Guilt

I am feeling tremedously guilty for skipping yesterday. It was a Friday after a long week, and I tried to catch up on everything else so I let it slide. We have had a lot going on lately that involves a lot of time. We have someone stayng with us for 3 weeks, and there was a little conflict that needed immediate attention. I also spoke with someone from the public school and made sure that the person who has the problem with me doesn't come to the pre-school anymore. I requested that she not be present at the IEP meeting, but they can't promise me anything. They said they could ask her to step out after she presents her material. I have gotten some good homeschool information, so I feel confident I have a backup. It really doesn't matter since she will still be at the pre-school level. They want me to put her in a regular kindergarten class without knowing anything about her. Even after I tell them, this one woman is pushing for it. They say she needs older role models. So I plan to bring up 2 of my children with September birthdays who couldn't start kindergarten until they were a couple weeks shy of 6 years old and reading in pre-k. What role models did they have? What special accomodations were made for them? They needed it more than my little one. I can keep her back and she will only be 2 months older than her sisters were when they started kindergarten. By holding her back, I am keeping her with her emotional and developmental appropriate age peers. I wish they could take the blinders off. I just found out that the mother of the violent boy at pre-school is using sensory as an excuse for his punching. Okay, so we have a perfectly adjusted just turned 4 year old and a just turned 4 year old violent boy to compare S to. They look at the other little well adjusted girl from China and think that any adoption issues are an excuse for S, because just look at this little angel with the same circumstances. Then they look at the other boy with so-called sensory issues who is just a monster and she doesn't fit into that either. Looks like they were right, she's just a spoiled little princess. It's so frustrating. What is to explain the little boy teaching her the f-word amongst others? Can they blame that on sensory?

Have I mentioned this?

I don't know if I've mentioned this before, but S has been very interested in how we are the same and different. She is really interested in her family's eye color. She studies my face and that I have freckles. She studies the lines on our palms. Her fascination fascinates me. Not only has our NR time been good for development, it has been good for attachment. I remember reading about bonding activities before we got home and after. I remember thinking, yeh, right, like that's going to work. i had no idea how disconnected she was or a child could be. I was worried about bigger things when we first got home, even though I did everything for bonding that I could do. I still have never been away from her for one night. We have been home 3 and a half years. No one else has ever taken care of her outside of her family until pre-school this year. I took a risk, and although she had loads of fun, they weren't equipped to take care of her for the 3 hours she was there. I do have to say, being away from me at pre-school increased her bond with me. She started caring where her family members were and always asks where they are. Her daddy's job takes him out of town for 7-9 days at a time, which has to be hard on her. I took probably a couple of years for her to accept him when he got home. She would ignore him or act afraid of him when he got home. She still doesn't really greet him with joy like she does when her sisters come home. So I'm thrilled that she wants to be like me, will care to copy me, and is interested in how we are alike and different. When I see what other parents marvel over, it all seems so superficial. I marveled over the same things with my other kids, so I don't think it's wrong, but my special little girl has taught me to appreciate so much more. All of her accomplishments have been of epic proportions. Does a mother ever even notice when their child first looks them in the eyes with meaning and love? When they notice your eye color is different from theirs, your skin a different tone? It is all worth noting and all spectacular feats in my eyes....my two blue eyes in the words of my lovely daughter.

Filling in the Details

I got the date and time of our IEP meeting in the mail yesterday. Two weeks until the big showdown. I am dreading it. I have to meet with the person who can't stand me and was hostile to me. I am in touch with an advocate who will be there with me. Problem is, she works for the county, the same people I will be challenging. I have yet to understand how she will work both sides of the fence. I have a feeling it's like a realtor. They want results, even if it means turning on the person they are working for. It's going to take some heavy divine intervention for me to make it out of this in one piece. No one seems to be looking out for the one this is all about. They don't want my input, the one who knows her best. The good thing is that the advocate is going to try to get a copy of the IEP so we can go over it a few days before the meeting. That way, I won't be taken by surprise. This will help me collent my thoughts and prepare a strategy. Writing these words sounds like I'm preparing for war. Why does it have to be this way? I am exploring all of my homeschool options at this point to be well prepared for alternatives.

