When Did This Happen

I was reading on a discussion forum today and started crying. By God's grace alone I was able to respond in what I think was an upbeat manner, we'll see how people react.

The problem was language. The thread was about a potential adoption opportunity in which both of the birth parents have some form of seizure disorder or mental disability, it's hard to tell exactly.

The overall note of the thread was open, honest and good. What bothered me was that a few posters used terms like "suffer from a disability" or "Down syndrome babies".

Have you seen the photos of my boys? Are they suffering? Are they defined by a third 21st chromosome, giving them a title of Down syndrome baby.

These little stinkers amaze me so much. I think of Schmoozer. Born with 5 weeks early with Down syndrome and Hirschsprung's disease (which was not treated until he was 15 months old). Developed Hypothyroidism and has moderate to severe hearing impairment, and deals with Cyclical vomiting syndrome to boot. Yet this little man is so full of life, so ready to give each day his best, so bright and beautiful! He has so many knocks against him, yet he's out to rule the roost and live the good life.

And Bert. Again, born with Down syndrome, his sensory systems send crazy mixed signals, he has to work hard to find a word he wants to use, and even harder to get his mouth around it. But his is such an incredible little person, he brings a smile and light everywhere he goes, and digs in and gives his best, he meets each challenge he faces with eagerness and excitement.

My sons are not suffering with mental retardation. They have not been afflicted, and it doesn't define them. They are children of God. They are beautiful and incredible. My biggest wish is that the whole world could see them as I do!

Characteristics and misnomers

I'm guessing that any one of you reading this would recognize a person with Down syndrome if you ran into them at the grocery store. But would you be able to qualify those characteristics that you would recognize as Down syndrome?

The first thing you would notice is the face. Probably the slightly upslanted, almond shaped eyes, sometimes with white spots on the iris, with a fold at the inner part of the eye, by the nose. The nose would typically be rather flat and small with a wide bridge to it. Lower ears that may fold in a bit at the top. More subtle, less noticeable are some of the other characteristics. A small occiput (back of the head), a single long crease on the palm of the hand, a wide gap between the first and second toes, with a pronounced crease between. Teeth can be late, emerge in an unusual order, and be pointy. Low muscle tone, and extreme flexibility are also very common. It is also common to see only two knuckles on the pinkie, a slightly inward curved pinkie, and webbing between the last two toes. A person with DS will typically be short, average adult height is 5'2" for a male, and about 4'6" for female.

When Bert was born, one of the most difficult aspects for me was that I thought he was beautiful, but when I looked at adults and older kids with DS, I didn't think they were beautiful. As he's grown, I still think he's beautiful. His unusual features became stronger with time, but it doesn't matter. He's my son, and he's amazing. Period.

The hardest thing for me, as I go into the world with my boys, is to hear misnomers, over and over again. "They're always so happy." (where's the vomit emoticon?) Can I tell you something? My son's are not always happy. Ironically enough, they have a full range of emotions, and can feel anger, sadness, frustration, joy, calm, and any other extreme emotion you would like to name. Bert especially, with the behavioral aspect he has, is far from always happy. He has regular meltdowns of universal proportions. Schmoozer has had more than his share of sickness and discomfort, and though he copes well with it, he is often anything other than happy.

My dear mother remarks at how surprised she is that my kiddos have so much personality. She has never known other kids with DS to have such personality. I'm guessing that in the comfort of their own homes, and with people they are familiar with, the other people my mom knows with DS also have plenty of personality.

They're so strong. That one makes me laugh. One of the biggest challenges for someone with DS is low muscle tone. Most people who reference the strength of a person with DS, is thinking of a whopper hug they have gotten. If you have low tone, you can hug really tight, but don't have the fine tuning to hug in the middle, or lightly.

Affectionate? Yep, that one I have to concede. My boys are huggers, kissers and absolutely over the top affectionate, and I love it! That may not be true for all people with DS, like any other group of people, we're speaking of individuals here, and that's the beauty of it.

Karyotype

Normal karyotype




Translocation 21:21 = Bert

I would imagine that most non-scientists don't really know what a karyotype is. I didn't until it changed my life. A karyotype is a chromosomal study, used to determine if a person has a chromosomal disorder or syndrome.

Bert's karyotype is Translocation 21:21. About 3% of people with Down syndrome have this karyotype. It doesn't mean anything for Bert's development or outcome, just that his extra 21st chromosome is stuck to one of the other 21st chromosomes.

