August 11, 2019
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 6:36 am by autismmommytherapist
On a Thursday night not too long ago I watched as my youngest son gleefully posed for pictures with Kylo Ren and Princess Leia, then sparred a bit with Obi-Wan just to round the evening off.
And no, he wasn’t at Comic Con.
For the past seven or eight years Zach and I have attended Star Wars-themed nights at the Brick Public Library, and for years those evenings have remained some of Zach’s favorite summer events. In past years the creator, Miss Michele, has included such events as games, raffles (with awesome prizes!), scavenger hunts, photo opps, and the most important event, a visit from the 501st Legion.
The 501st is comprised of a group of volunteers who make detailed Star Wars costume replicas and put them to good use by fundraising, doing charity work, and volunteering. Fortunately for us one of their annual events is our library, and I know it is the highlight of the evening just by listening to the kids who attend and watching their faces as they walk into a room with all their favorite Star Wars characters.
I admit, as a four-decade veteran Star Wars fan, I get a little verklempt too.
This summer Miss Michele as asked to consolidate what used to be several events into one jam—packed evening, and both Zach and I agreed it was her best event yet. Of course since it’s a library there were dozens of amazing books as free giveaways, more incredible books to be won by raffle, and a great talk by the 501st encouraging kids to follow their passion for Star Wars (and reading!).
Trust me, it’s an evening the adults enjoy just as much as the kids.
And truly, nobody enjoys it as much as Miss Michele. I am certain these evenings require a great deal of work and organization on her part, and she continues to outdo herself every single year. Her dedication to children and to fostering their love of reading is unsurpassed, and our town is very fortunate to have her.
And since I enjoy these nights as much as Zach does, we truly are lucky.
This year for the first time Zach won a gourgeous (and huge!) Star Wars book which will take him the entire summer to finish, and the smile on his face when he learned he’d won was incandescent. It was a wonderful way to wrap up our evening, and when I asked my tween if he still wanted to attend next year, there was a bit of eye-rolling with his accompanying “yes Mom!”, so I know we’ll be doing at least one thing together next summer.
So thanks for that Miss Michele, and thanks for creating an event that is the highlight of many kids’ summers.
May the Force be with you all!
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July 22, 2019
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 6:28 am by autismmommytherapist
.
It’s 6:00 AM, and I can already hear the “thump,thump,thump” of Justin’s glider and his accompanying vocal stims as the morning unfolds. We have just spent sixteen days together during the first of two breaks from summer school, and this morning he will ascend his golden chariot and return to a new teacher and a new building.
Am I a bit nervous? You bet.
I am comforted however that except for a few blips here and there our time together was lovely. We got somewhere fun every day except two, and he did beautifully at a new day camp I’m hoping he will be able to attend for decades to come. I’m hoping his “streak” continues with his new educator and location, am comforted that he once had his teacher as an aide in a classroom several years ago, and hopefully feels comfortable with her.
We shall see.
But today I want to focus on the fact that after the horrors of last summer, my boy and I had fun together. We braved Hurricane Harbor, Great Adventure, and even made it an hour-and-a-half at the beach (that’s a good day). I still haven’t seen as much joy from him as we did before the tic disorder descended upon him, but I’ve learned to look for the absence of angst, which I think is our “new normal” for figuring out if Justin is happy.
Because at the end of the day, what I’m really striving for for him is not elaborated or complicated, although reaching both can be. I just want him to be safe, and happy.
It is ridiculous sometimes how difficult those two things are to achieve.
But as he starts this new chapter in his life at school I have hope, and supreme confidence in the staff at his wonderful school. My boy may not like change, but change is a staple in life, and he will have to continue to learn to weather it, and hopefully embrace it too.
As will his mother.
So fingers will be crossed as I wait to hear how he did. Gratitude extended to the universe for how well the last two weeks went.
And hope that all will be well.
