Tag Archives: ABA therapy

#42

“Turn left there…through the stop sign.” I instruct Dan.

“Yeah, yeah, I remember.” He says in a mildly gruff tone.

“Okay, wasn’t sure…” I say looking down at my notes. “Michelle Johnson.  She’s the campus director.”

“Is that who we ask for?” Dan says as he turns the car into a parking space in front.

“Umhmm.” I am putting on fresh lipgloss and checking for food in my teeth.

We get out and walk up the many stairs and I am recalling the fun Ryan had here.

“Ry loved going here…they have two swimming pools, but he didn’t like the kiddie pool, he always wanted to go into the big kids pool.” I turn to Dan with a big smile on my face he looks back blankly.

As we get “buzzed” in we walk into the office and ask for Mrs. Johnson.  She comes out of a office with a big smile.

“Hi, Dan-do you remember me? I’m Brad Johnson’s sister—”

“—Yes! Wow, I didn’t put the name together!” he says in a loud voice, shaking her hand with vigor.

I am a little surprised but not shocked as this happens a lot since Dan has lived in this area for so long Seems like once a month someone recognizes the name and asks if I know Dan.  ‘Why yes, we sleep together’ is what I want to say. But I am usually polite and give the proper answer..he is a businessman after all.

He turns to me, “This is my wife, LeeAndra.”

“Hi, it’s nice to meet you, Mrs. Johnson.” I say smiling.

“Hi, please call me Michelle.” She says warmly.

“How is Brad? I haven’t seen him in years.” Dan asks Michelle.

“He’s doing great…still in the area and…” She begins to tell him more details but I tune them out and look about the office.  I hadn’t been in this office as much as the pre-school office, so I want to see what is going on. Michelle then offers to take us for a tour and she and Dan continue to catch up on old times.  I am scanning every inch of the school as we walk.  I see the kiddie pool and then the big pool glistening.  The playground is freshly blacktopped and there is no trash against the fence.  It’s spotless and so lovely.  We arrive at the first grade class and the door is open so we peer in trying not to disturb the class.  There are again 12 kids.  Don’t get excited, chill out.  But it’s hard not to, I fight to keep my pulse slow.

We walk around the rest of the campus and I feel like my heart is going to burst.  It feels so right and I want it so badly….

We arrive back at her office and we sit down.

“So, tell me bout your son.” She says brightly.

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#36

The classroom is huge and has at least 25 children working in different centers.  It is organized chaos.  Mrs. Thimer,the first grade teacher, is in her late fifties, reddish hair, wearing khakis and a colored golf shirt emblazoned with the school logo. She extends her hand and takes mine.

“Hello, welcome.” She nods and waits for me to speak.

“Hi,” I say loudly above the din.  “Nice to meet you.”

She smiles.  I smile.  I wonder what I’m supposed to do next.

I decide to speak. “Uh, so, this is a mixed-class?”

She looks confused.

“I saw it on the door, kindergarten and first grade.” I say trying to explain.  “My son will be repeating first grade, so he would be with the kindergartners as well?”

“Oh, yes, well, we spend part of the day together.” She says simply.

I can tell she isn’t much of a talker.  Man this is going to take forever if she’s not going to be more forthcoming. I decide to get right to the point. 

“I was recommended by Dr. Hunter.  My son is autistic and she said she has successfully placed her clients here before…with her aides.” I hope this opens the dialog.  Mrs. Thimer finally perks up.

“Oh, yes, Dr. Hunter! That student is in the third grade and doing well.” She stops and smiles again.

Holy crap, this is gonna take all day.

“So, tell me about the class and the school, and what it would I need to do if I wanted to put my son here.” I say trying to sound patient.

She nods as if she understands, but pauses and then looks away and says something to her students.  My heart is starting to pound I didn’t realize how desperate I was to get into this school.  How desperate I am to get away from them…I feel like I’m on a dating show.  Please pick me

“Well,” Mrs. Thimer looks at me closely and speaks slowly, “we don’t have any spots open for next year in first grade.”

I feel the air escape my lips in an exasperated sigh.  I fight to not say “shit” out loud.

