Turmoil

We have had quite a time with Elise lately. She seriously was beginning to seem as if she was diving off the deep end. She was waking during the night with violent tantrums that could go on for hours. She was spending entire ABA sessions screaming. She was displaying lots of irrational seeming fears, such as becoming terrified whenever she'd see something outside the front window. She began placing strange demands like her blinds had to remain open at night, she didn't want the video monitor in her room (she threw that across the room in one of her fits), I had to be standing up, not sitting. It was bizarre and incredibly difficult. She seemed to be in so much turmoil that I felt like she was in a living hell. She smiled rarely, if ever, had dark circles under her eyes, tuned us out and liked to lie down in the fetal position. She also was chewing her hair a lot. Fortunately, we have had a really good day today and I'm hopeful that we are past the worst. Here's my theories on this awful behavior phase:

1. We just this week removed gluten from Elise's diet. She may have been experiencing some withdrawal symptoms since the theory is that gluten & casein has an opiate effect on some autistic children. She was no longer receiving her "fix".
2. Elise has been using B12 for the past 5 weeks. We had given her some higher doses. Some children become very stimmy and hyper on B12. Elise was stimming more and was very irritable. Her doctor thinks it may have just built up in her system over time.
3. Often when Elise was waking in these rages, we noticed that she would start to calm, sniffle & then become enraged again. Then, yesterday evening, we noticed that she was fussing with her ear. We also remembered how her brother A used to wake in rages before we started giving him allergy medication (he no longer needs to take it).
4. Elise spends a LOT of time in her bedroom for therapy. She's always loved getting out of the house for adventures. She may be getting stir crazy being so confined.

OK, given the above theories, here is what we have done (corresponds by number):

1. We have continued the diet because if the above is true then that means diet is a big factor for her and we need to push through this withdrawal.
2. We have discontinued the B12 after speaking with the doctor who recommended it.
3. We started giving her Claritin in case she is having problems with allergies or a cold.
4. We spoke with her parent trainer about making sure that Elise gets out during her sessions to play outside or go for a walk at the very least.

We have one day of success with these interventions. We will see how things proceed from here. I can hardly declare victory after one successful day, but I'm hopeful. Elise played red light green light with her brother B tonight. She was stopping and running appropriately with little intervention from me and was really happy. It was good to see her happy again. I hope that the hell in which she's obviously been living lately is beginning to see the light of better things to come.

Same Sh** Different Day

Contrary to this title, I'm actually not as frustrated as it sounds. It's just the truth. I don't post as often because everyday is just more of the same. We're seeing steady progress, but no huge breakthrough. I'm happy that there is steady progress, but it sure would be great to fulfill the fantasy I have of waking up one day to having Elise no longer be autistic. The happiest dream I can even imagine is to have her come running into my room some morning, calling out my name and give me a big hug - all without prompting. I'm crying now thinking about that dream.

Elise had a fantastic week the week before this past week. We went casein free two weeks ago. Initially, it seemed that she may be benefitting from it. She was very alert, interactive & making significant speech progress. Her poops were also normalizing. We visited friends in San Diego on the weekend. We stayed in a hotel and did all kinds of things completely out of Elise's routine. She adapted beautifully. I have to admit that I was surprised at how well she did. Starting on Monday last week, things took a sharp turn in the wrong direction. Elise began stimming a lot. She started to seem very sensory sensitive again. A lot of the sensory issues she used to have seemed to return full force. She is back to squinting her eyes & pushing on them. She is bumping into all kinds of things. She's scared of sudden noises, like cars starting, again.