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July 7, 2019
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Jenks Boardwalk at 6:40 am by autismmommytherapist
It was a walk we’ve taken dozens of times since we moved here thirteen years ago, my sixteen-year-old severely autistic son and I. As usual Justin was a few steps ahead of me as I tried to lengthen my stride to keep up, and I had to smile. This was perfect Jenks boardwalk weather, low humidity, a lovely breeze, abundant sunshine. We were just about to leave the residential area of the boardwalk and pass the aquarium when an elderly woman passed us a few feet to our left, at which point Justin let out one of his vocal stims, just one, and not very loudly at all. A moment passed, and none of the families around us even looked at him. I was contemplating what to make for dinner when I heard it, and whirled around in disbelief.
“Shut up!” screamed the elderly lady in the black beach coverup at the top of her lungs, looking weighted down by her chair and bag, staring straight ahead so I couldn’t get a look at her face, just the back of her head. Rage and disbelief in equal measures engulfed me, and I yelled back “What did you say?!” to which she responded again, but halfheartedly, “Shut up!”.
God, there were so many things I wanted to say to her, but there were little kids all around us, and the teacher/mom in me won the battle of restraint.
Instead of calling her names any good Jersey girl knows I told her to shut up, and screamed that she should be ashamed of herself.
Then I ran to catch up to Justin, absolutely fuming inside that this miserable excuse of a human being could intrude on one of our favorite places, could affect our sanctuary.
There were so many thoughts spinning in my head at that moment. This was only the third time in Justin’s entire life anyone had ever said anything mean to him, as the community we live in is so accepting of autism. I desperately wished another adult was with us so I could rush back to that woman, get in front of her and take her picture and plaster her all over Brick Shorebeat and the Point Pleasant Patch. I contemplated how good it would feel to go all “Cersei Lannister” on her and just intone “Shame, shame, shame” as I followed her back to whatever rock she’d crawled out from under.
I wanted to scream at her that for all his lanky height he is still a child, that she had no right to yell at him.
In the end I could do none of it, just try to keep up with my kid as we headed to our car.
There were so many things I wanted her to know.
I wanted to tell her that this child she was screaming at once wrapped his arms around his teacher after missing a week of school to Hurricane Sandy, and for two hours refused to let her go.
I wanted to tell her this “different” person she’d unleashed her invectives on could read at three.
I wanted to tell her my sweet boy at sixteen still loved to cuddle with me at night for his bedtime story and songs.
I wanted to tell her that before she died I could almost guarantee she’d know someone who’d have a child with autism. I hoped she’d never forget what she did today, and I hoped it would haunt her.
I wanted to tell her she’d picked the wrong mom to mess with, that my “autism tribe” doesn’t put up with this crap.
And as my breathing slowed and my heartrate slowly returned to normal, I wanted to tell her this.
I wanted to tell her that because of this wonderful community in which we reside, that she was negated, that she was nothing.
I would have liked to tell her about the man at Great Adventure this past weekend who asked if he could help us when we were having a rough moment with Justin.
I would have told her about POAC Autism services, how their trainings and events gave our boys someplace to go in the early years when outings were so difficult.
I would have shared with her how amazing the teachers, paras, principals and social workers in the Brick schools and at Search Day Program have been to our boys for the past thirteen years.
I would have told her about how kind our neighbors have been, that there is always a “hello” for our boy whether he responds or not.
I would have shared with her how unknown patrons at iHop had paid for our lunch on Mother’s Day, just to be kind.
I would have told her my son is a thousand times more loving, brave, intelligent, and gentle than she could ever be.
I would have told this coward, who didn’t have the courage to face me and hurl her epithets, that all this collective community kindness cancelled her out.
We finally made it back to our car, and my boy gave me a fleeting grin as he climbed into the backseat, as always asking for water (he is the most hydrated child on the planet). I thought about how far he’s come, and how far I’ve come too. I thought about the fact that ten years ago her invectives would have made me cry, but that now nothing could touch me, or ruin my time with my boy.
I hoped she wasn’t local and would leave us soon. If not, I’m telling autism families to beware.
And as we headed home, my boy rocking out to the eighties with absolute delight, I took a deep breath, and smiled.
