Rough, Rough Night

It's nights like last night that make me really, really wish I had some help. Beans was a monster all day because he doesn't feel well. That took up most of my day. I really needed a quiet evening to prepare us all for this week but then all hell broke loose. Little Man could not/would not go to sleep.

First he snuck toys off the shelves and into his bed. I went and retrieved those and he threw a fit. Oh well, it's bedtime. Stay in bed! I went back to the living room, totally exhausted. I must have dosed off sitting up on the couch as the next thing I know I hear a loud thump. I go running into the kids' room. Little Man has taken numerous things off the shelves and dumped Legos all over the bedroom floor. I put him back in bed and tell him next time I come in the computer is going to Toy Time Out the next day.

He seems to settle so I head back to the living room. We went round and round for two hours of him trying to play or draw and me taking things away and sending him back to bed. Then I decide to remove him from the distraction of his toys and make him a nice bed out in the hall. He lays down, I check him a few times and he's out. I head to bed, just about get to sleep when I see shadows moving around. Yup, it's Little Man at it again. By this time it's 1:15 am. I am not pleasant at 1:15 am. I drag him in with me, figuring that at least if he won't sleep he'll be laying down and maybe I can catch some sleep but wake up if he tries to get up.

Umm...yeah. I wouldn't recommend this method either. I fell asleep around 1:30, he crept out of bed and I hear another noise. Now it's about 1:45. I'm even less pleasant at 1:45 than 1:15. In those short 15 minutes he pulled out the electrical tape, climbed up on a chair and there were spiderwebs of tape across the living room and his bedroom. He had also turned off Beans' feeding pump, disconnected him and tried to get him up.

I was over the top. I ripped down the tape, disconnected the computer (which is now in Toy Time Out for 2 days) and put him back in bed. I grabbed a chair and sat in his doorway until I was sure he was actually asleep. Now it's almost 2:30. The house, spotless when I originally put the kids to bed, is now trashed and Little Man will be cleaning it all tonight. I think I will have to sit in his doorway every night to make sure he goes to sleep.

I haven't yet figured out how I'll keep him safe when he wakes in the night yet. I considered putting a baby gate in his doorway but I think he'll just knock it down. At least he's afraid of the dark so he won't go outside at night. That still leaves everyone and everything in the house vulnerable to his wild ideas though. :( Did I mention I really, really wish I had some help?

Special Visitors

My brother C and his family (wife A, 21 month old G and 11 month old O) came to visit this week. We saw them for a couple hours on Friday night (Happy Birthday Dad!) and spent the whole day with them yesterday. Little Man and Beans were so excited to see them, they couldn't wait. They love babies anyway but especially with these ones were extra special since they're their cousins.
We started off Saturday with a trip to St. George Island. It was the perfect day to go. Beautiful weather, perfect waves and, to my amazement, few people. The kids had so much fun. G started off playing in the sand while Little Man and Beans went straight for the water.
G couldn't resist the excitement for long so soon he had C in the water with him and A followed soon after. It was a series of giggles, laughter and shrieks of glee that followed. Waves splashing, little boys soaked and happy and a lot fun was had by all.
After we finished at the beach, I watched G and O so the adults could go out sailing and then out to dinner. I'm not sure if the kids had more fun at the beach or just playing together at the house that evening. O crawled so fast to explore everything, it was just adorable. Quite the little princess she is. Soo beautiful, made me wish I had a little girl.
And G, oh how precious is he! He reminds me sooo sooo much of Little Man at that age. From his love of ceiling fans (I couldn't turn it off or he'd look up at it and uhhh! uhhh! until I turned it back on), to his total lack of stranger anxiety and love of doing everything, to his speech which seems much like Little Man's at that age, to being such a happy little boy. I could just eat him up. Little Man and G had the greatest time together.

After dinner was over, C came to pick up his little ones. Little Man was so exhausted from our busy day that he actually put himself to bed a while before C came. It was sure hard to tell them all goodbye. Enjoy those precious babies C and A!

Tomorrow starts a new week, and a most exciting one for me. My classes start tomorrow! I'm looking forward to getting my nursing degree and can't wait to get started on it. Tomorrow night Little Man also starts guitar lessons with a new teacher. He really liked the old one but the teacher had to quit for a while so he starts with the new one tomorrow evening. Changes are hard for Little Man so I'm crossing my fingers that things work out. Playing the guitar is his dream so he's willing to put up with things he'd normally have a much harder time with in order to get it.

What a Ride!

Each day Little Man brings a note home from his teacher telling how he did that day. Yesterday's letter was exactly what this Mom needed. It said "Amazing Intelligence!! Call me to discuss goals (academic)." OMG I was almost in tears for about the millionth time in the past week.

