Quick Takes Friday: The First Day

1.

The first day of school began like this:

 

 

 

Joseph- 5th grade and not amused by the photos. He ditched us shortly after

Camille- third. She has the same teacher Joe had in second grade and is super excited.

George- kindergarten

Cole- last year of preschool!

 

2.

George tried to ditch me right away. I told him mommies stay for a few minutes the first day. He ended up kicking me out after ten minutes, which was fine because I had a preschool meeting to attend.

 



 

3.

When I picked him up, we went to CFA for lunch and then ran an errand. He told me all about "Pete the Cat." Since he can't say "Pete" I had no clue what he was talking about aside from a stuffed cat who had shoes and they colored their own shoes. His teacher sent me a photo of them with Pete and then his SLP said, "Oh, those are cool books!" Whew! But, apparently, he loved the story since he could tell me all the details!

 

4.

His teacher told me that when they introduced themselves he said, "Well, you may not be able to understand me but my name is George." It comes out "Forfe." He didn't seem too bothered by the fact that some people may not understand him, which is good.

 

5.

I met Cole's new SLP at school but have not hunted down the K-5 SLP. I've met her but I need to make sure all the paperwork is in so she can talk to our private SLP. I may also need to ask her IEP questions but I probably shouldn't harass her too much the first few days! ;) Then again, we're going to be working together for the next five years, or more, so she might as well get used to me!

 

6.

There's a new school nurse. The school year is just beginning so we haven't chatted much. Our paperwork should all be finished so I hope I don't have to talk to her about vaccines. Cole had an allergic reaction to vaccines so he's behind. I doubt I will get him the flu shot either, since that's one he had a reaction to. I don't mind explaining to people WHY he is behind but it gets old having to "justify" why we don't want to give something to our kid that he is allergic to!

 

7.

After a good first day at school, there were epic meltdowns last night. No, I wasn't one of them. The middle two were overwhelmed and over-tired, which led to tears and a refusal to go to bed. We finally got them down and life seems much better today... they were ready to leave for school 45 minutes early!

 

 

VBS, Round Two

Last year was George's first year at Vacation Bible School. It went about as well as a it could go, considering the child in question hates crowds, strangers, loud noises and had just gotten over the chicken pox. That is to say, it went not at all well.

George has grown alot in the past year. We've seen great changes in the past month alone. He doesn't have the chicken pox and is doing better when it comes to self regulation. People can understand him better now too.

I worked with a friend and the director of religious education to set up VBS so George could be successful. We have a "safe person" who is with him, the daughter of a friend who knows George well. If George needs to leave, she can take him out; otherwise she helps with everyone. Another friend is his teacher and he knows a few of the kids in his group.

It's only the second day but yesterday went well. I'm enjoying the hours I do have alone, knowing that I might not have them tomorrow. I'm watching the movies no one else likes, getting chores done and sitting in peace and quiet. The weather has been rainy, so I know the kids will be trapped inside and possibly stir-crazy in the afternoon.

Possibly? Heck, yeah, they will. Sigh. I thought VBS was supposed to make them tired?

Anyway, here's hoping the rest of the week goes well, for his sake and mine!

This Boy is on Fire

Take a moment to find your favorite version of "This Girl is on Fire." Go on.

Waiting.

Waiting.

Now play it while you are reading this blog post. Okay? Good.

We have a boy on fire in this house. On FIRE, baby. If I had mad photoshop skillz, I would take a picture of George, and put some flames behind it. Because he is ON FIRE.

Awhile ago I had some gross motor skill concerns. Basically, he runs funny. I talked to our SLP and she said it's not uncommon for kids with Apraxia to have fine and gross motor skill issues. Great. She also said that t-ball and music class would help with both. Friends mentioned that swimming might help too. AWESOME! Both boys are in t-ball, taking a music class this June and we spend lots of time swimming.

Saturday both boys had their first game. I don't care what award winning movie you saw Saturday; 4 and 5 year olds playing t-ball is way more entertaining! Cole went to bat first and was so enthusiastic. He hit the ball off the t and then wanted to run all the bases.

Honestly, my expectations for George were low- have fun, run in the right direction, listen and follow directions. But my kid! He hit the ball on the second pitch! We started screaming and cheering and he stood there like, "Um, I hit the ball. Whoa." He finally ran and we turned purple cheering for him. It was, according to all the coaches, the best hit of the entire game!

A few days later, what does my kid do? Swim a few feet without a noodle or life jacket! This is the boy who wouldn't go near the water until last summer and then it was only with 2 noodles, goggles and a life jacket. Even this summer, he wants his life jacket to paddle around with the older kids. (We have a very small pool.) For him to swim a few feet without any of those is HUGE. It shows how well he is learning, growing and mastering his anxiety. Way to go, kiddo!

We'd better watch out this summer- this kid on on FIRE with his growth and maturity and he's going to blow us all away!

Apraxia Awareness Day, May 14th

Every IEP is a little Lent

I'm sitting here, at the kitchen table, listening to Cole tell me how he hates pumpkin bread. He's speaking

Every IEP is a little Lent . . . and every
mild stone met a little Easter.

with a whine in his voice, indicating that he's tired. I know that once I pop him in the car this afternoon, he will fall right asleep... which is a problem, since it is his first day of speech therapy with our private SLP.

Today is also the day I got the rough draft for Cole's IEP. For me, it's more of a formality. I speak to the teachers and SLP on a regular basis, so none of the goals are particularly surprising. It's just so hard to see, in black and white, in clinical terms, how far behind my sweet bear is. In black and white, it tells me that my almost four year old speaks like a two year old. In black and white, it tells me that he is 80 per cent intelligible . . . if you know him and know the context. Most people cannot understand him at all.

