My Joy. My Joey.

I sat in the Neurologist's office on a frozen Rhode Island morning trying to comprehend the words I heard. "Mrs. Worthington, He may never walk or talk."

My third son, Joey, had special needs. He had External Hydrocephalus, hypotonia and would later be diagnosed with Verbal Apraxia.

My heart sank. As I held my year old baby in my arms, I quietly cursed myself for whatever I had or hadn't done for him that caused his problems. I cursed the world. My life quickly became devoted to his recovery.

~Wishing. Hoping. Praying. Working. Loving.~

Fast forward three years, add in two million hours of Speech, Occupational and Physical Therapy, a specialized diet, specialized supplements and countless tearful prayers. My boy learned to crawl at 19 months. He said "Mama" at 3. He said his first sentence at 3.5.

Now, at four cheeky delightful years of age, he is a swashbuckling chatterbox. Oh, and we let him get away with way too much. Seems like when we were concentrating on helping him overcome his challenges, I forgot to discipline as much as I should of. Whoopsie.

The blessings (and trials) of a big family are endless. Joey's four brothers do so much for him. He learns patience and empathy while caring for his little brothers. He pushes himself and strives to keep up with his older brothers. And from his big brothers he also learns when enough is enough.

Case in point-

See Joey sneaking up on his eldest brother?

He is choking him for no. good. reason. What a stinker!

Hmmm, not sure what happened there. Let's call it Logical Consequences. Boys just love to learn the hard way.

Not one to let anything get him down, in the wink of an eye, he is ready for his next adventure. He wears us out with his energy, his spunk and his zest for life.

This week, I am reminded of just how far my little Joey has come. I am so grateful for his successes, his stubborn will and everyone who has supported him through his four years.

Now, can someone come teach him to obey his Mommy? Anyone?

No, really, anyone?

*crickets chirping*

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

What are you grateful for? Tell the world just how supa-fab you are. What makes you happy? What do ya love this week? Join in the most low-key meme on the planet. So low-key, it doesn't even have a name!

To join in "Insert Witty Title Thursdays" just link your post here and then link back to this post on your site. Use a snazzy graphic if you like. The only rule is you have a post devoted to finding the good in life. Remember, life doesn't suck as much as you thought, right?

Love, Fussy

Comments

[Velma]

My son has special needs as well. What he doesn't have? A brother to teach him. What he does have? A big sister he loves more than anything. Tonight she was at a rehearsal for a play, and couldn't give him his usual bedtime hugs and kisses. He ended up hugging a framed photo of her and her friend, snitched from her bedroom, because he missed her so much. Yes, he has issues, but he's also got the greatest relationship with his sister I could hope for.

[owlhaven]

Sweet post. We're getting a neuro consult for one of our kids right now....nerve-wracking to face unknowns...so it was good for me to read this good story about your child.

Mary, mom to many

[Momma's Tantrum]

I have now vowed to play forever. If I don't you can take away my precious coffee.

I love that your boys are so fantastic. That Joey has come so far, is truly a gift. So he is a little spoiled? He is only 4, he has lots of time to listen to Mommy.

[Lisa@blessedwithgrace]

Ali, thank you for sharing this with your readers. I am touched and moved. Your son is beautiful and precious. I know that your Joey's story will inspire and encourage other mother's who have similar circumstances.

[Jeremy (Discovering Dad)]

It is so nice to hear someone genuinely appreciate the blessings of a child, even though there are many reasons to feel otherwise. Very inspirational! I'm thankful that you shared this post with readers!

[Jenn]

We also have a child with verbal apraxia and try to remember to be thankful for the small miracles every day instead of being despondent over the challenges we see looming ahead (and many days its tough to remember to be thankful). I've still never heard a spontaneous "Mama" from her, but I'm thankful that she finally learned to say "help" instead of just crying because no one knew what she wanted.

Thank you for sharing. It's good to know that we're not alone in this challenge, and that by itself is something to be thankful for.

Jenn

[Lisa Russell]

I always knew you were more amazing than meets the eye. Very precious story, thank you for sharing. It helps puts things into perspective.

[Lizzie]

Wonderful post.

