Four years

It’s hard to believe it, but time doesn’t lie. Four years ago was one heck of a busy and hectic travel day. I will soon say that I’ve known my kids for more than half their lives and that’s a milestone I am looking forward to bust.

Looking back at the past four years, I can’t say they were all rosy, but I can’t see it being any other way. It’s like sour candy: you pucker and question why on earth you bit into it, yet you finish it up and long for more.

If I had to plot out the feelings of dismay versus feelings of pride and happiness, I would say they balance each other pretty good. How do I know? Because depending on whether it’s a good or a bad day, feelings swing either way, so I suppose it must be pretty much right down the middle! There have been very frustrating days where things just seem to get from bad to worse, but somehow they turn around and you feel like everything is inching slowly forward. Don’t get me wrong: the feelings of disappointment simply stem from the gap between my often unrealistic expectations and the burning desire to see them succeed and make significant progress, whether academic, physical or behavioral.

Whether you like it or not, as a parent you inherit your kids’ struggles and you have to learn to distance yourself from them and do the best you can to overcome them, even though the realized gains are often had at an excruciatingly slow pace. I keep telling myself this, but end up doing a horrible job of actually walking the talk. It does get easier though when you can look back at four years and see the progress had over this journey instead.

Enough sour candy and philosophy! It’s summertime and the kids are out of school. Oh yeah, about that…we were in a little bit of a bind at school’s end. Someone was going to watch over Isaac for the summer and then bailed out a day before the end of school. How about that for a heads up? Luckily Lori managed to find a really good daycare that accepts special needs kids and doesn’t look like a dump. It’s actually very nice and the lady is plain awesome. She used to work for Houston ISD as a Special Ed. teacher and now does this full-time, and also for siblings of special needs kids. She knows how to deal with their behaviors and Isaac has taken to her really well. So far it has been a pretty smooth first month with a couple tiny dips that she knows how to handle with grace. The great thing is that there are only 2 to 4 more kids, sometimes even less, which is the kind of environment that Isaac fits in the best it seems. She is also making him work rather than just “deal with him”, which is what past daycares did really, such as put him in a high-chair and let him suck his fingers in front of mindless TV. How about that for “Montessori”?

Isaac is engaging in communication a little better these days and is starting to make a sincere effort at making certain sounds as he tries to say complete words. I can’t wait to see this little clown finally able to express himself. He’s doing better at eating (thanks to a secret helper in the form of a white, creamy liquid!) and is finally outgrowing his clothes and thickening. He doesn’t seem so fragile anymore, thank goodness.

Isabella goes to her school district’s summer camp. She was in the same program last year and loved it. We started well this year and went downhill pretty fast. So fast in fact, that she came very close to getting kicked out. It seems we have to re-live this script every year and it gets quite…shall I say, annoying? After several speeches involving phrases such as “this is your LAST chance and you’re out”, it seems to have finally sunk in. Fingers crossed as in a week or so her offenses get re-set, but she doesn’t know that and we’re not about to advertise it! But as parents, we can breathe a sigh of relief if she gets through unscathed. Here she is on Galveston island at the annual AIA Sandcastle competition.

We’ve done a little bit of swimming and Isabella got her first US ear infection last week. We had to go to the doctor this weekend as it got pretty bad, but I’m happy to report that she’s already feeling much better. The kids have also started to go to church with their mum a couple times a week, where Isaac participates in a special needs kids program. They both enjoy their time there and seem to be making lots of friends. This gives me some nice alone time to catch up with my other intellectual endeavors. What, you thought I was going to say “to catch up with cleaning”?!

Isabella and I still go ice skating every Saturday. Since they have now changed their coaching policy (no coaching during public skate), we started going to the longer, quieter basic freestyle session and I am personally enjoying it a lot more. Isabella likes to tag around and play a lot more than she likes to practice, but what can you do? I nag her and sometimes she does practice a bit, especially when it quiets down towards the last hour and I become her victim to be pestered as I try work on my crossovers. Skating is the only time where I feel I could possibly be the one disappointing my daughter, but I’m giving it my all to make her proud.

9 months and counting

I cannot believe we’ve been home for 9 months already! Time sure flies. It seems like I’m at Texas Children’s hospital at least twice a week lately: once in the Medical Center for an appointment, and once in our neighborhood for Occupational and Speech therapy. I wish they had a frequent-flyer type discount program, especially for the parking garage!

So it turned out that Isaac does not have a busted ear drum. It seems that his issue is negative pressure behind the ear drum, which is causing them to be sucked inwards, creating a large canal volume. Large? Yep, at least now that there’s no more foreign matter in there, they’re larger than they should be. So the ENT doctor suggested trying some nasal spray or put in tubes. I had visions of trying to get Isaac to inhale a spray from his nose…it took me 10ms to decline and opt for surgery. So Monday we’ll be putting in some tiny tubes to equalize the pressure and help those drums slowly ease back where they belong. The doctor said that having the drums so far in might be causing him to hear muffled noises instead of clear sounds. I sure hope that’s the case and that we’ll observe some speech improvements.