I got the name of someone in my area who does cranial sacral therapy. Poor S goes into a panic whenever she hears the word appointment. She just went back to the pediatrician yesterday for the second time to get her wax cleared out. She was only able to get a little more out. I asked her if she could feel when she was close to the eardrum and she said "No" I didn't like that answer. She goes in with this huge plastic insrument and digs out the wax. I don't know if it feels as rough as it looks, but it kills me to think this poor child is in horrible pain each time. I know she has hurt her before, because I need to restrain her the entire time and I have hear her scream take on a different pitch when it changes from fear to pain and her entire body shakes. These last two times, she stopped early because she said her instrument knicked the ear canal. I have tried the last two nights to flush it with warm water. I am hoping this, in addition to the drops will clear it without the doctor needing to risk going through her eardrum. At this rate, she will never get over her fear of doctors. So cranial sacral might have to wait until she gets her ears taken care of.

We are 2 days into our new program. The cross pattern is still hard for her because it is the opposite of what she is used to. She is doing her legs herself for the tonic neck pattern, which is a real blessing. She's thrilled to crawl less, but creeping for 20 minutes is a challenge. I need to do it with her, and it's hard to do. We changed OT to every other week, and I think I've decided pre-school will be twice a week instead of three. I want to leave all together, but 2x a week might be a good compromise. Another pre-school mom said the director came into the classroom and talked about behavior. Imagine what the good kids thought about that. Why can't they address the kids who need it directly? When it's done as a group, the bad kids don't get it, and the good kids think they might be addressing them.

We are having problems with electronic devices. S has been on them quite a bit lately and is becoming obsessed. It is an extra busy time of year, and it's harder to keep her busy doing other things. I have to get a system down, especially if we homeschool.

Re-eval

We had our re-eval yesterday and it went well. Our hard work paid off and we have made some gains. We are concentrating on the mid-brain level now, with minimal crawling. We have a difficult pattern that is similar to one we have been doing, so it's confusing her. We have more work to do this time and the reflex I though was gone isn't quite gone, but is really close. I think that all we have been doing is giving each therapy a boost. I was sad to hear we probably still have at least a year to go. Summer is going to be hard to keep up and stay motivated. I have to stick with it though, because we are on a roll now and I can't lose our momentum. I really see us in the home stretch.

We have had some really upseting events at the pre-school. The person who has been coming to the school to evaluate her decided to test her at school. She wasn't supposed to do this and I told the school I didn't want her testing her on school time. Well, she showed up Monday and the school called me and took the other person's side instead of defending me, the person who pays them. This isn't the first time it's happened. I was so upset about it yesterday that I thought I was going to blow a blood vessel. More later, I'm out of time for now.

Great Leap Forward and Some Sad News

Okay, this morning I was getting S ready for pre-school. She said something about wanting out house to fall down/be ruined, something like that. I said that we wouldn't be able to live here if our house was destroyed. She said, "I don't want to live here." So I asked, Where do you want to live then?" She said, "In China." I asked, "Who do you want to live with in China?" She answered, "The lady who led me." I asked if she meant her nanny and she said yes. So I asked, "Do you want to live with her and have mommy and daddy go back home without you?" She answered, "Yes" I told her that we would miss her too much and wanted her to live with us forever, that we were her family. I told her that we could visit with her nanny and always be able to see her and keep in touch with her. She seemed satisfied with that and we got in the car. After we were in the car, she started talking about the other babies and where they went and did their parents change their clothes? She started going off on a tangent, but I was thrilled that she opened up and talked. After she stopped talking, she was just staring and was in deep thought. I asked her how she was feeling and she said. "Sad" I told her it was okay to feel sad and that I wanted to try to make her happy. It was a big day and I hope she continues to express her feelings.

The sad news is that I went into her school today and that I heard the other kids talking about her. They started telling the other mom all of the things she does. It was clear that she stands out. One boy said that when she asks for more popcorn, the teacher replies, "You already have some!" the teacher overheard and said, "I don't say that, I always give more when someone asks." I also witnessed something with the boy who punches. The teacher had him come out and apologize to the boy he hit and then proceeded to say that they can't play a certain game because people can get hurt. This makes the vicitm think it's their fault. The teacher also told me that she hoped and prayed that this year overall has been good and that too much damage hadn't been done. Did she really say that? Damage? I am distraught to say the least. I think God is overestimating my endurance. I guess we have to get low enough to be rescued out of the pits. I think we've hit bottom, come rescue us!!! The teacher from the school was at school today and S missed half of the party I can to help with. I finally asked if someone would go and rescue her and they did. The teacher from the public school appeared to be testing her. I don't want this happening on school time, I am not paying for her to be with someone else. I need to make some calls and cause more conflict, grrr, not what I want to be doing.

