Time Frames

A few days ago was the third anniversary of when E-man was diagnosed with autism. Two weeks before that was Little Buddy's third birthday. Three years ago we were overwhelmed. A second baby and autism! I look back now and realize how far we've come physically, emotionally, mentally and spiritually. 
Autism was the catalyst for us to get healthy, invest in our marriage even more deeply and rely on loved ones more than we had ever before.
Martin and I are going to be celebrating eight years of marriage soon. Eight years ago I couldn't have guessed we would be here, so far from where we grew up and raising two special needs children.
Of course there were and will continue to be bumps in the road. What has helped me immensely is deciding to throw out the mental timetable I had for certain things.
Hoping the boys would talk by the time they were a certain age, be fully potty trained by a certain date all puts added pressure on an already stressful situation. With three years under my belt, I now know we can have goals to work on but setting them in time frames that may be unrealistic is unfair to both us and our children. Don't get me wrong, they have both made tremendous progress with the help of therapy. My focus now is that we are consistent in working on goals so they will happen eventually, without  so much stressing on the "when". 

Throwing out the time frame also addresses the "I'll be happy when" syndrome. The "I'll  be happy when I weigh X", "I'll be happy when I make X amount of money", "I'll be happy when the Sharks finally win the Stanley Cup" type of thing. I've realized I'd rather be happy, grateful and amazed at my life now. 
Having goals is great, but at the expense of not being happy until they are accomplished? Not so great. 
So our little family will just keep plugging away at our goals, happy, proud and thankful for each other.
Why wait?

Mother's Day

I don't think I truly appreciated my Mom until I had my kids. It didn't kick in right away because I was so overwhelmed with my newborn. After things calmed down I started to realize all the struggles I was having, my Mom had too. 
What was shocking to me was the love. You expect to love your children, you're told it's a love like no other. When you finally experience it, it is so intense it overtakes you. Realizing that my Mom feels that way about me was like a light bulb going on. 
When I was little I felt like my Mom knew everything, I felt safe, warm and loved with her. She would pack me and my brother a lunch to eat when we played outside. She showed me how to make mud pies with real mud. 
She was everything.
In junior high I was bullied and one day after school I was really upset.
She took me to out to Foster's Freeze to talk about it. I don't remember what we said but I remember feeling better after.
High school was tough, by then I thought I knew it all. We were still close but I was quite sassy and ran my mouth a bit. 
A mother-daughter relationship can be so complex. It was love-hate around that time, it was hard sometimes figuring out how to be together. As I got older I realized I wasn't right all the time. It starting dawning on me that she had good advice and my best interest at heart.
In college I decided to move out with Martin and when I told her she cried. 
She said she would miss me. My first night out of my parent's house Martin was out of town. 
I told my Mom and she came by to chat and brought food. When she left I cried because it turned out I missed her too.
Bringing up my children has shed a light on what she sees when she looks at me, the worrying, caring and frustration she feels for me. I get it now. 
What I want to say is thank you Mom. Thank you for everything, and I mean everything. Every wiped butt, every nose cleaned, every tear dabbed, every hug, every kiss, every talk, every laugh, every fight, every phone call. EVERY SINGLE THING.  I appreciate you and I love you.

Happy Mother's Day! 

As time flies

The month of February has been a little kinder to us than January. I realized the other day that's its been a year now that Little Buddy was diagnosed with autism.

What a year it's been! 

LB has made so many gains with over a year of therapy under his belt. 

The beginning was rough for him and the focus was on him tolerating being with someone other than me for a short period of time. 

It was baby steps at the beginning, it started with just an hour (with me in the room). I slowly faded out and the length of time increased. 

From there they worked on play and social skills and back and forth games. As the hours increase his therapy has become more complex.

Currently he is receiving five hours a day of in home therapy. The afternoon hours were just added a couple weeks ago so that has been an adjustment.

When I think back to a year ago, his progress is amazing. Eye contact has improved, answering to his name, pointing at desired objects with consistency, acknowledging other people a bit more (although he's not too friendly yet) and the most exciting of all is that he is starting to talk! 

Of course his most often used word is "no", he also says "go", "side" (for outside), "Mama", "baby" and "mo" (for more). His verbal imitation is picking up too. 

The language is starting to click for him. With that said, he does get very frustrated when he can't communicate what he wants. 

The other night I had a friend over and he was crying and yelling, obviously upset about something.

I tried every trick, his favorite snacks, a drink, games, books and just holding him. None of it worked. 

As I was trying not to have a breakdown myself my friend pointed out that even though it's hard for him it's probably a good thing that he's understanding that he needs to communicate his needs to me.

It sounds strange but it's true.

When we were very first meeting with the clinical staff of the school we were warned that at some point tantrums might start happening. This is because the kids have made the connection that information has to be communicated to a person but they can lack the language to convey the message. As language picks up the tantrums usually improve. 