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July 1, 2019
Posted in Fun Stuff, Life's Little Moments, My Take on Autism at 10:35 am by autismmommytherapist
Every morning this past week I pulled up bright and early to the Monmouth County Therapeutic Recreation Camp at the Dorbrook Recreation Area in Colts Neck with Justin in tow, bouncing back and forth in my backseat rocking out to the 80’s (my kid has good taste). Each morning this week I got him and all of his paraphernalia out of my car, and escorted him to an open field where people with disabilities of all ages, even some elderly, were doing calisthenics on their ample lawn, many with smiles on their faces. Every morning I passed Justin off to his wonderful side (provided through PerformCare), kissed him goodbye, and headed back to my car.
Each day my fingers were crossed.
This is the third year Justin has attended this camp. His first year went spectacularly, and he truly seemed to enjoy the activities. Last summer was much more of a challenge. He had a wonderful aide, but even with a one-on-one I had to pick him up early several days for behaviors, which wasn’t a surprise given how much he struggled last year. This year, after things got better for him last fall, was a throwback to his first year.
And I can’t tell you how grateful I am.
Truth be told if Justin couldn’t handle camp he’d be back in school in two weeks, but those two weeks would be somewhat challenging logistically. This year my youngest is in school the first week, but the second he’s not, hence the challenge. It is still really difficult for me to take both of them somewhere by myself, as Justin often wants to leave the venue early, and Zach does not. Plus to tell you the truth, bad weather precludes us going anywhere anyway, and at least at camp there are multiple diversions for Justin.
My boy lies to get out.
But there’s a bigger reason why I’m so grateful he’s had a great week, and I’m hopeful that his second camp will mirror this one. Justin is graduating in five years, and it is my greatest hope (honest to God) that my son will be able to handle a day program so he’s not stuck in the house with me for, well, decades.
Simply told, I am just not that fun anymore.
Justin is a creature of habit, however once he’s “done something once” it becomes part of his routine, and he is generally amenable to the activity or venue. Giving him the opportunity to try new things will be instrumental in helping him acclimate to a day program after fourteen years at his beloved school. He needs new experiences to help him handle what’s coming down the road. He also needs to have his own life, and not just be reliant on me to do things and have fun.
Amen to that.
So I am grateful we’re back to square one, and hopeful this new camp will work out too (they do sleepovers!) so please keep your fingers crossed for us.
And for all those autism families out there, remember once in a while to take a chance.
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June 17, 2019
Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, teachers at 11:25 am by autismmommytherapist
To Mrs. Stockhoff, Mrs. Caruso, Mrs. Reilly, Ms. Estelle, Ms. Bearse, Ms. Byrne, Ms. Clinton, and Ms. Berry at Veterans Memorial Middle School,
I’m writing this post to thank all of you for helping get Zach (and me) through his first year of middle school.
Honestly, I think the transition was harder for me than for him.
In general I’ve found middle school to be something that most students just hope to survive, but Zach actually loved sixth grade and can’t wait for next year.
He did beautifully this year, and this is in large part to your collective excellence and devotion to your craft. You guided him when he needed it; reined him in when he required it; and most importantly, made him feel valued, and that he had a voice.
When there were blips in the road you worked with him to conquer them, with professionalism and compassion. When he excelled, you were there to congratulate him.
You answered my sixty thousand questions promptly and respectfully. For that, I am truly appreciative.
I am so grateful he had all of you to instruct him this year. He came home every day enthusiastic about school, often quoting you when describing his day. He found your classes to be fun, informative, and challenging in a way that kept him engaged, not frustrated. Your instructions and deadlines were clear, your expectations fair. Your assignments were creative, and often thought-provoking. You encouraged him always to do his personal best, and fostered independence in his choices and actions whenever you could.
As a former educator of this age group, I can honestly say I was always impressed.
While all of these things were absolutely wonderful, what I appreciate the most about every teacher who crossed his path this year was how much you “got” my boy, and that you clearly liked him.
That means everything to him, and to me.
I’d just like to say a huge thank you to everyone who instructed him this year. I wish all of you could move up to seventh grade with him (fingers crossed!), but since that seems unlikely, my hope is that he finds the same creative, compassionate and excellent instructors in the years to come.