We have a (now) almost 10yo autistic son. He said his first word ('duce' - juice) at age 2.5. At three (at his first autism assessment) he had just a dozen words. At 3.5 (his second assessment and eventual diagnosis) just 50ish. I had a preschooler, a toddler (his younger brother) and a newborn (his sister, born between the two assessments), my husband was in the middle of specialised work training and living on campus during the week (only home weekends), Hubs had glandular fever, I didn't drive (didn't have a second car anyhow), I was constantly on my way out the door to therapy playgroup, speech therapy, childcare, kindergarten (later) and to put the icing on the cake, J wasn't yet toilet trained (and wouldn't be for another two years). I honestly have no idea how I got through that 6mo stretch. The first two or three years were among the worst of my life. At the time, you just kind of buckle down and get done what needs to be done but looking back you realise how close you were to breaking down. It became extremely obvious just how delayed his speech was when (later) his sister reached two years old (when J had had no words at all) and was speaking in full, comprehensive sentences.

The payoff? We were to learn, after a couple of years in school, that J is high-functioning autistic and on par academically (and in some cases, above average). He taught HIMSELF to sight read at age 3, before he had functional speech (its a complicated story but essentially, we eventually worked out he wasn't just repeating words verbatim - typical of ASD kids). He was toilet trained (I cried buckets and buckets when the light finally came on...he had just turned 6), and he is the MOST delightful child these days, testament to the amazing, supportive teachers and therapists who worked with us during the early intervention years and into primary (elementary) school.

It's a wonderful thing when we see these kids, who have had extra stuff to battle in their short lives, standing tall, isn't it?

Cheers,
Lizzie
http://lizzieshome.com/
http://whisperofgrace.blogspot.com/ (encouragement and resources for the new Christian)

[Kelley]

We were told Boo wouldn't do a lot of things. Talk, toilet train, go to mainstream school...

He has done all of them (well the toilet training is still an issue but yeah, whatevz) and surpassed all 'their' expectations.

I am grateful that I didn't listen to 'them' or was distracted by something shiny or thinking about shoes or something.

Cause my Boo is amazing. I am so blessed to have his light in my life.

Smootches Fussy, thankyou for sharing your life with us.

[Heather]

Wonderful post about the joy of your life. Well, one of them anyway! Thanks so much for sharing, Fussy! You RAWK!

[Givinya de Elba]

Way to go Joey! As a speech pathologist myself, I wonder why doctors still trot out that tired old line: "He may never walk and talk." There's no way we could possibly know how a child will respond to devoted input from parents and therapists and countless children continue to surprise us with their progress. Keep going strong Joey! And hey while you're at it ... be good to your mum, okay?

[Jen Reed]

Came across your post via twitter and had to stop and comment. This brought tears to my eyes. My little boy is 3 1/2 now with no special needs other than we thought he'd have delayed speech issues. Since April I can say we will not have to worry about that "problem" as he is a chatter box now. And in the past month or so has become incredibly strong willed and unfortunately "obey mommy" is NOT in his new found vocabulary. lol! Didn't mean to babble at you... just wanted tell you that your post touched me when I was least expecting it.

[iPost]

And I am confident that most of his recovery had to do with your undying love and incredible will to make him better. Great post!

[The Domestic Goddess]

I have two boys on opposite sides of the Autism Spectrum. I can totally relate to this because I've basically been told the same thing. "He won't talk. He won't be able to communicate. We don't know how to help him." We're in the midst of major-heavy-duty therapy. He still doesn't talk. But he smiles, he plays, he loves, he points and he signs. I'd say it's a major accomplishment. What else does he do? He says "Mama." Never thought I'd hear it.

Thanks for sharing your joy! It reminded me of mine!

[Savvy Housewife]

What a beautiful story and beautiful photos, too. I had no idea...you do have a lot to be thankful for.

The pictures of Joey brought joy to me this morning mama. :)

[Kelly @ Pass the Torch]

Fussy - that's a beautiful post. Your Joey obviously is your Joy. I love the interaction between your boys too. There's nothing better. We always tell our kids, "you'll have each other forever - after we're gone."

This is such a fun project. Glad I was able to steal wi-fi today!

[Rightmyer Rants]

Hi - I'm popping in for the first time on a recommendation from Momma's Tantrum.

You are such an inspiration! I'll be checking back in.

[Jennifer, Playgroups are no place for children]

I had no idea! I'm an SLP and hearing that a doctor said he may never walk or talk when he was ONLY a year old makes me angry. SO GLAD he's proved that silly old doc wrong.

