Six Years Ago Today, My Life Changed Forever

Six years ago today my life changed forever. That night I lived through the worst pain and was rewarded with the most precious gift ever. That night I stopped being a child and became a mother. That night I learned about love. My body, my sanity and my heart have never been the same.

I love you, Lukas!

Merry Christmas from Lukas & Dominik

Love, Blood, Sweat and Tears

I thought I would be more relieved.

After a year of waiting, evaluations, waiting, evaluations, and more waiting, we finally have it in our hands. Black on white. The report from the developmental pediatrician states an assessment of PDD-NOS, Developmental Delay, Disruptive Behavior w/ risk of ADHD and Sleep Disturbance. That's it. The developmental inventory shows my 50-month-old scores on average at the level of a 34-month-old, only 8 months more mature than his little brother.

According to Wikipedia, "Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) is one of the pervasive developmental disorders and autism spectrum disorders. PDD-NOS is a diagnosis for people who are well-described by the PDD label, but cannot be categorized by any other disorder. It is usually milder than autism and has similar symptoms to autism, with some symptoms present, and others absent." (And yes, I am aware that ADHD presents with developmental levels about a third younger than chronological age, and that the diagnosis in the early years often volleys back and forth between autistic spectrum disorders and ADHD, so this is not the final word, but it would be foolish to ignore it.)

I thought that finally having a diagnosis would be a relief. That I would finally be able to say, this is it, let's get help for that. But, we always figured it was primarily ADHD. And with that, when all else fails, you can always try medications. Not that I would readily want to do that, but it was available as an option if school and family life just became too impaired. With PDD, there's no such thing. Sure, there's meds for some of the symptoms, i.e. the ADHD aspects could still be treated, but there's no pill to guarantee that my child will go to kindergarten at age 5, have a chance at going to college or having a successful career or even more importantly successful or rewarding relationships. There's no pill that will make him less challenging to his environment. There's no pill that guarantees that I won't have to worry about him every single day for the rest of our lives.

There will be only lots of love, blood, sweat and tears.

Our options are to continue the current interventions through the school district, and to add intensive private therapeutic interventions such as behavior therapy, occupational therapy, etc. Applying for TEFRA or Medicaid, and Genetic Testing for Fragile X and other conditions were mentioned.

I am not relieved because I just had it confirmed what a long and hard road we have ahead of us. Because my to-do-list just grew exponentially. Setting up and attending appointments, dealing with insurance, applying for federal aid. And most of all learning to love my child unconditionally and patiently regardless of how annoying or disturbing he can seem.

No pill. Only lots of love, blood, sweat and tears.

Casanova in Training

One of those times that make it all worth while for me is at night when I go to bed and quickly wake Lukas to put him on the potty. (Not so fun on the other hand: changing pajamas and sheets in the middle of the night.) Especially when I miss bedtime for some reason, so I still get a chance to see my boy and say good night. Most of the time, he remains half-asleep while I carry him to the bathroom and back to bed, and he has this contented smile on his face.

Last night, I missed bedtime because of a hair appointment and when I picked Lukas up and carried him into the bathroom, he asked: "Are you all done with your hair cut, Mami?" - "Yes, Lukas." - "It's beautiful. You look beautiful, Mami."

Now, I hate to say this, but I don't think he even opened his eyes to look, but nevertheless: Ladies, look out!

Where does he get this stuff? Mike and I don't talk that way. He doesn't watch much TV, but he loves music - his favorite song these days is "Jessie's girl". So, I will blame it on pop music for now and look forward to more night-time sweetness.

Okay, Mom.

So simple, yet the most beautiful words heard out of my almost 4-yr-old's mouth after I told him "no" for something. No tantrum. No negotiation. No repeated requests. Just "okay". And I have witnesses. Whose jaws dropped.

Are we finally done with the Terrible Twos or did he just realize I'm even more strong-willed? More likely, the hard work of his teachers is paying off. They spend a lot of time talking about using your words and controlling strong emotions. Either way, it's just so cool!

Wise Boy

The boys and I had a rough bedtime last night, everyone was agitated, no one wanted to go to bed. Despite my best intentions to keep calm, the impatient and angry mob inside me won out a couple of times. Lukas quickly took over the role of adult in charge: "Mami, no yelling, just say it." And then proceeded to tell me a little anecdote about his friend at school, whom he seems to have taken a toy away from, his friend promptly yelled or screamed or threw a tantrum, and calm teacher intervened with above words, or so I gather the incident occurred. After the initial surprise, I collected myself and realized how awesome it is that the boy gets to go to preschool and learn coping behaviors, and doesn't have to spend all day with me and the unruly mob.

Snow Day

Well, it wasn't really a snow day, but it could have been, had it started snowing 12 hours earlier. By evening rush hour, several inches of the pretty white stuff had fallen, and we spent a fun evening outside, sledding, skiing and shoveling.

Skiing Together

In a mixture of boredom and insanity, I decided to take both boys skiing by myself a few weeks ago. Dominik had never been out and only practiced once in the basement, but immediately started walking on his plastic "skis" over to the bunny hill. Lukas has been getting good enough that he can ski without tethers and too much interference from me. So we spent a few hours on the bunny hill, with me riding the magic carpet up right behind Dominik and then skiing down with him between my legs. Exhausting, but fun!

Fettsack

Seit einem Jahr oder so nennen Nadja und ich Dominik ab und an liebevoll "Fettsack". Ist er ja nun wirklich nicht, das Kind ist ein Fliegengewicht mit seinen 20 Pfund. Aber er hat so süße dicke Wadeln und so einen runden Bauch nach dem Essen. Nun ja, vor ein paar Tagen begrüßte Lukas dann Nadja morgens mit "Fettsack"! Ab sofort heißt Dominik jetzt "Kiek", nach seinem momentanen zweitliebsten Wort, Keks, und das Wort Fettsack hat Hausverbot.

Wir sind wir

Santa scares little boys all over the world


Dominik taking apart our furniture


Lukas hiking at Taylor's Falls

Lukas Skiing Photos

An album of Lukas skiing between January 2007 and January 2009 has been posted on Uta's Facebook profile: http://www.facebook.com/album.php?aid=57267&l=13496&id=584380901

The Boys in 2008

A photo album of favorites of 2008 has been posted on Uta's Facebook profile.