In black and white, it says over and over and over again, "Motor planning is impacting him from . . ." and "Due to poor motor planning, he cannot . . ." He cannot speak. He cannot draw. He cannot color.

I know this. I knew this. But seeing it again was like a punch in my already-bruised stomach.

And then, it dawned on me. This is Lent. This IEP, this is our Lent.

We're at the beginning of Lent now. Cole's been examine and tested, just like we examine and test ourselves at the beginning of every Lent. Where is he strong? Let's keep on doing those awesome, strong things. Where is he weak? Where does he need to improve? Let's make measurable goals and work on those weak areas.

When Lent begins, we work on those areas in which we are weak. We give up our vices, add in more prayer. We sacrifice and offer up. At the end of all of this, at Easter, we hope to come out stronger, with good habits that have replaced the old. Less coffee, less sugar, less junk food; more prayer, more giving, more offering up.

During this IEP, we've set goals. We know the end result we want: a child who can draw and write and speak. During this Lent, we will work on those goals, praying and sacrificing (retirement fund? Who needs that?!) to get to them. When Cole can speak, write and draw, when he is able to funcation with his same age peers, we will have arrived at Easter.

But you know the awesome thing? Remember how every Sunday is a little Easter, a little time to remember and rejoice in the salvation of Christ? Every mild stone he reaches, every step forward he makes, is our little Sunday. It's our little Easter, a time to rejoice that all his hard work is paying off. When I hear him count, see him try to color or say a hard word correctly, we rejoice. We celebrate.

Because even in Lent, we have a little Easter.

Quick Takes Friday: River Song, Baby Wearing and the Rainforest

1. I'm over at Natural Parents Network today, talking about saying good-bye to my baby wearing years. My Ergo has sat neglected in my closet for too long and it is time for my cousin and her daughter to enjoy it. Read about my emotions in Saying Good-Bye to Baby Wearing. 

2.I realized yesterday that Ash Wednesday is coming up, um, soon. I have lots of thoughts on that, which you can read about tomorrow. I'd tell you more but in the wise words of River Song:

3.  Did I just win Quick Takes Friday with that meme? Because I think I did!

4. Cole starts speech next week with out private SLP. We get a ten percent discount because we have two kids going there. Wheeee! As a result of this increased bill, I am sitting here, surrounded by grant application paperwork. A small rainforest has died to find my boys a voice.

5.  But maybe if they find their voice, they can use it to SAVE the rainforest! Will that make it okay, then?

6. This weekend has been dubbed "birthday party weekend" at our house. Cole was invited to his first friend birthday! Camille has a party to go to also. They are so excited! Joe isn't left out, though, as he is going to one in two weeks and George had a party to go to last week. We don't mind, as we are so happy our children have friends who want them to come to celebrate their special days.

7. The little boys have been walking around the house with swords down the backs of their shirts. They tell me they are Power Rangers and refuse to go anywhere without their toy swords. I'm not sure what bad guys were going to show up at their sister's school performance but, if there were, they were prepared!.

Apraxia vs the rest of the world

My sister and her sons came to visit this weekend. My nephews are 4 and 2 and perfectly normal little boys- if more adorable, smarter and generally awesome-er than the rest of the kids their age. (I hear they take after their aunt, cough, cough. :)) When they come, they say hello to me and then we see all the kids when they want to be fed. In short, they disappear to play and we get to chat!

At dinner time, I would ask all the kids what they want to eat. My littles respond in one word phrases because a) I'm lazy and have been slacking on making them say things like "more milk please" and b) at the end of the day talking and eating can be too much. They reserve those cheek muscles for chewing. Anyway, my boys will say "milk!" and get milk, so my nephews said the same thing. I went to get them all milk and my sister said, "Wait! Boys, how do you ask nicely?" and both boys responded, "I would like some milk, please."

In my mind I was thinking, "Holy smokes, are these kids some kind of verbal geniuses?" (I think the correct answer is, "yes" but anyway.) In the next minute, I remember that her boys do not have Apraxia and thus can speak in complete and coherent sentences that people can understand over 90 per cent of the time. I looked at my sister and said, "Sorry. I'm so used to kids who can't speak that I forget what to expect from kids who CAN." She laughed.

When Joseph and Camille were little, I didn't video record much. We have a video recorder (you know, before smart phones did everything) but I didn't use it much. What I do have I don't know how to get on my computer... well, I lack the time to find all the cords, plug it in and do it. I have my phone now with video of George talking but I'm not really one who records everything. I write down what they said but I don't really remember much of it. I mean, I remember but... I've been in Apraxia Land for so long, this is my normal. Most of the parents I hang out with have kids with special needs, so their children talk like my boys.

It actually didn't make me sad to hear my nephews talk without problems. In fact, I think it was good for George and Cole to hang out with them. They need more NT role models and more people who accept them just as they are, without reservations.

Speaking of the "Rest of the world" food issues are going to heck in a handbasket around here. When George gets overwhelmed or over tired, we see it. One night we were having dinner. It was pork, which he generally likes but meat is hard for him to chew. There was a sauce on it and sauce is the debil- or it is, on days when he is overtired, over-talked and Not in the Mood. I served him a very small portion of the pork, which he ate. Yay! Then he said he didn't like it and wanted PB bread. Our rule for him is that he has to try it and then may have a simple, alternate dinner after a grown up has eaten. In short, try it and if you don't like it Mommy will make you PB bread but only after Mommy has had a chance to sit down and eat something.