Last Night

For the past several weeks, S has been hesitant to go to sleep herself in her own bed. It is a result of the thunderstorm that woke her up. Her teacher commented that she heard a sound on the playground the other day and asked if it was thunder. I explained that she was never afraid before this storm that woke her up. I guess she thinks she's a drama queen since she wasn't afraid before. I heard from another mom in her class today. Apparently I'm not the only one who has been unhappy with what goes on. I don't know why they decided to take on the violent child and ruin it for the other children. I just found out he is just turning 4, he should have been in a different class. I am very disappointed that a church group would take on kids just for the money. I can't guarantee this is the case, but if there was no room in the lower classes, the younger children should have been turned away. Most of the children in that class are already 5 and have been for a long time. All of the children were subjected to violence and filthy language, for what? Anyway, back to last night. I told S I would be back to check on her and she said, "I don't want to be away from you." Then she said, "I need you." All of this was after she had the worst behaved day of her life. Was she dealing with these feelings and trying to deny them? I just don't know, but I was thrilled to hear those words.

Too Much?

I had wanted to keep this blog short and sweet, so interested families could see a short, concise journal of progress. My time is so limited, and I know others time is also, especially when you have a child with more needs. Unfortunately, it has evolved into something longer. I think this is because this is the first time that we have stuck with it every day for 5 months now. So naturally, I have more to report. I really think that there is more to it than just a scientific report of data. My background is science, and I'm used to 'data' as opposed to elaboration. But, children aren't a science experiment, and my daughter isn't a study. From a busy parent perspective, that is what I want to read, a short version of the facts. So maybe I didn't fulfill what I set out to do, but maybe someone will read a post or two and find something to encourage them. I feel the end is in sight, I hope my daughter is close to graduating. I need to stick this out to know I gave her the strongest foundation for other things to build upon. As she's getting older, I can see how smart she really is and how much she retains. My recent discovery of expressive language is really making sense out of so many mysteries. I hate that I am sitting in front of a computer for hours a day, reading and searching. It is the only way to find anwers and the proper help. It's like unchartered territory. Although there are so many people in my shoes, none of us have the exact scenarios. The combinations are limitless, so there is no one size fits all, not even one size fits most. We see Bette in a week!

Lots of Great Stuff

The biggest sign of attachment over the last 6 months or so is when S takes inventory over her family. She always asks where everyone is and when they are coming back. A couple of times she ased where her sisters were and then said, "They're gone forever." Everytime I tell the teacher something that could be traumatic or has been traumatic in the past, she find an instance where she didn't react the same way in a similar or same situation. Why would she think my daughter should react like a programmed computer, getting the exact same response each time. Is there anyone else in the world this predictable? I really don't know what point she is trying to make when she does this. Is she trying to tell me that S is faking? She has eluded to that before. Is she trying to say that I just don't know what I'm talking about? Okay, got off on a tangent again. I really started this blog to have an account of our NR journey, but our journey is so much more than a few exercises every day. The emotional journey is 100x as hard as the physical one. Why don't people trust that you know what you are talking about and know your child better than anyone? I live with her, I spend the most time with her, and most of all, she trusts that I will not send her anywhere that I can't trust the people who she's with. Needless to say, that's why she is rarely away from me. Even though I complain about the bad things that go on at school, I do believe that most of the day is good and beneficial.

Back to the good stuff. Lately, S has been comparing facial features, as well as other body parts. She is really aware of same and different. She is always comparing our eye color. She studies my face all the time. Yesterday, she asked me, "What are these lines?" (and pointed on her face where they were on mine) She was talking about the lines or crease on either side of my mouth. I looked in the mirror because I didn't quite know what she was referring to. I saw what they were and had to answer her, "Oh, those are there because mommy is old!" Better start saving up for some laser treatments!!!!!!

One thing S has been doing during exercises is asking is we can snuggle. I think this is a delay tactic, because she has so many now, but maybe it's not. Anyway, usually I oblige, but I wonder what I should do.

The NR group is always talking about subtle changes that you usually don't recognize unless you keep a journal. I am so happy that I have kept this, because there is so much that I have forgotten. I have seen Bette test for the spinal galant reflex and it is always there. Reflexes are pretty easy to test for, so I do it myself upon occasion. The exercises to get rid of this are pretty easy, so we have always done them. They are so simple, that it seems like there is no way they are doing anything. Well, after months of hard work, it's finally gone! We see Bette soon, so I will need her to confirm, but I'm so excited!!!

S said some random things yesterday during our NR session. Sh said, "I have lizards crawling all over me." The she said, "I'm going to catch the lizard" I still have no idea what that was all about.

Another thing she said that was super cute. I don't know if we were laughing or just having fun, but she said, "The happy is falling out!" I asked from where, and she said, "Your mouth!"