You see, several months ago there was great suspicion that Little Man was mentally retarded. At age 9 he still left letters out of his last name, could do single digit addition but not double, could spell cat and dog but not house. Testing in January showed severe learning disabilities in reading and writing, cognitive issues with processing speed and working memory but a normal IQ.

Don't get me wrong, he still has the learning disabilities and always will, BUT this teacher has found the greatness in my boy! She discovered he has a photographic memory. I think he's a little copy machine - he echos exactly what he's heard and apparently he has the visual part as well. Once when he was probably 5, my grandma and I took him to lunch. While unable to actually have a conversation he quoted a political ad precisely "Vote for XXX - he XXXX." We were cracking up.
This year is shaping up to be a great one. Little Man's teacher gets him - really, truly gets him. She sees the wonder in my boy that I love so. She's even going to be consulting the gifted teacher to find ways to expand on his strengths. Can you even believe that? Possibly retarded to learning disabilities to gifted. What a ride! He's such an incredible gift.

Beans is also doing fabulous! His mainstream teacher is so wonderful with him, he is happy, he is participating, he is learning. In fact, he's doing so very well that I am pushing the school to get him a 1:1 aide again. I feel very strongly that having his 1:1 back will be his Least Restrictive Environment and give him as much time during the day with the typical kids as possible. I've heard the "A" word (no, not that one you naughty people) several times today - I'm definitely up to the job - I'm these kids Advocate and they will get what they need.

If the rest of the year shapes up half as great as the first few days have gone, hold onto your hats because these boys are going to blossom.

Genetics Appointment

Today was another one of those big appointments where you hold your breath, hoping for good news and some prediction of the future. One of those where you really wish you had a crystal ball to know what to plan for but also glad you don't have one because you're afraid of what the future may hold.

This appointment was a follow up from Beans' appointment in May. The bloodwork from that appointment showed he was a chromosome deletion (7q35 for those who it makes sense to - which really isn't me :P) and bloodwork on Little Man showed he doesn't have it. The geneticist seems pretty darn sure they both have a genetic disorder causing their medical and developmental issues. They were really hoping Little Man would show the same deletion as it would explain everything, but since it didn't we're left with three possibilities. Either they have two separate genetic disorders causing many similar symptoms (highly unlikely), they both have the same disorder plus Beans has the deletion causing his extra symptoms, or Beans' deletion is just a red herring and means nothing in their overall diagnosis.

After reviewing the whole family history, prior bloodwork, developmental histories and a very thorough physical exam of both boys we're looking at two likely causes. The most likely is an x-linked genetic disorder. This means that it's something that I passed onto them. Since it's x-linked I wouldn't show symptoms but any boys I have would have a 50-100% chance of having the disorder. :( :( :( If it is an x-linked genetic disorder this also means my sisters would have between a 0-50% chance of any sons they have also having the disorder. There are many, many x-linked genetic disorders and there is a center in Greenville, SC that the geneticist will be discussing the boys with. The good news with this one is that very few of them are degenerative and if, at some time in the future, I do end up having a girl she would be unaffected.

The other possible cause is something metabolic. The doctor ordered tons of labs - blood work and urine - to check for something in this category. The likelihood of any of my siblings' children being affected would vary greatly depending on what they find. Those results will take around a month.

What we do know is that both boys have significant developmental delays, hypotonia and hyperextensible, multiple medical problems, neurological problems and a connective tissue disorder. What the future holds we really aren't any closer to finding out but really, really hope that we'll get the answer to what genetic disorder they are dealing with to have a better idea of treatments and prognosis. It's very hard to accept that I am the likely cause of their issues. After trying for years to do everything possible to help these kids, it's probable that my genes are the cause of it all. Obviously that will take time to accept and deal with.

First Day of School

I think today went pretty darn well, especially for the first day of school. Beans was very excited to go to second grade, round two and Little Man didn't let the retention hold him back - he told everyone he was in fourth grade anyways. It was a battle I chose not to fight. Since his class is 3rd, 4th and 5th it really doesn't matter.

The boys were up early this morning, bathed, dressed and were ready to go. Beans didn't seem anxious at all but Little Man alternated between anxious and excited. There was a little problem with the bus garage yesterday and they didn't have the ESE kids busing schedule ready yet...the day before school starting. They assured me they were doing it right then and the kids would be picked up.


We were outside at 8 am, school doesn't start until 9 so I figured that should give enough time. Beans van pulled up at 8:08 and he climbed on. A bus pulled up about 8:20, but it was going to our neighborhood school that neither of my kids go to. We wait...and wait. No ride for Little Man. Oh well, we climb in the car and I take him on my way to Beans' school.