What that does mean is that either the Chief or I am likely a carrier and have a higher likelihood of having another child with translocation 21:21 Down syndrome, the geneticist gave us a 1:100 chance of having another child with DS, average for a woman of 28 years (the age I was when I had Bert) is far lower than that. Of course, that is a mute point because:

A. We are done having kids. and

B. We adopted another kid with DS, so we really weren't too distressed by the idea of another tri 21 kiddo anyway.


There is also mosaicism. That means that the person has some cells with trisomy 21 (three sets of their 21st chromosome) and some cells with the normal 23 pairs of chromosomes.

To the best of my knowledge, Schmoozer's little bit of something extra is of the standard variety, making him one of the 95% of people with DS who have the typical version of trisomy 21.

Alrighty then, I think that's about the sum of the knowledge I'm fit to impart today folks. Consider yourselves a teensy bit more aware today than you were yesterday.

Any questions will be welcomed in the comments.

It Feels Odd

Both of my boys are going through testing. One on his tummy, one for his behavior. I feel like a hypochondriac, ya know why? Because I'm hoping for bad news. "Yes, Lee, Schmoozer has XYZ disease of his stomach and small intestine." or, "Yes, Lee, Bert does have PDD-NOS."

Sounds sick and twisted, sounds like I have issues that I need mental health screening for, eh?

Try to see my perspective.

Bert has been in school for 2 years, and has made virtually zero progress. So what happens if someone slaps the word "autism" or PDD-NOS on him? He gets better services and more help. He maybe, just maybe stands to get some help this year and, what's that word I'm looking for? Oh yes, succeed this year. Wouldn't that be something. Actually having made progress from last years goals instead of writing the same IEP goals again next spring? If a label buys him this, well, so be it, I'm in!

And Schmoozer. He started barfing the other day. It was like a tornado siren went off. We all hit panic mode. No, not the hospital again, no, we can't. So if the doctor lady takes a peek into his little esophagus, stomach and duodenum next Tuesday and finds a definable, treatable problem, could I really feel bad about that? Schmoozer came out of this puk-a-rama OK, but how long till we're staying at that big, high rise hotel downtown again with 3 meals a day of sugar water with added salt and potassium, and big metal clanky cribs? How long before I'm holding him while he's barfing every 10 minutes around the clock for some unknown reason.

So yes, Mr Neuropsychologist, and Mrs. Pediatric Gastroenterologist, give me your worst. Knowledge is power, and I feel power less.

New Opiate

I have just stumbled upon a highly addictive substance. It is called validation, and it is delivered by someone seeing the difficulties your child is having, acknowledging them, and assuring you that solutions are possible, and even forthcoming.

Yesterday Bert went to a PT who specializes in Sensory Dysfunction. She played with him in such a way that she got him to exhibit the very behaviors that I find so concerning.

While no solid answers were given yesterday, there were some very affirming comments such as: "Yes, some kids with DS can and do have a dual diagnosis of autism." and: "I can see that some of his actions are very autistic behaviors."

If you're wondering why on earth I'm relieved and happy to have someone tell me that my son very likely is indeed on the autism spectrum, then it needs to be stated that he has been unsuccessful for 2 years now in his current classroom, has gone through a solid year in which we wondered if he was severely hearing impaired because of his total lack of response to anything verbal, and because I have been treading water for nearly 6 months trying to address his needs by myself, and finding that I am just not well enough educated, and don't have enough time to be an OT/PT, neurodevelopmental psychologist, ABA professional, and teacher for a child on the autism spectrum. So to have the behaviors that have been long standing named and given a proper place on an IEP with services implemented sounds like the end of a long season of treading water.


I feel as if I could jump over the moon. This PT plans to submit a report to the neurodevelopmental psychologist prior to Bert's eval with him, to fill him in on her observations. I am so hoping that very good things are forthcoming for my son.

Everything's OK

It is never good to dwell on a label for your child when said child is not near you at the time.

When Bert was born, I would leave him in the hospital and go home, and Down syndrome would loom large over my head and frighten, taunt and threaten me. I would return to the hospital and this sweet little cherub would be there without a threat in the world from things like "mental retardation" or "low muscle tone".

I returned home with Ben yesterday following his hospitalization during which Bert's upcoming evals and pending diagnosis visited me as nightmarish visions. My mind raced, and my head swam.

Then I came home, and my son ran to greet me, smiling and shouting "Bobby" (mommy). Everything's OK!