Thank you for all you do for our kids!
Kim McCafferty
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June 10, 2019
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Someone Special Needs You, SSNY at 2:04 pm by autismmommytherapist
Twelve years ago this fall, when my severely autistic boy was four, a flier came home from school in his backpack. I skimmed it and almost tossed it, as the thought of joining any kind of group a half hour away at that point in my life seemed pure folly. I had a four-year-old autistic son and an infant at home, and as much as I liked to do things with Justin and get him out into the community as often as possible, this seemed a bit out of my reach.
And yet, the group activities for autistic kids were held in the building behind my church, a venue I was confident I could find (half the battle for me). I put it on my “possible” list of things to do, and when the day approached, I drove out to Colts Neck on a Thursday night and hoped for the best.
Thus started my love affair with Someone Special Needs You.
For years Vince and Gina Scanelli held monthly events where autistic children could come, do crafts, eat, play, and feel free to be themselves. Justin generally behaved at these events where he was paired with a buddy (usually a lovely teenaged girl, which he enjoyed), giving me the opportunity to network with other parents. Sometimes there was a full-fledged carnival; most years trick-or-treating in the church’s graveyard; and Santa never failed to pay a visit. It was an hour I looked forward to every month, and I am certain Justin did too.
Over time SSNY expanded to include adults, and its focused shifted as well. Now there are only two nighttime events held annually (a full-fledged yummy Thanksgiving meal and a visit from St. Nick), but Vince and Gina use the money raised from fundraisers to plan wonderful events for autistic individuals and their families. Last summer they took thirty-seven autistic adults and children and forty-three caregivers to Hershey Park for a weekend, a wonderful trip particularly as some of the adults had not been on vacation for years. This past January over one hundred individuals were treated to Medieval Times for an evening (both of my kids actually enjoyed the event, a miracle!), and it was wonderful to see how excited they were to witness jousting and eat some really good chicken (it’s all about the food for me).
I’m writing this week to tell all of you about their annual fundraiser, a walk they traditionally hold in Spring Lake. This year it is Saturday June 15th from 9:30 to 12:00 at the intersection of Warren and 5th avenues (you will see everybody gathered, you can’t miss them!). My youngest son and I have attended almost every year and continue to support this organization and all the good work they do. Vince always puts the money to good use, and I am confident he will use this year’s take to fund yet another great trip or event for autistic adults and their families in the future.
The link to their website is here: https://ssny.org/. My youngest and I will be there next week, hope to see you too!
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June 3, 2019
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 12:31 pm by autismmommytherapist
Recently I had the joy of watching my youngest son achieve his black belt in karate, a culmination of six years of hard work and about six months of intense training. The exam took place over two days, and to say finding out if he passed or not on that last day was a cliffhanger was an understatement. I truly wasn’t sure how he’d do until the last second when he was told he earned it. Zach has been fortunate to achieve several great goals lately, but I will confide in all of you that this one truly meant the most to me, and more importantly, to him.
Last week my son who is sixteen put two words together in a “sentence,” and I am equally proud of my eldest boy as well.
When I was pregnant many moons ago, I had dreams for my future kids. I thought it was reasonable they’d be decent human beings, go to college, support themselves, and have love and friends in their lives. Although I wanted them to be successful, the latter goals remained most important to me. I had learned about the perils of ambition from the parents of some of the students I taught, and I constantly reminded myself when I was growing my first child to put an emphasis on his emotional well-being as he aged.
Eventually, my traditional dreams for my eldest had to change. Justin was diagnosed with autism at the tender age of seventeen months, and I think I knew right around his fourth birthday that despite years of early intervention and a wonderful school program that he was destined to remain on the more severe end of the spectrum. To tell the truth I grieved much more then than I did when he received his diagnosis. I had so wanted him to have the opportunity for the trappings of the life his parents had had- college, driving, first love, children, and a career. I can tell you that I’ve never completely let go of that sadness, and probably never will. It is tempered however by the fact that I am certain Justin does not feel like he is missing out on these things. He is truly happy with his DVDs, his computer time, and an occasional outing.
