Wishing

It's another dreary day here in Souptown but at least it's finally raining like we needed. Normally on dreary days I like to curl up and catch up on my friends' blogs and sometimes even comment (I really am horrible at commenting I can't think of things to say most times and when I can I often ramble... just like this). I've been using this dreary Saturday to catch up on the housework that was neglected while I was sick this week and to think about things I really wish I could do.

The first thing would be to become better at taking pictures. I really love to take pictures but I lack the talent or skill to take really wonderful pictures. I get lucky here or there but most of my pictures lack the special something that makes them pop. It's not that I don't have a wonderful subject because Lex is so dynamic when it comes to his expressions that no two pictures would ever be the same. I mean just look at this kid.



You can't get much cuter than Lex in the tub except when he's on his trampoline or in the park.



Another thing I wish for is more time with Lex. I get to spend the better part of my time with Lex but I do work around 32 hours a week and most weeks that seems like too much. He is very much a Mama's boy and when we are home together it is mostly just him and I, the way it has been most of his life. We were very lucky for the almost the first year of his life Nate and I worked opposite schedules so someone would almost always be home with Lex or he went to spend time with his Nana and Papa (or Grandma and Grandpa if they were in town). At 11 months old he was enrolled in his first daycare because Nate went back to school and I was working almost full time. We are still pretty lucky because he is in a daycare where I know the teachers care about him and the owner of the daycare knows who he is in spite of the large number of kids enrolled there, but I wish there was more opportunity for me to spend time with him.

I wish that rather than kindergarten in a few years we would be doing homeschooling. Don't get me wrong I loved being in public school but with his special needs I tend to feel that he needs more one on one time to grasp the same things other kids get quickly. He's very smart but terribly strong willed. I can tell him 3 dozen times that it is not alright to climb on the tv stand and remove him every time and try to redirect him (punishments do not typically work, he doesn't really grasp why he's being put in a corner and I do not believe in spanking him unless it's absolutely called for, ie endangering his limb or life) but he will keep doing it until he's bored of it. Who knows when we start working with the school district this fall for his speech and occupational therapy I may change my mind completely, it's been known to happen.

I wish I had the capability to teach his daycare teachers what works and what doesn't for him. They are really struggling with Lex because he is not the typical 2 year old but he has a lot of the same mentality of a terrible 2. Developmentally he is roughly 18 months old even if physically he is 2 1/2 years. The move back down to the 18 - 23 month classroom with be good for him and better for his teachers. Miss Dani and Miss Lisa are very familiar with Lex and he loves them immensely. Miss Lisa has been pulled in the past to coax him down for a nap so I'm sure he'll be much more comfortable when he gets back to that room.

There are only two more things that I wish for, one that's highly unlikely and one that will probably happen down the road. The first is to have at least one more child, this is the unlikely one. My PCOS seems more out of control than before I had Lex and it's just not financially feasible to spend the amount of money we spent conceiving Lex given all the speech and occupational therapy bills we have to pay. Not to mention my desire to go back to school to become an M.D. The second thing I wish for is a dishwasher... I know it's ridiculous but good grief I hate washing dishes and sippy cups are the worst. Our sink in our apartment makes doing dishes particularly awful given that it is very shallow and only has one bowl to it.

I love being Mommy!

I know I complain and lament about our difficulties a lot on here so I thought it was time to post about the good things in my life.

I love being a mommy because:

• every morning I wake up to the sounds a building blocks clicking together and Lex "talking" to himself.
• I get to snuggle with an adorable boy pretty much anytime I'd like.
• every day is an adventure.
• every evening I get a hug from a freshly clean boy straight out of the tub.
• running around the apartment giggling and roaring like a dinosaur is a great aerobic activity.
• sharing half of everything I want to eat is a great way to cut calories.
• I'm happier more often.
• it's not so odd to have a Pix.ar movie on to enjoy.
• I can get super cute kid related checks and everyone understands why I have Light.ening Mc.Queen on them.
• I laugh at least 50 times a day.
• shopping is no longer a chore, but an adventure to see how fast we can get done or how much Lex has added to the cart (where did the 6 boxes of animal crackers come from???)
• I get to enjoy new words or activities on a regular basis.
• a date at Mc.Dona.ld's with my boy is the best way to end a long work day.

While I do have a hard time remembering to be happy some days because of Lex's limitations I also have so many more reasons to be happy. As far as we know right now he'll be moving back to the 18-23 month classroom by May. I think this is the best first step for him right now. His teachers in that room were more than willing to have him back and they are really his two favorite teachers in the daycare. I'm also looking into further intervention services or a personal care assistant for him. I don't know what the school district will be providing him when turns 3 but I should be finding out some of that information in a few weeks since they will be evaluating him in May. Lex's speech therapist has yet to send his recommendation for the autism diagnosis to Lex's doctor but she and I have been discussing it lately and she will most definitely be signing off on the diagnosis and said any services we need her to sign off on or any referrals we want she will do. She's the primary doctor I work with at the clinic so we are pretty lucky to have such a good relationship with her.