Cannot Deny It

For several months, I have been trying to get the Chief's mind around the possibility of Bert's autism. At first he patently rejected the very thought, for quite awhile. Then he mentioned a co-worker with whom he thought we should socialize. The premise of this was that this co worker's son has autism, and they face a lot of the same difficulties we do. Next came the pronouncement that said co worker's son is "just like Bert, except without the Down syndrome." Then last night, out of the blue came the announcement that, "I personally think that Bert has autism and Down syndrome." The relief I expected came. No more up hill battle at home. As the diagnosis comes, it will be accepted and dealt with by both of us, not me fighting to get my husband on board.

Then came the dread. The hand to forehead slap. The utter realization that if the Chief is bought in and on board this train, that we are headed out of the station, on the journey. I'm scared. I've known Bert's had trouble for a couple of years, but convinced myself that it was an adjustment period, a phase. That with enough strength, will power, research and tools I could get him through this, and he'd be a "normal" Down syndrome kid. I am realizing just how limited he is by his own senses and perceptions of the world. Just how limited he is by how people react to him because his social skills are absurd.

I am again grieving my child. When he was born, I grieved the loss of the child that for just a few moments after birth existed. My typical boy, named after his father and great grandfather. The football player, hunter and fisherman that his daddy always dreamed of. That grief was brief and sweet, as the baby I held was so precious.

Now my little boy, who has shaped me as a person, as a mother, as a Christian, as an advocate, though he has not changed, by virtue of the addition of a new label, will never be the boy with Down syndrome that I had envisioned. Admitting that is killing me inside. I didn't expect it to be this strange, hard and painful. My son is doubly disabled, and once again I am in new territory with new verbiage and feeling utterly lost, different and alone.

The little boy that I still hold is just as precious. Just as much a part of me, and just as much a light in my life. He's still the little guy that I pull into bed with me when he awakens early in the morning because his low muscle tone makes him feel so good to cuddle. He's still the guy who does a happy dance when we finally figure out just what it is that he's asking for. No, he hasn't changed at all, but my life has. A new label has been slapped onto me--though still tentative--"mom of autistic child"

My other labels have grown on me. Mom, mom of boy with Down syndrome, mom to my niece, mom to second boy with Down syndrome, mom to boy with Hirschsprung's. Mom to boy with autism and Down syndrome....

Wordless Wednesday-Best Buds

They are always together. From the time Ben came home, they are always together, for better or worse. This is what I had in mind for my boys, and this is what they choose!

A Few Minor Epiphanies

First, Beaner is gone. I feel like part of me is missing. I feel empty, lonely, lost and disoriented. While she's been gone, there are adoption discussions on a favorite forum about relinquishment grief, in various areas. I am sitting here feeling all sad and sorry about missing Beaner who will return tomorrow (Lord willing), and meanwhile posting alongside mommies who never get to hold their babies. My heart aches for them.

Second, I realized that if all kids with DS were like Bert, that there would not be summer picnics, holiday parties and outings for the Down syndrome associations because nobody would go. The parents wouldn't take their kids, because it would be so exhausting that it wouldn't be worth going to the party, just like it is for us. I have found an awesome forum where parents of kids with DS discuss these things. I have realized that my son is not a typical child with DS. I am so thankful that we are pursuing help. At the same time, I am thankful for the personality he has, it is a gift.

Third, talking with Rockstar yesterday, I realized that God has blessed us amazingly with harmony and unity in our family during all of the trials of the past few years. With the stress of Rockstar's mom's decline and death, the Chief's parents, Phil and Millie with their alcoholic troubles, Schmoozer coming along with his unforeseen health trouble, Bert and his behavior, and the Chief being away most of the time for 10 months, I am amazed that our family is not in shambles. God has blessed us with ties to bind us together. I am humbled, amazed and in awe of our Father in heaven who has blessed us so abundantly.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4 NIV

Coming Together

Things are coming together for both of the boys. Schmoozer is getting an upper GI series and EGD to determine how serious we need to get about his reflux that keeps on giving. Hopefully the doc will tell us that everything looks good and that a few more months of smelling of baby barf all the time is all we're in for, but at 18 months, it's only prudent to be sure there are no structual abnormalities.Bert is more complicated.

