Mobility...

It's getting harder and harder to take Asia anywhere. With her hypotonia (muscle weakness), she tires easily. Majority of the time she would prefer to sit in the car by herself then get out and be carried somewhere. Daddy usually does the carrying and if she is not in the mood he gets hit a lot or his hair pulled. We toy with the idea of going on vacation but we are apprehensive. Asia does like to go on rides at amusement parks, she likes to be somewhere that she can just sit and observe. She remembers the beach and wants to go there. She has a short attention span, and a sensory processing disorder so I think getting a thrill from a ride, or being able to people watch etc helps her calm. We have noticed that if she is strapped down-like in a stroller, car seat or high chair she usually calms down. I think she could walk all day in a stroller. Asia loves to go to the mall and be pushed in the stroller. It's one of her favorite things to do and she is always asking for the "mall". She gets mad if you go into a store (unless its Disney) and she wants to walk the entire time.  Long story short:) She is getting so big! and she's still growing. Regular strollers are getting to small. I looked into some special needs adolescent strollers and whoa! They are pricey. We have thought about Disneyland and we have heard that they are great with kids who have special needs but, we would need a good stroller for her. Not even just Disney but anywhere-it would need to be great for any surface. So far I haven't been able to find any "used" ones and the new ones I found look great but I don't know when I would ever have a few grand to drop on stroller-before accessories? The less expensive one looks ok but, its still $800? I'll have to keep working on this one...

Typical Day-
Still waiting on Dr phone call-
Yay for the sunshine and blue skies-

These ones I found with Flaghouse-they have a lot of great special needs items.
http://www.flaghouse.com/
This is a good one-$3299.00 before tax, shipping or any accessories.

 

 

This one looks like she would outgrow-$759.00 before tax, shipping and accessories. If she outgrows may not be worth it.

 

 

 

 

Routine

Teachers have been telling me for years that Asia really knows and likes the "routine" at school. She knows when to do certain activities and when its time to transition or take a break. Something I have noticed at home as well. She knows in the eve when we eat dinner that afterword we get ready for "nigh nigh"-bedtime. She knows when I wake her up it's time for the "bus". When she gets home from school she wants to eat cheese and chips then take a nap-pretty consistently every day. When this routine changes-she seems to be in a worse mood. Because I didn't know about the disorder until recently-after researching a bit it seems that other cases of children with the disorder also "love their routines". Something to prepare for ahead of time if there will be a change-I need to get creative with the distractions. Today she didn't get her nap after school because we had errands to run...She beat up brother in the back seat (hitting, hair pulling) - I grabbed a bag of chips on the go and she calmed down.

One of Asia's routines we have is before bed. When we put her Jammie's on we also use essential oils. She knows this and will hold up her feet to let us apply some to the bottom of her foot. It seems to calm her a bit and helps her realize she is going to bed. Some of our favorites have been lavender (regular), frankincense, lemon and orange. -Remember to be careful when using essential oils on someone who has seizures, some can cause seizures- I do notice a difference in brands. Some are fairly costly and others you can buy online for super cheap. One of my favorite brands has been doTerra-and part of it has been the smell other the quality. Frankincense has been known to help with seizures. It can be applied to feet (toes), temples, earlobes and neck. I noticed a difference in seizures with Asia when I started using Frankincense. I also noticed a difference between brands. When I say difference I mean I saw less seizures with certain brands.  I would definitely recommend the doTerra brand and if you needed a contact here is a email address.

simplythesweetlife@gmail.com




Other then that...pretty typical day.
Still no return call from Dr:(
Snow outside is insane and everyone has cabin fever...

Swearing in my head.

Quick note on today. Left another message for Dr to return phone call. Turned my alarm off this morning accidentally. This being positive and negative. Positive- It gave Asia more time to sleep and wake on her own-Negative, I had to drive her to school in the snow storm. Oh well, she was in a pretty good mood this morning. Left her "favorite" book at school yesterday so she wigged out a little that she didn't have it this morning. Cried a little when I left her at school but was easily distracted by the computer her teacher lead her to. After school began a series of tantrums but, she was extremely tough today and she really pushed my buttons. I was ready to put her in bed after being scratched in the face, hit many times, kicked, hair-pulled, food thrown at me and when dressing her in pj's actually got a few kicks to the head-I probably swore a few times in my head. Nothing stood out today except that she got to wake on her own and that may have helped her am mood? Hope tomorrow is calmer:)

What does Asia think?

