It's just a day. One sweet little day. Some go by too fast. Some days are slow and sweet. Some are pain in the butt terrible...and some days make you fall to your knees and cry...
Like today...
And we will gather them all in our arms and hold them tight because they are a package deal..
I promised myself I wouldn't worry about it his first year of Life... It first hit me right after he turned a year old. 1 in 88 children are diagnosed with an Autism Spectrum Disorder... 1 in 5 siblings of a child on the Spectrum end up Autistic... Not great odds... At the time it was an understandable fear- punctuating everything I did-- but only for a few days...Worry makes me a terrible Mom so I put it in a box marked later and planned to deal with it then.
Parker Doodle, 12 months old
Perfect Parker, 15 months old
It hit me again- a little louder and a little harder at 15 months... No words... No pointing. Why doesn't he wave anymore? Silently begging others to tell me this wasn't so... Lapping it up when they did.
I finally realized at 18 months... And the world turned gray. It's when I was in the black hole. I no longer needed constant reassurance because I knew. I knew something...and I knew Parker needed help immediately.
The first time around when my 3 year old son, Greyson was diagnosed with Autism, I thought it would kill me.. This second time with Parker, just 9 months later, I kind of wish that it would. Please.
I believed everything I said to you. Life is what you make it and so on.. But that was before... When I had one typical child. One child who would be my saving grace. One child who would grow up and get married and have babies. One child who was easy. But now I think that's gone.
Today we went to the Central Valley Regional Center to address concerns we have with our almost 20 month old son, Parker and his development. If you have any concerns about your child, please ask your pediatrician for a referral to your state's Early Intervention Program.
We brought Plex- he's a yellow magic robot... We decided we could use some magic.
The screening process for a baby like Parker is a play based assessment done by a Nurse, a Speech Language Pathologist, a Psychologist and 2 employees of the Center. For the most part it's not too stressful for the little guys... Parker might go so far as to say it was fun...if he could talk.
Taking pictures as a reporter was much easier than being a Mom.
In addition to doing activities on a mat, he was evaluated using the Modified Checklist for Autism in Toddlers... The MCHAT. It's a screening tool for Toddlers between the ages of 16 and 30 months that is looking for Autism red flags. It's a series of questions asked to the child's parents.
Parker failed the MCHAT. They do not diagnose anything at the Regional Center until a child turns 3. And although I knew he would fail the MCHAT (I've practically got that thing memorized) it still hurts so bad that I can't even cry...but when I start I may never stop. A failed MCHAT doesn't guarantee a diagnosis of Autism... But it's not too promising either. The good news is- he is now eligible for Early Intervention services... But I don't really care about the good news right now.
Autism can look like many things friends... It can still smile and laugh... It can give hugs and kisses...it can even make eye contact...it doesn't always line things up or spin in circles... I didn't know that before. I tell you- not to scare you...but to create Awareness.
At first I wondered, Why does God hate me? I can't bear to think he gave me this because he thinks I can handle it. If that's the case- I'll fess up now.
Hey God, I CAN'T HANDLE THIS. Thank you for thinking of me though. Let me know if any other- fun opportunities open up.
Am I the only one who thinks that makes God sound mean? Doling out stories that make people feel devastated? I will give God another chance if he promises to help me through this- but I refuse to believe he sought me out for such sadness on purpose-- just because I could. I can't think that and still like him. (It's OK to doubt him. He told me. He is perfect and he already knows I'm not. He loves me just the same either way.)
God- please give me the energy I need to do the Life you gave Parker justice... He's pretty amazing and he deserves the best.
By the time Spring rolls around I will be OK.
I keep repeating to myself...There is unfathomable greatness in my future. I hope I believe it really soon.
I feel like I'm being born...I'm not ready to leave this dark warm space and it hurts and I am scared and I don't know what's waiting for me on the other side.
Friend- tell me the meaning of life. What is it all about? Doing justice to the gift of Life? Embracing our gifts even when disguised as problems?
What is the purpose of your life? A question many of us can answer in a quick and anecdotal way- God, my spouse, my family, my passions... But I wanna get down and dirty- yes- dig deeper... Why do you exist? Why do I exist? Right now it's all so confusing and so clear all at once.
What am I supposed to learn from this journey? Am I supposed to learn how to adapt despite circumstance? How to find the greatest of beauty in a new pair of socks or a brand new bag of Swedish fish candy? How to cultivate gratitude in the midst of sadness? How to let go of comparison and envy...anger and entitlement?
Today I told myself- no matter how bad of a day you are having- there is someone out there having a worse one... and then I told myself, If you don't believe that- go to a chemotherapy infusion center and see... and if you don't believe that --go to a morgue and see. Someone is always having a worse day.
I went for a run in the rain tonight... I needed to replace the numb with anything...cold- even pain...And afterwards there was still nothing...No- I feel better now...
No relief, no release at all. Because the truth is- no run, no pill, no booze, no number on a scale no new pair of shoes can touch this ache.
Only time...
And so I wait.
I have a favor today... It's a big one... share a link to this blog on your Facebook page today...Ask your friends to share it with their friends...It's a huge deal to me...even more so now...help me reach more people. Helping people always takes hurt away.
Love,
Chrissy
Bless you and yours.
ReplyDeleteTake life a day at a time and know that there are many others who know your pain and can share the simple joys of being in this wonderful world together. Take pleasure in knowing that despite the difficulties and challenges you face, God has blessed you with beautiful children to love. Hug them often and hold that tiny hand in yours. A child's love grows within. They may not always show us what they are thinking but they are always thinking and changing. I pray that you will gain patience and wisdom. You have already helped others by sharing your story and photos. Please continue to do so and may you find the joy and happiness that comes from helping others. Trust God and He will give you strength...