Worst of all, she started waking again at night. She woke on Monday night and was in the middle of a tantrum rage. I took her out of her room so that everyone else could continue to sleep. She began slapping my face, hard. She was completely out of control. I ignored her and she settled within a couple of hours. On Wednesday night, she awoke around midnight, again in a rage. We again took her to the playroom. She was completely out of control. I didn't provide her the opportunity to hit me again, but she was slapping her hands together very hard, threw over her play kitchen, almost overturned a very heavy train table and was thrashing & kicking wildly. Hubby came out to help me. We wrapped her in a big blanket super tight to restrict her movement so that she wouldn't hurt herself or anyone else. That enraged her further. B woke up and called for Daddy, so hubby went to be with him. I didn't want the boys to see Elise like that, so I put her in the car at 1:30 in the morning and went for a drive. We were gone for about 30 minutes. She was quiet as soon as we backed out of the driveway. When we returned, she began screaming as soon as we turned onto our home street. However, she was not in such a rage this time. We watched tv for a bit. Eventually, Elise got up and went to her favorite corner. She was whining a lot, but I ignored her and fell asleep on the couch. When I woke up, I realized that she was still standing in her corner, but was quiet. I called to her and asked her to come give me a hug. She came over to me, but when I tried to hug her, she began to cry again. She said "Up!", so I sat up. I tried to hug her again and she pulled away from me whining. I asked if she wanted to go to bed. She said "Bed" and held my hand as I took her to her room. She laid down in bed and fell asleep. It was 4am by this point. When she was so out of control, I became so scared. She's already strong. If we don't get this under control, we will not be able to handle her someday. Hubby realized this too. When we were wrapping her in the blanket, he looked at me and said "What are supposed to do?" It was exactly the way I was feeling and met more than what are we supposed to do in this particular moment. It was a horrible night.

She has slept well the last few nights. Let's hope that the worst is again over and this time will stay over forever. One thing to note is that on both Monday & Wednesday nights, she developed a stuffy nose during the night. When she sniffled, is when she would become further enraged.

We are very nearly gluten free now also. This week, I made GFCF chocolate chip cookies, bread & blueberry muffins. All turned out well. The bread was tasty, but was oddly shaped and HUGE. I definitely need to work on baking the bread. I may need to buy a breadmaker to get it right. However, it was a first try. I've only baked quick breads in the past, never a yeast bread. No longer eating out is difficult as is the lack of eating pizza. We didn't have pizza that often, but knowing that we can't have it is strangely difficult.

The babysitter is going on a leave for 3-6 weeks soon. Elise's therapist is working on putting together a social story with pictures to help explain to Elise that the sitter will be leaving for awhile but will return. I think that'll help Elise understand a lot. The grandparents are coming to help us care for the kids for 4 weeks. Otherwise, we wouldn't be able to keep working. It's not like a can just send Elise to a daycare setting or hire just anyone to watch her. She needs someone who cares about her, is patient & will work with her instead of just enjoying the fact that she will do her own thing and not ask for a lot of, or any, care.

I've called Elise's old chiropractor. I'm hoping to schedule a time to have her adjusted again. He used to be extremely helpful with her sensory problems in the past. I'm also going to get the name of a good homeopath from him. I trust him very much. He is extremely passionate about his work, but reasonable about where traditional western medicine is needed. He'll be good in helping us reach the balance between all the helpful options for Elise.

Elise's speech teacher began using a flute to work with Elise. Elise blows on the flute a prescribed number of times and then we ask her to speak. The words are often much clearer and stronger. It can sometimes be pretty amazing. Other times, I don't notice much difference. When it works, it's pretty remarkable to hear her speak so well. That little girl works so hard. Tonight, I was on the phone with my parents. She pointed at the phone. Hubby asked if she wanted to talk. She said "Talk" as she nodded her head. I gave her the phone and prompted her to say things. She said, Hi, mama, dada, Adam, apple & bye-bye. Her grandparents were very supportive of her and she looked really proud of herself.

One thing that has really been bothering me since Thursday is that her parent trainer is now going to begin to work with her on more oral motor skills. They will be working on teaching her to smile. I can't even explain how much it bothers me to hear that something as basic and essential as smiling needs to be taught to Elise. I hadn't noticed it before, but Elise no longer gives big smiles. Now, I'm crying again thinking of this. I'm starting to feel desperate about her again.

And Here We Are

There really is never a dull moment since the kids entered our lives. The past two weeks have continued to be eventful. I believe my last post was a one liner. That was the day that I was stuck alone in an elevator for an hour when I was leaving work to go home for the day. It was actually a terrifying experience to be pulled from the 6th floor to the 17th when I was trying to go down. It went at a faster pace than normal and sort of settled hard on each floor from 10 to 17. When it finally stopped, it seemed to still have a sort of motion. I really only noticed it when I was sitting on the floor, but it was scary. I spent my time waiting to be rescued by reading the school district's full assessment of Elise. I later found out that the elevator did exactly what it's supposed to do when it fails and that I was at no risk of falling. Would have been nice to know that while I was trapped! I spent the rest of the evening and the next day feeling sad and guilty because in the moments when the elevator seemed so out of control, I thought most of Elise. I thought of the boys and Carlos, but the thought that most pained me and my biggest fear was what would happen to Elise if something happened to me. I guess it's a compliment to the others that I know they are strong enough to make it through life without me. I fear that Elise would become lost again if I don't keep her anchored in our world.