There have been a couple of experiences that has changed the way I "handle" Asia. Asia always seemed like she was "in there", that she was fairly normal just couldn't talk. She sure can make tempers flare. As parents, siblings, friends, extended family and  possibly a stranger here and there-she can be naughty and it's is so frustrating to all. I have to watch her when we go out, I worry she will hit a passerby or pull everything off of a supermarket shelf. She may throw a brand new fountain drink on the floor of a restaurant or worse, try to swipe everything off of the table-all glass dishes and food included (all of which she has accomplished). Strangers stare and give those looks of "disgust". I get looks when she is naughty and I get looks for trying to make her happy. I often try to keep her calm by telling her she can have whatever she wants-saying yes to this and yes to that-people think I am creating a "spoiled brat". Crazy thing is, saying yes to Asia rarely calms her down. I would love to know what is going on in her head. She says "book"-yes "mall"-yes "Donald's"-yes...and she still tantrums? We don't understand why she does certain things or acts a certain way. I don't see myself as a mean or angry person, I am generally very laid back, patient and caring but Asia flips that switch sometimes. A few months ago I took a step back and didn't like what I saw in myself. She was infuriating me and Asia has gotten her fair share of time-outs, scoldings, and a swat here and there (not easy to admit). Knowing what I do now, I feel a bit brokenhearted that I couldn't be more patient and a little guilty. When it's 24/7 without many breaks-it wears you down and I lose it. Asia is a angel and that is why I am trying to figure it all out. This year was my first "change of heart" when dealing with these struggles daily-I try to think that "there must be a reason for her actions" and try to be more patient. The following story is something that really touched my heart- a lot of people have seen it but, it is so amazing to me and maybe it will be to someone else.

Hate waiting for Dr's phone calls...

I got the news about Asia and her genetic disorder almost two weeks ago-that she missing information from her Chromosome 2. Her neurologist wanted to do a little research and call me back the following week. Being a rare disorder, I imagine he needed to research the disorder, look into treatments etc. which is great but, I am also waiting to tell family, teachers and others that take care of her until I get the rest of the information from him. She may be the way she is forever and I want to have all my info before I reveal what we have learned. I have left a message and it's been another two days. Patiently waiting, I will call again tomorrow!

Shared a laugh

Today was a pretty typical day. So, when I say this from now on you'll know that Asia threw pretty big tantrums in the morning, afternoon and eve. High pitched shrill, slapping, and throwing stuff. Today though, I got to laugh about it with my amazing husband. Asia loves-LOVES-McDonald's. He picked her up from school and brought her to get fries on the way home. I seriously will put 3$ in the budget everyday for her to get it-if that will make her happy (and unlike the last post-the weight gain wouldn't hurt, she is as thin as could be now). She is very difficult to please and this is well worth the money:) She gets home and is so upset. Throwing a huge fit ????? not sure what it is but we start getting her food and she is throwing it as hard as she can everywhere-(every meal is in fact, a true all out food fight and not in a "fun" way). So, she really wants these fries so she will take a bite and throw the other half on the floor. Just to show her rage. Over and over this happens then she tries to scoop them all up and toss them. Dads laying on the floor trying to pick them up and he is just getting bombed. She then gets her chocolate milk and suddenly there are little drops of it going all over me, the chair, the kitchen her dad-wow. All we could do is laugh-what else can you do. It was actually really nice to have someone else there to laugh with-daddys usally working during the day and we are dealing on our own. We finally realized that she wanted a soda. She saw ours sitting there and wanted that kind of drink.

So, note to self-get Asia a soda not chocolate milk:)

A fun side note: McDonald's is a pretty awesome place for Asia. Again she only has a handful of words but one day driving home from a Dr's appointment, from the back seat it sounded like Asia was saying "hamburger". My husband and I looked at each other and said "hamburger"? Whoa, she just said a new word. This was about a year ago. Then she called it "M". Then she would say french fry and now she says "Donald's". But, she seems to have lost the other words-which is a bummer.

Asia as a New Born

When Asia was born I was so in love! I just remember loving her so much-she was a angel, you could tell. Nothing was went wrong with the pregnancy or delivery. She was past due but no complications. She was a beautiful little girl. Most of the new born screenings went great-there were a couple oddities. Something minor was she had a couple of odd skin patches right about her lip-almost looked like 2 hearts. These were tested and were nothing to worry about.  On her backside-where the tailbone is, she had a little hole. Almost like she didn't seal up all the way. The other concern was her hearing tests. They could not pass her on one ear. They claimed that is was probably liquid that still needed to clear out and I would have to come back for a re-test, not a big deal. She was a little jaundice but, relaxing in the sun a bit kept her from having light treatment. Her tongue was tied down-something she did have clipped later on. She ate really well. Now, to think back on it-she ate surprisingly well with her muscle weakness.

We continued the hearing tests. Somewhat of a sore subject for me. We went in numerous times and for one reason or another they could never get the test done. Problems with equipment, problems with her holding still etc etc. Nonetheless, they could never get a reading off of what I remember from her "left" ear. So these tests went on, and on....more on this later.

Asia gained weight like crazy.
After 2 months....So cute, right?

After 3 1/2 months...I used to take her shopping and people would tell me she was they cutest thing they ever saw (because she was so big).

When I look at photos of her now I never remember her looking this "fat". I inquired with Dr's about the weight and there was no concern. They felt she was a good eater.  I was breastfeeding and they told me I had "rich" milk. We didn't see the signs of her muscle problems.