I wish I knew

I'm feeling really stuck now with Lex and the situation at daycare. Recently we've been getting periodic calls about Lex's behavior at daycare, he's hitting, pulling hair, biting and all around just causing trouble. I try to give recommendations but today it came to a head. Nate received a call asking to have a meeting set up to discuss Lex, his behaviors and what can be done with the whole situation. After much discussion the plan is to try moving him back to the 18-23 month room and see how he does there since there are fewer kids and a slower pace. While I feel that this decision is pretty good I'm worried that I'm not making enough strides to help him. I really do like his daycare and the teachers in the room he's in now aren't bad but I can't help but wonder if maybe pulling him from that daycare and putting him in a home based one where the limit on children is lower would be best for him overall. The main downside I see to that is the likelihood of him being too much for one person to handle is higher (each of his daycare classrooms now have at least 2 teachers). I want to do what's best for my family and taking care of my son but I really have no idea what that is right now. I can see why when a child is diagnosed with autism sometimes parents quit working... if that was only an option.

"Instant Karma"

That's the name of the House episode I was watching last night that made me sit back and think, most specifically the quote "People don't get what they deserve. They get what they get". While in that case House was trying to prove that karma has nothing to do with a man's child being ill. My logical mind knows that what House said is true but then there's a part of me that believes in karma isn't so sure.
I often ask myself what I did to become infertile. Was it from not listening to my parents as a child, becoming sexually active at a relatively young age or from picking the wrong man to have children with (I love my husband dearly but I married a man that didn't want children). Logically I know that my infertility stems from a hormone disorder, not anything I've ever done.
I also know this is the same logic I need to have in regards to Lex and his Autism diagnosis. I often wonder if things would have been different if I hadn't taken Lor.tab for my severe back pain, had scan after scan on my lungs or the elective induction and subsequent c-section. I know that none of this caused Lex's autism but I can't help to think that my karmic balance is off.
I wish there was something I could do to help balance the scales but if there's not that has to be fine too. I can't live my life in the what-ifs. There is too much in my life for me to enjoy to dwell on what isn't there.

Spring cleaning

Every year I tell myself I'm going to buckle down and spring clean and most years it just doesn't happen, this year is different. I've already accomplished quite a bit by getting all of the baby clothes that we'll never use again as well as a bunch of toys and other things that I haven't unpacked from our move over a year ago. I have to admit I cried when gathering the baby clothes. I've always felt that I would have more than one child but Nate and I have come to an agreement that we should probably just have Lex. We are financially strapped and it doesn't look like we'll be rolling in the money anytime soon. Speech and occupational services will stop being free in October and Nate has at least 2 more years of school and then I wanted to go back to get my M.D. With all those in consideration I've decided that my desire to give Lex a sibling just wasn't reasonable, especially knowing what I had to do (clom.id and injectibles with IUI) to conceive him. I fear that he'll feel alone in the world but I hope that my brothers will get married and have children soon so that he can have at least one cousin (other than Haiden) close to his age that he can be close to like I have.

I guess in addition to the spring cleaning of my basement I did a little spring cleaning in my soul.

Weight lifted.

Today Lex's teachers helped lift a weight off my shoulders. We met with them to discuss Lex's diagnosis and what we can do to help them and what they can do to help us.

We started off notifying them that we know about Lex's penchant for misbehavior and that it was okay to use a heavier hand with him than they would with the other kids and giving them how we treat such behaviors at home because we want to keep that a level playing field. I informed them of Lex's diagnosis and what his signs and symptoms at home are and they shared what his are there. My new assignment is to come up with some information for them about what Autism is and what we can do to help Lex become a participating member of his class. We tried to reassure them that he can be part of the class when he wants to be and to definitely keep up with any brushing techniques that his O.T. has taught them to help bring him around to being a more focused kid. They are also going to look into getting a tent for his classroom to give him a place to retreat when he is too sensory overloaded. All in all I feel better about the situation even if it means I need to sit down and do some homework.

Another bright spot of today is realizing that Lex is starting to show some affection not only to me but to his books. He has a baby sign language book and it has a picture of a baby that's crying and he kisses the baby better. Today while he was watching his "music videos" on youtube he leaned over and gave me several kisses on my arm where I had a mole removed, it melted my heart.

The 5 stages

I am copying most of this right out of my personal journal so don't be surprised if it makes very little sense or has very little flow.

The grieving process is usually 5 steps (denial, anger, barganing, depression and acceptance) but I feel like I've mastered 3 of the steps recently and not in the correct order. (I've also read/heard that most parents of a child that has special/different needs go through this process over and over.)
I have been going through denial, anger and acceptance most recently. I originally accepted Lex's autism diagnosis because I knew it fit just as much as sensory processing disorder does (70% of kids with spd are also diagnosed with autism).