This went over like a dead duck. He was not amused that he had to wait and voiced that he did not like dinner and loudly. Table manners aside this can be normal for him. At least he tried it, which is huge but he needs to work on eating a normal amount of normal food. And when days are really bad, the non-preferred food can't even be on the same plate as his other food. UGH.

The good news is that his SLP's office is moving! They will have a new office in a new location and be able to offer their feeding therapies groups! We briefly talked about how feeding therapy would work and it looks like it won't cost us any more than we are paying now! One day would be straight speech and the next would be speech/feeding. Woohoo! They don't move until the spring, so we have some time to work out details but.... HOPE that feeding hell will end this year!

Hope, Continued: And the Universe Said...

Many of my friends pick a word as their "theme" for their new year. They want to be "mindful" or "prayful" or "in the moment" (okay, that's a phrase). As 2013 came to a close, all I could think was "Thank God it's over." I did come up with two things I wanted to focus on in 2014: PEACE and HEALING. This week, I added another: HOPE.

See, for awhile now I've felt like the universe has been giving me a kick in the pants. We've had events in our personal lives that made me doubt anything good would happen. At church, I had several run ins with a woman I have dubbed The Crazy Church Lady that left me with anxiety every time I walked into the church. Would she be there? Would she be judging? Would the other people in the pews?

Then... a couple things happened. Father Youngin' told us he was in speech therapy as a kid. He said he understood why we can't use the parish school. (I cried! Someone who understands and doesn't judge!) The NICU Thanksgiving was written up in the local Catholic paper. As a result, the priests know us by name (not sure this is a good thing!). They've spoken to us about the work we do. And... we were written up the parish bulletin. We had NO IDEA the latter was coming. None. But... as a result... people now know why our family is like it is.We aren't the parents of undisciplined kids. Our son was a preemie. He has special needs. And we keep coming to Mass.

We've met several people who can't take their kids with special needs to Mass because they fear the judging. While I would like to say, "No one is judging you!" people do. They can. And I want Mass to be a judgement free zone.

Adam and I hate attention on ourselves for the work we do. Yet if it brings understanding to the issues at hand (premature babies, special needs) and helps people understand our family? Worth it.

Hope.

I have an idea running through my head, an idea that may, I hope, bring hope to others. Catholic parents of kids with special needs need support and love. We need ideas and tips and tricks to help our children understand our faith and make their sacraments. We need to know we are not alone. We need each other. We need hope.

I hope and I pray that PEACE and HOPE and HEALING will be the themes for this year. So far, it's like the universe said, "You've taken a beating over the past year. Here, here's a cookie. Let's make this better."

I hope.

Hope, Part Three: a friend and an allergist

I've lost alot of hope this year. It seems that every time I get my hopes but about something, anything, they are dashed.  Not just dashed... trampled, killed, stabbed. Every time I thought something good would happen, the worst would happen... or, if not the worst, one more damn thing to deal with.

As Adam said, I've not exactly been a little ray of sunshine this past year.

Today we took George to the allergist. I went in with zero expectations. I knew George would not be amused to see another doctor, especially if there was skin prick testing involved. I didn't know if the allergist would know about Apraxia or take my concerns seriously. This allergist is has been my husband's doctor since he was a child, but he doesn't know me. I don't know him. And, frankly, he's not delt with me before and I'm nice, but don't screw around with me.

Adam swore up and down that George's medical anxiety is only because I go with him. Hurmp. He got George all excited to see "Daddy's doctor" and promised a treat after it. As we pulled up the office building, Adam said, "Yay, let's see Daddy's doctor! George, unbuckle your seatbelt so we can go." George did so... and ran to the back of the car. Adam pulled him out and carried him inside, crying, as I took the other three to Camp Grandma for the morning.

When I returned, I tried not to hyperventilate as I walked by the "sick child" walk-in clinic. I resisted the urge to use ALL THE HAND SANITIZER and breathe through my mouth to avoid the smell of the medical plaza. Adam and George had already been taken back and the nurse at the front desk chirped, "I bet George will be glad to see his mommy! He's upset."

I laughed. "Nope. He has medical anxiety. It's always like this." Indeed, George was hiding under the chairs in the exam room, crying and cuddling his penguin. I shot Adam an "I told you so" look as I helped him fill out medical forms. I think I promised the kid a pony AND a trip to Build A Bear if he would come out. No dice. In the end, we left him alone. (And Adam admitted the kid has some anxiety. George's HR and BP were slightly elevated.)

The doctor took everything into consideration and said that he thinks it is more of an intolerance than an allergy. We can start reintroducing foods one at a time over a two week period. He said to use common sense; don't over load the kid but don't give him minute amounts either. He said G could have PB toast at Grandma's house and he was thrilled! Adam was thrilled to have normal bread and rolls again.

After a quick trip to the toy store for a treat, we picked up the kids at Camp Grandma, had PB toast and went home. Adam has promised all of us Chinese food tonight!

***

George has a buddy in his preschool class. She's a sweetie pie and her mom and I were in the same student teaching class in school. It's crazy how small the world is sometimes!

They came over the other night and we chatted about the trials and tribulations of dealing with our kids' needs at VBS or CCD. (Check the June archives for the whole mess that was VBS.) I joked about how the RE "threatens" to make me George's CCD teacher and how I am NOT an early childhood person. My friend, however, IS and we joke that we should take turns teaching our kids' CCD classes.

And for a minute there, I had hope.

Hope that if we work together, we can meet our kids needs.