I got mad at her because she wouldn't finish her last 4 laps of crawling. She pretended she saw a happy version of us standing near us. She said, "Look, there's happy mommy standing there, and there's happy S standing right here." Of course she got the real mommy to be happy. In the past few days, I have really seen a lot coming out. Just when I was getting so upset at realizing an expressive language delay, it seems like that is improving. She actually told me a little about school that wasn't just straight fact. I asked her if her teacher read a story and she started to tell about something that didn't make too much sense, and then it morphed into an episode of Curious George. I was amazed at the details and amount of sentences she used.

I have decided to to another round of BIT if the schedule works out for us. Hopefully we'll be done with the listening program so I can see which one is doing what.

Poem From Sensory Planet

The Misunderstood Child [A poem about children with hidden disabilities] by Kathy Winters
.by Sensory Planet on Monday, April 11, 2011 at 10:19pm.


I am the child that looks healthy and fine.

I was born with ten fingers and toes.

But something is different, somewhere in my mind,

And what it is, nobody knows.



I am the child that struggles in school,

Though they say that I'm perfectly smart.

They tell me I'm lazy -- can learn if I try --

But I don't seem to know where to start.



I am the child that won't wear the clothes

Which hurt me or bother my feet.

I dread sudden noises, can't handle most smells,

And tastes -- there are few foods I'll eat.



I am the child that can't catch the ball

And runs with an awkward gait.

I am the one chosen last on the team

And I cringe as I stand there and wait.



I am the child with whom no one will play --

The one that gets bullied and teased.

I try to fit in and I want to be liked,

But nothing I do seems to please.



I am the child that tantrums and freaks

Over things that seem petty and trite.

You'll never know how I panic inside,

When I'm lost in my anger and fright.



I am the child that fidgets and squirms

Though I'm told to sit still and be good.

Do you think that I choose to be out of control?

Don't you know that I would if I could?



I am the child with the broken heart

Though I act like I don't really care.

Perhaps there's a reason God made me this way --

Some message he sent me to share.



For I am the child that needs to be loved

And accepted and valued too.

I am the child that is misunderstood.

I am different - but look just like you.


Oh how this resonated with me, this is my child. Not every aspect of this poem rings true with her life, but most of it does. If only people would try to understand, give you or your child the benefit of the doubt. How narrow minded to not accept something you refuse to educate yourself about. If you can prove something to the contrary, go for it, but if you just refuse to believe it because you choose to stay ignorant, then the problem should be yours, not mine. I had a conference with S's teacher yesterday. Let me tell you, my head was spinning when I came out of there. The teacher thinks there's nothing she doesn't already know and anything I tell her is perceived as a personal attack. She is a nice person, and as far as I know has been very kind to my daughter. But when she talks about her to me, she speaks as though she's talking about some alien being. She seems to cite an example to refute something I've tried to educate her on. PRIDE is evil, it hurts you and it hurts me, and ultimately hurts my child. Don't people realize they would be more admired for aquiring more information and always learning than being the expert? New things are being discovered every day, a myriad of subject matter. If you stay stuck in today, you may be the expert of yesterday, but you are the moron of today. Yes, my bitterness streak is not over. I will protect my child until I take my last breath, that is my job as her mother. I know others take a different approach, throwing their child out there to experience the world and become independent at an early age. No matter how hard we try though, we can't make them learn any faster than they are capable of. I believe in the softer approach, they won't be little forever. I want her to be able to trust me and trust the world she lives in. It's only when they are comfortable that they can learn. S has so much anxiety, she is always on the lookout for something to surprise her. If I didn't give her a safe environment, she could never learn anything but survival. I have to admit that I resent the people who don't put in any effort, don't go the extra mile, and have no problems and smooth sailing. I have spent so many months, maybe years now, trying to find answers and the proper help. I'm still searching, but we're so much farther down the path than I expected to be. I am so happy with how far we've come, and I'm in for the long haul. She's my precious daughter and we will triumph!

Speech

S was evaluated at the school for speech and language. Even though she figeted, played around, and purposely gave wrong answers, I'm pretty sure she scored at a 6 year old level for receptive language. Gee, how did that happen without the school teaching her? Had to be something though, surely not her incompetent mother that they can't wait to tear her away from. Do I sound bitter? Why yes, as a matter of fact I am.

