Wordless Wednesday ~ Bert gets the camera

Therapeutic Listening

Bert started a therapeutic listening program at school last month. I had gone to a conference in which there was an available sectional on the program, and after the conference, I asked Bert's OT about it. Since his school already had the equipment, and since it's something that I couldn't see causing harm, we got him on the program.

Now, about a month into the program, I am seeing increasing self-control. Increased ability to follow directions, and increased bodily function awareness. In other words, for Bert, therapeutic listening works.

Last spring, I was told in Bert's IEP that he may never be verbal, at all. Now he uses 2-3 word sentences consistently, and some longer sentences. He had multiple autistic symptoms, and his behavior, especially in public, was dreadful. All of this static made it very hard to see the person who is my son. As the year went by, and we he changed schools, added hours to his school day, and got on a sensory diet at home and school, he has slowly become the little boy that I'd only ever seen glimpses of. Now, with some small exceptions, that little boy is always coming through, loud and clear.

There is something downright miraculous to this transformation. It can be attributed to multiple factors and people, but really, the sum total is a miracle. This is nothing short of my heavenly father returning my prodigal son to me. I am so incredibly grateful.

The IEP

So 2 days after the Psych eval went home, the IEP/MET took place. I am delighted to say that these wonderful people working with my son see him the way I do. We discussed at length his strengths, his potential, his value. They get it. This was the most empowering and validating IEP I have ever had the privilege of attending. Praise our Great God for creating people like the ones who work with my son.

The Bell Curve

Bert had his first full psych eval done at school. This is done primarily to assess the IQ, and assist in determining placement. This is a quick explanation of the IQ bell curve. See the very bottom of the curve? That lowest percentile of people? That little tip of the bell that is <60? That is Bert. He's down in that teensy bit of bell.

I am not a delusional person. I have a pretty good grasp on the daily living and cognitive skills of my son, and I know that he functions still about at the level of a 2 year old, more or less. He turned six last week, so I have been parenting the same growing child, now 50 lbs as a 2 year old for about 4 years. We have effectively ruled out the autism aspect as instead severe Sensory Processing Disorder coupled with a very low IQ and ADHD. Honestly, I'm not convinced that the ADHD is accurate. C'mon, what kind of attention span do you expect a 2 year old with SPD to have?

Alas, it is difficult to read a report in which your child's intelligence is graphed and documented in formal language by a licensed psychologist that states your son tested low compared to his same age peers, over and over. It sucks to see a number that has been referred to as "trainably mentally impaired" or "severely mentally impaired". Though I did not relish reading it, it was like reading a story that I'd heard over and over again in spoken word. The document was newly drafted, but it was not unexpected. I was pleased with myself that I handled it as the information that it was, no big emotional breakdown required. Yet still, I can't seem to get my mind to let go of the graph of my son's IQ.

My Child's Story

OK, I found this blog carnival at In The Life of a Child, and decided to join in. However, I have 3 kids with Spec Needs, So I will write a brief overview of each, rather than a comprehensive post on one.

Bert (aka Alex) was my second child, but he introduced me to the world of Special Needs. After an emergency C-section because somehow he no longer found my womb compatible with life, Bert came into this world gentle as a lamb. His first cry was when he was 3 weeks old, I'll never forget it. Beaner stepped on his hand while he was basking in a sunny spot in the living room. I was thrilled, he cried! Bert was born with a little bonus in the 21st chromosome. Most people associate this condition, called Down syndrome, with mental retardation and the obvious facial differences that those especially blessed kiddos carry. I, instead associate this with an incredible ability to live in, and enjoy the present moment, a delight in this world, and an especially large heart.

When Bert was <2, the Chief left to check on his sister, who was in heroin withdrawal, and came home with our Rockstar (Chels). She was 13-1/2, but the size of a rather small 10 year old. She had long, scraggly hair, was pale and drawn, with haunted eyes. At the time I had no idea that she would become my daughter, but through time and experiences, she is. Her mother passes away nearly 3 years ago, leaving me to parent an orphaned teenager. Rockstar has since been diagnosed with PTSD, bipolar, and RAD. There were times in parenting her that I had resigned myself to believe that she may never be a productive citizen, that if helping her find Jesus was all I did for her, that would be enough. I am thrilled to say that by the power of the Holy Spirit, she has found Jesus, and much more. She is living abudantly, and though she doesn't always make great choices, she is learning and growing, and has blessed our family beyond measure.