Those dreams will always be mine, not his.
I will tell you that one thing that has helped me all these years, and I am certain it came to me with ease from having been a teacher, was to recognize that his accomplishments, no matter how small they might seem, are as important as the typical childhood accomplishments we equate with success. I made a shift in my thinking over a decade-and-a-half ago, and that shift has been instrumental in how I view my son. We have truly celebrated his achievement over these years- the success with potty training, his ability to read simple sentences, his mastery of typing simple phrases on the computer, his ability to sleep through the night. Last week, it was two words together- “more water.”
And trust me, they were beautiful to hear.
I can honestly say I was as thrilled to hear those clear syllables as I was to see Zach receive his black belt and take his oath. Justin’s accomplishments come from extremely hard work and much practice, and mean as much to him, and to me, as his brother’s. Making that shift many years ago to recognize how important Justin’s achievements were, no matter how simple they seemed, was integral to my relationship with him.
This shift allowed my pride in my boy to bloom.
There will be setbacks with both boys along the way, and to my mind, some failure is good. It’s what you do after you fail at something that is far more important than not reaching your goal. With autism many things come in cycles, and I’m sure that there will be some regression with my eldest at some point along the way.
But I’m betting there will also be goals achieved, milestones attained, struggles surmounted.
And I can’t wait to see how all of it plays out.
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May 29, 2019
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, paying it forward at 9:40 am by autismmommytherapist
Recently I celebrated the trifecta of weekends- my anniversary, Mother’s Day, and my eldest son’s sixteenth birthday, all within twenty-four hours.
I am really quite tired.
I have a teenager with severe autism, OCD, and tic disorder, and over the years I’ve never really known how things would go on any given holiday. There have been years when we’ve considered it a victory if we just made it through whatever meal we were supposed to be enjoying. There were years we wouldn’t even make it to the meal without weathering some sort of crisis.
I will admit there have been a few Christmases so soul-suckingly hard I’ve ended the day in tears, and I am no longer a big “crier” anymore.
I have to say however that this past Sunday, both Mother’s Day and my son’s birthday, were as close to perfection as one can get in an autism family. Some of it was due to my son’s behavior.
And some of it was due to the kindness of a stranger whose name I will never know.
That Sunday was a rainy mess, but I know my boy loves to get out of the house, so when I got back from church I decided to try to brave our town’s iHop and give lunch a go. We got there and were told it would be a twenty minute wait, but we were lucky to find a spot to sit, and Justin seemed to understand we had to wait for a table. After he rejected my attempts to entertain him with my phone we sat in companionable silence, his vocal stims punctuating the semi-chaos around us, with nobody seeming to mind.
One of the many reasons I love this town.
Within half an hour we were seated, and then the true test for Justin began as we waited forty minutes for our food. After twenty he kept pushing my hand to touch the one menu left on the table (Mommy is magic and will get me fed!), but I was able to keep him calm, and eventually the food came.
He ate all of his and half of mine, but the kid deserved it.
I was already feeling this day was a victory as Justin had waited in two separate places for over an hour for his food and not had a meltdown, but we weren’t done yet.
That’s when I found out some kind souls had picked up our check for us. When I wanted to thank them, our server told us they were already gone.
I’ve heard of things like this happening in our town before. My mom had this gracious effort extended to her once at Friday’s when she was with Justin, and again, she was unable to thank her patron as she had left. I will tell you it brought tears to my eyes, and I wondered what they were thinking. Did they believe I was a single mom trying to share a successful meal with my boy on Mother’s Day?
Did they have a relative with autism?
Were they just awesome people?
I know at least the latter was true.
I will tell you that this act of kindness meant a great deal to me, in large part due to the fact that someone had truly seen me and my boy. Over the years as I’ve continued to bring Justin out into the community I can tell you honestly I have had very few uncomfortable experiences with strangers. Justin has had meltdowns when we’ve been out, but more often than not if I’ve had any interaction with anyone it’s been where they’ve been offering me assistance, not commentary on my parenting.
I’ve been lucky, I know.