4months...No, she never actually "blew" up. It looked like she was going to.

My brother asked me if "something was wrong" with her and I thought what are you talking about? I didn't see it.

Sensory Processing Disorder-Loud rooms?

Today started out surprisingly well. Asia only tried to get the baby twice and was almost in a happy-pleasant mood almost all morning-which in itself is rare. Very content looking at her Ipad while laying on her brothers bed and even tolerating her morning seizure medicine well. Normally she gags it down- even dry heaving before we actually give her a spoonful of yogurt or applesauce. Currently she is taking the medications Topamax and Depakote which comes in capsule form but, we have to open them up and mix the tiny sprinkles inside with food. Easiest being yogurt and applesauce but she has a distaste now for both. We have to be prepared for her to throw up every time she gets it. We have found that mixing a little Agave in it seems to make a difference in taste for her. Asia's seizures are not under control. She has also been on Keppra but, she was weaned from that because we didn't see a difference. The amounts of medication keep being altered to try and get the right combo to stop her daily seizures-we aren't there yet. Different medications may be introduced in the future. Asia started having seizures -that we noticed- around the age of two. They started with two grand-mal and then medication was introduced. Now she has seizures more in these categories: Absence seizures, Atypical absence, Atonic or "drop", Tonic, Complex partial seizures. Here is a great link for types of seizures.
http://www.epilepsy.com/epilepsy/types_seizures

I wondered how long the good mood would last...

We attended church services and she really wanted to be there but she pulled her teachers hair and slapped her numerous times and I am not sure why? It is so embarrassing that there is no control-but what can be done? Kids act a little sketchy around her because I know they are on the defense. Unfortunately, she has probably got each of them a few times as well. When I say slap, remember she is only 6. Her slaps can be painful here and there but, usually not. What gets me is the hair-pulling and the slap that is being repeated over and over and over. She kicks now as well:) Also the tantrums with the screams. This year she has developed a high-pitched shrill. Loud and intolerable. Daddy calmed her down a bit and left her alone with her teachers. She was great for them the rest of the meeting-happy to be there. At home company stopped by and she screamed and yelled. Hit and threw everything she could get her hands on-even our company, and why? We try to calm her by getting her what we think she is asking for but sometimes this is a impossible undertaking. Asia only has a handful of words she uses. We really try to translate what she is trying to communicate but sometimes we have to throw in the towel-we cant figure it out. Maybe she doesn't feel good? We stopped by grandma's house tonight and again she wants to be there but, she screams, hits, pulls her cousins hair, throws food-you got it, total chaos. We did notice that when all the cousins left the kitchen and the sound of the room was quieted-she did calm down...something to watch for in the future. She does have a sensory processing disorder so maybe to much is to much? I will have to watch her environment.

I wish I could tell you all about Asia in one post but there is not enough time to get it all down. I definitely want to document her days and anything that might be part of this puzzle. When it's late, I may only be able to touch on our day. We will catch up.

Season

Only slapped 15x's today

I have got to find a way to make being slapped humorous. When I titled my post today-it became so. Why can't I take myself out of the situation better when it's happening. When I tell someone that it's been a pretty good day - Asia has probably only slapped me in the face 15x's - it becomes a little funny?

Along with documenting daily experiences, solving some mysteries, and finding a way to create happiness in Asia's life-I want to find the humor, the joy. I am looking for laughs. I want to create a "journal" that maybe someday she will be able to read. I read and hear all the time from families with kids who have special needs that claim "life is so great", "that we laugh more then other families do", that their child "brings so much joy" to their lives. I'm going to get honest and please remember when I say this, Asia is amazing. She is a blessing and does bring joy to our family. Adults and children are drawn to her. I wouldn't trade her for anything but, daily life is unpredictable, its complex and involved. Asia is attending school full day and before she leaves and when she returns home she spends most of her time in a screaming tantrum (my big question is how to solve this). We have a good day here and there-and I know its rare because when we do, I notice right away that its happening. It is the best feeling in the world when I feel Asia has had a good day and I want to solve this anomaly on what gives her this"good day".

I have read a few blogs about children in similar situations and it really helped me to realize that other people are going through the same thing. It helped to know that someone else is giving their child the same type of medications, going through the same surgery's, having the same tests done, and seeing similar responses to experience as my Asia is. Often times, it's the regular people out there-not the Dr's- that do the most research, ask the hard questions and find the most answers to impending problems. I am looking for ideas on difficult daily experiences, input on how to handle certain situations and any advice I can get. In this blog I will revisit the past, give you the present and try to look into the future. I will give all details I can remember or find on what has happened with Asia medically, along with daily experiences. I will look for products to review and post on activities that Asia enjoys (or does not enjoy). I may have some posts done by "guests"-dad, siblings, friends, and extended family. Her condition is rare but, her symptoms are common among many children and maybe someone can relate.

Season

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