We spoke with the lawyer last weekend and we signed Elise's IEP in disagreement with the placement recommendation. The lawyer will be filing our due process paperwork hopefully this coming Monday or Tuesday. She had a couple of cases to file before us, but she said she would get us a draft of the paperwork for our review late Sunday night. She also told us that she thinks we should be reimbursed for the private speech therapy we have acquired for Elise since the school district did not provide us any other option. She seemed confident that this would not be a problem. Since we've already dropped a bundle on her therapy and the costs are continuing to mount, we are happy with this potential outcome.

In addition to the great elevator escapade of Thursday the 29th, that was also the day that I found out Elise is apraxic. I accompanied Elise to her speech therapy session because her ABA supervisor was attending the session to learn what Elise is doing there. It became obvious to me at that session that Elise cannot handle a full hour of speech. She received 80-90% of the benefit in the first 1/2 hour. We have decided that it is much more beneficial to her to have 1/2 hour sessions. The therapist had told me this before, but logistically it's so hard to get Elise back and forth to speech, that I resisted changing to shorter sessions. Thursday convinced me and she now does only 1/2 hour sessions. It's definitely more bang for our buck even if it is a logistical nightmare. The ABA supervisor seemed surprised at all that Elise could say. I find this irritating since I've told her this many times. It proves that she disregards much of what I say - augh! Anyway, she made the offhand comment that Elise could be lazy about talking sometimes. The therapist cut her off and told her that she would never use the word lazy to describe Elise and speech. She explained that Elise has apraxia and that spending 1/2 hour in speech is like us working out for 1/2 hour on the stairmaster at the gym. It's really hard work for her and it's exhausting.

Over the weekend, B was sick. We all were very tired and we really just spent the weekend relaxing at home. On Monday night, I became really sick with some stomach virus. I went to work on Tuesday, but I only went because there is no way to rest at home with the kids. I was still without an appetite and very tired. On Tuesday at school, A threw up and hubby had to take him home. He stayed home sick on Wednesday, but recovered and returned to school on Thursday. Elise and hubby seem to have escaped this virus. Elise has never had a day of diarrhea in her whole life. This would normally be a good thing, but my intuition tells me that this is actually a link to an underlying medical issue for her autistic behaviors. If only I knew what the link was and how to fix it. She actually has been having big constipation issues the last two weeks. We've had to return to giving her Miralax because she was getting so uncomfortable. Finally tonight she seems to be improving and her belly is less distended.

Last night, we had our weekly meeting with the ABA supervisor. It was beyond horrible. Elise threw a tantrum when her nanny went home. We're supposed to put her time out when this happens. I did this, all the while being "observed", pardon me "judged", by the ABA supervisor. Elise did not settle, although she usually does pretty well when we put her time out. She's quite adept at reading that this was a different situation with the ABA supervisor there. When Elise cries, B gets very upset. He also began tantruming and hubby and I had to put him timeout. It was awful. The more he cried, the more Elise cried and vice versa. It became a vicious cycle and I felt that I couldn't take control of it the way I wanted to because it wasn't the way I was being "taught" to handle things. I attempted to continue the meeting and mentioned that I felt Elise's cry was no longer a tantrum, but was a scared cry. Whenever I checked on her, her eyes were pleading and terrified. She was standing in the corner with her little hands up to her mouth chewing on her knuckles. It was horrifying to leave her like that. The first 30 minutes were a tantrum and I have no problem following the protocol for that. However, I knew when the cry switched and I didn't stand up to the supervisor. I feel horrible for that. The supervisor asked how I knew Elise was scared and I told her because I know the differences in her cries. She looked at me like that was strange. Mothers know the difference, period.