What a wonderful gift he is and something to be very thankful for!

[ScrappyQuilter]

My 19yo son has special needs--many different issues, but the one that is really scary is a brain tumor (a benign lipoma) that may stay small or may suddenly start growing at any speed at any time of his life. He needs CT scans every 3 months for the rest of his life.

We were told several years ago that he only had about a 20% chance of ever being able to live on his own, a 50 % chance of being able to live at home with us, and a 30% chance of needing to be institutionalized. MANY, many prayers (and tears...and tantrums) later, he has his own apartment and uses public transportation to get himself to his appointments. This Saturday he will be taking his GED and then going to Community College to get training in computer programming/information technology.

Like a lot of Moms, I learned to NEVER let a doctor tell you what is or is not in the future for your child! We need to keep our special kids always in our prayers and never forget that God is GOOD!

[Malia]

Thanks for sharing that with us! So sweet...but dang it, did you have to make me cry before I even had my coffee? Put warnings on these kinds of posts lady! ;)

[Alli ~Mrs. Fussypants]

Wow, I am so touched by everyone's stories. Beautiful.

[Strawberryparfait]

I'm grateful for my twin sister.

She passed away last year at 24yrs old.

Not bad...for someone the doctors only gave 24hrs to live when we were born.

She was born with spinabifida and hydroencelphlous (spelling?? water on the brain).

They (the doctors) said she would never speak, but she could make sounds we came to recognize. They said she'd have no balance, she learned to sit up for short periods. They said she'd never walk, she learned to crawl/scoot around faster then I could walk. They said to put her away from society, she laughed and brightened society :)

I praise God for the miracle that was her :)

To see a picture of her (at 23yrs old) and a short testimony of her...it's on a link on the right side of my blog listed as "In Memory".

[Mandy]

What a beautiful post!
I don't have anything spectacular to add. Just a second to the idea that your commenters have truly beautiful stories, too. I LOVE this idea, and though I may be late (as I have to leave now), I will try to come back and participate with this theme. :-)
Oh, and can I come play with your kids? They look like SO much fun.

[Katie in Ohio]

We're doing the Early Intervention thing, too. Making progress though... Speech therapist have my respect. Bleah!

[We are THAT family]

Thanks for sharing this! It was beautiful and I'm sure it will bring so many parents in the same situation, hope.

[Michele]

That son of yours (both of them) is darling!!!! Good luck! My prayers are with you, but such a blessing for your son that he came to your home! I love your blog!

[MaryAnn]

It is official. You are my hero. Thank you for sharing this with us.

xoxo

[Jackie W transplanted Okie (Buried in Legos)]

I'm playing Mr. Linky today, but after that mine is pretty lame.

No one will tear up or choke up while reading it.

We have a 2nd born nephew that didn't talk till he was 3. Then it was in complete sentences. His older brother did the talking for him.

Your other sons will probably have extra empathy.

[rachel]

God is so amazing.
He is too cute. All your boys are handsome though.
Your strength and faith are inspirational.
Smoochiekins.

I'm blessed because after 1 week of rain it has stopped and we can go to the big pool. One more day of rain and y'all would have seen me on the news. 'Mother in South Texas driven crazy by rain. Jumps off roof of one story house and breaks both legs'
She is thought to have said: At least the hospital isn't inside my house.

[Kimberly]

I'm not sure I'm going to have time to get one up today, but I wanted to let you know that this post brought tears to my eyes (in a good way). What a beautiful post and beautiful boy.

[Keryn]

Wow. Miss Alli, thank you so much for sharing that.

My third child, G., has spina bifida and hydrocephalus. I sometimes feel uncertain about our decision to have another baby (due in November, our third boy!) so soon, when G isn't walking and may never. (G will be almost two when the new baby arrives.) But (and I don't know how you do it) your life gives me a lot of comfort. You deal with life with such humor and grace!

On another note, our doctors (we are blessed to have a fabulous childrens' hospital about 50 miles away) have never told me G won't walk. They've never told me he WILL walk, either. They just tell me that each child is different, that G is doing marvelously, and we'll do everything we can to give him the tools he needs. I love my doctors and therapists SO MUCH.

[mamikaze]

I bow to therapists. I owe all my daughter's progress to her tenacity and therapists. SLP, OT and PT have helped her blossom it the gregarious, precocious girl she is today.