Sunday 28th March was a one-of-a-kind experience. An expensive one. Isaac had a seizure around 7:50am upon awakening and he wouldn’t come out of it. We waited and then finally decided to give him the usual gel shot, which in all previous cases worked within 30 seconds or so. Not this time. 5 minutes later his convulsions started increasing again. So we did the inevitable and called 911. Within under 4 minutes, the ambulance and fire truck were at our door and about 5 EMS guys flocked in with a ton of gear. I have no idea why a fire truck is sent in such cases. Anyway they gave him some more meds and transported us to the hospital. I rode with the ambulance and Lori got ready with Isabella and drove there. Isaac’s convulsions almost stopped but not completely. At the hospital they gave him more meds and after another 10 minutes or so he finally stopped and fell completely asleep. He did kick a bit, which was an indication that it was over. We got there around 8:30am and left at 1:00pm. That was one expensive stay in the ER judging from the bill we received today. We’ll see how much our beloved insurance carrier is going to pick up from this tab. I have not seen an ambulance bill but I’m sure it will come separately. If I get one from the fire department I’m gonna be mad as I didn’t get to ride at least! That’s a hint for you neighbor ;)

All this talk of hospitals is surely boring you out of your mind, but I’m not done yet. We had a visit with a clinical psychologist and she suggested we try a stimulant (like Ritalin). So after yet another appointment with the pediatrician, we started him on a very low dose: morning only. He seems to be doing better, although the bad side effect is that he won’t eat lunch or drink anything. So we’re monitoring his weight now to make sure his change in appetite was due to this medication and not some cold (which is common right now and he was quite congested this last week). So on the 22nd we’ll visit the pediatrician again to see how he’s reacting. In general he’s been less aggressive at school and seems to be settling in a lot better. The fact that we have not received any “hints” is a positive thing. A couple weeks ago they were concerned because he was trying to bite the teacher’s hand (this was before the meds) and told them that I would see if Mrs. C (PPCD teacher) would talk to them and give some advice. She was super nice and went to the pre-school for two hours or so one morning with her assistant to observe, take notes and make recommendations. They were delighted and I think they feel better about the situation now. We’re very grateful to have her so involved in his education. In a couple of weeks we’re hoping to go back to a normal routine of full days as in the meantime Lori is still picking him up at 3pm.

Yesterday we had a visit with the Neurologist and we’ve been referred to an Epileptologist. We talked for a while about all sorts of things I’ve been reading about, and she helped us to separate facts from fiction. She ordered some more tests so afterwards we took a trip down to the third floor to draw blood. Needless to say he wasn’t happy as the nurse didn’t get it right and as usual, tried to re-work the needle back and forth. I stopped her immediately and asked her to try again on the other arm. This time she was successful and we were out of there around 1pm, $10 poorer after paying for parking (this is getting old!) and back home for PPCD class by 1:30pm.

Isabella had her first speech therapy session on the same day and time as Isaac, which at least saves me some time in the morning. So Tuesdays are going to be intensive therapy days…OT for Isaac at 8am and then ST for both at 8:45am. During the 45 minutes waiting for Isaac, Isabella and I spend some time reading books. She’s been enjoying that especially now that she understands English better. Once we’re done at 9:30am, I drop her off first, drive back almost all the way home to drop Isaac and then off to the office, getting there around 10:35am if I’m lucky.

At school she’s been learning a lot. I think one day they learned about what each “liked” because we’ve been hearing phrases using that word all over the place. “Wow, I like it!”; “Do you like me?”; “I don’t like that”. So she keeps asking if we like her and even after telling her “yes”, or that we do like her a lot (which usually prompts more questions such as if we like Isaac and then proceeds to pose the question for each family member, pets included), she keeps asking if we like her over and over. I think she just loves to hear it and knows she’s starting to annoy us after questioning 4 times in a row. Every once in a while, to get back at her I start telling her “I like you Isabella!” to which she responds “I know, I like you too” and after about 3 repetitions she finally sighs and loudly says “Ok papa, I KNOW!”. Another game she loves is when asking if I like her clothes and I just sit there saying “hmmmm..”, looking up in the air with eyes going from side to side, rubbing my chin as I “think” about it and then blurp “NO!”. She giggles, laughs and asks again. I swear, we could easily keep this up for an hour unless I stop.

So what else did we do for fun besides the above and taxes (took all day last Sunday!!)? Lori got the kids some Easter gifts and they had a lot of fun with them. At school they had lots of activities with egg hunts and such. Since Lori’s been working Saturdays, I’ve been with them pretty much doing nothing but tending, trying to do some “work”, screaming, playing, feeding, and constantly, I mean CONSTANTLY watching Cars. Isabella is absolutely fixated and loves it so much! We have to watch it at least twice every weekend. I don’t mind really ;) Once they’re up for nap time (Isabella usually doesn’t sleep), I get a breather and some stuff done. No wonder it took me so long to get the darn taxes filed!