Hope that George can return to VBS and will have a friend in class. Maybe he could do it.

Hope that I am not fighting the invisible special needs battle at our parish ALONE. Hope that I can have someone to work the ins and outs of sacrament prep, CCD, VBS and acceptance with me. That it is not me and my family against the Crazy Church Lady and the rest of the people who want kids with special needs set aside.

Hope that... we can make this work.

For a minute there, I had hope.

I still do. Slowly, maybe, this thing with feathers is coming back.

Getting ready for Kindy: IEP meeting

I have no idea why I get myself worked up over IEP meetings. I know the staff and they know me. They have shown nothing but kindness and caring and have George's best interests at heart. We are on the same page in terms of knowing his abilities, goals and diagnosis. I know the lingo, and what helped write IEPs myself. Still, my anxiety goes into over drive and I get all nervous, especially when I think about the transition to kindergarten and throwing MY BABY to the wolves.

See what I mean about anxiety? I know, personally and professional, all the kindy teachers at school and I LOVE them. ADORE. Either one would be wonderful with George. Still, when I think about him in the classroom without paras in and out to help him, with people who haven't known him for three year, without his speech therapist and a group of children who are tolerant and accepting of his speech... AH! ZOLOFT!

I'm breathing....

Anyway, as par for the course, I had nothing to worry about. We are on the same page. In our district, half day kindergarten is free while you have to pay 350/month for full day. We discussed if George would be better served in half or full day. I made it clear that we will do what is in his best interest but we cannot afford the 350/month. Without help (and it looks like there won't be) he will be in half day school. We talked about his services and we can hopefully get all those done after his kindergarten in the morning. Cole will be in ther afternoon preschool class then and I hope I can get it done when Cole is in school. I don't want G pulled out of class for services, missing academic time.

The special ed teacher was there and we talked at length about what G can do and what the preschool team expects academic wise. G knows some letters, can count and is writing really well. We need to keep him on the track of good academic skills.

While there's lots of worries and stresses going on right now, I am so, so thankful that I do not have to battle the school district over services he needs or will get. I don't anticipate everything always being easy with the school but right now, we are all on the same page and he is getting exactly what he needs and I am thankful for that.

Husband of the Year

(Yes, the Holiday Gift Guide is still active! Go here to win!)

Around Halloween, I was having a really, really bad week. Parent-teacher conferences went great and the teachers had nothing but glowing reports on all the children. Cole is making wonderful, rapid progress and has SURPASSED all his IEP goals! We will have to re-write his IEP a full FOUR months before it is due!

Why is this bad? Based on reports from a private evaluation and more observations, we can confidently say he has mild CAS. He is also sensory-seeking, not sensory avoiding like George. I knew this and knew it was coming but it was still a punch in the gut to hear.

Then... I was nervous about George's upcoming IEP and the transition to kindergarden information it would contain. Spoiler: it went great!

Then.... the SAME week that all this was going on, another uncle of mine had surgery for cancer.

THEN... a baby in our extended family had a giant mass removed from her chest. (The mass turned out ot be benign and she recovered faster than anyone expected!)

Really, God? REALLY?! Why don't I just lay here and You keep punching me, okay?

Needless to say, I was a little stressed and alot upset. THEN... at the end of the week, Adam and I were brushing our teeth and he said, "Honey, you know that business trip I was supposed to take the weekend of the fifteenth? It was all a lie."

My heart sank and, for a split second, I thought, "He's having an affair."

(Please note that this thinking is completely insane on my part. Completely. Like I said, bad week and my anxiety was already through the roof!)

Adam confessed to me that he had been planning a long weekend away since August. He knew I had been having a bad year and that November is always an emotionally hard month. He was just going to surprise me by taking me to the airport but decided (very wisely!) that he should clue me in, seeing as I needed something to look forward to, what with more ill relatives and all.

After shrieking something like, "I CAN'T BELIEVE YOU DID THIS!!!" and "EVERYONE KNEW BUT ME?!" (Yes, they did- from my mother to my sister to my in-laws, several close friends including one I hadn't seen in ages! they all knew!) I hugged him and kissed him and made him tell me where we were going- so I could pack the proper clothes, you see.

We were going to Denver!

I was stoked and looking forward to seeing mountains- and, as I soon found out, a friend I hadn't seen in a long time. I told Adam that ten days notice was the perfect amount of time for a surprise. I had enough time to get the house and children ready and mentally prepare to leave them but not too much. It was still a surprise trip but not one I learned about at the airport (which would have REALLY bugged me and not in a good way! Besides, I want to pack my own clothes!)

My parents came to watch the kids and we were off for three fun filled days where we saw this....

Do you know what this is, dear friends? This is a MOUNTAIN. I hear-tell mountains are NOT FLAT and this is true. In fact, the whole area where we stayed was  NOT FLAT. For someone who is not an outdoors person but misses land forms with a deep ache in her soul, I was happyhappyhappy. We spent alot of time driving around, looking at the mountains, eating at local restaurants and doing a whole lotta nuttin.

For our ten year anniversary, we went to Washington, DC and stayed at a B and B. While that was perfect then, we got up early and were out of the bed and breakfast by nine am. This was fine, because in DC we wanted to DO STUFF and SEE ALL THE THINGS. In Denver, we wanted to a) sleep b)do nothing c) sleep. Oh, and be together. But, mostly, I wanted to sleep. This time, we stayed in a hotel which was perfect for staying in bed until nine am.