Then I went down the road of denail. I believed he wasn't really any different from the kids in his 2 year old class. Sure, he didn't talk and he has some negative social interactions but he didn't seem like he was all that different.
Friday morning opened my eyes. When I dropped Lex off in his classroom at daycare the other kids didn't want to play with him and he ended up sitting by himself with some blocks. Picking him up was more of the same. The other kids were running and playing together and Lex was hanging out in a corner by himself. Then came the report from his teacher that he was being aggressive again, pulling hair, pinching, hitting and biting for really no good reason.

I'm angry that the teachers don't encourage the other kids to play with Lex. I'm mad that Lex is being so difficult at daycare. But I'm most angry that I don't know what to do for him.

I guess I'm grieving the child I had expected Lex to be. Don't get me wrong I know he'll be able to do many things but most of life is social and he will have a very hard time with that. When I dreamt about Lex when I was pregnant I never dreamt about endless therapy or a child that is an outsider among his peers. And while I know I should be happy that he is happy and healthy, I fear what is going to happen to him in this world that isn't so understanding.

Blessed

I've been doing some thinking about Lex's diagnosis and anyone who knows me knows I'm not overly religious but I think the diagnosis was the Goddess' way of thanking me. I had a hard journey to get pregnant with Lex. My pregnancy was riddled with small problems and goodness knows labor didn't work out so well (c-section) but I'm really blessed to have Lex. I now realize that I will have a different insight into every day things, Lex won't look at things the way I do. Every activity is an adventure.

On a side note the 15th marks 8 years with my hubby, it's amazing we haven't killed each other yet. :)

Thinking

I've been doing a lot of thinking since Lex's speech therapist gave us his recommendation for the Autism diagnosis on Monday. I realized that it wasn't a surprise that we got this diagnosis for Lex. I've kind of known since he was tiny that there was something about him that made him different than other kids his age, not a bad different, just different. I think I just thought I felt that way because he was my baby and other kids weren't.

His speech delay was a big surprise for me. I started talking early and Nate never stops talking, so I thought he'd pick up words left and right. I had high hopes after his initial speech evaluation and when we got started with those services at the hospital. I was kind of in denial that there was much going on other than a simple speech delay. As time moved on and he had only picked up the sign for "more" and wasn't saying much other than "mama" and "dada" I started to worry that we weren't doing the best we could for him. At that point we added occupational therapy at the hospital with the thought that he had sensory integration dysfunction and that his sensory problem was the reason he didn't talk. After a few months of doing both speech and OT and Lex showing minimal improvement we decided to try a different mode of therapy, birth to 3 through our county. His initial evaluation with his current speech therapist showed he was far behind in expressive language and it was hard to judge how far he was on comprehensive language. We started services in September with Lex having speech twice a week, one at home and one at daycare. I saw more improvement at that point but I was afraid to get my hopes up again. We added OT in November realizing that he most definitely had sensory integration problems.

We've just been chugging along right up to the point when his speech therapist asked us if he could do a new autism screening test on Lex. Lex was the first child he was going to try this screening tool on but since he knows Lex pretty well he figured he could test him pretty accurately. At that point it clicked for me, I did a little more research and after the test I just knew. When David sat down with us to discuss the results I think he was surprised I didn't cry. But for me this was validation. I had been right in my thoughts about Lex having the dual conditions of autism and sensory processing disorder.

We are going to continue speech and OT services with the county until Lex turns 3 and then we'll be moving up to the school district but I remain hopeful that one day you won't be able to tell Lex is any different than his neurotypical peers. Even if that day never comes I know my son is still an amazing child that wows me everyday and will continue to wow me.

I don't worry that he'll have problems in school or that he'll have a hard time making friends, my only worry is that we didn't do enough soon enough. I have heard from a co-worker that is the mother of a child with Asperger's that I'm definitely doing the best for Lex right now and it's amazing how much we have done in the last few months but I'll always worry there's more we can do.

What we know.

Monday was an incredibly busy day that gave us lots of information.

1. Lex needs more sedative than other kids his size to put him out. He got an extra half dose after holding on strong for 45 minutes after the initial dose.
2. Waking up a kid under that much sedation is not easy and can induce vomiting (the first time in his life).
3. Watching my 2 year old try to walk after sedation (3 hours after he woke up, 5-6 hours after they gave him the second dose) is hilarious and nerve wracking at the same time.
4. My son can hear! He passed the test with just a minor deficit in the lower decibels that is common with kids with tubes.
5. Upon approval from his doctor Lex will be diagnosed with a mild form of Autism. Lex's speech therapist has to write up his report from the test and send it to the doctor. I fully expect that she will sign off on the diagnosis. We plan on discussing it tomorrow when Lex sees her for his tonsils being swollen. (Besides that I work with her and I know how she is when it comes to diagnosis and orders).
6. Expecting the worst and not getting all bad news pays off, it made Monday come much easier. I amazingly held it together when the speech therapist told us the results of the Autism screen. I think it's because I had a huge meltdown once Lex was sedated and he was hooked up to all the wires... that made me nuts. I also had my suspicions about him being Autistic so I wasn't totally shocked.
7. We are doing all the right things to get Lex on track to being similar to other kids and we have been for several months.