“Oh…okay, well is there a waiting list?” My disappointment has to be all over my face.  I just assumed they would have room and welcome us like family.   It just seemed so perfect.  And I felt like it was the right place.  It seems a fast way to make a decision, but the Realtor side of me can make quick judgment calls based on appearance.  Just like showing a house, I can evaluate the merits of the property by the look on my clients face.  I give them the option of just pulling away.  They always asked if it was okay.  Of course it is, curb appeal has that much power.  And this school had all that and more for me.

“Oh sure, sure.  We can get all the papers filled out and put you on a list. No problem.  Would you like to see the rest of the class and the playground?” She asks.

I nod and follow her but only hear part of what she’s saying.  My gut is telling me it isn’t going to work.  And after I look at the class size, I’m not all that impressed.  It’s the same size as he is in now in public school and it could be too loud and confusing for him.

 

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#34

A minute later she strolls casually back into the classroom.  By my unofficial watch she has been gone twenty minutes.  Twenty minutes that my son wandered around the “hands-on” fun activities that he didn’t get to participate in because he didn’t know how.  There is no explanation by her, nor any apology.  I am barely able to say to her “we were looking for you”.  She only smiles and takes him away.  I am too mad to say anything further or to stay in the classroom.  I have to leave or I will tear this woman’s hair out.  I march straight to the principal and tell him what has happened.  He shows no shock or horror.

“I’m surprised she left him, she’s one of our best aides.” He says simply.  As if that is supposed to erase the last twenty minutes of my son being unsupervised.  I realize he is going to do nothing and I remind myself to be as un-confrontational as I can.

“What would have happened if he walked out that door?” I say as evenly as I can muster.

His eyebrows rise only slightly as I see clearly he is trying to keep a poker face.  I feel a redness spreading up my neck.  It’s anger, re,d hot anger.  I unclench my hands and realize I have left deep nail marks, dark purple and in my own hands.  I stare at them a minute trying to calm myself.

“It would have been a very bad day if he had gotten hurt.  Bad for all of us.” I look up into his eyes hoping my threat is heard loud and clear.  I wait to let the emphasis take its affect and stand to leave.  I decide I have to say one last thing to him.

“She needs to be with him, right next to him at all times.  That is what a one to one aide means.” I don’t speak again, I know from experience the one who speaks last in negotiations usually looses.

He nods, stands up, and reaches out his hand.

“Thank you.” I say and walk out.  But he didn’t speak…does that mean I lost?

Thank you? For what? Endangering my kid and not even giving a shit?   Wow. This is not the way it was supposed to go.

Then I have a thought that stops me in my tracks.

If she leaves him like this when I’m here…what does she do when I’m gone?

 

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#33

***

I hide around the corner and creep back to his classroom to peer into the window to see how he is doing.  It’s his first day of first grade.  Well technically this is his second, ‘first day’ as he is repeating first grade.  I turn my body against the wall hands in front of me, as if I’m about to be frisked.  Ever so slowly, I slide in front of the window.  Leigh looks up and smiles.   I only allow myself a small peek and slide back…It’s like I’m on a stake out.  I let out a huge, happy sigh of relief.  I am almost being bathed in it.

Ryan is sitting calmly and getting out his books.  Leigh, our new therapist, is sitting next to him.  He looks calm and is taking out a book.   Today is her first day of school with him.  She’s seen him over the summer and is doing fine.  He likes her and she likes him-no small feat since he has seen so many people come and go at public school.  It’s almost made him more gun-shy to new faces.

I stand there for a few minutes waiting…waiting for an outburst or something.  But after a few minutes I chuckle and know it is fruitless.  She has this covered.  She is a professional—as are all Dr. Hunter’s aides.  They have never had problems with him and if they did, they know exactly how to handle it.

Standing there with the image of him being calm, I wonder why I was worried…well, duh, it’s because of how he acted at public school.  The memories come back in big waves and my stomach flutters recalling it.  Remembering in a word: frustration…

*

It seemed the whole experience was a battle.  Kindergarten got better after a few months and he learned the routine.   But his aide was very “hands off”.  To the point she would leave him alone for long periods of time.  One in particular being the thanksgiving feast; THE most fun of all days in kindergarten.  They had spent weeks preparing, making t-shirts and hats and drums.  Because I had taken part in it with Jenna, I knew how great it was.  So, I was there to volunteer again. I was engrossed in my job helping make tortillas; and I spot Ryan wandering around.  A few minutes later I still see him aimlessly wandering–alone.  He disappears inside and I assume his aide is with him.  But he wanders past me again and I watch him go back into the classroom.  What is she doing?  As his mother, I have to check.  I remember the horror I felt walking into the completely empty classroom and seeing the opposite door was wide open—the door that led to the parking lot.  My mind goes to high gear as I begin to think: he’s gone outside…how far would he go…would he cross the street?  I lunge forward to run out the door and my eye catches movement in the far corner.