On top of that, I was explaining that Elise would keep this up until she fell asleep for the night. This didn't phase the supervisor, but it pissed me off since our cousin was coming for a visit. We hadn't seen him in a year and since he lives 2000 miles away, we weren't going to see him again for quite awhile. I explained that Elise needed to see her uncle and that staying all night in time out was not an option that day. No solution offered of course. I seriously felt ready to lose it. I had to leave the room and let hubby conclude the meeting. As soon as she left, Carlos opened the door for Elise. She was still crying, but settled within a minute. Then, she clung very tight to me for 10 minutes. She would occassionally cry again and I discovered that she was having stomach pains. That was why her cry had changed. I felt like the worst mother in the world for not being there for her when she was in pain and needed my comfort. I feel very guilty for ignoring my instinct and listening to someone who is just passing through our lives.

Today I left work early to attend a mother's day party at the boys preschool. Each class sung a song and we had drinks and snacks. It was really nice. A decorated a flower pot and made flowers to put in it. B made a beaded bracelet for me. The school was crowded, so I parked far away. When I was walking from the car, I ran into another mother who has two boys almost the same age as my boys. Her youngest has been in therapy like Elise and there has been talk from her that he is on the spectrum. I know that I mentioned her in a post because I would get angry that she seemed to so obviously differentiate how her son was not as bad as Elise. Well, now I feel bad that I felt angry. She was doing that because she was in denial about her own son's autism. I can relate to that stage very well. Today she told me that he received a diagnosis yesterday from the school district. I told her that I was sorry to hear that because I know how hard it is to actually hear the diagnosis made, even if you suspected it. She seemed close to tears a few times. She is supposed to move out of the country this fall for her husband's work. Now, their lives will likely be turned upside down because she thinks she may need to stay here to get him the help he needs. She also has little family in the area, although she is very outgoing person and has lots of friends. I'm so reserved, but I finally just gave her a big hug and told her that there is so much reason to hope. I didn't say much more because I don't want to push information on her if she's not ready or doesn't want it. I offered that I could give her names of doctors we've used if she wants the diagnosis confirmed. As angry and hurt as I've felt with her in the past, there is zero satisfaction that this has sticken her family also. It's just awful, there's no other way to describe it. I feel very bad for them and the journey that they may just be starting.

That's been the synopsis of the last couple of weeks. And here we are - where will we be next?

OMG!!!!!!!

What a day! I'm emotionally spent and pretty much checked out for the day.

Educational Solution?

We had Elise's reconvened IEP with the school district last Thursday. We are returning the signed paperwork tomorrow morning. We are signing in disagreement to the instructional setting & the services. Our reason for disagreeing with the instructional setting is that we want her in the least restrictive environment. Our reason for disagreeing with the services is that Elise needs 1:1 BII/BID services with a non-public agency (her ABA provider) in order to support this placement. We are consenting to the implementation of speech and occupational therapy services. The best news we have is that the lawyer contact we had has agreed to take Elise's case. She works on a contingency basis, so she only takes cases that she feels she can win. I take that as a good sign. She feels we have a very strong case and we seriously hope that she is right. We really want Elise to benefit from being around typically developing peers. I strongly feel that the options presented for her education to this point are really just warehousing her and are not the best thing for her future.

This week has been ok with Elise. The weeks are just really difficult because the only time I spend with her is in the evenings when she's tired. When Elise is tired, her autism symptoms are exacerbated. It's just hard. I wish that I was able to spend more time with her when she's on so that I can feel that hope more often. It's just such an endless tunnel right now and we don't know when we'll see the light at the end, or if they'll ever be an end.

I read Elise's IEP report and I think that's what has turned my positive outlook a bit more negative lately. It's so tough to read assessments of where she is developmentally and see right there in front of me statements like "Deficits in cognitive ability will impact her ability to access the general preschool curriculum" and this doozy of a paragraph: "Elise's social development is estimated in the well below average range. Elise's academic skills are estimated within the well below average range. Overall adaptive skills appear within the well below average range." I really fail to see her "deficits" as so poor. She has so many strengths that are just overlooked. Yes, she's very autistic, but I really don't believe she has cognitive deficits. Her autism and lack of compliance often keep her from being able to demonstrate her vast abilities. This has improved dramatically with therapy. No one who has worked with her for an extended period of time seems to think that she is suffering from any mental retardation. On the other hand, no one will commit to saying that she isn't mentally retarded because she's so young, but we regularly hear that she shows lots of good signs. I know I'm her mother, but I think that she's actually really smart. Given how isolated she has been in her own world and the vast amount of time she spent with little to no receptive language skills, I am astounded by how many skills she has essentially self-taught. That takes a lot of intelligence. She is coming along, we just need to keep unlocking the chambers in her mind to open her up to the rest of the world and let us all in to take a look.