So even though I was about ready to rip my own hair out I could see why the meltdown was really a stepping stone towards better communication. 

Thinking about the last year and how quickly it has gone by makes me want to slow things down. I get so caught up thinking about the future, I often forget to appreciate things now. The bigger LB gets the more it hits me that I won't have another two and half year old running around the house again  (on a side note, I told Martin I had a dream that we had a third baby. His response "Ok, ok I'll go get the snippety snip").

So I'm trying to appreciate them because it goes so fast. 

Parents of older kids have told me to enjoy it. When you think about it people are only children for a very small period of time, being mindful and present in their growth  can be a challenge. 

To that end I do want to document their quirks with pictures and descriptions in some kind of album.

I never kept up with their baby books. In all honestly when I couldn't fill out the "milestones" sections with certainty that went out the window. 

For a time I didn't put a lot of thought into it. Lately it feels like I need to record what they are like. LB likes to nuzzle my face with his face. Resting his cheek against my cheek, or pushing his forehead to mine, giggling, sometimes giving me kisses too. He's done this since he was very little. I know one day he won't be so affectionate and I don't want to forget these sweet moments. E-man is very interested in helping in the kitchen, a fact I want to have photographic evidence of for when he's older. After all, these small moments make up our lives. It is becoming apparent to me that there is no way I can remember it all. The best I can do is to take pictures and make notes to pore over when the boys are big and smelly. 

Rough Start

Leading up to the new year we had a lot of different illnesses running around the house. Every week it was some new infectious bug that kept the kids out of school and Martin and I exhausted. That added in with the regular holiday stress we were tired.Shortly after the New Year Martin's Grandma passed away. This was and is very difficult. His Grandma felt like the glue that held his family together through thick and thin. We were devastated. 
There has also been a change in my family that makes me incredibly sad, I can't go into detail because I don't want to air anyone's dirty laundry. Nevertheless it's something I worry about. 
All of these family troubles have made it a rough start for this year.
I worry for people, more than I probably should. I want to fix problems for people that I can't and shouldn't. This is a hard lesson for me and one I'm still trying to learn. 
I've got problems of my own to focus on but I can't help aching for the people I love when they are struggling. It's easy to let it all get overwhelming. I'm really not sure what the point of this post is today. I just needed to get it out of me. I don't have an easy answer for any of it. 
All I have for now is hope that things get brighter, that the people I love will get through the darkness. 
I hope, I hope, I hope.

Gratitude

Having my kids has changed me as a person. It seems pretty common for most parents, whatever personality your child brings to the table molds the outlook you have on life and people around you. 
What has been inspiring are the changes that have happened to the people around us because of our children. Family and friends have told me learning about autism and knowing E-man and Little Buddy have given them a new perspective and that it has changed their actions. 
My 18 year old niece told me she went to a friend's party awhile ago. This friend had a special needs family member in his teens as well. He was a little awkward but eager to talk to people and my niece sat down and had a conversation with him. She told me later she thought about when E-man was older and trying to talk to people how she would want them to treat him. That she hoped a girl wouldn't shoot him down immediately because he was different. 
My sister said she doesn't judge parents who have kids that might act a little funny in public. Now she understands sometimes there is more to the story than what you see at a check out lane at Target. Not only has she had this realization she defends those kids to others not so accepting. 
Their grandparents have also changed. Knowing the kids' unique likes and dislikes, have gone out of their way to provide special things and time to spend with them. 
Sometimes it feels like I talk endlessly about their autism because I'm almost afraid family will forget. Obviously that isn't going to happen but it's this weird anxiety that I have. What's awesome is seeing that what I have said wasn't in vain. Our families understand when we have to take Little Buddy to a quieter location when things get loud. There have even been times I am so stressed out at a social gathering a quick thinking grandparent guides me in what to do, suggesting something I told them worked previously. People are listening, more than I thought. 
It means so much to me that not only are my children loved and accepted but fully embraced. Their oddness is OK.  Not every family facing similar challenges has the support we do. It makes me feel so lucky, so grateful to know my friends and family are listening, hoping, praying and loving us and the boys. I just want to say thank you, thank you, thank you.

Stressing Out

Things have been going fairly well around here. We were a bit nervous a few weeks ago because E-man's IEP was coming up. Typically to continue with the same program (basically justify the school district funding) the kids have to meet 80% of their goals. While E-man has been doing well in many areas, language continues to be a struggle and he wasn't quite meeting the 80% mark. Through some stroke of luck they approved the funding anyway and we will continue with the program. It was such a relief! 


The team we work with really cares about E-man and Little Buddy and are constantly tailoring lessons to meet their needs. We have great communication with them and developed a friendly rapport. It's like the dream team of autism! 
Now we are contending with insurance. Legislation was passed that requires insurance companies to cover autism therapy. This all great, especially for people in crappy school districts or counties that aren't helpful. For us it means jumping a lot of hoops in order to continue therapy. 