This month we begin celebrating a lot of “One Year Anniversaries”. Just yesterday was the OYA since our dossier was submitted. And there will be lots more to remember in the coming weeks. The kids are ready to jump in and start swimming. The filters have been cleaned, the clogged vacuum thingamajiggy  plumbing is once again wide open after buying an appropriate tool to clean it out and lots of work remains hanging, like washing and detailing cars, trimming bushes so you don’t have to walk sideways in a ducked-position to miss the overgrown branches…you get the idea. Now it’s time to give my fingers a rest and stop yapping.

Dealing with Rejection

Never in a million years did we ever think that pre-schools would discriminate so much. We couldn’t find another school to keep Isaac and they all had some excuse. Potty training was a problem due to age (teachers of 4 to 5 year olds do not want to deal with it, plus they don’t have facilities in the classroom). They wanted to try Isaac out with 2 to 3 year olds because of that, and we were not against it as Isaac does not act his age. His behavior is probably that of a 3 year old, sometimes a bit younger. We’ll find out in approximately a month when we do a neuropsychological evaluation.

We had a hard time in our search as our options were limited due to the school district transportation, which restricted us to about a 2 to 3 mile radius from the Elementary school. We explained the situation and hoped they would show empathy but that didn’t happen. We knew the first few days would be testy as Isaac pushes the limits until he starts trusting. He can’t help wanting to explore around and seeing how everyone around him reacts to his intentional misbehavior (throwing blocks, etc.). Yet schools showed absolutely no patience. One school didn’t even give him more than a 2 hour chance and immediately said no. We were very hopeful as the director had orphanage experience in India. I have to say we were very disappointed with the outcome. Another school just took a look at him and declined. Another one gave us a day to try him out and declined again.

We had a good prospect at another program very close to our house in a church. The facility was very nice, with small classrooms and very nice teachers. However I felt the director was a bit too uptight and snobby. Once Isaac was on test for a week, she kept calling us after an hour or two of dropping him off to come pick him up because he misbehaved (kicked for example). How much damage can a barely 30 pound little boy do? I spent a good amount of time talking to his teacher and she had not seemed concerned at all, but I think the director was just looking for an excuse to not keep him there. On the third trial day once I dropped him off in the morning, she told me it wasn’t going to work out. Nice, wait for me to drop him off to tell me that, instead of calling the day before. So after some B.S., telling me how much she’s going to pray for us (bla bla bla), we left and started searching again. More than disappointment, I was very upset with them as I surely expected a church-based organization to show more empathy. But no, let’s reject a kid that clearly needs help. But we should feel better because they’re praying for us! What a load of bull.

So in the meantime, we had a lot of juggling going on. I worked a lot from home so I could stay with Isaac and worked weekends to try and catch up (and minimize the risk of getting fired!). Lori started working early at 5am so I could drop him off to PPCD at noon, go to work at the office and Lori would finish work at 2pm and pick him up at 3pm. She’s still on that schedule for now until things stabilize. At least my employer has been very accommodating and Lori won’t be able to change her work schedule for long.

We finally found another daycare and they gave us a shot. As usual after the first day they starting waffling but Lori managed to talk them into trying a little harder to give him a chance. We told them what we’re trying to do and decided to keep up our schedules for now so as to only leave him in daycare for about 3 1/2 hours in the morning. That way they can slowly get to know him and hopefully not be so apt to show him the door again. So far it seems to be working and they’ve been patient. Transportation resumed on the second day after spring break, so he was back to PPCD on Tuesday and now they’re also going to start monitoring his behavior issues to build a case for getting more services in summer. Miss C. is very nice and it’s a blessing to have her as his teacher. Isaac needs a lot of structure and consistency so we’re hoping that he will settle in after a few weeks of constancy.

Is there an upside to the story? Yes. Isabella has improved drastically without  Isaac around. She spent too much time being distracted and concerned with him and in his absence, she is a completely different person at school. Her English has taken off big time over the last weeks. So in a way, this has been a good discovery as we never thought of sending them to separate schools.

Finally, I’d like to close this post by quoting from an email I got:

I have read your blog for awhile now, but normally do not comment. But we also adopted 2 kids Nov/Dec in 2007 and while our kids are not "twins" they are less than a year apart - boy and girl. We have gone thru a similar situation with our son (although we avoided getting kicked out of preschool - but not by much) and our daughter sounds very much like yours. So I wanted to let you know that you are definitely not alone and I hope that things get better for you. I know that we still have struggles with our son …we had problems at the school because the other kids were giving him a hard time (due to a physical deformity) and he knew no other way to react except to get "violent". Either way I wanted to let you  know that you’re not alone and maybe there is a better school for your son where the people will be able to help you out (that happened to us we started w/ home daycare and ended up at their preschool) blessing in disguise. Good luck.