I spent the day at Beans' school helping in the self-contained classroom and doing his meds and feeds today as two of the teachers were at a training. He did great. He looked so cute in the second grade class. I think he was just about the smallest kid in there, even though he was the oldest. He would have looked way out of place if he was in third like he was supposed to. The work was pretty hard for him, even on the first day. I hope he can catch up, at least he's not trying to keep pace in 3rd. That would have been a disaster.

I was very impressed with Beans' teacher. Mrs. G had all 19 second graders sitting quietly in their desks working when I came to get him for his meds. She has such a calm, positive, gentle demeanor and I think Beans will do really well there.

Little Man had a good day too! He got upset and was crying for his teacher from last year. So what did his teacher do? Called her right up and let them talk for a minute. Turned his day around and made him feel so much better. Other than a few minor glitches his home note sounds like he did well. This class may be hard for me to swallow but I have to admit, it's the right place for him.

Here's to a great school year!

Heartache and Relief

Being normal is highly overrated but being special sure isn't easy either. Today the boys both had their Open Houses for school. School starts Thursday so tonight we got to go check out their classrooms, meet the teachers and all that good stuff. I thought I knew what to expect after all the meetings we've had over the past few months. That was my first mistake.

We get to Little Man's school and get in line to find out where his classroom is, I already knew who his teacher was from all the meetings at the end of the year. Or so I thought. It was a very hard decision for me to let him be placed in the new classroom. A class for emotional/behavior disorder kids. A special class because he can't handle the half special/half mainstream class. After all the test results though I knew it would be the best fit. He would be in a class with a behavior system and would be in the high-functioning class that is pretty much on base academically. Especially having just retained him I had high hopes of this working.

Then they tell me who his teacher is. I felt like I'd been punched in the stomach. They didn't place him in the high-functioning class but the kids with both EBD and learning/cognitive issues. I'm sure the poor lady giving out class assignments wasn't sure what to think when I took a deep breath to hold back the tears and then moved to the next station.

You know, I've accepted a long time ago that Little Man is a different fellow. He's wonderful, unique, thinks outside the box and a total blessing. Whatever is in his ability to accomplish will make me happy - whatever it is. But being placed in the "special, special" class I guess I just wasn't prepared for.

We went to his class and met his teacher. Found out his class will only have 5 students - all boys. His teacher and I sat down as she let the boys explore her room. Investigating closets, touching everything, opening and closing drawers and doors. None of it phased her.

As we started talking, Mrs. R's passion for teaching these special little fellows was abundantly apparent. Come to find out, she has two autistic kiddos of her own - one 18 year old daughter and a 15 year old son - as well as two other kids. Her autistic ones are both higher functioning and seem to mirror mine in many ways. The behaviors don't phase her, the issues don't phase her and she has HOPE for these kids.

I could spend all night writing all we talked about - for over an hour. I expressed my concern about Little Man regressing and she told me not to worry. This is how these kids learn. They seem to not make progress or lose skills for long periods and all the sudden bam - they've got the whole concept. OMG When she said that I was holding back the tears again. I have said this so long about Little Man - that he doesn't grasp things, doesn't get it but once he's wrapped his mind around every aspect of a concept he knows it better than I do. Hearing her say that was pretty much total confirmation that he was in the right place.

After about an hour, another little boy from Little Man's class came in. He's also a 9 year old and they were so cute together. I can't describe their interactions well but they were both quite taken by each other and then the excitement began. The jumping up and down, flapping, noises and smiles. All the kids in this class are verbal, unlike Little Man's old class. They'll be focusing mainly on social skills, working as a group and life skills. Academics will come eventually but these things come first.

As we left the school, my heart was torn in two. One side still struggling with all the "special"-ness of my wonderful boy, and the other so relieved and hopeful that this year will be fabulous. Sometimes things just happen as they should and it's my job to accept that, work to get these boys all they need and deserve and to not forget to sit back and be thankful for all that we have.

Busy Few Days

This is one of those weeks where you run, run, run and don't stop until you crash into bed at night. I have to say I am amazed at how well the boys have dealt with the chaos this week. This entry is bound to be long as lots happened this week so grab a drink and a snack and sit back.

Tuesday, the 4th, we drove down to Gainesville to see Beans' immunologist. For those that don't know, we found out he has a primary immune deficiency a little over a year ago. This appointment was mostly good news. His IgG levels, though low, are not low enough to require them to be replaced. He did build antibodies to the booster shots he had, they tested them again to see if he can hold onto them but don't have those results yet. They also did bloodwork to test all his Ig levels (IgG, IgA, IgM, etc) and to test his T-cell functionality. We know he has enough T-cells but we don't know if they function well enough. The T-cells are what help fight off viruses and he has a really big issue with them so we'll see what the testing shows.