(It randomly turns out that Adam is an early riser. Around 6:30 Denver time, 7:30 to us, he would get up, shower and go get breakfast. Not that this was bad, as I would sleep, but we he would get back, he would try and social. Bleh!)

We drove up a mountain and went to Buffalo Bill's grave site because, why not, we were there. We also went to Idaho Springs which is just a neat town. I think it was an old mining town but now has cute restaurants and nice stores that are good for wandering around in. I even went into a Christmas store that had two adorable Holy Family statues and a cute vintage Santa. I could have spent alot of money there, and almost did, but Adam dragged me away. (Okay, I got one Christmas plaque.)

Adam wanted to go to the Coors plant, so we did. The only other scheduled thing we did was have dinner AND brunch with an old friend, C. C and I were friends in Korea and she and her sister are some of the few people I have known longer than I have known Adam. In fact, I remember telling C and her sister about meeting Adam and they were all floored since I was not they type of person to randomly meet and talk to guys! Adam finds it amusing how much alike we are- we like the same clothes and jewelry and we even randomly wore our hair in the same way. When we talked, it was like no time had passed.

This trip was just what we needed to relax and reconnect. Yeah, we came home to a broken garbage disposal and a tree down on our fence, but the kids (spoiled!) fine, the house is standing and we're getting ready to tackle the coming busy week- the someone's fifth birthday, my sister in town, the final count down to the NICU Thanksgiving.

Hope, Part Two

"Hope," Emily Dickinson wrote, "is the thing with feathers."  It is indeed... but sometimes it is also a young priest in a cassock.

We've had a change of command at our parish and have two new priests. One, Fr. Engineer, I met years ago when I was teaching in the Catholic schools. He was the vocations director and came around to the eighth grade classes to tell his vocations story. The other one, Fr. Youngin', is young and new, but a really sweet man. (I joke that it's not that I'm getting older; the seminary just takes them younger and younger these days!)

After Mass on Sunday, I stood in the parish hall, chatting with a friend as our children gorged on donuts. Fr. Youngin' came over to chat, as our friend was hosting the priests for dinner that night. Normally, I would bug out during these conversations but I stayed and the three of us began to joke and chat.

At one point, I made a comment about how George once said that when he grew up, he wanted to "be that daddy" (a priest). I said that the front row would be reserved for all this speech therapists, because, without them, my son wouldn't have a voice. My friend understood but Fr Youngin' is new and blissfully unaware of George (and the issues we have had with the parish). I made the comment to him that, "My son has a severe speech disorder and trouble talking."

I expected questions.

I expected a blank nod.

Instead, I got: "I understand I was in speech therapy until I was 12. Sometimes people have trouble understanding me."

My jaw dropped to the floor. "You? Really? You?" He nodded. "No way."

My friend laughed at me and said, "You're going to cry, aren't you?" I nodded and nearly burst into tears.

I don't know what Fr. Youngin's problems were. I don't know if he had Apraxia, articulation or what. I do know how hard it can be for anyone, anyone, to get up in front of a group of people and talk, let alone for someone with ANY speech problem to do so.Yet he followed God's call and became a priest. Every weekend he stands before a full church and says an entire Mass, and often a homily. He goes to the local high school and interacts with the students- and we know how children can be with someone who acts or speaks differently.

And he does this. Every day. Every week.

I admire that, I do. But, selfishly, I know that this man will understand my son. He will understand when George doesn't want to talk to people because he knows they won't understand him. Maybe he will understand why VBS was like the seventh layer of hell for my son- overstimulating and scary because of all those people who don't know him. Maybe he quietly spread awareness and understanding of those invisible disabilities.

We have had so, so many problems with our parish since last summer that I had nearly given up hope of understanding and acceptence. Between my own spiritual life being "meh" and the constant judgement of several prominent members of the parish, I had been expecting to just muscle through, going through the motions but any growth for me or my children would have to be done at home. I had stopped expecting people to be kind and understanding; I had started expecting judgment. 

We are still in the gale. I thought the storm had beaten the hope out of me but suddenly, I hear it again, quietly.

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

Funded

I'm not sure how to begin this post. I'm not sure how to write it. I'm not sure how to get through this without crying.

I suppose I should begin with George's godparents.

I first met George's godmother on-line on a website for local attachment parents. We bonded over being some of the few conservative, Catholic, NFP users of the bunch. We got to know each other better and they joined our parish. Our kids played well together and we would meet up for playdates, at Bible Study and other events in the area. We were so close that she was supposed to be at George's birth but the little turkey decided to come early, when her husband was away on business!

Both godparents have been an incredible support to us over the past few years. They even help out with the NICU Thanksgiving even though they have never had a NICU baby. They love and dote on George and have been some of his biggest cheerleaders, never doubting that he can do (what sometimes seems) the impossible.

About a month ago, they told us about a charity called Hannah and Friends that awards grants to children with special needs. These grants can be used to help the families afford therapy for their children. She encouraged me to apply and I did... except for one piece of paperwork from the school.

I waited on that one piece of paperwork but it never came. I decided it wasn't ment to be and I would apply next year.

On Saturday, his godmother called me and said, "Laura! Get that final piece of paper in! They have a grant for you!"

I was shocked speechless. "Will they take a letter from his SLP?" I asked. After calling around, a woman from the group called me and said, "Yes! E-mail a letter from his SLP as soon as possible and we'll bring you the check!"

His SLP is writing a letter and will e-mail it to me tomorrow. As soon as that final piece of paper gets there, we have a grant that will pay for a month of speech therapy.

When I told Adam this, he hugged me and said, "I feel like I should buy a lottery ticket!" I cried. We all agree that George's godparents have clearly "done their duty" (although I know they will continue to pray for him and spoil him!)