Thanks for the kind words of encouragement. We know there are other families in far worse situations than ours. Our kids have faced rejection before, but we’re here to ensure they continue growing up in an inclusive environment. It’s quite appalling how some people just shut their doors when it comes to kids with special needs. Anyway, if someone reading this wants to learn more about their rights, take a look at this page on the Americans with Disabilities Act website.

 

 

 

 

 

 

 

 

 

Above are some more photos from today’s AGC cook-off. Until next time!

Kicked out!

Isaac is a funny little fella. You’ll mostly hear him laugh his heart out. In fact last week the PPCD teacher, Miss C, said that the halls were too quiet without his laughter last Tuesday when we skipped due to the ABR test. However something just wasn’t right at pre-school with Isabella.

Over the last few weeks he’s changed his attitude there and has been totally uncooperative. He’s become more aggressive, kicks, bites, slaps…anything except comply. He’s lost interest in anything and is just not being himself. We thought that since we’ve changed his medications that it could have affected him and in fact we’re slowly switching back to the previous one, but now we’re not so sure anymore that it was to blame.

By the end of last week, they told us that if he doesn’t get better, that they wouldn’t be able to keep him anymore. When he gets that disruptive, he has a negative influence on Isabella’s behavior. We tried talking to him over and over. He didn’t act any differently with us over the weekend and hoped that the slow change in meds might start restoring his behavior when not with us. Well, that clearly didn’t happen!

This morning we had the ophthalmology appointment. We’re going to get yet another set of lenses (bifocals) as his eyes are still crossing. He’ll be seen again in 3 months and then the doctor will decide if he’ll need surgery. Anyway, the above photo was taken at a stop light just before I dropped him off. He was doing fine, in a good mood, having fun with loud music going and generally goofing around. He dozed off towards the end of the trip and that’s when I snapped the photo. We checked in at 9:30am and at 9:45 Lori called me with the news. 15 minutes flat!!!! Is that a new Olympic record or what?

While we’re being inundated with scenes of proud fathers and mothers with their children as Olympic champions, we stand here with our son being kicked out of pre-school. *Gulp*. I hope this isn’t the first in a series of educational mishaps. Miss C. reported that he had a very good day with her today. We’re beginning to think that something must have happened at pre-school to change his attitude. Hopefully we’ll soon find a better fitting place where he’ll be back to being Isaac again in no time.

Late New Year post

I’m a little late to talk about the New Year (been busy, sorry!) but I have to acknowledge the fact that this marks the first year that the kids will be completely with us. 2009 was half and half but the beginning of 2010 marks a new chapter in their lives.

On December 31st we went to Sugar Land’s New Year celebration. It was quite cold so we bundled up and after a dinner at a pricey restaurant that wasn’t worth the charge, we headed to Town Square for the party. Lori didn’t think we should do anything, citing “they’re too young Dave!” but I wasn’t going to have any of that. So what if they’re young? I wanted to make the start of the new year memorable and I think we succeeded. They loved the loud music and wouldn’t quit blowing the whistles on those horns!

 

 

 

 

They were in awe when the fireworks started. It wasn’t a big show but for them it was truly fascinating. The expressions on their faces were a lot more precious than the fireworks themselves.

We left soon after and at around 12:35am we made it home. Lori took them in and I stayed in the car waiting for them to go inside through the garage so I could pull in. I did and as soon as I got out, I heard loud shrieking and crying from Isabella. Great, 40 minutes into the New Year and we have a tantrum? So I approached the door and it felt like a scene from a scary Halloween movie….there were bloody smudges all over the door!! I rushed in to find Lori attending to Isabella with a busted lip. Turns out she ran towards the door amidst warnings from her mom to not run, but being Isabella she ignored her and carried on, finally tripping and busting her lip against the door knob. Now that’s what I call memorable!

Isabella has been getting more and more hard headed. We see a lot of new-found independence in her, but we know this will get her in trouble. Needless to say we’ve also been getting a lot more strict with her. We like seeing her independent spirit but she has to learn to listen, judge and then act. Right now that’s not the case and she acts very impulsively. And she ignores authority in most cases, such as when we or the teachers at school tell her not to do something. She always finds a method to get her way. She’s learning that we’re not about to put up with that though. Ignoring her tantrums has slowly been yielding some results. We also have found a few things to trigger her brain to think before acting, such as threatening to not send her to school and put her in the closet under the stair instead ;) Just last night she was doing fine, Lori took them to bed and all of a sudden she goes into a tantrum, shrieking and crying and making a ruckus. After a while I calmly went upstairs and told my wife “don’t worry, I’ll take her down to sleep in the closet”. She continued crying saying “no no not the closet!” and I took her up to the top of the stairs. Then after stopping, I asked her if she was going to quit crying and after confirming, took her back to bed. I fixed her sheets and tucked her in, gave her a kiss and the crying stopped. Mission accomplished! I think we’re finally beginning to make some connections between actions and consequences. And no, we’re not seriously going to lock her up in the closet!

