Mom? Can I ask you a question?

When this phrase tumbled out of Shea's mouth last week, I realized that I had never heard him say it before. Hard to imagine, I know.

Most kids ask questions and chatter non-stop...unless, of course, they have verbal communication difficulties then questions come for their eyes and hands and word approximations. Parents intuitively learn a whole new alternate language so we know how to communicate with our kids. But what about the big old impatient world?

This week, I was one of 24 field trip parents for Shea's Kindergarten visit to the Pt. Defiance Zoo. 40+ kids, 2 teachers and many, many very involved parents made the trip together on a big school bus. We were blessed with a wonderfully brief bus trip, but as we bounced along three to a seat, I heard all around me Shea's peers talking, telling jokes, sentences just rolling of their tongues, all of them taking speech very much for granted.

I wish that those usually easy to roll off the tongue sentences and phrases didn't get stuck, stilted, dropped. For Shea, sentences don't just naturally flow; each word is a labor and putting them together is a juggling act with a seemingly long drop that takes great patience for him and the listener.

Honestly, it is hard to hang in there with him to the end. I holler at Molly when she finishes his sentences because he needs to just bang through it, to practice. But I do it too. Usually in my head but sometime out loud when I can tell he is loosing the thought and getting frustrated.

The other day he said, "Remember when that was ice?" pointing to a tarp in the back yard with icky mosquito water in it. Yes, indeed, there was ice in there last winter and that he mentioned this sort of floored me.

I don't think he has ever said "Remember when..." before and I am thrilled that he is beginning to do it now. How wonder how he see his own struggles with speech?

Sometimes I say, "Shea, you are such a good talky-talky now. Do you remember when it was hard?" Wish he would answer me but he doesn't. I wonder if he will look back and think, "Talking was hard for me when I was a kid." Or will it be much more present, "Talking is hard for me and has been that way since I was a kid."

In the early days, I used to have bittersweet dreams about Shea where he was talking and saying words. Just being able to hear his sweet little voice felt like a gift.

Now, I dream about having a real conversation with Shea where he tells me what he is thinking or dreaming of or imagining or hoping to do. A conversation that is not Wii or Fudge pop related.

I hope that happens some day.

Life is not fair. They say it and I say it because it true. It isn't fair that for some kids talking is excruciatingly hard or that for some kids walking, focusing, socializing, breathing, listening is excruciatingly hard. A magic wand would be nice but all we have is our individual ways of coping.

So, no, life is not fair but I remind myself yet again, there is room in the world for Shea and all the other kids who have to work so hard to do the things that are so much easier for their peers. There is room for of them and they will be stronger, more patient, more adaptable people because of it.

I sure hope so.

Assessments, feedback and placement: oh my!

We had the big "Feedback" meeting yesterday. Because Shea is turning 6, the school puts him through all the assessments again to determine what services he will qualify for. The feedback meeting it to share the good, bad and the ugly with the parents and the team.

Jake and I went and Molly babysat Shea and his little buddy Honon during the meeting.

Shea will qualify for speech but does not qualify for adaptive/cognitive anymore. His description is changed from DD Developmental Delay to CD Communication Disorder.

Apparently, he falls within age appropriate range for all adaptive and cognitive testing and I am taking that as very good news indeed.

He will get extra accommodation for following directions but basically the consensus was that he is academically ready for 1st grade.

Social will still be a piece for him but that is coming along.

Basically, the meeting was night and day from the 3 year old meeting which I sobbed through. We have sincerely come along way.

It was encouraging to hear his teachers talk about and show us the progression on his work. He came into Kindergarten barely able to spell his own name and now is banging out legible sentences. Marveling the teacher with his reading and sounding out unfamiliar words phonetically.

Now, we just have to do battle on placement.

The formal IEP meeting will be in 2 weeks and I need to do some homework on what teacher or classroom I feel would be best. My inclination is to go for the multi-age program because that is what I am familiar with and Molly had such a wonderful 1st/2nd/3rd grade experience. But, Shea is not Molly and it may not be the right fit.

Some serious thinking to do now but basically our boy is coming along.

I would say he is the successful product of early intervention. For those of you who may not remember, Shea didn't even say his first word until well past 3 years old.

We have really come a long way! But we are not done. He will still need much more speech to work on articulation and he may need tutoring in school as he gets older but the worry that he can't mainstream is pretty much dead.