“Stop!” I yell as he is just about to grab a hot dog off the rolling hot burner.  His aide is nowhere to be found.

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#30

As the big holiday is here, I send out my wishes of cheer and love, mostly love to you all.  Thank you from the bottom of my heart for reading this.

*

Fed up.  Done. No more.  These are the thoughts I hear in my head constantly.  I feel I am literally at the end of my rope.  There is nothing left of my patience.  Two years.  Two years we have tried to make it work  and I just can’t any more.   I can no longer tolerate their inability to help him.

I am waiting outside Dr. Hunter’s office.  We have a meeting today to discuss my options for Ryan’s schooling.  I trust her opinion today as much if not more than I did four years ago.

Ryan’s academic “career” at the public school has completely derailed. ‘Off the tracks’ is an understatement.  I can barely manage to watch him when I volunteer in his classroom.  The only way I can describe it–a caged animal.  Acting out worse than he ever did when he was first diagnosed.  Hitting, kicking, scratching and spitting.  Spitting is the worst in my book.  Not that any of the others are great, but when someone spits in your face it’s very demeaning.  When he used to do it to me, it took all I had to stay calm and not spit back.  I can’t bear to watch him to this to this poor district aide.  She flinches and jumps every time.  Playing right into his hand.  He wants these reactions from her—and he gets it.

Most days I enter the class and don’t even recognize him—his actions are so unlike the little happy boy I have at home; and there are days I don’t think he knows I am there.  I leave each time either crying or fuming…most of the time I have to leave early because I can be a distraction when he does realize I am there.

What am I doing to him? What are they doing to him?  Why can’t they see this isn’t him? Why won’t they let me bring in Dr. Hunter’s people? Why, Why, Why??? I feel as if I am full pot of water that is bubbling and boiling about to pour over on to the flames.  I am lost in these thoughts when she opens her door and smiles brightly at me.

“Hi. Nice to see you.” I know she means it when I look in her eyes.

“Hi.” I say quickly.  As much as I enjoy small talk, we have to get down to brass tacks as her hourly rate far exceeds mine.

The week before Dr. Hunter had observed Ryan at school at my request.  After the last terrible day I swore I would witness at school, I called her and asked for help.  She said she needed to see him in the environment and I naturally agreed.  She called me later that day and calmly told me that Ryan had run off campus.   What?! Ran. Off. Campus? The words take a minute to register in my head.  And I sit dumbfounded holding the phone in my hand.

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#29

Today I celebrate another year on this earth and I am greedily going to ask for a present from each of you.  If you could send this blog to one person and encourage them to subscribe I would be most grateful.  I would love to add ten new subscribers today.  I think we can do it.  Thanks in advance.

 

*

We enter his class and it is in a word:chaos.  The tiny classroom is literally crammed with people.  All the parents jockeying for the best place to take pictures of the kids on their “spot” on the rug.  Everyone seems to be talking at once and it is extremely warm. The volume is loud-even for me.  Ryan seems o.k. with it, only a little startled.  His aide, Kathy, spots us and tries to say hello over the din.  He pays no attention to her as I take him to his cubby and help him put away his back pack.  He looks only mildly anxious.  Until the singing starts.  When the music is queued, it is at such an unusually loud level, everyone jumps a little.  Ryan, decides to scream.  Like he’s never screamed before.  But, because the music is near deafening and many other children are crying, he doesn’t stand out that much.  Except when he pushes over a few kids, and stiff arms a few parents out of the way to escape the classroom.