How blessed are we to have people like this in our life? People who love us and our son. People who help us out. Thank you doesn't begin to tell you how much we appreciate this.

But it's all I can say: thank you, thank you, thank you. Thank  you for loving us. Thank you for helping my son get a voice.

Now go check out Hannah and Friends and maybe give them some Facebook love.

Hope

A few weeks ago, I took George to the bookstore before speech. The bookstore isn't far from the SLP's office and we had enough time for a quick trip to play with trains.

When we were there, George looked at books for a few minutes and then wandered over to play with the train table. I poked around for a bit, surfed on my phone and then said, "Hey, buddy, you have ten minutes and then we need to leave for speech."

"No, nine minutes!" he corrected me, as "nine minutes" is the time for everything.

"Sure, nine minutes," I said with a chuckle, thinking someone needs to teach this kid how to bargain. I went back to looking at the fall books and a few minutes later I heard a woman softly say, "Excuse me."

I looked up. "I didn't mean to eavesdrop but I heard you say that you were taking your son to speech. My son was just evaluated and we are trying to decide if he needs private speech therapy or if we can just go through the district. Can I ask who you see?"

"Sure!" I chirped, digging in my bag for my business card. "My son has a fairly severe case of Childhood Apraxia of Speech. Basically, his brain knows what he wants to say but he cannot coordinate the mouth movements to say it. Because he's so severe, he goes to the peer model special needs preschool in the our school district and private speech therapy. Here is the name of the place we attend. She's wonderful!"

"He really severe?" she asked, taking my card. "He sounds very clear. My son is two and I can't understand him."

I nod. "George was like that when he was your son's age. He had one all purpose phrase and a few words but was mostly silent. He didn't even make noises when he played with toys and had a lot of anxiety around other people and new situations." The other mother nodded knowingly. "He's said his first three word sentence at 3 years and 3 months. He's worked so hard and has come so far. It's hard work but so, so worth it."

We chatted a little bit and I encouraged her to call me or e-mail me if she just needed to talk. George and I were late for speech that day, but when I explained what happened to our SLP, she didn't mind. Aside from the fact that it is more business for them, she is very passionate about helping kids and was glad we were able to connect with a mom who is at the beginning of her speech therapy journey.

When George was younger, not as verbal and we were in the thick of things, wondering if he would ever talk, parents and children who were farther in their journey really helped me. They gave me a shoulder to cry on, the names of people who could help me and promised me that my son would have a voice. When the world was trying to tell me I was overreacting, doing this, this and this wrong and thus stopping my toddler from talking, they were there to tell me that I wasn't over reacting and here's how to get help.

Their children, their children who had very limited verbal skills and were now talking up a storm, gave me hope.

That's what Adam said I gave the mom in the bookstore: hope. I told her speech disorders are real and some children really do need to be taught how to talk. I gave her resources for help, for both her and her son. And, most of all, George showed her that even children with severe speech disorders learn to talk - and talk well.

Hope.

My little baby boy gave someone hope.

This journey hasn't been easy. This journey won't continue to be easy. But suddenly, in that flicker of hope that I saw in the mother's eyes, it was worth it.

Thoughts

When George and I pulled up to the Dollar Store today, I saw a group of young adults get out of a van in walk in. Many of them walked slowly, holding their arms stiffly. One limped. All were dressed for comfort, in easy to pull on clothes. Like any young adults, they talked and laughed among themselves. But I knew. I could tell.

They were different.

Their van bore handicap tags and they seemed to have another adult with them to watch over them.

They were different.

Inside the store, they called each other over the aisles, asking their friends to come look and see what they found.

That's not so different.

When we approached the cash register, a few came up. One asked a friend which drink was the Dr. Pepper and his friend opened the door for him.

That's different. My kids would have held the door shut so the other one couldn't open it!

Without making eye contact, and in a halting voice that indicated it was hard for her to speak, a young lady said to me, "Your son is cute. What is his name?"

"Thank you," I said back. "This is George. George, can you say hello?" George refused, tired and hungry and thirsty.

"Like George of the Jungle!" someone called and I laughed.

"Exactly like George of the Jungle!"

As I was checking out, a young man stepped between me and the young lady. He stood close and said, "Thanksgiving is almost here."

"It is," I agreed and then looked at my son. "George, what happens around Thanksgiving?" I asked and he growled, "My birthday."

"Is that your favorite holiday?" I asked the young man and he nodded.

"Christmas and Thanksgiving."

"That's my favorite time of year," I agreed, before wishing everyone a nice day and stepping out into the hot sun.

They were different.

Yet, not so different.

Not so different from my son.

He speaks so clearly now, so much more clearly than before. We have hope- and we will always have hope- that his Apraxia will resolve. We have hope- we always have hope- that he will grow up, live on his own, hold a job, get married or be a priest.

We will always have hope.

But . . . we don't
.

See, the young people in the Dollar Store could be my son. Twenty years from now he could be with a group of friends, all who have differing abilities, enjoying a trip to the Dollar Store. I don't know what the future holds for him, anymore than I know what the future holds for my "typical" kids. Still . . . in the halting voices, I heard him. I saw him.

And that was the reason for my interactions, my laughter with them, the reason I encouraged my son to answer their polite questions. To some degree, I know the looks and questions they and their care givers must get in public. I know how it can be. I didn't want to be one of those people.