Now Isabella has her ears pierced. She’s very strong and didn’t even flinch when they pressed those ear-rings through. Lori couldn’t believe it. She tried to take them off a few times but didn’t have much trouble with her keeping them on after that. Which is surprising given her fixation sometimes.

Isaac has started PPCD and he’s been doing quite well. He’s getting a lot of one on one attention from his teacher, who’s really nice and loves kids a lot. Going in the afternoon turned out to be a positive move as he’s the only one in class. There are times when he’s also in the company of one or two more kids, but that’s still a really good student to teacher ratio. He is getting speech therapy twice a week and seems to be enjoying himself. It was a bit of an adjustment due to him being used to an afternoon nap but on the whole it’s been a smooth transition.

Changing Isaac’s medication has not yielded the expected results. His seizures have actually increased and his behavior has really degraded in pre-school with a large group and receiving no one-to-one attention. Because of that Isabella has also been losing control. Nothing has changed at home and Isaac still acts fine with us, is very affectionate, funny, etc. We have no attachment issues with both of them, but at pre-school all of a sudden he has become more aggressive and unsocial. So we’re thinking it’s his medication that is to blame. Coupled with the fact that seizures have increased and he’s now exhibiting a new type too, the Neurologist is switching him to a new drug which we’ll start on Monday. It’ll take a few weeks to take him off of it and switched completely to the new one.

We have started weekly Occupational Therapy sessions for Isaac and those have been going quite well too. In the coming month we plan on starting speech therapy for both. Isaac’s receptive language continues to improve, but his expressive language has not developed much. He’s slowly able to make some new sounds and mumbles, probably thanks to S.T. in PPCD. This coming Tuesday we have an ABR test which will hopefully reveal some new things with respect to his hearing. We’re obviously hoping there is a fix, but I’m not holding my breath. On a positive note, Isaac seems to be getting the hang of cycling now and can do it on his own on a tiled floor. We’re going to keep practicing on the tricycle as he’s still not yet ready for cycling on a bicycle. Isabella on the other hand is ready to bite the dust and she’s very dangerous already! She has a lot of balance and strength.

At pre-school they have been keeping Isaac away from his class and a lady’s been spending more time with him. He acts just fine that way, so we’re quite confused. We also found out (let’s say “confirmed”) that Isaac was being restrained quite regularly at the orphanage. This came from an account of a foreign adoptive family who adopted from the same orphanage back in 2007 and knew the twins. They sent us a couple of photos of the kids when they were 2 1/2 years old, which is quite nice to have. It’s remarkable how much they looked alike when younger! Anyway, they said they saw Isaac tied up to the fence when the other kids were running around. I’m actually surprised that Isaac isn’t more mad at people in general and is still such a happy kid. Hopefully he’ll forget about those years and those experiences won’t result in long term effects.

Not seeing her brother acting up has improved Isabella’s attention and behavior in her class. She can become a little obsessive about things (like wanting to constantly change out of dirty clothes!) and she knows the rules and how everyone else should abide by them…except herself. Funny little thing.

And then the glasses…Isaac finally made the first pair vanish. They looked for them at school all over the place, but couldn’t find them. I wouldn’t be surprised if he flushed them! So we got a new pair and they fit much better. We also clip them to his shirt to try avoid such accidents. I think these are more comfortable and he hasn’t tried to get rid of them except the first few days. I think he got the message loud and clear that Mama and Papa are not gonna buy glasses every 3 months! Here’s a photo of both just before we got the new glasses.

We also got some great photos of Nikopol in winter from Carol. It’s amazing to see the change in landscape from the time we were there to now. We don’t think the kids changed that much in the same period, but for us it’s difficult to see those changes since we’re there every day. So here are some shots of places you might recognize from previous images we posted. Until the next post!

I can’t believe the kids and I went for a swim right in the area between those trees! Click here to refresh your memory.

 

 

This was the ATB super market that we visited pretty much daily. I’ve witnessed a lot of water on this road one day but never pictured it looking like this in winter.

 

 

I really know why they named it “The Penguin” restaurant now!!

 

 

 

Can’t remember how many weddings we’ve seen at this hall or how many times we crossed the street here. Where are the fruit vendors?? Oh, now I also understand what that white paint-looking substance on the tree trunks is for. Didn’t make much sense when seen in summer!

So many hours spent here chasing “Maxim" after constantly running away from the area. So many encounters with kids to play with and snacks consumed.

 

 

Too bad kids aren’t allowed to go out and play! But then again, I’m freezing just thinking about it. Gotta go make me a nice hot cup of cappuccino :)

December recap

Time flies by really fast. I didn’t even write anything about Thanksgiving and here we are on Boxing day already. It has been a very busy and difficult month. So get yourself a warm beverage of choice ‘cause this is gonna be a long one!