But the truth is I often feel invisible when we’re out together. Justin has vocal stims and physical tics, and it’s obvious within seconds of looking at my boy that he’s not from the neurotypical tribe. I would say that most of the time when I’m out with him if I make eye contact with anyone their eyes quickly slide away. On a few occasions I get a smile, but more often than not it’s like we’re just not there.
Trust me, it hasn’t devastated me, I’ve had far more important things to worry about. But just once in a while, it’s nice to have that moment of recognition with a stranger. It’s just nice to be seen.
And that Sunday, we were seen.
And it felt great.
On the slight chance that whoever did this for us is reading this blog, I thank you from the bottom of my heart. You made my Mother’s Day, and made Justin’s day even more special.
I can’t thank you enough.
And I can’t wait to pay it forward myself.
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May 23, 2019
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness at 10:47 am by autismmommytherapist
This month you turned sweet sixteen.
And truly, how sweet you are.
I admit, when I held you in my arms when you were a baby and envisioned your future, I never imagined this.
I thought at this point you’d be answering me (if you answered me at all) in grunts and monosyllables. I thought we’d begin teaching you how to drive. I believed we’d start those college discussions. Maybe you’d share with me the amazing character traits of the girl you like.
Then again, maybe not.
We are not living any of my dreams.
Instead, we are living yours.
Your dreams include a steady diet of YouTube videos of Baby Einstein and Classical Baby. Your preferred activities center around a plethora of different DVDs from your past. The closest you will come to driving is your participation on the Hertz Rent-a-car site (you have conquered Monmouth County).
Your life is pretty much as it was when you were a toddler, except for the fact that you can type in your own internet searches, a skill for which I am extremely grateful as it brings you so much joy.
My goal has always been for you to feel joy.
I won’t lie to you and tell you I gave up those dreams for you without a fight, or that the fact you’ll never realize them still makes me sad. Some people will support me on this, some will vilify me.
It’s okay, because sometimes at the end of the day my feelings about you were all I had left.
It’s okay, because after sixteen years of raising autism I am pretty inured to what people think.
My solace is you won’t miss the trappings of a neurotypical teenaged life. You won’t pine for the freedom of a car, a particular red-headed girl, or to leave your parents behind.
I’m pretty sure you’d live with me forever if you could. You are always happier at home, with me.
That is a dream I wish I could make come true for you.
I’ve accepted that my heart will always simultaneously ache and soar for you. I am so grateful, grateful beyond words, that we have weathered your latest crisis and for the better part of a year you have returned to you ebullient, loving self.
I missed you. And as difficult as it was for me, I can’t even imagine how difficult your suffering was for you.
I know there will be more challenges up ahead. So for now I am reveling in our “sweet spot,” my sweet sixteen.
I hope the coming year brings you continued joy.
I hope your seventeenth year sees you safe.
I wish you love, laughter, and peace.
I love you.
Happy birthday to my beautiful boy!
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May 12, 2019
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, Mother's Day at 2:09 pm by autismmommytherapist
Oh, my beautiful boys.
Justin, sixteen years ago this month, you made me a mom.
Four years later, Zach you sealed the deal.
There has been no role in my life, nor will there ever be, more important than being your mother.
To say it hasn’t always been smooth sailing would be an understatement. It took me a long time to understand your needs and wants- autism often obscured your desires, left me feeling confused and incompetent.
But slowly, over time, I learned how to navigate your differences.
We forged a bond, cemented in struggle, trust, and love that can never be broken.
I want the world for you both.
Justin, in your adulthood I want a safe place for you to live, a room for your 8,000 toys. I want a fulfilling day program for you, kind souls to care for you.
I want your life to be safe, and dare I say it, fun.
Zach, for you I want the trappings of a more conventional life, because that is what you have always wanted.
I want you to go to college. I want you to drive. I know you will hold a job, have a wife. I can’t wait to meet my grandkids.
Well, maybe I can wait a while for that.
I want you to know I will always be in your corner.
I will always fight for you.
There is nothing I wouldn’t do for the two of you.
I love you both so much.
Thank you for making me a mom!
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