The Neurodevelopmental Pediatrician wants a sleep study done because of his erratic sleep and behavioral problems. We also are getting a psych eval and behavioral support from a local agency that our insurance pays for. This is huge, I never thought we'd be able to pay for it, out budget is stretched as it is. This is the end all for his evaluation for autism, and whether or not he is on the autistic spectrum, we will hopefully get the behavioral help we need.I don't write much on it, but Bert is a very hard little boy. If you leave the house with him you are guaranteed to come home feeling like a boiled noodle. Whether it's collapsing in the parking lot, running out the door, kicking doctors in the groin (I've learned to prevent that one) throwing anything and everything he can find on the floor (or at me or another person), or getting so overstimulated being unable to leave that he bangs his head on whoever or whatever is nearest and starts pulling my hair and ripping my glasses off. If he goes swimming he submerges himself over and over, diving and diving. He gets water in his nose, swallows it, gags and vomits, and keeps going. He will do this until he is blue and shaking. If removed at any point in the process, he throws a fit that lasts usually 45 minutes plus. The longer he swims, the longer the fit. For the longest time we thought (OK, I thought, the Chief never did) that he would grow out of it, but at 5 years old and with valiant efforts at discipline, we are still struggling with the same things as when he was 18 months. It is obvious that my son has great difficulty in society at large, especially in large, social situations where he must do anything other than whatever he wants.

At home it's better, but he doesn't actually play with toys. In my several delusional years, I bought him every toy on the market, thinking we'd find one that really got his interest. He plays with them until he figures out how they work, then they go into the toybox. The toybox is where he sits and removes all his toys, bouncing them exactly 3 times on the edge before throwing each one. Then he gets out of the toybox, and bounces each toy three times and either throws it back in, or further away. Sometimes a toy will hit Schmoozer, who likes to sit in on the show. Schmoozer then cries, sending Bert to the moon. Bert starts screaming, and we have chaos until they both happen to stop at once. For entertainment he makes sqeaking noises, like when you hold the opening of a balloon and let the air out through the stretched opining. When he bores of this he goes into the kitchen and opens every single cupboard, the fridge, the stove, anything that opens. We have secondary locks on each door, as well as childproof door knobs. If he gets a door open, he goes wherever his legs take him, whether that is up the road (fortunately a cul-de-sac with a 15 mph speed limit), to the neighbors, accross the field, or into the car. Every babysitter we have ever had has lost him and are scared to try again. The only thing that stops it is TV. TV is my respite. It is the only way to keep him happy without a mess or direct 1:1 supervision. Now you know why I'm always home;-).

Pay no attention to the boy behind the curtain. That is what he is saying as a bit of his inner self comes out. We saw that boy a lot when he was a baby, now we just see little glimpses. I try to coax him out to play, but he never comes all the way out.

If you're wondering why I adopted a second child with Down syndrome, the answer is that I just had to. I don't know why. The child in the paragraph above sounds like a burden. He's not. His hugs are delicious, his passion is contagious, his zest and zeal for life is abundant, and when he breaks through, when you see the person behind the curtain, you can't get enough of him. He's incredible, amazing, delightful. Though Schmoozer is no more like him than Beaner is like Rockstar, I knew that a second child with Down syndrome would complete our family. It is through and because of Bert that I have discovered who I am, what I am best at, what I love to do. I love to parent kids with Down syndrome, it's what I'm meant for.

School Daze

When school starts we need to get Bert transferred to another program. What program that will be, I do not know. We will have meetings, go to other schools, and reconvene his IEP.

I am excited and nervous about this at the same time. Excited that he will likely be getting more and better services, nervous because I will need to make big decisions and do a lot of advocating.

I have a Momma Bear mentality when it comes to my kids, especially the boys, and I'm afraid that if someone pushes me to do something I don't agree with that my behavior will be less than Christlike. Once all is said and done, I am optimistic that he will be better off.

He will need a psych eval by the school which should determine his level of behavior, IQ, and any additional needs. I am not so sure I am excited about finding this all out.

It's all just overwhelming right now.

Then there's Schmoozer. He will need upper GI x-rays and scope to determine if there is structural abnormality causing him to spit up every time he eats even though he is 18 month old. I need a body double to get all of this done!

My BIL and "Poopsie"

***EDITED***

OK, this is corney, but it made me laugh. We took Schmoozer to the GI doctor yesterday. She gave him a little bear as we left. The receptionist commented that the beanie baby looked like Pooh, so I checked it's name. Poopsie. The GI doctor gave Schmoozer Poopsie. HA!