Dad took her to OT this week, and the OT was marveling at how she followed directions so well in forming her letters. This was of course attributed to the Theraputic Listening program. Maybe, or maybe she's getting to know the OT and becoming more compliant. At this point, I don't care what gave the results or who takes the credit for them, I am just happy with results. How much more could we take on if we knew the outcome? My guess is that there would be no limit. God bless the countless moms who trudge on and have no idea what the end result will be. I am getting so tired of the daily NR because S is getting more resistant. On the other hand, it looks like the spinal galant reflex is gone! Everyday I have done the silly looking movements that I have doubted had any effect, but it apparently has worked! Again, did her BIT have anything to do with it? Darned if I know, or anyone for that matter. I actually saw her copying her sister and marching with her arms in sync with her legs. This is miraculous! Friday the behavior specialist observes S in her classroom. I dread the inaccuracy of that report. Right now, depending who you talk to, S fits into these categories of diagnoses-Cerebral palsy, ASD, SPD, APD, attachment disorder, let's see, did I forget any? Oh yes! Spoiled adopted child of older parents syndrome. Moms problem? Bitter, depressed, worn out, unsupported, sarcastic, disappointed with 'professionals' and angry. Why am I writing this when it exposes my inadequacies? Because there are others in my shoes who will appreciate reading this one day and know they aren't alone. So in the midst of all this, I am still formulating our 'journey to success story' to write when we are through with this NR journey. Hopefully it will also be the end of other therapies as well, but I know there might be a bit of fine tuning left. I am above all thrilled to be the mother of this amazing child with the vivacious personality. She has an incredible sense of humor and is loved by all who know her. Well, maybe except for a few crabby people who refuse to understand her. Their loss-period.

I almost forgot!!

This one is huge, and to think I almost forgot about it! I have been sick with a cold the past couple of days and my 13 year old was helping with S so I could rest. I came downstairs and she knew I wasn't feeling well. She said to her sister, "Let's go outside 'cause mommy doesn't feel good." Did I hear that right? She understood that I didn't feel well and knew enough to be considerate. This is amazing! This is what I was talking about when I said she has increased her emotional vocabulary. Oh, I so want this to be a part of BIT because I will get her more treatment. The Listening Program can also have an effect.

When she went to the Pediatric ENT for an audiogram, they noticed a huge clog of hardened ear wax in her right ear. The ENT said it would be too risky and traumatic to dig it out and that she should undergo SURGERY for it!!! I told him I would talk with the ped about it and she suggested trying the Debrox drops first. Little did I know that everytime she dug out wax at the office, she was risking rupturing the eardrum!

I have been putting drops in her ears for almost a week. I hope and pray that it does the trick and she avoids surgery. I will look for every other treatment before submitting to anesthesia.

***occasionally I will go back and correct typos, but most of the time I'm lucky if I have time to post a new entry. So I actually do pride myself on spelling,, even though it's not obvious here!

progress

I don't know how to describe this, but S has been using more expressive words. Suddenly, she sounds more like a big kid than a 4 year old. The amount of expression in her voice has also changed, I think this is due to the Theraputic Listening program. I've also noticed more compliance. If I ask her to do something she doesn't want to, she doesn't really protest, and then will say, "Okay mom." If it's possible for her to be more pleasant, then she is. Since this week is our Spring break, we have been in underwear except for night time. she has done great. Now if we can just get her to poop in the potty. Another one of my kids refused to do that until she was about 5, so I've been through this before. We had a big thunderstorm about 5 days ago and she was scared to sleep in her own bed. I stayed with her in her bed for awhile and she was okay. Then we had another storm and she wanted to sleep in my bed. I said she could and she's been there for the past 2 nights. The difference is that she stayed close to me instead of keeping her distance. This is the same child who used to scream whenever she was placed on a bed until she was home more than a year! It has been slow going, but we're getting there. I was talking to a friend the other day and I had this big realization. What if S has expressive language problems? Is this why she doesn't express words for emotion? I really hate that sensory processing disorder, auditory processing disorder and attachment problems all have the same or overlapping symptoms. How is someone supposed to figure out what to do for their child? I can't do multiple therapies at once, she nor I can't handle that! I really don't care what the diagnosis or label is, just tell me WHAT it is and WHAT I can do about it!?!? Can't anyone at least figure that out? My goodness, I have gained 10 pounds and spent hours sitting here on the computer trying to find the answers. I'm perplexed and frustrated, can you tell? I feel like I am all alone in this, even those who have been patient are ready to give up thinking we've done all we can and that she is 'just fine/needs more time.' Well, sorry, I'm not giving up until I have done all I can. She deserves this and she's going to get all that she needs. How many times have I said this? Maybe I need to say this to keep going. I am having a hard time with it all because of the stress the school is putting me through. Better me than her. Although conditions aren't perfect where she is going, I don't think a day has gone by this week when she hasn't asked when she is going back to pre-school. We only have about 6 or 7 weeks left and then summer, yay!!!!!!