There were two downers to the immunology appointment. First, Beans lost an entire pound since seeing the GI in June. It took him from January to June to gain that pound. He's been eating a lot more by mouth and getting his tube feeds and still managed to lose it. My theory is that his formula is so broken down his body can absorb it better and regular food tends to irritate his system making it hard for him to absorb even his formula. Who knows if that's it but every time we've seen a great increase in oral foods (and no, he won't even think of drinking his formula and I don't blame him - it's NASTY) we see the weight loss.

Second downer of the day, immunology is very concerned about how sensitive his eyes are to the light so he got a referral to opthalmology. I have no idea what this could be so I'm just not going to worry about it unless proven otherwise. :P

Beans was absolutely fantastic for his blood draw and the nurse who did it was great. Not a tear was shed and the whole thing was finished in probably 30 seconds. Quite a difference from his local blood draw experiences.

Wednesday (Little Man) and Thursday (Beans) the boys had their first individual appointments with their new play therapist. Their new therapist is male and Little Man already is accepting him. They each have their own issues to work on but mainly social skills, anger management and general behavior are the goals.


Wednesday Little Man also got his new glasses. He is so excited and says all the girls are going to be embarrassed because he's so handsome! I said embarrassed? Don't you mean excited or jealous? Nope, he insisted they'd be embarrassed. Either way he knows he's a handsome fellow.

That leads us to today, the day of Beans' Plan of Care meeting for school. The Plan of Care is basically the medical addendum to his IEP, or basically, how they're going to feed him and what accomodations they're going to make for his health issues at school.

I was a little apprehensive about this meeting. Not knowing who his new teacher was going to be or what to expect, knowing he won't have his own 1 on 1 aide this year, worried that they wouldn't take things seriously.

There was nothing to worry about. The school, administration, teachers, nurse, and special area teachers all bend over backwards for our Beans. The meeting was about an hour and a half long and we bounced around different ideas that would work for his schedule, keeping him out of the heat, keeping him as healthy as possible, all that good stuff. In the end we changed his plan of 100% inclusion to about 50%. His "home base" will be the inclusion class and he'll spend the beginning, end and chunks in the middle in with the "typical" kids but while his class is at PE he will go to music and art each a second time. When they're out to recess or lunch he'll be in the self-contained class and he'll receive his feeds in the self-contained room as well. It's going to take a lot of attention on the part of everyone as there will be a lot of bouncing between the classrooms but I really think this is going to be the best solution.

Because of the change of placement, we'll have another IEP meeting next week just to pretty much sign the changes into effect. I am so incredibly thankful for this team that is willing to do whatever it takes to get Beans what he needs to learn and be safe.

Another busy week is coming up, with appointments almost everyday, both boys have their school open houses on Tuesday and school starts for them Thursday. Again I am just amazed that things just seem to fall into place. We are so incredibly fortunate.

Rainy Day at the Museum

On Saturday I took the boys to the Tallahassee Museum. It was an interesting choice for the day given the rain was pouring down and the museum is almost exclusively outdoors. Nevertheless we had a great time. They have a school house from the 1850's that black students used to go to. They saw how small the room was and I told them how all the kids from kindergarten to graduating were in the same room. Then I explained segregation in it's simplest terms. Little Man didn't really understand but Beans got mad. "That is wrong. All peoples is the same." I'm so thankful we live in an age where my kids don't even realize the color of people's skin or what's different about them. People are just people.

Next to the school house was an old church with an ancient organ and very old piano. Little Man got up on the stage and gave us a speech. :P They weren't as impressed with the church but Beans thought the old piano was entertaining.

After the buildings we headed for the animals. We saw a bald eagle, owls, white tailed deer, bobcat, black bears, a Florida panther, and the boys' favorite - a river otter. Oh and I better not forget the four separate toads we saw along the way. They were croaking happily in the rain. I have to say it was nice to see all the animals in big, natural enclosures.

Possibly the highlight of the entire day was when they got a chance to pet an indigo snake. It was out with a keeper for it's education encounter. There were very few people at the museum so Little Man and Beans got to spend quite a while petting it and then watched happily as it's caretaker let it crawl through the mulch. Though I questioned my sanity (haha what sanity?) when I decided to follow through with the museum in the rain, I'm so glad I did. The sparsely populated grounds were perfect for easily overstimulated kids, the peacefulness of nature was calming and it was such an enjoyable day.

Today I moved the boys back into the same bedroom. We've done it before but they were horrible at waking each other. Little Man has trouble getting to sleep and Beans has trouble staying asleep so combine the two and you have a whole family with little sleep which means a very cranky mom. Wish us luck and happy sleep and I just may get to move back into my bedroom.

Thanks again to wonderful Grandma J for keeping both boys for *6* hours for me on Friday so I could go to orientation and get registered for my classes. She did a fabulous job with them, both boys had a great time and were so happy when I picked them up. I really appreciate it.