Bert goes to the neurodevelopmentalist today. I want to discus if his Sensory Dysfunction puts him on the autistic spectrum or not. My hunch is that it might, but I'm far from being an expert, just a mom with fast Google fingers.

Rockstar is of to West Point to see WP graduate from boot camp. She isn't sure how she feels about him right now and hasn't been wearing her promise ring lately. I'm hoping she sees him and falls head over heels all over again. We'll see.

Beaner and I went shopping on Monday. A long overdue girls day out. We had more fun than any two people should, and she got totally spoiled. I can't think of a child that deserves it more!

Finally we are staying put. No move, no house selling. We are staying in our home county. It's official. The state has made the Chief's permanant post our home county. This is answered prayer for sure.

Schmoozer and Parker

Schmoozer is in the big house again. He is upstairs sleeping in his ugly, clanky, metal crib. He has a tummy issue again. IV, rest and cleaning him out from the booty up should do the trick again. Difficult indeed, but alas, he is OK, and will end up healthy and strong soon.

Little mister Parker is not so easily fixed. Please keep them both in your prayers. And, honestly, as I go through this, my admiration for Tammy, Parker's Mommy, grows ever deeper.

I am on the hospital computer, and don't have time to link it to this post, but why don't ya go click on Parker's link (see that cute little cartoon pic?) and see how he's doing. Send up a big old prayer for that little peanut too.

Mystery Man

Last night, Bert was marching through the living room, clapping his hands, in just the same pattern that a monkey with cymbals toy would. That in itself is not so unsual, but the fact that we could not ascertain what he was thinking, and if indeed he was immitating such a monkey is unnerving. Bert is an immitator. He will immitate others, TV shows and movies, etc. This is our unsolved mystery.

Beaner thinks showers are utterly superfluous. I have to nag her into the shower a few times/week, and often get into a negotiation battle over it. On one such occaision he referenced her upcoming trip to Virginia, to see my sister and her 6 kids. She plans to go with my mom for 1 week. She asked if she would need to shower while she was there. I told her that in order to get invited back, that indeed, several showers would be in order.

Miss Rockstar is plugging away at applying and interviewing for a job as a gymnastics coach. She would enjoy a job in that field far more than the McDonalds job she currently has, and the rewards are far more long-reaching than current job satisfaction. Thinking of future resumes and college applications, a coaching job is mint. I hope and pray that she succeeds. YIPPEE!!

Schmoozer is growing. Amazingly enough, the little peanut is growing out of the clothes he has been wearing since last fall. Hello 12 month size, and even some 18 month sizes! Three cheers for Schmoozer!

Buddy Walk

The annual fundraiser for pretty much all Down syndrome associations, both local and national, is the "Buddy Walk".

I have participated in the DSAWM picnics, conferences, library, and other services, without ever having done the Buddy Walk.

This year that is changing. I want to do my part, and raise some dime for this association that has meant so much to my family in the past 5+ years. If you feel so moved to donate even $2, $5, or $10 or, of course, more if you'd like, I can promise you that the funding will go to the Down Syndrome Association of West Michigan, and that the money will be used to educate and help families like mine in my community. Click the link on the Widget to your right if you have some spare change. If you want to know more about the DSAWM, take a click:

DSAWM Web Page

Laying of Hands and Praying Aloud

Recently I have been led to pray aloud for my kids, while holding or touching them. I don't know why this is so earth-shaking to me. People have been doing this for centuries--literally. It has not been part of my tradition. I have been raised in the Christian Reformed/Reformed tradition. While Biblically sound, this tradition is sometimes referred to as the "frozen chosen". Meaning that we have a very standard style of worship, and just don't get too overly excited about things. We treasure evangelism, discipleship, mission, fellowship, and worship. We just do it in a very traditional, sedate manner.

This has always worked well for me. I love Jesus, want to serve him and worship him with all my heart, and love him all of my days. I want to spend time with other believers, and share the love of God with those who don't yet understand it. Just don't ask me to speak in tongues or raise my hands and really belt out some rockin' tunes. Alter calls are great now and then, and special prayer requests are wonderful. Just lets not get too carried away, right?

Well, maybe....we need to make room for laying of hands in church, and maybe some healing services. Maybe we need to be less stoic when we are hurting or sick. Hmmmmm.