Sincere thanks to all his teachers and therapists who have made these last 3 years so productive for him. I will never, ever forget any of you.

Kitten therapy

As yet still un-named but oozing in adorableness, meet our new kitten. A teeny-tiny kitten has moved into our house and hearts. None are immune.

Here she is doing "Cat in the Hat" for Halloween.

Why now? Our good old timer cat, Hector, has gone to the great big litter box in the sky. 17 years old. He had a good long mellow life and was a particular friend of Shea's. Back when Shea would only bestow words on us very sparingly, he willingly chat up a blue streak with Hector. They spoke the same language.

So now Hector is gone and we have adopted a new kitten, not just for Shea but for all of us. We could all use a dose of kitten antics in this house. Watching this little critter charm our socks off is pretty fun.

We're still naming though.

Top 5:

Lou-Lou
Cleo
Daisy
Princess
Bat cat (Shea's offering)

It's a real toss up!

Slightly awkward introductions

"What you name is?" Shea pointedly asks a lady or a child, anyone that interests him.

With a big strong voice, he says "My... name...is Shea. This is...my... mommy." He points up at me, keeping me within "hide behind the leg" reach.

Slightly embarrassed, I smile and make some comment about my name being "mom" and try to nonchalantly move on.

These aren't long conversations for Shea but they are frequent. At a typical day at Granny's Thrift Store, he may introduce himself 5-6 times.

On one hand, I am thrilled that he has the words and the sequencing to be able to introduce himself. Most people are enchanted if not a little flummoxed by such a formal introduction from a small child. If the chemistry is right, he flirts and chats it up with them about...who knows...this and that. Sometimes they can't quite understand what he is saying and they look to me to translate.

Sometimes I can see it in there eyes that they are wondering what is amiss. And, I have to admit, it is hard to see.

So, I paste on a seasoned grin, keep an ear open and spin off in the direction of the...let me see; Don't I need some shorts?

He is old enough to engage and have chats with people.

Wow. We have come a long way.

Hard work

When Shea was younger than 3 or so he had no words. He grunted, pointed, squeaked and was mono-syllabic. He made a sound that I always visualized as "ACK" or sometimes "OCK". Remember Bill the cat? Didn't he say "ACK!"?

I remember Shea would make these 'hard work' sounds; like grunting from exertion.

Even when something wasn't really heavy or hard to do, he would make the sound for added emphasis? Or maybe because it was just a comfortable, easy sound for him to make.

Later, at 3 1/2 he would say his first word "up" while lying on his back and pushing Bubbles hands up with his feet. "UP!" Hard work, guttural, deep from inside his torso.

From that day on, little by little, it has come. Sounds, words and phrases; they are there, accumulate quickly and are still coming. Even though, at times they sure are hard to pin down.

The other day Bubble said she only imagines he will need Speech for another 2 years or so. I had been thinking 5 more years. She said that he will probably need help with some school work or extra tutoring down the road but, honestly, who doesn't? That we can sure do.

Now, he still makes the hard work noise not just for emphasis, but to ham it up or to make a joke or to act like a super hero.

Which he is.

Train wreck: the good, bad and the ugly

The good? Actually the good is real good.

Our new Speech and behavior therapist gal came on Monday. She came to my house. Shea needed about 47 seconds to be shy then invited her to play magnets.

They had a wonderful time. She pushes a little harder then some, insisting he says a word not just once, but 3 or 4 times. It went really well and I look forward to having her input all summer.

The bad? Shea is doing Mini-hawks sports summer camp. All week, from 8:30 to 11:30, they (39 little kids 4 - 6) play and learn about baseball, soccer and basketball. After 3 solid hours of play, I know they are tired but they get out right next to the big playground at the elementary school. It is nearly impossible to not let him play a while after wards.

Shea wants to be the fastest, climbing the highest, running, jumping, doing circus tricks. On the playground he is a leader but just doesn't have the language and socials skills to deal with that role. Basically he is getting more and more cranked up. And, not in a good way.

One little boy points at Shea and said, "That boy made Logan cry today." I tried to find out what happened, tracked the boy down, heard what happened. I guess Shea took his hat and wouldn't give it back and then started hitting.

I apologized to him and tried to explain that Shea doesn't have many words and talking is hard for him. That he didn't do it to be mean.