One huge positive is that she prefers to be with people rather than alone. She is actually quite social, she just needs to be taught how to interact because that learning is not innate for her. God, I love her so much. It kills me to read these kind of things about my baby.

On Sunday, Elise became really upset when hubby was leaving to take the dog out while the rest of the family was putting on shoes and getting ready to go to the car for a trip to the store. Those moments are always chaotic and stressful for all of us and she didn't understand what was happening. She left the house with me (she was screaming) and got into her car seat. As I was buckling her in to her seat, she began to calm. I looked at her and told her that I think it must be really hard for her not to understand what's happening. I asked her if it would help her if I always first showed her pictures of what we are planning to do next. To my surprise, she looked me in the eyes, nodded her head and attempted to say yes. I acted nonchalant about her response and just told her that I would start to do that. However, I was really stunned because I think she knew exactly what we were discussing. I'm also pretty sure that no one believes me when I tell this story, but I was there and I know there was a very clear moment of connection between us. These odd moments are what keep me fighting and striving for any possible way to help her.

I went out this week and bought lots of staples for our new gluten-free, casein-free (GFCF) pantry. Surprisingly, it has only so far amounted to $100 to stock up on all the various flours, starches, baking powder, bread mixes, etc... Now the real test begins this weekend when I actually attempt to test bake some recipes. We have GFCF Chicken Nuggets on the menu for Friday night and GFCF chocolate cake with GFCF chocolate frosting for Friday afternoon to celebrate the nanny's birthday. It should be interesting. Thank goodness I actually enjoy baking. A part of me is excited to get to make everything from scratch. It'll be an adventure. We have found good substitutes to a lot of the foods with gluten and casein that she currently eats, but we still have to find more. For instance, pizza & macaroni and cheese will be a challenge. She'll manage, it's her brothers that will have the more difficult time. However, I can't serve it to them because if it's in the house, Elise will definitely want it. We're also very dependent on bread for things like sandwiches. Hopefully some of the bread mixes I have and the recipe for GFCF bread made from scratch will be tasty. I've not been at all impressed with the store bought GFCF breads, but I've heard tales that the homemade are much better. Let's hope that's true.

We'll just continue plodding through the next few weeks and hope for the best. The bottom line is that Elise is steadily improving and, even though there's been no huge breakthrough like I dream about, the progress is continuous. Who cares if she gets there in one huge burst or slow and steady like a turtle? As long as she gets there.

Hope

It's continued to be really busy weeks. My work just becomes more and more crazy. It's a daily battle not to get sucked into really long hours. I wouldn't mind that ocassionally, but at this place, if a give too much, that much more will be expected. I have to stay focused that, yes, I need to work, but that my reason for working at this point in life is solely to provide for all the kids, particularly for Elise's extensive current needs. At least I'm becoming more comfortable with the environment in the office.

We continued to have another rough week after my last post. We became so suspicious of the GABA that she had started taking, that we pulled her off of it. Her behavior and temper tantrums improved immediately. As a bonus, her sleep has continued to be great, even without the GABA. It's weird that she didn't start sleeping well until we gave her GABA, but now that it's been withdrawn for two weeks, she's still sleeping well. Let's hope that continues. I've chalked up the GABA experience as a colossial failure. Another item to place on our checklist of treatments that do not benefit Elise. Fortunately, we have another, longer, checklist of things that really do seem to be benefitting her. I do need to contact her doctor to tell her about our experience with the GABA and make sure that we made the correct decision by removing it. I mean, there are treatments where the child worsens before they improve and I should verify that GABA wasn't supposed to be like that.

For treatments that do seem to benefit her, I am singing the praises of Vitamin B12. We started her on 500mcg last Saturday evening. She seems to be more engaged, attentive and communicating more effectively. She in general seems more aware of things. For example, she has this week started to indicate discomfort to us when she needs her diaper changed. Hooray because I REALLY want her out of diapers. She's also attempting more new words. It's too early to tell for sure, but I think this one may really be helping her. Time will tell, but I'm optimistic. The B12 has been shown to help some children with their expressive language. On the flip side, some children will become very hyper and stimmy when taking B12. We haven't seen any sign of this with Elise yet.