Thanksgiving was nice and we had O and family over for a great dinner. As usual, my wife cooked a ton of food and we barely finished it all several weeks later (there are still some sweet potatoes in a small container that I’m afraid of opening to throw away….weary of something similar to  the curse of Tutankhamun happening!). The kids did fairly good considering the change of conditions (change of routine is not their friend), although we had spurts of crying, which we’ve come to expect pretty much all the time now.

For some odd reason once my parents left, the kids behaved a bit better. I’m not sure exactly why, but I think it had something to do with the change in their environment once again. We could have sworn that Isabella was going to drive us nuts asking “Where’s grandma/grandpa?” after they left, but it didn’t really happen. I guess that’s not such a bad thing because they realize who’s mama and papa and didn’t get confused (which was something the pediatrician was worried about). We have no doubt that bonding has been close to perfect for all of us. The twins both recognize their grandparents now, even when showing them some old video from past travels to Malta for family visits. We have been video-Skyping with them too and the kids play along and respond really well.

On the health front, we’ve been very busy. Isaac has been doing very well in Physical Therapy and we finally got some slots in for Occupational Therapy, twice a week. Unfortunately next year our benefits for therapy are very limited (thanks Health Insurance companies for keeping us hostage for the good of your own shareholder profits) and according to some estimates, we can only get a total of about 12 sessions next year (that’s both P.T. and O.T.), which is not even close to what Isaac’s needs are. And oh, last time I was mistaken about the cost of a 45 minute session; I was told that prior to meeting our deductible, it’s $309 per session!! I sure hope that’s incorrect (perhaps that’s not the “discounted” rate) and if so, we might be able to get a few more in than currently estimated. Isaac is having a bit more trouble with O.T. as keeping focus is not an easy thing for him. Due to our situation, they told us that they would be able to work with us on a home program to help cut down on clinic visits, which we’re very grateful for.

We also had a developmental evaluation at TCH. The interview lasted for close to an our and a half and the clinical psychologist observed the kids and listened to our stories of the kid’s past, their behavior, etc. We were very encouraged that she didn’t see major behavioral issues, as she said “Remember, they’re very young kids!”. We’re new parents and have nothing to compare to except our own childhoods, so we’re quite lost at times (make that “all the time”!). We spent some time discussing how we can improve our parenting skills and she suggested we read the book Parenting the Strong-Willed Child. I’m almost half way through and I really recommend this to all parents, not only ones with strong-willed kids. Actually after reading through descriptions of strong-willed behavior, I can say that the twins don’t come close to being THAT difficult, although they do exhibit a few “symptoms” (Isabella in particular) which I think are mostly the result of attention deficits. The tips discussed in the book and the general approach to communicating with kids has already helped me a lot over the last weeks, especially in focusing on rewarding good behavior, which is very hard to do when you’re so consumed with the bad x 2 kids! However this shift in focus has actually improved the bad behavior a LOT. More on that later.

We also had speech evaluation and Isabella did pretty good, although she can definitely benefit from some speech therapy. Lori was impressed with how much she seems to be learning in pre-school. Her lack of concentration is an issue and you have to constantly remind her to keep her focus, snapping your fingers, making loud noises (like clapping) etc. If something interests her a lot though, it’s getting easier to maintain involvement. This has become clearer when they watch TV, with her attentive stint usually longer than that of Isaac. His evaluation went fairly well too and as expected, he definitely needs a lot of help through speech therapy. On the upside though, it seems there are no other issues impeding his speech development besides the obvious. In a few weeks we’ll re-test hearing after doing further ear cleaning last week.

At the Developmental evaluation they suggested we look into PPCD, especially for Isaac. The diagnosticians at our school district have observed the kids in their pre-K environment and then looked more closely at Isaac in our Elementary School. There hasn’t been a 100% conclusion yet but it’s almost sure that Isaac will be admitted in their half-day program. He’ll receive a good amount of P.T., O.T. and Speech therapy through this and we’ll see how he progresses. He made a positive impact on the teachers with his friendly temperament, even though he had a bad start that morning due to another seizure which required a shot of Diastat.

Speaking of seizures….persistence paid off and we got an appointment for Neurology. We’ll be changing Isaac’s medication as his current one can have an adverse effect on liver function and is not controlling his seizures anyway. It took about 4 days to cut through the red-tape and get it (thanks again, Health Insurance companies). They approved it just for once and we’ll have to go through some process to perhaps get them to cover the medication in the future. It cost us $50 for just this one bottle, so don’t think we’re getting it for free! Doctors and specialists act in the best interest of their patients and prescribe appropriate medications. However we then have to wrestle with Health Insurance companies, who seem to know better what’s best for our health (their pockets, really). If you can’t tell, I’m really ticked off at the complete waste of time resulting from this. Anyway, we also had a follow-up visit with the pediatrician who has noticed positive improvement. Both got the flu and H1N1 vaccines and Isaac also got two more immunization shots. We’re now waiting for the results of a couple more blood tests on him. As you can see, quite a busy month!