We had just started the process of getting the paper work going with our insurance when we found out my husband's company is switching insurance providers. After eight damn years this place decides to change? It must be some kind of karmic twist of fate because really we need more aggravation right? 
Anyway, it looks like we will be switching to Kaiser. 
And of course the kids have to go through a "rediagnosis" process so Kaiser can determine if they qualify for ABA therapy. You know because having a diagnosis from the MIND Institute of UC Davis, a leader in autism research and treatments, isn't good enough. 
Oh! And just to spice things up in May of 2013 the DSM (Diagnostic and Statistical Manual)  is being updated with new and "improved" qualifiers for autism diagnosis. 


UNIVERSE I AM DONE!


I'm not sure what else could be thrown in to stress us out but I can't exclude a natural disaster. 
So now we play the waiting game because we don't switch to Kaiser until January 1st. 
I am stressing out. I'm tired, I'm worn thin and this is just the beginning. Sometimes it's overwhelming what we have to do in order to obtain the best for our kids. Sometimes I wish it were easier. So I'm letting myself be upset and stressed out today. Tomorrow I'll rein it in and keep going. Thanks for listening. 

Four Years Old

Wow time really does fly when you have kids! Today E-man is 4 years old, I was so excited this morning it felt almost like it was my birthday. We made him chocolate chip waffles for breakfast and later today he'll have a little birthday party at school with his friends.
Sometimes it is still weird to me that I am a Mom and in charge of this little guy's life. It feels like I have been a parent forever and at the same time it feels like I just started yesterday. In honor of E-man's birthday I want to write a list of what he has taught me so far about being a mom, a person and about life. I think this list will grow exponentially, but here are the highlights.

1. Strength
I think most people don't realize their strength or potential until they are tested or met with a challenge.
E-man is challenged everyday in the therapy he does at school, to help him reach his full potential. When I start to feel overwhelmed with kid stuff, autism stuff, or life stuff I think about him and the fact that he keeps going. He has learned so much and if he can persevere, so can I.

2. No Judgement
Before having kids I was sometimes judgmental about how parents handled situations with their kids. Now I know what it is like to be stared at when your kid is having a meltdown or acting kind of funny in public. Nowadays when I see or hear a kid in public having an issue instead of thinking "Why does that parent let the kid get away with acting like that?" I think "Wow I hope that parent is ok and they can get through it".
I understand now how hard it is so I want to be graceful to others when they are having a hard time.

3. Hope
When E-man was diagnosed with autism it felt like there was no hope, no future and things were bleak. I can say we are very much past that stage and feel so much hope for his and Little Buddy's happiness and abilities in the future. It takes hard work but all things are possible when you let hope take a place in your heart.

4. Acceptance
Sometimes things don't go the way you planned or had dreamt. What I have learned is that through the challenges you can get to a point of acceptance and that's really when the fun starts. Once you can get over the previous plan you had mapped out in your head, your mind starts a new path, a new road to discovering what is important, what is worthy and what will still fulfill you.

5. Appreciation
I think having kids has taught me to appreciate what you have within personal relationships instead of material things. Spending time with people is really a priority lately. I think that is because time has become a hot commodity. With work, school and regular house errands to do it can be hard to squeeze in quality time with people you love. I try to make as much time as I can in our schedule and even then it doesn't feel like enough. However, I appreciate every get together and time spent with great people.

6. Balance
Balancing being a wife, mother, sister and friend is a challenge all by itself. I do not proclaim to be good about it yet but it is something I have realized is a worthy goal to attain. I need time for all aspects of my life in order for the whole to be happy. This is still a work in progress.

7. Love
I love love love my kids and they love me back. It's such a deep, primal feeling of protectiveness and nurturing and I was surprised at the intensity of it all when they came into this world. That love is the driving force in my endeavors to build them up to be good, kind, strong, productive people. I now totally understand the term "Mama bear" because it feels that instinctual and natural.

8. Joy
I have learned to find joy in small things, when E-man requests to be picked up spontaneously instead of being prompted. When he actively engages with me in play time.  His laugh and spirit give me so much joy, it's immeasurable.

9. Family
Our families have been so supportive and helpful through all of this process. It would be difficult to manage without the conversations, tips, acceptance and love we receive from everyone in our circle. I feel blessed to have my family and to have married into a family that loves us and our children unconditionally.

10. Marriage
Marriage is so key to all of these things. I can truly say my hubby makes my life so great. To the basics of being able to stay at home with the kids because he works, to the laughter we share at 6 in the morning dancing around the kitchen making breakfast, he is vital in making this work. I've learned what we can endure as a couple, that we can cry for a bit then tell a joke to break the tension. Our marriage is strong and has a good foundation, kids test that foundation in a way that you can't predict.

I know there will be more to add to this list as time goes on, as new challenges and things come our way there are more lessons to be learned. Even if they are hard, I am glad to know that I will one day appreciate them as important tools in learning about life.

Happy Birthday E-man!!