Next week, we plan to begin eliminating casein from Elise's diet. I've been reading a book recommended by her doctor about how to implement the diet. The book provides lots of recipes for gluten free casein free (GFCF) cooking. I've also switched Elise from Whole Grain Rice Milk to Almond Milk. She absolutely loves the almond milk. I'm going to practice some GFCF recipes this weekend, particularly baking recipes. I first need to buy some flours that meet the diet's specifications. It'll be an experience. My first goal is to find recipes that taste relatively close to the gluten filled things she already loves. My concern with the casein free is finding snack items for her to eat. She loves to have apples and peas for snack, which of course are acceptable. However, she is a kid and she also likes to eat chips and goldfish. Since these things are still around the house - I'm not sure yet if I want to committ to eliminating this for the boys also - we need to find suitable alternatives. It promises to be yet another experience.

This morning we had Elise's reconvened IEP. It was uneventful. We told them why we didn't want to accept the offer and what we instead wanted. They told us that they were standing by their offer. End of story. We sat there for about 30 minutes while they typed in the information to their forms. Since it was taking so long and we had to get back to work, we arranged to return tomorrow and pick up the forms. They think we're coming to sign in disagreement, but our lawyer has told us to let her read through them before we sign. We'll just pick up a copy so that we can share it with the lawyer. Fun stuff. We said that we wanted to proceed to mediation, skipping the informal dispute resolution step. We're so divergent on what we want versus the offer right now that I think the informal dispute resolution would be a waste of everyone's time. We have decided to push for a preschool setting with typically developing peers for approximately 10 hours per week. The entire time in school should be spent with a 1:1 BII (Behavioral Aide) from Elise's ABA agency. This BII service will include 6 hours per month of BID services. This is the director / supervisor of the behavioral interventions for Elise at school. We also want 2 hours of speech per week and 2 hours of occupational therapy per week. I don't know if we can get all of that, but we're sure going to try our hardest to receive this.

Not much else to report. I'm really hoping that Elise continues the progress that she has been on for the last week. Here I go again, fantasizing about the magic solution that will heal her. Could B12 really be a key for her? I know it won't cure her on its own, but it may be a real key in propelling her forward. I just want her speech to progress!

April already...

Time is going by so quickly. It's shocking to me that we've only been dealing with Elise's diagnosis for a little more than 7 months. It seems like a lifetime, even though time is flying. It's hard to remember life before autism invaded every aspect of everything.

Elise has had a rough week. It started going downhill last Sunday. She ate a lot of Easter candy, especially jelly beans. She became really irritable and, well, just addicted to the candy. She would point at the counter asking for the candy. When I'd tell her no more, she would drop to the floor and throw a tantrum. I guess this isn't all that unusual for a child her age, except that this continued for literally hours, endless hours. She would do nothing else but obsess about the candy. It was seriously disturbing. I have since confiscated all the kids candy and hidden it. I've told the boys that if they ask for it in front of Elise, the answer is no. I let them have some of it when she's not around. I've suspected for a long time that her behavior worsens when she has sugary things. After Easter, hubby has now bought into my theory on sugar also. She also spent some time when she was on her sugar high laughing inappropriately. We've been there before and sugar was big on those days also. A common link is finally discovered. Maybe diet will make a difference for her. We'll just have to try and see.

Since Sunday, Elise has been battling a cold. Therefore, she's returned to being very clingy with me and throwing big fits when I'm out of her sight. It's quite stifling and controlling. Augh! We've also discovered that she's becoming lazy about working. She tries hard to get away with doing the minimum required of her. Smart, but not helpful in continuing to push her development.

Elise is doing well in speech. She has a speech book where we've added pictures. She loves to look through it and practice the words. She seems to be trying really hard, but she's incredibly difficult to understand. For some reason, she has a super difficult time completing a word. For example, Ball is Ba, Cheese is Chi, Adam is Am, Me is Mm, Juice is Ju, you get the idea. She has a really hard time putting together two syllables. For example, Bubble is B unless you remind her to make two sounds. Then, she'll say B-B, but it's very disjointed. Same with Choo-choo (train is too hard for her to say). She'll say it, but the two syllables don't flow easily. I'm so proud of how hard she's trying but at the same time I'm so disappointed to see how difficult this is for her. It tears me apart to deal with the two strong emotions simultaneously without letting on to Elise that I feel any sort of disappointment. The disappointment is not in her, it's in the reality of seeing so plainly how impaired she truly is. Seeing her struggle in speech like that slams home the reality of how truly severe her situation can be.