I stand in complete shock, mouth open, frozen, unable to process the situation. His aide too, is stuck in what looks like horror.  It takes me a two-Mississippi-count to realize he is gone.  When my wits come back to me, I run out the door after him.  This is not what I expected at all and am totally unprepared for him to react this way.  I mean I wrote a story. I grab him as he is running down the hall and pull him into a hearty embrace.  This is absolutely the opposite of what he wants, but I have no clue what to do.  I hold him with all I have.  He is crying and wiggling trying to get away from that craziness.   I can’t believe I didn’t prepare for this.  All these years of behavioral training should have assisted me in this crisis.  Yet, I am completely at a loss.  As is his aide.  Because it takes her a minute to find us and we both chuckle uncomfortably.

“Wow that was unexpected.” She says trying to find humor.  Normally I am the first to throw out sarcasm, but the fight Ryan is putting up has me preoccupied.

We wait until mercifully the music stops and parents start to file out.   Ryan finally stops trying to escape my grip, but everything about him says he wants no part of this and we try to go in.  We have to literally pull him inside while he is screaming.  One girl is sobbing uncontrollably on the rug as her mother is trying to disentangle herself.  Looking at her, I don’t feel as bad, but still so unsure about it all.  Luckily his aide has the presence of mind to kneel down and talk to him as I am still somewhat shell shocked.  She somehow gets him to let go of me and bribes him to sit down.  The teacher literally shoos me out of the class and shuts the door.  In my face.

And then I am standing in the hallway. Alone.  Even the mother of the sobbing child is gone.  I am left there wondering if he is o.k., should I leave?  I wish Dan were here.  Why didn’t we have a better plan, a contingency plan?   Why didn’t I go over this in more detail with Dr. Hunter? Because she can’t.  This is no longer her realm.  We are in this with the school from now on…

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#28

*

Kindergarten: the most magical year of school for a child. Its school, but it is fun. Really fun. I, naturally, do not remember much about kindergarten. But I remember Jenna’s. And it is the most precious year. The beginning that almost whispers a promise of what school could be—if you stayed in fairyland forever. But the best part about it to me now is, we are taking my sweet boy there! To kindergarten!! I hadn’t let myself believe it would happen “on time” for him. I always figured he would start late due to his delays. Yet here we are with all the other five-year olds. I am more excited for him than I have ever been for school. This is a huge testament to the last three years of work. Not just work for his therapists, or for us following each protocol as instructed, but for him.
So many people say to me “wow, you are doing so much for him.” It’s a truth I am aware of, but you can lead a horse to water and he still may not drink. We put all the tools in front of him but he didn’t have to do it. And there were times we thought he wouldn’t. We were told by Dr. Hunter, one of his “good indicators” is his desire for approval. He likes it when he gets rewarded. Many autistic children don’t care, and seem to be fine existing in their mind only. But, as his mother, I know he wanted to come back to us. He didn’t want to go to the dark place away from the world. He wanted to be here—with us. For moments like this—at least I try to convince myself of that.
We have prepped for weeks with pictures of his “new” school. His new teacher. New classroom. I created a ‘social story’, to explain to him what would happen. Social stories are used with autistic kids to reinforce a new situation. It’s a simplistic book that has pictures and outlines each step of a new place or activity. The first page says “My new school” with a picture of the school from the front. The next page says: “My new teacher” with her picture. The next page: “my new classroom”, “my friend, Kathy, will help me in class,” etc.  We read it a few times a day to him so when the day comes it won’t be so foreign. He seems to be rolling with it and I am on cloud nine.
The first day finally comes. So much excitement–mostly by me. We are up, dressed and take our “first day of school” pictures on the front step of both kids. Each equipped with shiny new back packs and outfits. We shaved Ryan’s hair into a “faux-hawk” just to give him enough of a rebel image. In case the kids picked on him. He looks adorable and completely normal.

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#26

A hearty thanks to all who continue to read and share.  We are at over 2000 views since I started the blog in October! I think that is awesome.  Keep it going!

*

“One more and you can be all done.”  I hear Adam’s voice booming and echoing off the walls from upstairs.  When he first started with us I used to think, “why do you have to talk so loudhes not deaf!” But I learned that it was just his way of getting Ryan’s attention, which for a long time meant speaking over his cries.  Adam has been our team leader since the beginning.  I remember the awkward first meeting and how I picked each of them apart.  Hindsight really is 20/20.  If I could have only known the changes this young man could bring out in my son…

“He’s all set.” Adam says as he puts down Ryan’s treat box.  “He did great today! Isn’t that right buddy?” He says as he grabs Ryan and tosses him around.  Ryan’s smile is so big and his giggle so deep it makes my heart literally warm-I feel like ET and it could actually be glowing through my shirt.