When we left, my only thought was, "I hope my kids grow up to be as polite and well mannered as they are." And I wished I had gotten the name of the group they were with, so I could tell the other adults how wonderful they are. *

*(And, yes, if this was a group of NT young adults who had a nice conversation with me and my son, I would want to find the other adults in charge, if there was one, how wonderful the kids were. I'm corny like that.)

Apraxia again

Our school district offers two options for kids with IEPs during the summer. One is ESY- extended school year aka "summer school." Classes are smaller and, unlike during the school year, are made up of only children with IEPs. Children are selected by their teachers to attend and typically only go if their needs are severe enough that they need intensive help to maintain progress they have made during the school year. George went last year and Cole is going this year.

If your kid has an IEP but doesn't need intensive summer services, they will receive itinerant, ("out patient") services. For George, this is once a week and his SLP worked so that he received his speech right before Cole was due to get out of school. I arrive 30 minutes early, George has speech and then I pick up both boys. Easy!

After speech last week, the SLP (who has both Cole and George during the school year)  made a comment about revising George's IEP in the fall. I seized the moment to chat with her about both boys.

The good news: George is making great progress and IFIFIF we've managed to avoid most of the reading and writing problems common with apraxic children, he may have his IEP dismissed as early as 9 or ten years old. Great! She also gave me a little preview of the ECSpEd preschool transition to kindergarten, which we will be experiencing this year. Glup! She also agrees that full day kindergarten will be the best option for him, as the day will be less crammed and he will not miss academic or fun (recess, etc) time to receive services. I also want him on the elementary school's OT radar.

The mildly bad: I have never done full day school for a kindy kid. Do I think he will be ready? Yes. Am I worried about his adjustment? A little because it is a big transition but the school knows us and will work with us. But full time kindy here is optional and you pay for the privilege. Does the district pay for this for kids with special needs? NOPE.

The mildly bad, part two: I asked about Cole. She also thinks he is apraxic but mild and it won't take him as long to catch up. Our private SLP concurs. Sigh. Kids with CAS need frequent and intense speech therapy.  Does insurance pay for this? Nope! I wonder if we can get a sibling discount, especially since I want George in the picky eaters feeding therapy group. Ha!
It's not that Cole doesn't talk. He does- at home. His problem is that his language deteriorates over the course of testing or a conversation. He doesn't talk much to other people. I don't think this is totally an anxiety issue; he likely has SOME but not as severe as George. I think this is going to be a theme- he's like George but not severe. I hate comparing the boys but there you are.

I talked to Adam about beginning speech for Cole in September. He wants to wait until after the first conferences to see how he is doing full time, in a place where he is comfortable. He went to school for three months and was just getting comfortable when the year ended. We're hoping he will make MORE progress in the fall and, not being severe, avoid the need for services outside of school. Do I think we will get away with this? NOPE, which is why I am beginning the hunt of speech grants/scholarships/free money. (Who wants to buy a bag?)

All this, though, means there are going to be some BIG changes around here. Guess who's going back to work in 12-24 months? Sigh.

Questions without answers

There are questions children ask that need answers but have none.

Why I born early?

Babies float in a big swimming pool of water. Your swimming pool broke and the doctors took you out because they were afraid you would get sick inside of Mommy.

I sick?

No, you weren’t sick. We were afraid you would get sick.

I had owe in my nose.

Yes,  you had a tube in your nose to feed you and a tube in your mouth to breathe.

Like Baby Who.

Yes, like your cousin.

George’s birth story is important because it is his story, the way he entered this world. It’s important to know not only because of this, but because his start in life is part of his health history. For years, people will ask me if there were complications with his birth and pregnancy and he will have heard the same answers over and over again: PPROM, RDS, the vent, the oral issues. One day, he will have to take charge of his own health and he will have to answer these questions for himself.

I rejoice that my son has his own voice and is able to ask these questions on his own. He has the questions and I should have the answers.

I don't, though.

I can tell him scientifically, why. I can tell him what the doctors told me. I can tell him about the wonderful people we have met, the gifts we have been given, the joy that has come with his journey.

But I don't know why.

I don't know why him.

I don't know why us.

Most of the time, I trust. Most of the time . . . I wish I knew why.

QTF:Melly, I ain't so very drunk!

1. Just kidding. I'm not drunk. Not that you would know it by the half empty bottle of two buck chuck and the IM conversation with my cousin. But hey! Before you judge, I'm writing this at 9 pm Thursday night. It's after five pm!
2. No, I am not drunk. But, damn, I should be. I haven't been this upset since George was a baby. Aside from the hideous VBS week, Cole tried to drown himself at the pool. He was wanting me to go to the far side of the pool to make him a "bed" on the lawn chair. (He wanted the towel down on the chair to lay out like the teenagers!) I said no since I was talking and he walked off. Two seconds later I turned around and said, "Where's Cole?"
   Now, I have no idea why I turned around when I did. Prompting from the Holy Spirit? Mother's instinct? No clue, but I didn't see him and started running to the pool. I just knew where to go and I saw him under the water, struggling to get to the top. I can still see the white beach towel out behind him, one little hand still holding it. I grabbed his arm and hauled him out of the water. He started coughing and gagging and I said things like, "Cough it up, Bear. You are such a brave boy to try and swim to the top. Did you see fish in the pool?" He didn't cry but he freaked me and my friend out.
3. Believe it or not, I didn't cry which is why my bursting into tears in front of one of our parish employees is so notable. Yes,  I did. I just got sick and tired of people literally being in my face and aggressive about how I was helping George. I got tired of people chirping, "I know how you feel! My son was attached too!" and me wanting to scream, "IT'S MORE THAN THAT!" I finally told her that I come to Mass not for the people or the fellowship but for the Eucharist. No more, no less. May that be a wake up call to the parish and how people like my son are viewed.
4. Did I also mention that they literally took my son from my arms, crying, as I was protesting? Hello, trigger much?
5. After I wrote my post on Wends, I took George to speech with the SLP in the school district. He has seen her nearly every day for two years. As they walked back to the room to work, I could hear him scream, "Mommy, don't leave me!" When they came out, she told me it would be best to pull him from VBS because we were both seeing anxiety behaviors we hadn't seen in years. YEARS. Thankfully, she doesn't think we need to see a doctor for it. But MY BABY, Anxiety is hard enough for adults and this is my BABY.
   (Anxiety in new situation is somewhat normal for Apraxic kids. Yay!)
6. My goal this week is to not punch the church employee who took George from my arms. How's that for a good goal?
7. Camille loves VBS but Joseph is still luke-warm about it. I am wondering if I will send him next year. That year, he will be in the junior high group (!!!!) so it might interest him more. If not, I think I will look into Totus Tuus for him. Or call it a wash and figure he's just not a VBS type kid.