Well. It was going down hill fast. I feel I need to jump right on it if Shea hits. I am not going to just hang back and let my kid hit some other kid and not deal with it. I corrected him once and hoped he could keep it together if he just calmed down. I probably should have just taken him home then. Implement a 1 strike you are out rule.

I am sure this is part of his Sensory Integration issues. He gets so cranked up when he is playing with lots of other kids that he is literally whirling top speed, no time to STOP and communicate, no time to listen to his mom, no time to focus on his behavior. He starts hitting. You know, train wreck we are on our way.

The ugly?

Shea went to play on a big dome climber and, of course, all the other little boys followed him over. The behavior continues and he hits the same kid again. I jump right on it again but he is inside the dome. And, get this...he is running away from me, eluding and ignoring me. Will not come to me. Laughingly he continues to elude me while my blood is beginning to boil, I am saying the old, "you come here right now! I am going to count to 3. Shea! I mean it. I want to talk to you."

Pointless. He thinks it just hilarious that he doesn't have to listen to me and that I can't get him.

Until, I moved my fat butt right on down and climb inside that stupid dome and grabbed him, peeled his fingers off the bars and jettisoned him out from under that dome. I literally had to physically remove him from the area with dozens of mothers, fathers and other kids watching. He was still trying to run from me and refusing to walk. We had a long, excruciating, not very gentle walk all the way across the playground with Shea in full melt down rotten kid mode and me barely able to keep from completely exploding.

Absolute horror show.

Tomorrow? I don't think so. Time to shake up the dynamic. We are going to the pool.

Busy days

There is a literal tidal wave of activity this time of year. The weather is awesome so dinner and bedtimes has a dangerous tendency to be later and later. Where do the days go?

School activities and end of year parties, 2 pool parties, busking, field trips, skate park party, violin party all within the next week or two!

Add that to it being my seasonal busy time for my job.

In other words, I need about 4 more hours to my day.

I guess, that is my surreptitious apology for not posting for a few days but I will share a few tidbits.

Shea is a talking machine. He is no introvert. He talks all the time now. Articulation is still challenging but he is in there "holding his own" with all the other kids at pre-school. We had delightful Sophia over for a play date on Monday. Once we got over the fact that Shea didn't have any babies to play with and Sophia wasn't particularly interested in trucks and cars, they settled on horses and had a lovely time.

Not sure who I adore more, Sophia or her mom. So, I call that a success!

Just got back from a Special Education Advisory Committee meeting tonight. Some good news on that front. Through the stimulus money coming down but tied to IDEA, there is money next year for a training day for all staff to focus on Special Education issues only; inclusion, curriculum, parental input. We have the summer to develop our plan and can implement in the fall.

In fact, we are developing and implementing a parental survey and feedback form that will be able to go along with that as well.

These are the kinds of things are so helpful and useful. The parents always need more options for healthy input in a positive way. I consider this a win for everyone!

I also found out they are offering something different next year for Kindergarten. A hybrid pre-school/Kindergarten year. Apparently, there is a bubble of kids (Shea included) who isn't quite ready for Kindergarten. They are opening up another class that would be a group of kids who had Pre-school in the AM and then moved to Kindergarten in the afternoon. It is assumed that these kids would do this for next year then have would all have all day Kindergarten the next year.

So, I am really happy. I think that is great for Shea and encouraged that they are open and flexible to adjusting placement offerings for a bubble of kids.

It is one of the things that make me thankful for a small school district. They are able to make micro-adjustments. They don't have the macro infastructure and resources that larger districts have but they are able to really fine tune and devote quality time.

Notice all those are happy, up things!

Maybe my next post will be all the crabby things that are happening lately?

Opposites

I have been playing the Opposites word game with Shea lately.

You know:

Me: Shea, what is the opposite of tall?

Shea: Little

Me: Yes, or how about short.

We go through it a few times and he will get it. Repetition. Repetition.

Some are easy for him:

Me: Black

Shea: White

Some really surprised me:

Me: Opposite of forward

Shea: Backward

I was delighted that he could get that one.

Then tonight:

Me: Opposite of sweet

Shea: Icky

Ha! There is that family sweet tooth!

Me: Opposite of no

Shea: On

Interesting that he must have seen "no" in his mind and reversed the letters and read it back to me.

Pretty cool that his reading is coming on so well. And, vocabulary.

Enunciation is still the tough one.

Happy "F"day!

No, I am not being profane! I might mean happy Friday as well, all of us I am sure, have had a hell of a long week.