This comes about from the personal experience above. Bert is often up in the night. Usually at least once a night, often 2-3 times. I have started taking this as a call to prayer. I place my hands on him, or hold him in bed, and pray for him, and whatever needs come to mind. Bert often experiences speech and behavioral problems, which are the result of Down syndrome, and his accompanying Sensory Processing Disorder, and I often pray especially for these difficulties.

Why do I bring this up? Because God has blessed this. I have branched out to praying in this manner for my other kids too. It is not as evident, in the other kids as it is in Bert, but I know they are blessed by it, and I am too.` After all, in the armour of God, the weapon is the Spirit, which is the WORD of God. Praying scripture over my children aloud is the sword, the weapon, in spiritual warfare. By goodness, I'm gonna use it.

Mother Lode

I hope this comes off well. My heart is in the right place, I promise you. You see, I feel like I found a gold mine, and I want others to find it too.

When a mother lode of gold is struck, it's not instant riches on the spot. It is dirty, grueling work for years to get all that gold out of the ground. It's worth it though, so obviously worth it. The gold doesn't just pop out of the ground at you, right?

Having a child is like mining gold, I'm sure you can relate to that if you have children. Having a disabled child is like hitting the motherlode, a deep, well-hidden mother lode.

I know this from much experience. I have 4 kids, only one is typical. Two have Down syndrome, and the other I inherited as a teenager.

I loved reading the book, "Expecting Adam". Martha Beck makes no bones about the fact that carrying and bearing a child with Down syndrome was the most brutally hard thing she has ever done. She also makes it obvious that after she had him, she lived the most abundant blessing she could ever imagine. Toward the end of the book, Martha says (and I paraphrase here, I cannot find my copy) that now when her friends and loved ones are going through times of overwhelming pain and difficulty, she smiles inwardly. She smiles because she knows from experience that when you go through those times, that you are coming to a place where you will know blessing like you could never imagine.

One of my favorite pastimes is posting on a discussion forum that is populated primarily by Christian women involved in adoption. Recently, a question came up about accepting or declining a placement of a child with medical problems. I would say that >75% of the posters lean more toward declining many problems than toward accepting. Most have valid reasons. I don't blame them, before I had Bert, I would have done the same in their shoes.

Now, this is where it gets tricky. I don't think that parenting a special needs child is a recipe for a blessed life for anyone who happens into that life. I personally know some parents who are bitter and struggling, throughout their child's life. I know that Schmoozer's mom and dad truly did not feel up to the task of parenting a child with such lifelong needs. I fully accept that and harbor no blame of hard feelings about it. In fact I would never, ever want a disabled child with parents who really don't believe they have the wherewith all to parent that child, or who just simply don't have the means to do so.

But I do feel a bit sad about it. Nope I wouldn't have seen how God could bring me more joy, more fullness of life than I ever knew was possible through children who challenge me physically, emotionally, financially and spiritually. Nope I wouldn't have believed we could provide for them financially. I wouldn't have seen how God could put his servants into our lives to show us Jesus in profound ways, and touch us through our children's needs, and the needs we have because of our children. Nope I wouldn't have believed it if someone had told me. I wouldn't have thought it possible for me to be blessed like that by having a child (children) that demanded so much of our family. I wouldn't believe that our marriage would become more stronger, more real, more vital, more rich and vibrant. I wouldn't have believed all the things I now know to be true, beyond any shadow of a doubt.

Ya know what. I'm glad I didn't have a form to fill out. I'm glad I didn't have a chance to decline the hidden gift that was my son's disability, I probably would have. You see, the mother lode was covered by dirt and rock. But it's there. Every one of my kids is a mother lode. Pure gold.

This Morning

As is our daily habit, when Bert woke up this morning, I carried him back to my bed with me. This started back in the days when he was up before the crack of dawn and I would pray for him to go back to sleep. Now it continues because with his low tone and flexible joints he is the best cuddler around.

Anywho, Bert didn't fall back to sleep this morning which is fine cuz he slept till 6:45. So we are snuggling in bed and he starts rubbing his index finger over my face. He pauses for awhile, then does it again. My eyes were closed, and when I opened them to determine the cause of this peculiar behavior, I saw that he was picking his nose (into his 4th week of the cold from h***) and rubbing his boogers on my cheeks until they came off his fingers.

We are starting cloth diapers on Schmoozer. He has been pooping 6-12x daily since his surgery, and I just can't afford that many disposables. I have meant to do it for a long time, but needed this push to get me over the cusp. I got some great advice from an online friend, so hopefully it will be smooth sailing. What I didn't expect is the bulk. The kid looks like a tank with them on.