ReplyDeleteI've always hated that stupid line, "God only gives you what you can handle". It's never seemed particularly reassuring, and yeah, makes God seem pretty mean. There are many things I don't understand about God, but I know he's not mean. I'm so sorry you're having to go through this. Motherhood is so very, very hard sometimes. There was a time when my own son was a baby, and we knew "something was wrong" but no one knew just what. It was such a scary time, just loving him so much, but not knowing what we were dealing with, how the future would look for him. And I would just want to hold him tightly and scream into the mysterious unknown, "Don't you dare touch my son! He's just a baby!" That was four years ago. Things are clearer now. Things are better. I don't know you and your family, but I feel like I know you somewhat from reading your blog posts and seeing your photos, and I do know this: Greyson and Parker are so fortunate to have you for a mother. You are such a strong woman, such a good mother to those two wonderful little guys. You're like a mother bear, fighting for them the way you do, working so hard to make their lives better. It seems like it would be so hard sometimes, so wearying. But you do it, every day, and in that, you inspire me. Hang in there, through this scary, uncertain time. There are many people out there who are on your side, thinking about you and praying for you. Whatever the ultimate outcome of all this is, Parker is and will always be a beautiful, precious soul.
ReplyDeleteThank you for your blog! I've shared it with someone who I know probably needs to read what you wrote and will share it again I'm sure! You are a courageous and an amazing mom! Your honesty and openness will help so many. Your boys are blessed to have you as a mom! Praying for you and your beautiful family!
ReplyDeletePraying for you...and with you
ReplyDeleteWhat beautiful words... I have gone/am going through a similar situation. My beautiful daughter is now almost thirteen and has severe cerebral palsy.. I can totally relate to your feelings and your blog made me cry... The best piece of advice I received when Grace was born was not to look too far ahead into the future... This has really helped. Try to take one step, one day at a time otherwise it is way too much to handle. Another thing I found is that as human beings we are very adaptable. You can get used to pretty much anything in life - truly. I no longer cry my eyes out when I see mothers and daughters without an apparent care in the world... Grace is just Grace and with all of the problems and limitations and fear I still wouldn't trade her. My adorable angel touches the lives of all who meet her..and because of this it seems she is on this earth for a more noble purpose than the average "rest of us"... Not much consolation I know... but true I think.. The best to you and your family. Keep up your strength and courage..and sense of humor! Heather
ReplyDeleteI've worked with spaecial ed students since I was to young to...My Mom was a secretary at a special school and that's where my journey began 26yrs ago. I wouldn't trade it for the world.....I loooooooooove my special students, kids, friends, and the many loving people i've met along the way. Yes it's hard, but trust me the greatest days are like when a child learns the simplist of things is soooo very awesome. Those days make up for the hard. You strive and fight for what is right for each individual. The one thing I live by from experience is that you never give up....you fight for them all, even if it pisses someone off, someone has to fight for them....You love them unconditionately (yes we all have our hard days but just remeber those awesome days) and you push for them (at school, all their rights, all their extra' they say they can't provide (bull#@>*) Fight fight fight, you push them too, even if it means they get upset or mad (because in the end they respect you more than someone who doesn't) Treat them as normal as you can don't hamper them in anyway, figure out the ways they learn or think, or process, take the time to do this....And PLEASE if you see someone working with your child and they just don't seem to get it...it usually means they don't, they won't or they plane just don't care and fight to get your child to the right ones who do (it's there right and theirs). Never give up, ask for help, take breaks, look for sitters that work with spaecial needs children and go out!!!!! Don't stop living, just include your child in your life the best you can. Much Love,Prayers, Strength and education for you on this journey.......
ReplyDeleteYou and your beautiful boys are in my heart and prayers. Thank you for sharing your heart even when it hurts. My heart hurts with you today but tomorrow will be a new and glorious day. Love and prayers.
ReplyDeleteThnking of you and waiting with you.
ReplyDeletebig hugs..
You are amazing! Your boys are so lucky to have you! Sending you love and hugs!
ReplyDeleteJust found your blog and am loving it. Doubting, wondering, waiting with you here in Maine, another mom of a child with special needs. Thanks for sharing your story and helping to make this world a more accepting place for all kinds of different kids. Heather
ReplyDeleteTears and encouragement. This is what I found with this heartfelt, touching post. Tears because, although I do not have two children with autism, I do have one and I remember so vividly how I felt the day we found out. How I felt when I drove home from the final evaluation. How I felt when I had to tell Casey, my husband, who was waiting at home for the news. How I felt when I thought of Cali's future. And encouragement, because I am not alone. Thanks for sharing.
ReplyDeleteOh my heart bleeds for you and finds comfort in our own journey- 2 babies with special needs- I will walk with you here in MN- its better to not be alone...thanks for your raw soul.
ReplyDeleteThank you for sharing your story. I am in a time of waiting as well. My 18 month old has been referred for a team evaluation to better diagnose his "developmental delay." I am told they try to fast track the younger ones because early intervention is key. But, the truth is, it could be 6 months before we know more. My son fails the M-CHAT as well. We were assured that autism is not the only diagnosis that comes from these evaluations, but it seems like there aren't any other possibilities. My pastor shared your blog and I am very excited to read more. Good luck as you continue your journey! By the way, I love the name Parker, that is my son's name too!
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