But, what I really mean is "F" day. You know, like the letter.

It looks like Shea may have finally mastered the "F" sound today with Bubble. "F" is one of the classic tough letter sounds that take a lot of lip and mouth control. Shea would just skip the whole sound and put something easier in it's place.

Like:

Sunny for Funny
Serry boat for Ferry boat
Sog for Frog

You get the idea.

Interestingly, he didn't seem to have a problem with putting the "F" sound on the end of a word.

Off, Cough, Yaff (laugh), you already know about that pesky "L".

But, today Shea was full of F's: funny, found, ferry boat. They seemed to come easily, without him stuggling. In fact, he didn't even seem to think twice about it.

Our work this week is to keep them coming. Don't let him slip back to old easier pre-F days.

When it was time to go, Shea said, "I no want to go." When pressed he said, "Stay with Bubble. I miss Bubble."

Bubble said, "Shea, you will always, always be my very special friend." He then went over and gave her a big long hug that melted good old Bubble to blurry tears.

She said, "Shea you have made my day."

Thanks Bubble, you have made our day too. A very Fine Friday to us all.

We have come a long way, baby!

Two years ago when Shea was just about to turn 3 we were trying to get him to blow a cotton ball across the table. Just getting his mouth to work and blowing with enough force was an exercise that we worked on for quite a while. It seems like an age ago.

Referred from a friend, we were also just beginning private speech therapy with Bubble lady. He wasn't speaking at all. He was coming along well with signing, the whole family was and most of my excitement and enthusiasm at that time was over those strides.

Bubble took the signing as a good indication but never really pursued it with her therapy. She was going to teach Shea to talk and at first it was painful to watch. Sometimes it still is.

I remember a day where Shea was pushing cars on her window sill. Bubble gently took them away. Shea maybe grunted his annoyance but just stood there watching and waiting for what came next.

"1...2...3...Go!" She said and she pushed the car to him. "1...2...3...Go!" She said and he pushed it back.

Again, "1...2...3............................?" Waiting for Shea to say go was one the longest, most anguishing waits of my entire life. I literally screamed "GO!!!" in my head, again and again. Internally, I pleaded for him to just do it. I physically squirmed, it was so uncomfortable to watch. Bubble kept her cool. He knew what she wanted him to do. All he had to do was try.

I am not sure how long she coaxed and prompted him with the "1...2...3...?", multiple minutes perhaps which seemed like days, but he eventually said something that was a close enough approximation to "Go" that they could move on. They did those over and over again.

Bubble cheered and congratulated Shea on this big hurdle but I was a wreck. It was a very hard thing to watch. Like watching paint dry while having your heart rolled in ground glass.

There are a lot of little stories like that but my point for this post is how far he has come. Time is an amazing thing especially for the little guys. So much can happen in a year or two.

As we near Shea's 5th birthday, I am hopeful. He has come so far. I still don't know what it all means but we are still moving forward.

As I type, Shea has just come down from his bedroom ready for snuggies and interested in what I am doing on the computer.

So, I point out to him a simple, familiar childhood mini-sentence and he reads out loud to me, "1...2...3...Go!"

Yes, baby, you have come a long way.

Where are the "L's"?

One of the hardest, last to really try letters for Shea is L. He will place the letter "Y" or some other letter in its place in a word.

"Yeyo" for yellow
"Mowee" for Molly
"I yuv you" for I love you

You get the idea.

Bubble says that L is a difficult articulation for kids, all kids in fact. But especially for Shea.

Say it to yourself. L, L, L, L. Feel your tongue tip rest gently on your upper teeth? That is the sort of sophisticated and nuanced tongue movements that Shea really stumbles on.

The good news is that he approximates the "L" sound with another letter sound now. He used to not even try. That was the apex of fright and frustration for me. When your kid won't even try.

It may be a while before we will ever get it.

This morning, I called up the stairs, "Shea?"

"Yeah?" he yelled back.

"Honey, come on down for some cocoa."

"Ok, I coming."

I stopped, surprised and pleased and said to Jake and Molly. "That sounds like a kid who can talk."

He will get there...eventually.

Comparisons...never a good idea

Don't compare. That should be a hard and fast rule. You would think I would know that by now.

When I was in high school, I had a poster of Albert Einstein on my wall with this quote, "Do not compare yourself with others, for you will always find someone better and worse than yourself." Or something close to that.