Jenna comes down the stairs next with a clipboard in her hand.  She shares my love of office products, and I must have taught her what my mom taught me “carry a clipboard and people think you are in charge—even if you’re not”.  I use a clip board almost daily.  Adam has included Jenna on another session.  Dr. Hunters new office manager (whom doesn’t seem to annoy me as much as the first, but I am a big enough person to realize it wasn’t entirely her fault, I was just vulnerable at the time) made Jenna her own star chart to earn candy and games for helping during the sessions.  We were starting to notice some jealousy as to why all these fun young people who brought cool toys were only coming for Ryan.

“Mommy, he missed six on his matching. Not very good.”  She says with a frown on her face. She takes this job very seriously.  Adam looks away and tries to stifle a smile. I do my best to keep a serious face too.

“Well sweetie, he’s trying.  Thank you for helping.  How many stickers did you earn?” I ask.

“All of them!” She says with light in her eyes.

“Okay! What prize did you choose?” I say feeling a little like the hygienist at our dentist. They are all about the prizes.  They are throwing things at Jenna at every turn.  They practically hand her a prize for coming in the door.  By the time we leave, we have so much ‘Oriental Trading’ crap I could make my own catalog.

“M & M’s.  That’s what Ryan got so I took the same.”

My heart ignites again and I feel that surge of blessings for my little cherub.  Early on I realized how much Jenna has helped Ryan.  We took for granted his “good indicators” Dr. Hunter spoke about.  But as my knowledge of autism has grown I know that having a sibling is one of the best natural teachers a kid with autism can have.  And Jenna is far superior to other siblings I have met.  For one, she is stubborn and doesn’t give up on him.  She will get him to play if it’s the last thing she does.  Thankfully she doesn’t yet realize that he is “different” at least in a negative way.

“Would you like something else? You earned it, you were a great helper again.” Adam says with a smile.  He jabs sweetly at her tummy.  She pulls away giggling.

“No thanks.” She sets her clipboard down and walks away from us.  We both stare for a second“No thanks.” She sets her clipboard down and walks away from us.  We both stare for a second.

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#22

Today’s post reveals where the title  comes from (in case you missed it somewhere, the title is “Make A Wish For Me”) Feedback on that would be helpful, as a title is really important.

*

We celebrate Ryan’s third birthday in relative quiet.  He loves chocolate chip cookies, so I bought a cookie cake from the store and Jenna, Dan, and I sing to him.  He delights in the candles and smiles so brightly.  His smile has such a way of igniting my soul.  It thrills me every time he smiles because I am painfully aware of how blessed I am that he can show emotions.   I’ve read about many autistic children who have no emotional response to most everything.

True to Dr. Hunter’s words, he is not the same kid.  Well, not the same tantruming, screaming unhappy kid, he’s actually happy now.  What more could I ask for…

We saw immediate changes in him when we started the therapy.  It’s hard for me to believe it’s been a whole year–already.  How I dreaded that initial time getting used to the sessions and learning all that was required of us just to teach him how to fit into ‘our world’;  and keep him from going too deeply into his.  Program after program, behavior after behavior, we climbed with him in his successes and progress.

Tomorrow we are going to look at the preschool program the school district has in place at an elementary school nearby.  When you have a child with any “delay” you are allotted services by the county, like speech and occupational therapy, depending on where the delay lies.  Upon the child’s third birthday they become “property” of the school district. Therefore, if you want to continue services, it is customary to place them into one of the district schools.  We want him back in school with other children, but he has not been in a school setting since we took him out last year when we started the in-home therapy.  His last experience with school was not necessarily bad for him, but not so great for the other kids.

Brie attended school with him for a few weeks and reported things to us that the school had never mentioned about his behavior.  He was very withdrawn from the class and played alone a lot.  He had become the ‘mafia boss’ in many ways.  The kids were mostly scared of him and stayed out of his way.  If one of them got too close, he would clock them with whatever toy he had in hand.   And if he wanted a toy they were playing with, he simply took it away.  Even children at that young age were perceptive enough to know not to mess with him.  They were all communicating in their early language, but Ryan’s body language was crystal clear.  “Don’t mess with me”.