Behavior was becoming an issue at school, where Isabella started imitating her brother’s bad traits, laughing at the teachers and running out of class. We were very firm and consistent, putting her to bed early on each occurrence, causing major meltdowns. A few weeks ago, I even had to “take the bike back to the store” and Isabella would constantly ask for it, questioning “Isabella good?”. It is quite funny and endearing actually, but we held off to see if she could have two good days in a row, which didn’t really happen. Then the worst behavior at school started and that’s when we resorted to even tougher consequences. I spent some time talking to her after she gained composure and seemed more thoughtful and focused about the situation. Next day we seemed to turn a corner (on Tuesday 22nd) and she was SOOO excited to have behaved well in school that she couldn’t wait to have mama call me and let me know about it. The questioning tone turned into an enthusiastic “Isabella good!, Isabella GOOD!” and so I promised to “get the bike back”. After pulling into the garage, uncovering the bike and taking it in, I was greeted with a shriek of happiness and some more “Isabella good”. I’ve been really making a huge effort to be sweeter and more attending to her, and she’s responding very well. Lori was already sweet and attending (papa was the tough one) but I’m adapting to a different style than what worked with me as a kid! The book mentioned previously gives some great tips on how to make this work but it does require some effort to change your thinking.

We also had a couple great days when Carol came over and visited for a few days. The kids enjoyed her company and she could see them doing better than the last time she saw them when departing Nikopol. We also met up with the Bush family in Discovery Green (which we termed as “The Houstonian Nikopol Reunion”!). Lori couldn’t make it after being hit with food poisoning late that afternoon. I didn’t do too bad with both kids by myself as I had Carol’s help (like old times eh??). I goofed and lost my bearings after parking in a garage structure, so we got there extra late. Shame on me, but next time I’ll remember that there’s a parking garage right under the site…duh!! We had a great time though and always enjoy some great company. Lucas and Emma are very well-behaved and sweet kids, which is something we aspire to see our kids grow into. We have a looooong way to go!

Isaac and Isabella finally met their other Grandpa. It took a while for it to register that they had another Grandpa, but I think they got it. They kept asking “Grandma too?” but we just said that only Grandpa was coming and left it at that. We went through the same ritual of explaining that this is Mama’s Papa and so on and so forth.

And then there was Christmas Day (I promise, I’m almost done with this novel). Lori bought them a ton of little gifts, some of which were intended to drive me nuts, such as a drum set. So far I have not seen extraordinary rhythmic talent, but we’ll give it a longer chance ;) Their absolute most favorite toy was a personal CD player. Isaac also got his own and they’ve both been jamming all along. Isabella sometimes acts a scary version of Ray Charles, swaying from side to side while giggling and laughing in her pink sunglasses, while Isaac repeatedly asks us to put on the Itsy Bitsy Spider song for him. I need to burn a CD with about 20 instances of that song and I’ll make him the happiest kid on earth!

Late at night on Christmas, the kids and I laid down on the carpet playing with foam blocks. It was the first time I managed to get both of them interested at the same time, so that was the best Christmas present for me. 20 minutes of play doesn’t sound like much, but it’s a start.

They woke up really early on Christmas morning, excited about opening presents. Isabella had been asking to “open it” all week long, tearing a piece of wrapping here and there while snooping around when we’re not watching. Christmas wore them out pretty good, as it has done to me writing all this. Sleep tight!

More Health and Education news

It’s been a while and I’d better catch up!

On the health front, Isaac had a follow up visit with his Urologist and so far everything seems great. They want to see him one more time in 6 months to confirm that everything remained normal and that would probably be the last visit.

Physical Therapy has been going quite well since his third visit. The therapists work hard in the beginning to gain the kids’ trust and to be seen as an authority figure. Lori took Isaac for his first session and they let her into the gym, but since then, I’ve always remained in the waiting room while they worked together. They have been making him wear a weighted vest and it seems to have worked wonders for his concentration. I think we need to get us one at home! We really wanted to start Occupational Therapy but they’re backed up at the hospital. Our medical benefits have changed for next year and we won’t be able to do much O.T. without forking a ton of money out of pocket as Medical Insurance will only cover a limited amount (I think it’ll be used up within a few weeks). In my opinion the cost of therapy is ridiculously high. If I’m not mistaken the full cost is about $190 for a 40 minute session. Yikes!