At the time, it made a big impact on me and helped me through some tough years. I never forgot it.

But, then the kids came along and it is really hard not to compare to other kids their age. With Shea, that was really painful so, understandably I stopped comparing typically developing kids.

But when I read a really good blog post about another kid with Apraxia the other day, I slipped right into comparing my speech delay kid with hers.

I know, I should know better by now.

One side of me celebrated with the mother for the great strides that her son was making. He was only 3 and he was doing great; sentences, content, vocabulary. No doubt Speech Therapy 3 days a week was key. But, how could they afford that?

See? Don't compare. It will always make you either feel like shit or smug. And, neither is a very good way to feel.

So, I guess, honestly, it made me feel like a loser and afraid for Shea all over again. That I am not advocating hard enough. That I am not doing everything that I can possibly do. That I should be somehow making the state pay for more than they already are. It makes me feel like I am lazy and don't sit down and focus on drills and modeling as much as I should.

That I just treat him like a "normal" kid too much. Is that possible? Is that terrible? Sometimes I don't even know anymore.

How sick is he?

Shea is sick; a fever and a cough. And, this brings up one of my worst fears; how can you tell how sick your kid is if they don't really talk?

This is a tough one, always has been. Usually your kid will say, "Mommy, my ear hurts." Then you take them to the doctor to see if there is an ear infection. Etc.

But, if your kid doesn't really discuss how he feels, I feel like I am always trying to read between the lines of a pantomime.

Oh, he is sick. That I know. Temp over 100 and a wet, rattly cough. So, we are doing what we can; home from school all week, doses of Tylenol, lots of juice, blankies and pillows and piles of videos.

But, there is this gnawing fear that I am not doing something I should. That he can't tell me what hurts, doesn't even really know how to tell me.

I suppose I make these deals with myself, "If he isn't better by X day then I will take him to the clinic." That usually calms me down enough to just let him get better while not being consumed by too much mommy guilt.

Sad and scary.

Speech Therapy update

It was one of those early Spring days that gets your blood and all the little buds on the trees all worked up. Getting up to bright blue skys, brilliant sun, not too cold and warming up by the minute is a rarity in the Northwest at this time of year. And, a day like this is treasured like loot.

By the time, Shea and I were on our normal Friday Speech Therapy run to Seattle to see Bubble lady, we had shed our coats and were just soaking up the rays on the ferry boat.

A nice day for a nice report. Bubble says that she is impressed at the extent of Shea's language and sentence structure. Huh?

For example, he said to her while holding up a beloved Lego contraption, "I brought this for home." She didn't seem concerned that he mixed up "for" and "from" but focused on "brought"; a complicated word that is an embedded idea. This is actually a pretty good example of the sort of things that Shea is saying these days. A big whoop for many a kid but a pretty grand leap for Shea.

Bubble said that she is less worried about his articulation which is something I always seem to fret about because it is hard for other people to understand him. But, she said she was impressed with his word choices and the cognitive sequencing needed to "build" a sentence. Huh?

I nod happily because she seems so please but I rarely fully understand what she is saying. Even after all this time. But I absorb what I can and try to parrot it back to Dad and Gramma and friends and the blog. I hope I didn't botch it up totally with all that repeating and reemphasizing.

She asked about plans for Kindergarten and seemed to think Shea was ready. I expect academically he may be but social he isn't there. For example the potty training. I just don't feel good about sending him into a mainstream Kindergarten class when he is no where near being potty trained. It just seems like playing with fire.

I did mention my concern about his "low tone" is his mouth and lower face. Maybe his bladder has "low tone"? She suggested we talk with the normal doctor and if they can check that off first, she has referrals for psychological help for Potty Training. Ok. We can do that.

So, a beautiful sunny day with some positive news and an action item. I'll take it.

My son is a cat

Shea always did plenty of verbalizing as a baby which made us all the more confused when the babbling and the words would not come. At a very young age, he developed a pretty impressive variety of squeaks, coos and grunts. He did point, which I guess is a big deal, and was certainly able to get his needs understood through his own means.

When he is tired or in a particularly snuggy mood he makes this sound like a meow or a tuneless keening. Later when he could talk a little more, I asked him, "What are you saying, Shea?" And, he said, "Kitty" I asked him who was a kitty and he pointed to himself.

Now, that he has more control of his mouth and has a wider vocabulary, he actually says that he is a kitty. He tells me that I am the mom kitty and then he lovingly butts his head into me, meowing.