Nice job keepin' it real, Fussypants. *high five*

[Ashley]

This story made me smile, both inside and out. What a beautiful, heartwarming story. Joey, and all your children sound wonderful, if not a little devilish (but what children AREN'T? :) )

Happy thursday!

[Don Mills Diva]

What a beautiful post - I don't blame you for letting him be a bit of a little devil - I'm guilty of that myself - I can't help but revel in my son's spirit...

[Amy @ Milk Breath & Margaritas]

Oh Fuss - how devastating that must have been. But look at him!! He looks healthy as a horse. Ornery too.

[Jenn]

I'm so happy that everything turned out way better then that stupid doctor said it would! Loved reading everyone else's stories too!

[mimipz5wjj]

Wow! Great post! And how wonderful he's been able to overcome his special needs!

[Suzanne]

Woo hoo! Thursday doesn't suck! I'm leaving work in 30 minutes!

Thanks for the fun post.

[EMama]

I'm crying. At work. I love you, Fuss!

[Domestic Spaz]

How sweet is that?! You have to love boys... just look at those pictures!

[ali]

what an amazing little boy you've got there..even if he doesn't obey his mama ;)

[Lorri]

Great post Fussy. We have lots to be thankful for.

[Beck]

I LOVE this post!
My Girl has been in speech for most of her life now, and back when she was nearly three, one of her friends was diagnosed with verbal apraxia too and now he's doing FINE.

[Alison]

Uplifting story thank you Fussy and a great reminder to rejoice in how great my own four year old is doing--he was in a failure to thrive condition for a couple years where we had continual testing for CF, kidney disease, etc. and then his physical development was slowed due to the overall weakness. But since his birthday three months ago he has literally come leaps & bounds and although still small for his age, people are no longer constantly telling me how small/skinny he is. Yay!

Thinking of you with the jobhunting & house situation....we are 6 weeks into our own layoff experience.

[Lizz @ Yes, and So is My Heart]

I think it is impossible to read that as a mother and not have tears in your eyes. Thanks for the reminders to find the good. Your outlook is truly inspiring.

Oh, and obedience is overrated. Right? Right?

[themommykelly]

Beautiful post, Fussy! It just goes to show how far hope and determination can take you. And anyhow, discipline is overrated!

[Pat]

Hi Fussy,
Your post made me cry. I know what you're going through. My son 7 yo has autism. His original diagnosis was severe. With ST, Social Skills Group, Speech dyad and 35 hours of ABA/week, he's made outstanding gains. His developmental ped & neurologist informed us if they saw him today, his diagnosis would be PDD NOS or Asperger's as opposed to "classic autism". He's very argumentative which can be frustrating, however, my husband reminds me there was a time when we never knew if he'd have speech and of the parents of children that will never hear their child's voice. It puts everything in perspective. He's in regular ed with a 1:1 for peer interaction and to ensure he stays focused. Above grade level academically. His doctor's can't believe it. I'm certain Joey's progress is due to you and your commitment to him. I applaud you. I don't know how you do it. I only have one child and the cost of therapies is overwhelming. But, I don't care. I always joke and say I've already paid for a few college educations. So when he goes I won't have sticker shock!

[The Apron Queen]

What a sweet boy. I love happy endings. Go ahead & spoil him. It'll be OK. Just don't let him strangle his brothers too often! :)

I just happen to have just blogged about my teen daughter wearing my apron that I hadn't even worn myself yet. The nerve of the girl. :)And I gushed a bit about how cute she is & how much I love her. Fits this meme well.

For your daily dose of vintage goodness a bit of silliness, stop by Confessions of an Apron Queen: http://anapronaday.blogspot.com

[Adriane]

What a sweet boy you have!

This was a special Thursday for me....

http://fleadlure.blogspot.com/2008/07/happy-day.html

[Dorothy Stahlnecker]

Wow, found you on fenicle's site...will be back...what a wonderful post..blessings, and yes I have mine..just finished 6 months of chemo for Ovarian Cancer, stage 3 b..I'm 62 and its been an upward battle..my daughter and her 7 children, are my blessings and my husband's of 7 years he has three daughters..and we are a wonderful family.. I pray God gives us 40 more years to live and love..

Blessings to you...

Dorothy from grammology
remember to hug gram
grammology.com