Cheesehead had Senior pics done yesterday. It was so fun and she looked awesome. I can't wait till we get the proof book.

I found out yesterday that the girls next door find it entertaining to run away from Bert. They will call him over and then run away, giggling. I can see how it happens, he doesn't cry, can't tattle tale, and falls for it every time. Yep, I can see how it happens, but it still hurts. I called their mom while very calm and after prayer. I just told her what was happening and that I know she would never allow that if she knew, and asked if she would discuss it with the girls. I think she was very receptive. The Chief blew a nut. He said those girls shouldn't be allowed in our yard anymore. I have to admit that my momma bear instincts agree, but we must help others understand and accept him, or ultimately he looses, and we all loose. We have a great opportunity to help others learn about disabilities, we just need to keep our own hurt and anger at bay in order to get optimal reception.

Beaner is the most delightful girl on the planet, I'm sure of it. Yesterday at our church's summer program, they decorated crosses with stones. She very carefully arranged her stones, and was very pleased with her results. When she went to retrieve it at the end of the day from the drying table, it was gone. Another Beaner had mistakenly taken it. There was the other Beaner's cross, left on the table. Not very carefully done. Beaner cried. Now for the record, she endo-ed on her bike and scraped/cut her chin, scraped her leg, and bruised her pubic bone, and hardly shed a tear, but she was just so disappointed by the loss of her cross. A lovely friend gave her a new cross and stones to redo, but it just isn't the same. Phooey.

What's that you said?

You may remember that after a meeting in May I came home downhearted because Bert's speech therapist told me that he just might never really talk.

I took it very hard. He said his first word at 12-1/2 months, and said 100 words at age 3. Then his language just dropped off the map. He started school and flipped his lid, had behavior problems, and stopped talking. I believed it was the frequent ear infections he had because he was exposed to so much at school. I believed anything other than that he couldn't. But after 2 years of total struggle, never returning to even 1/2 of the 100 words he said at age 3, I was giving up. Then the SLP said what I had dreaded hearing. We needed to look into alternative communication because he may never really talk. I had already gotten the PECS system going at home, and we used signs, but he really wasn't getting it.

So here we are, start of summer, and thinking of a son who would have very limited function in the real world. I cried through the meeting, and went home sick and sad.

Then I stopped pouting and decided she's wrong. I started praying vehemently, and working harder again. Guess what. Bert can now say a 4 word sentence. Seriously. Only one, but he can do it. The sentence is "I want ______, please." He has 5 different words that he appropriately places into the blank. Now we are building vocab, he repeats nearly everything any of us says, and is really learning again.

So, those of you who are giving up, being told to give up, or just feeling weary, listen up. Keep praying, keep hoping, keep trying. You never know where your corner is. It may never come, I make no promises, but if you really believe in what you are hoping for, you never, ever know when your break is coming.

I would love comments about your personal testimonies of breakthroughs.

Buscapades

When our second child was born with a disability, as I've mentioned before, we made peace with that fact quite quickly, what we haven't made peace with is him facing the world. So far sending him into the world without us has been the most challenging part of our journey with Down syndrome. Today we had another reason to feel threatened.

Bert's afternoon bus driver, Abby, is of grandmother age, and is rather indulgent of my son. So rather than fight with him when he started wanting to sit in other kid's seats, she allowed him to choose his spot. It has become a habit. Whichever kid is missing that day, Bert chooses his or her spot. They are all in car seats, so it makes little difference.

This afternoon, Bert had a substitute bus driver, one who had never driven the route before. The regular bus driver left pages of notes about where each child lives, etc. So when the bus arrived today and this harried, frantic woman asked if this little boy was my kid, I was a bit alarmed. Evidently, she had tried to drop him off at the house of the child whose seat he had chosen today. Bert showed some emotional distress, enough so that she knew he did not belong there, and she proceeded through the rest of the route trying to find his house. Which obviously, she did.

I spent the rest of the afternoon horrified, running "what if's" through my head, none of them pretty. His principal promised to implement safe guards after realizing that had this incident gone differently it could have left a child in jeopardy and become the media event of the weekend. She acknowledged that her worst fear in governing the school is that preschool route and the potential for mishaps there.

Once again we are questioning the wisdom of sending our son into the world alone. Once again we are uncertain how to balance his need for independence with his need for supervision. Once again we are questioning how to navigate this path and where to go from here.