Granted, this is a lovey sound, a happy, cozy cat sound. I remember trying to describe this unusual behavior to the psychologist as the UW CHDD. She was a particularly officious person with a very blank, professional demeanor throughout the exam and testing. I said that he has this specific vocalization for when he is hugging, tired or lovey that sounded like a cat's meow. In fact, he calls himself a cat.

Something cracked in her face and she gave me a genuine, "Aw. How sweet". I was only offering the story as a sample of his relationships and communication skills. But, I remember it vividly and really it was one of the more truly human moments of the experience.

Not only does he talk like a cat, he rubs his head on you like a cat. Now, I know that this has something to do with his Sensory Integration issues but, never the less, he rubs his head or head butts you like a happy cat that wants a pat. If encouraged, he will also crawl around on the floor and "pretend" to be a cat.

It is true that we already have 3 cats whose job is supposed to keep the rodent population at bay. Shea does have a special relationship with them; all 3 and will sit and discuss cat type things with them for as long as they will allow. But, Shea is our favorite cat who gets special favor and treatment as a key part of the family.

Scissor, Missor, Wizzor

Gently nudged by Bubble lady, Shea and I play this game. She says that rhyming words can help with vocabulary development, articulation because he says the same ending sound over and over. But also cognitive planning because he has to think of another starting sound and add it to the ending sound. Apparently, this is a game that packs a punch.

White, kite, bite; usually our words are one syllable words.

Cow, wow, pow; mostly easy, familiar words.

Poop, loop, coop; occasionally funny, goofy words.

We trade off, back and forth until we have gone through almost every letter in the alphabet then he will pick a new word to rhyme. It doesn't need to be a real word, in fact the made up words are even more fun.

"Rhyme with scissor, mom." Shea starts the game as we are snuggied in bed this morning. Good one! Two syllable word but nothing really rhymes with scissor. Doesn't matter, we are off!

This is a game perfect for the car, airplane, waiting on the ferry; all the little boring lulls of life.

When Bubble has suggested something like this in the past, I have to admit I only half listened. If I didn't immediately see the power or importance, I would just file it in my already very full and barely organized mental file and then eventually forget about it. But, as we move toward our 2nd year anniversary with Bubble, I have gotten better at just going with her suggestions. Realizing it doesn't necessarily have to make that much sense to me. It's worth a try for Shea's sake.

Or, simply, making a little investment in a leap of faith. Sometimes it pans, sometimes not but maybe the leap in itself is the point.

Connections

One of the reasons I started this blog is to connect with people in an easy, fun way. Sure, it is a great way for family and friends to stay in touch and I love that. But, I wanted to connect with people like me who may feel or have felt the profound isolation and vulnerability of being a special parent. Nothing is lonelier than that.

I am always mightily touched and gratified when a little piece of magical connection happens. And, don't think I exaggerate; I do think of it as magic.

Thank you to all the people who leave little comments or visit my blog. Maybe you know exactly what it is like, maybe you are just starting out or maybe you are just curiously peaking from the edge. Frankly, it doesn't matter because I just don't feel as alone anymore and for that, I sincerely thank you.

I remember when it began to dawn on me that Shea had real challenges that he was not going to just "grow out of". Those were black days indeed. I had to get my brain around what being "special" really was and how I was going to look at it. Denial and avoidance don't work for very long as a strategy and the only real comfort I could find was hearing other "special" parents stories. Those parents understood. I could see it in their eyes and hear it in their voices; they knew exactly what I was going through.

And, what I was able to see was that these parents love their kids as much or more because of the struggle. Just like other parents, they try to see the world objectively to predict the pitfalls and soften the stumbles but even more so. Specials parents possess an almost herculean energy, drive and focus fueled by these frustrations and sorrows. In fact, I doubt there is anything a special parent can not do once they set their mind to it, except of course make their child different than who they are. Many special parents throw themselves into activism, research, art, writing which perhaps is the healthier side of the equation. Many special parents buckle under the strain, both financial and emotional and it is common for marriages and partnerships to dissolve.

It is up to each of us to find and adopt the path that will guide us during these rocky years. After a while, a body of experience builds up in each of us. Whether we believe we have wisdom to impart or advise to give, we do. Because part of this struggle is to somehow, some way not feel so alone.