Putting him back in school brought excitement and trepidation for me.  We weren’t going to have his therapists with him to help him and we would have to go back to relying on a school for information about his day.  We have become spoiled with the therapy going on right at home and we hear the progress as they work or are given a detailed account of his session.  We also have monthly team meetings where we talk about his progress, set new goals, and are an integral part of all that is going on with him: emotionally and developmentally.  It is very hard to think of letting go of that control and leaving him in a new environment without us or his therapists as a safety net.

He blows out his candles and I snap a quick picture of his sideways smile.  I turn away and wipe a tear as I make the wish for him.  I know he doesn’t understand the tradition of making a wish before you blow out the candles, but I do.  So I make the wish for him.  And it’s no longer for him to be” normal”.  It’s for him to continue to be happy.

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#21

This post is a little longer than most, but it is hard to cut the words out and tell the story.  This was such an amazing day–yet I don’t feel like I conveyed how emotional it truly was. When I read i,t I cry, but I was there…any thoughts on how to word it better?

*

Every mother waits for her baby to say ‘Mama’.   I had those first words of joy with my first-born, noted it in her baby book and moved on. With Ryan it was different, yet again.  I started worrying when he was a baby that I wouldn’t enjoy his milestones like I did hers.  I worried they would be overlooked in my hectic, two-child, working life.  I worried about seemingly silly things like not taking enough pictures of him.

As a young adult I wanted to see baby pictures of myself.  My mom got down the dusty albums and we started thumbing through them.  The first album was all professional 8×10 ‘Olan Mills’ type of pictures with my older sister at each month or holiday in her life.  Page after page of her in glossy form, from infant to toddler.  We open the second album; I start to thumb through my life expecting the same milestones as my sisters.  I turn two pages and then it stops.  There are exactly five pictures of me.  That’s it.  Five. Then three with me and my sister over various years.  The rest of the album is empty.  I look at my mother in a panic and ask where are the rest? And why were there so many of Tonya? Afraid perhaps they fell out or were misplaced.  She looks at me casually and says in a matter of fact way,

“Tonya was the first born. I had more time and money to get her pictures taken. By the time you came along, your dad and I were ready to split up, I worked three jobs and getting your picture taken just wasn’t a priority.”

It sounded logical, but the reality still hurt my feelings.  Not a priority. I made a vow that Ryan’s life moments would not be placed second just because of his birth timeline.  However, it slowly started to happen.  I took him less and less to get photographed, and eventually the pictures started to include both of them. Baby books? Well those got sidelined too.  Then he was diagnosed and simultaneously those kinds of things weren’t important. Not a priority. Irony you are a bitch, but chronicling his life changed to bringing him back.

I hear Brie bringing Ryan downstairs as his session is drawing to a close.  It has been over five months of therapy.  I did not hear what they were working on upstairs because I had turned down the baby monitor.  (We gave up on the cheap-green-screen-video monitor and went with an old fashioned audio monitor to listen to the sessions.) I usually have it on while I am in the kitchen working, but I had some phone calls to make.  So, I’m curious why she’s bringing him down.   Brie is coaxing him into the kitchen where I am standing.  She has a huge smile on her face and leans down close to him points at me and says,

“Ryan, who’s that?”

He looks shyly at me while holding her hand and a small voice I have never heard says “Mom-mom”.

I feel the room tilt a little as my heart stops beating for a second.  And I suck in a huge breath.

“Oh my god!” I yell and lunge forward for him, scaring him a little, but it’s like an electrical current has taken off in my body.  I grab him and swing him around starting to cry shamelessly while he giggles.  He said Mom-mom.  He said mom-mom!  I honestly feel I can fly at that moment.  Hearing him say my name truly sounds and feels like music playing straight to my heart.

As Christmas is a few weeks away, Jenna had recently made her wish list to Santa.  I secretly asked him to let Ryan say ‘Mama’.  That was all I wanted for Christmas.   I realize that God has not only given me my Christmas wish, in some small way he has also given me a way to appreciate Ryan’s milestones.  To revel in them in a way I would not have had he been “typical”.    I of course would have preferred to not have to go through all this…but I am thankful for the gifts.  I still haven’t worked on his baby books, but there are other priorities now.

I turn to Brie, who normally so poised looks a little teary eyed as well, and say softly.

“Thank you.”

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