I needed and immediately went and fetched the book for me. She then showed me where to check out. I'm thinking story time at the library is probably not in our near future.
I do realize that a lot of her behaviors are age appropriate, which is truly a good thing. But when you factor in her inability to effectively communicate or express herself, it can make a bad situation even worse. But I continue to learn and am getting better at reading her. And I'm noticing that certain times of the day are most behavior provoking: around 8:30am, 10:30am, & 3:30pm.
Next up is her bloodwork, which is happening on Friday morning. After that, I'll talk to her neurologist early next week and see what he recommends.
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