That is what I want to do with my blog. I am no writer but if I can touch one person and make them feel like they are part of a bigger community of parents who all know what it is like to weep, fight and struggle for their child with special needs then I have succeeded.

So, cheers to you, reader! Thank you for helping me help someone who is helping yet another. This is what it is all about.

Rhyming words and dirty kleenex

It was Bubble lady Friday with Shea and it went pretty well. He just loves her and it really is just a good solid hour of intellectual play time for him. I usually spend the time listening to progressive talk radio or reading The Sun; a brief respite in a busy, on the road kind of day.

She has instructed us to work on rhyming words with Shea; make it a game and make it fun. She says that is isn't only just for his language development and articulation but clues and triggers for early reading. Sounds good and he is certainly interested in words and letters.

Recently, he has begun to demand what each road sign says as we drive. Lots and lots of signs. Repetition doesn't matter. Yes, he is interested in words.

I remember saying, "Shea may read before he talks." And, he is on his way.

We let him play on Starfall.com a wonderful educational website that begins with the Alphabet which includes ASL too. Now, he has moved onto the more complex early reading components, perhaps over his head a bit but the desire is there and he likes it.

Bubble also made a point to mention to me that his verbal sequencing is beginning to be more fluid. For example, he would say, "Bubble...lady" or two distinct words with a pronounced delay between each word. She pointed out to me, and I see that she is right, Shea's language is beginning to flow more smoothly with less choppy stops and starts.

Hey, that's true! I had only really noticed that the sentences were coming but she is right, the words flow with a more natural, less stilted cadence.

Shea also arrived at Bubble lady's with minor sniffles, so another thing they focused on today was nose blowing. I never have been able to get him to do it and Bubble told me that it is a sequencing thing and difficult for some kids. Now, that I think about his low tone with his mouth, I can see that it would be harder for him. She kept encouraging him to close his mouth and that was the trick. They worked on it today and he is nearly down with a good nose blow now.

Pretty good. Progress...it seems.

Sentences are coming

"Walking man go to the Z-O-O- Zoo! See lots of animals." Animals came out more like, "amanals" but close. Shea was very talkative at dinner and seems to have a verbalization boost in the evenings.

Articulation is still challenging and I find that I still do a lot of translating for him. But, at least he is trying. I wonder if I should just shut up and let people figure it out.

Bubble lady (our speech pathologist) makes a concerted effort to really push him. He will say, "hard one" or "hard word" and not want to even try. She spends a bit of time telling him that it may be hard at first but then it does get easier. She used the "Little Engine that could" story as inspiration. Sometimes he will give it a try, sometimes not.

I celebrate the successes he does have no matter what and try not to dwell on his frustration. I wonder if I am protecting myself as much as him. I focus on how wonderful it is that he can say his alphabet and count to 30 (or so). I was dazzled when he started singing the "Happy Birthday song" the other day. When did he pick that up?

Not being able to talk as well as your friends has got to be a very frustrating, humiliating daily occurrence. I bleed for him and naturally try to protect him. But, for his own good, I need to broaden his relationships. Our OT is suggesting one-on-one play dates, which will give him needed practice. I shouldn't be but I am nervous to reach outside of our protective little universe; of rejection for him and me, setting him up for ridicule, inviting someone into his life that won't be as understanding as his family. But, I have delayed long enough.

This morning I made a necessary step. I called the mom of one of Shea's little buddies at the developmental preschool who is a "typical peer" meaning he is not "special" or doesn't have an IEP. His mother was lovely and said "yes, let's get those boys together." Even though the weather has been cold, I will suggest a meet up at Ober park to play before afternoon preschool. I will spend a little bit of time telling her about Shea's challenges just so that she can ask any questions or clarify the reality for herself and her son. Then, I hope to jettison that part of the conversation and just let them be.

Visions of regular weekly play dates flit through my brain. Summer activities and Shea having a "best friend". Hold up, mommy. Gotta walk before you can run, speak before you can sing.

So, here is to finding your feet and your voice, little man.

Just adorable

Yesterday, as Molly and Shea had lunch, she commented how adorable Shea was when he made a certain face. I agreed, of course.

Shea made a darn good approximation of "adorable" with Molly prompting.

"Shea, do you even know what adorable means?" she asked.

He thought a bit and said, "cute". Indeed.

Molly was surprised that he knew what it meant. So was I and, again, I was happy and relieved that he seems to be cognitively age appropriate. Whatever that means...

We take it all as it comes. Or try to.