Today was a really rough day for Elise. Her poor nanny. I think she was really upset by all the difficulties Elise had today. Her reaction to Elise's rough days is not much different than mine. It brings us both to tears. I know that she loves Elise because why else would she stay in such a difficult situation. When she told me about her upcoming surgery, her chief concern seemed to be how we would find someone who would be patient and supportive enough for Elise. She is an extraordinary person.

So today was rough primarily because Elise has such a hard time with changes in routine. I went into work late because I was taking Elise to visit a potential new preschool for her and Brendan. That broke her precious morning routine. On top of that, she shows up with her nanny, me & later her dad to sit in this strange school where everyone is talking about her. Then, she gets to go to a classroom where she meets lots of other grown ups and sees other kids and lots of fun toys. She sat down to have a snack with the other children and attempted to join in circle time (kind of, sort of). She was pretty much in her own world while we were there which drove the point home to me that she can only attend school with a 1:1 teacher student ratio. That includes the special education classroom settings. She threw a semi-tantrum about leaving a toy she was holding when we left and then threw a tantrum when we wouldn't let her play in the playground there. At least she showed her true self so the school knows how she really is.

We liked the school. The teachers seemed willing to work with her and include her in their classroom. We explained that she'll only attend if we have her behaviorist aide with her at all times. They appeared fine with that situation. The director seems willing to work with the situation also, although I don't think they're very experienced in handling a child like Elise. That makes sense though since that's not their job and we don't expect it to be. As long as it's a safe, nurturing environment that works to include her, we'll be very happy. I think Brendan would really like it there, but then Brendan likes it everywhere.

We're actually attempting to buy a house soon. We've finally gotten together all of our paperwork for the mortgage guy. We have a definite weakness in that we don't have enough savings right now, so probably we won't be able to buy for a few months. We were hoping to be under contract by 4/30 so that we wouldn't have to pay the exhorbitant taxes we owe on the 15th, but that's most likely not going to happen. We'll miss the federal first time homebuyers credit, but we should be able to get the state's credit and that'll help us a lot in the future. Either way, it's been a stressful week. Now, we have to figure out how we'll manage to pay our taxes next week with no money. I refuse to pay penalty and interest, so we'll scrounge around to make it happen somehow. I have to remind myself to stop throwing a pity party for myself and just be happy that we probably will be able to make this happen if we scrounge hard enough. It would be worse if we truly had no options. However, we're getting dangerously closer to that prospect. It cracks me up that we can't afford a home, but we can't afford not to have a home. I guess we're just the people who don't fit the mold and slip through the cracks of the tax code. Anyway, with taking care of all this home buying thing this week, we have managed to be extra stressed and less attentive to the kids. Not good for them, but a person can only do so much. This too shall pass. I seem to say that far too often.

Elise began taking GABA last Sunday night. It seems to be doing wonders for her insomnia. She's regularly sleeping the night now as far as we know. On the flip side, she's much more spacey and stimy during the day. My theory for this is that she used to take 2-3 hours each night to unwind and have her alone, down-time. Now that she's sleeping, she never has this opportunity, so she spaces more during the day. Still, it's more important to have her sleeping well. Hopefully as she adapts, she'll learn how to need less time to unwind and have alone, down-time.

Tomorrow I'm going to pick up B12 vitamin for her. We're hoping this will help with her expressive language skills. At this point, our number 1 concern is to help her develop expressive language. There's a lot more to tackle, but this is at the top of my list. Let's hope we're one of the lucky ones who see good results with B12. Some children apparently get very hyper and stimy on it and therefore can't use it.

After we spend a week on the B12, we'll start eliminating casein from her diet. Then, it'll be gluten. She'll spend at least 3 months on a gluten-free, casein-free diet. We'll then evaluate whether the diet helps her or not. If it does, it'll become a way of life. If it doesn't, well, we'll know that we tried it and we'll never have doubts that we missed something obvious like diet as a way to recover her.

Enough of this, I suppose that I should get some sleep now. Tomorrow I contact our new realtor & the advocate we plan to use. Elise has her IEP rescheduled for the Thursday after next. We need to have a game plan in place by that time so that we ensure we're on the right path to getting Elise the option we want of private preschool with a 1:1 aide.

Good night.