Music from the Wii

I'm sitting here listening to music from the Wii. It was supposed to be another one of my days off, but I kept George home from VBS. He has speech today and while I normally would have kept him out, he has missed plenty of speech due to the chicken pox. He needs to go. Yes, I would have picked him up early but... it's not worth the drama or struggle for an hour of "me" time.

So, he's home playing Wii, I'm drinking coffee and blogging and ignoring the housework. Sounds par for the course, no?

Tuesday was a pretty rotten day. I came home from VBS emotionally exhausted and napped on the couch for a bit. George had his private speech and did great, but when the SLP asked him is he enjoyed VBS he said, "No." When asked if he liked snack, he said, "I no like snack."

Well.  Sigh.

I asked her what we should do: keep him in or pull him out? She really couldn't give me an answer because there really isn't one. Yes, he should probably experience VBS. And, in my stubbornness, I want MY PARISH to be able to accommodate him. I want him to go to a CATHOLIC VBS. I wonder if we are doing him good by saying, "You need to experience this and try." Maybe he will grow up and say, "I'm glad my parents made me do things typical kids did because it was good for me and helped me learn how to handle everyday situations."

Or will be grow up and say, "My parents forced me to sit through something that was physically painful for me. They didn't accept that I couldn't do it and didn't listen to me when I said I didn't want to go."

Sigh. Can't win for trying, eh?

For the Glory

A few weeks ago I met up with a long time friend for coffee. We chatted about children and somehow got on the "six degrees of separation" about people we knew. A relative of hers is a special education and she said she often prayed to God for a special needs child because she knows how to be an advocate for children, isn't afraid to make waves and has lots of connections in the special needs community.

I nodded and sipped my coffee. I said nothing. Inside, I was thinking, "Are you frikkin nuts?"

(Now.  Let's digress here. You're going to read this and may think, "Laura is telling me to abort my unborn child because he or she has been given an diagnosis and will have a life with disability! The baby will suffer and I will suffer and it isn't worth it!" Let's clarify: HELL NO I AM NOT SAYING THAT.)

This friend- and she is a friend- is a devote Catholic. No matter what a doctor told her about her potential unborn kid, she would chose life. I completely agree with her. Life is always worth living, no matter the suffering (perceived or real), no matter the struggle,  no matter the long term out come. As a mother of a special needs child, I will say it loudly HIS LIFE IS WORTH IT.

But. It is not EASY.

My friend has what I mourned Monday- blissfully normal kids. They are polite, well mannered and well behaved. They make excellent grades and are good at sports and music. Do I believe for one minute her life is picture perfect? No. But she has many things I cannot brag about because they do not exist in my life.

And I think, "What mother wants to see her child struggle?" I ache when I see my son struggle to enjoy something kids his age love, like loud music, dancing, a play area, certain foods. (What four year old does not eat pizza? MINE.) Think about it- even the Blessed Virgin wished she could help Her Son as He struggled with the cross.

But.

The Blessed Virgin knew what Jesus was going through was for the good of all humanity. She ached with the real and intense ache of a mother seeing her child suffer and die. No more, no less, as that is the most intense ache a  mother can know. Yet . . . she knew. She trusted. As much as it hurt her to see Jesus suffer and die, she knew it was for the glory of God.

If I could take this from my son, would I? Yes. I offered. I prayed. I screamed, "GIVE IT ME, MAKE ME SUFFER, NOT HIM!" Believe me, I prayed that I would be left with the lasting scars of his early birth, not him. I am a mother and my basic, most burning desire, is to "make it better." That's why I cannot fathom wishing a child of mine would have a special need. Would I love my children no matter their abilities or needs? I do! Would I wish it on them? No. Because no mother WISHES to see her child suffer, to struggle, to overcome.

Yet like the Blessed Virgin (and let's be clear I am SO FAR from the BVM it's not even funny but we are both mother's and, in that,we get each other) I love my child. Deeply. I also love Him enough to trust that all the challenges my child faces are for His Glory. I don't think all this is due to random chance. I think there is a reason behind it all, reason why it is him, a reason why it is our family. Do I pretend to know why? Nope. I just have to trust, to accept, to be the best mother I can be. I have to walk with him on his path and give him the tools to be the most wonderful person he can be and let him know (as I must all my children) that their weaknesses will show God's greatest glory.

(post inspired by these verses:  The Gospel according to JOHN 9 As he walked along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 Jesus answered, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him.")