We got a call about an appointment that opened up last week so we had our Developmental Evaluation moved up. This was great news as it meant we only paid the coinsurance amount for Isabella and nothing for Isaac since he’s met the maximum out of pocket for the year. The psychologist didn’t seem to have major concerns and educated us a bit more about FAS/FAE. From what we were told, it seems that a diagnosis of FAS is only done based on the presence of a number of facial features. In the case of the twins, this doesn’t seem to be applicable. So even though exposure has been confirmed, FAS as a diagnosis is probably not likely, although effects of such exposure cannot be excluded and are unknown, as they manifest themselves throughout the developmental years at various levels of intensity. We were encouraged by the observations made and hope to keep helping the kids progress. We were encouraged to read “Parenting the Strong-Willed Child” and seek further assistance if needed. And yes, we’re talking about Isabella here, who was originally portrayed as the angel of the two! My, how things have changed.

Some of the behaviors we described were quite normal for kids their age. This was helpful news as we don’t have other children to compare to! As new parents, it’s quite difficult to navigate your way through and figure out what’s considered normal and what could be a “symptom” or potential problem. We were also advised to look into PPCD (Pre-School Programs for Children with Disabilities) due to the delays present, speech issues, etc. We’re not sure Isabella will qualify, but tomorrow a diagnostician from the Elementary School in our area and someone else will go observe the kids at Pre-School to determine if further evaluation is necessary. If that is the case, they might then be admitted into such program for 5 days a week, half days.

The nice thing about this program is that it targets areas of development such as Speech, O.T., Gross Motor skills etc. which can help them catch up. This is particularly important for Isaac. In the current pre-school they don’t get that kind of specialized tutoring. As part of PPCD, educators work an individualized educational plan to strengthen their deficiencies so they perform better once they join kindergarten. Also, just because they join PPCD doesn’t mean they’ll always need special education from now on. However this might give them the required crash-course/jolt to offset the shortcomings of their early developmental years. We’ll see where this goes in the coming days.

Finally today I decided to call and see if we could move Isaac’s Neurology appointment before the end of the year (lost count how many times I tried). Luckily someone had cancelled and we’re now scheduled for a visit on the10th of December, the same day as his speech evaluation. That’s great news for us as from what we understand, Neurology ain’t cheap! The more we can do this year, the more that will be available next year for other things.

Behavior, Health and Halloween Monsters

So let’s see where we left off last time…Isaac’s surgery went well and he’s all recovered. The MRI results came back and showed the potential effects of FAS (shortened Corpus Callosum). I’m using the word “potential” because the effects of pre-natal alcohol are not something of absolute certainty and vary from individual to individual. Doctors like to look at other possible issues such as genetic abnormalities etc. In the case of the twins, there are developmental differences that they want to make sure are not the result of something else. As of now FAS is at the top of the list in explaining Isaac’s problems and other behavioral issues that have become more evident with Isabella. In future posts I intend to post further details as we learn more about the effects of FAS. Before we adopted, this used to be something we didn’t want to deal with but as we learn more about it and thanks to some adoptive families that shared their own personal experiences, we feel like we can help our children lead an independent life, even though it won’t always be roses, butterflies and rainbows ;)

The twins have had a couple of really bad days with their grandparents. I think that their proneness to ADHD makes it difficult sometimes to focus and listen. Behaving properly is difficult for a brain that cannot focus and jumps from one thing to the next. For a while it was difficult to figure out what we can withhold as a punishment. Now we mention vetoing toys, Barney (ugh!) and riding in the car if they don’t behave. After an abysmally bad Monday, they’ve had a much better two days, although they did start misbehaving a bit again today. After some timeouts on the couch, they improved. Once I got back from work and Isabella was all over me with hugs and kisses, we had the “talk” and she sombered up as her head lowered during my speech. Isaac didn’t want to talk about it obviously but motioned that he was sorry. Hopefully as we continue to mention these punishments, they will think twice before getting out of control. I’m sure we’ll have many instances where these punishments will be enforced before they “get it”.

Isaac has now started Physical Therapy once a week to work on his fine motor skills and gait training. Getting his attention is the biggest challenge, but hopefully once he gets on a schedule and we start working on specifics with him at home, it’ll get better. We re-did Audiology testing, but one test (tympanogram) was inconclusive yet again due to wax buildup. His ear canals are very small and the reduced volume has a big effect. The other test went great and he passed with flying colors. So we’ll retest before the end of the year after more ear drops and wax cleaning.

But it wasn’t all health and behavior problems; we had some fun too! For Halloween, Lori dressed up the twins as clowns. I think the idea was really inspired by Isaac, the real clown.

The costumes fit them great and they wore them on our non-traditional outing. What better way to spend Halloween than to go see some loud “Monsters” in person? We all enjoyed the outing, but Isaac was the most excited (my father was a close second).

 

Yes, Monsters with wheels! It was a great contrast between insanely big and oh so small.

We took pictures with Isaac and Isabella sitting on the wheels of one of the trucks, which turned out to be the winner of the night.

 

We like to think they brought a lot of luck to “Tail Gator”. It was a chilly night of great value for some awesome, loud family fun. The twins don’t yet understand Halloween, so a non-traditional celebration was a better option for us. We all enjoyed the truck-donuts and freestyle events. We were rednecks for a night!