The last child to enter our family is Schmoozer (Ben). In early 2006 we submitted our information to Robin Steele of the Adoption Awareness program, hoping to adopt a second child with Down syndrome. Within 3 weeks we got a call, matching us to Schmoozer's natural parents. After waiting 3-1/2 months for research and decisions to be made, and for paperwork to clear, we brought Schmoozer home from the District of Columbia. Within days, we realized 2 things: 1. that he didn't poop right at all and 2. that he didn't hear right at all. As time has gone by, we found that not only does Schmoozer have DS, but is also moderately to moderately severely hearing impaired, he has Hirschsprung's disease, he has hypothyroidism, and to top it off, he has Cyclical Vomitting Syndrome. Talk about getting more than you bargained for! Schmoozer has filled, not only our hands, but also our hearts, to capacity. Through 8 hospital admissions and more tests and proceedures that I care to remember, his delightful presence has blessed us by his will to live, his spirit, and his ability to learn, despite all the odds against him.

It has been a delight and pleasure to parent these amazing kids. I have learned so much about myself, my priorities, about my Lord and Savior, and about living in the moment from these kids. Though they have brought with them struggles beyond measure, they have blessed us far more abundantly than that!

May I add, last but not least, my Beaner (Hannah). She was my first child, but now she's not my oldest. She is totally typical, bright, precocious, gentle and sweet. She never asked for such a house full of crazy sibs, but she wouldn't change them. She is, by virtue of being the only typical child in a house of 4 kids, also a child with special needs. Of all of my amazing kids, she amazes me the most. What a blessing she is!

See No Evil, Hear No Evil

Drive your mom crazy.

If you haven't guessed, Schmoozer's vision is "extremely farsighted" putting him
"very high on the Opthalmologist's radar". No wonder the kid is busy, he gets
little input from 2 of his main senses. If you want more info on farsightedness
in kiddos, read this.

Since Beaner had nothing better to do, she decided to bring selective listening
to a high art. Hey, it works for Schmoozer, right? Well, after months of
frustration, we got her hearing tested, and she failed in the high frequencies.
Off we go to the ENT. I hear his retirement portfolio is looking great these
days!

Did I mention the ENT? Bert gets new tubes on Tuesday, and they are checking
his sinuses for obstruction (at my insistence), while he's under without
optimism of finding anything fixable .

Speaking of fixable. We have a Rockstar whose vision is nearly perfect, but has
mild nearsightedness (per the optometrist, glasses are strictly optional). With
the persistence of a teenage girl with a new accessory in sight, she insisted
that it really is troublesome, and she NEEDS glasses. She will be charged the
full cost if they are not worn nearly continuously for about 6 months.


The Chief and I can still hear and see as well as ever, thank God. Whatever happened
to the axiom that duct tape can fix anything?

It's Been a Week

The vicious icky bugs hit our house, like 3 different kinds, all in a week. First is the week long stomach ache bug, then the pukey/poopy bug, then the achy chest cold sore throat bug. Bert was the only poor soul who got all 3. Since he is still in diapers, he was quarantined to his room during the pukey/poopies, and with hand sanitizer at the bedroom door, we managed to keep that one down to one person. Everyone shared the tummy ache bug, but the Rockstar gets the award for overplaying that one during a routine physical and getting a trip to the local hospital for an ultrasound to rule out appendicitis (she's fine, a drama queen, but fine). Last but not least is the chest cold with the sore throat and achies, which Bert and I have taken the brunt of, but don't touch that dial, the chest cold is still alive and kickin' and could easily jump to anyone else in the house in a heartbeat!

Schmoozer had his BAER, and the results were 10 decibels worse than his BAER from 7 months of age. This is perplexing as supposedly conductive hearing loss should improve with age. Alas, this is where we are. On to get hearing aids.

Bert's appointment was cancelled and rescheduled for next week, but somehow I have stopped puzzling over that one, probably because I spent 3 days sleeping off a virus.

Beaner's 9th birthday came on the heels of the pukey/poopies, and while mom was in full blown chest cold with major aches and sore throat. We managed to pull off quite a day for her, though it nearly killed me. We had to cancel her slumber party to reschedule for a later date....to be determined. Grammy stepped in to save the day, and swooped in to rescue Beaner as the healthiest person in a house full of vicious icky bugs, and brought her up to Grammy's for a weekend of fun. Thank God for good Grammy's

My dear husband must get mention here for taking his 2 days off, during great steel head fishing time, and babying me and running the house. He selflessly took care of business, great and small, and kept things running smoothly while I slept on the couch. He's priceless!!!

~Edited to add: I did find out that if a child has a sinus infection, and that same child barfs stomach acid out his nose, that the stomach acid will actually kill off the nasties causing the sinus infection, thereby curing the sinus infection, not that I plan to use that method again any time soon, but it isn't worse than 20 days of penicillin~

Puzzling

My boys each have big appointments this week. Schmoozer gets his ABR, and Bert gets the results of the sleep study of that seems like it was eons ago.

On the eve of such appointments, I find myself puzzling over and over in my mind. Trying to arrange all the pieces I have in such a way that with my limited knowledge I can manage to predict the results. I have just enough pieces though, that there's a part of my brain that won't quit trying to make a valid picture from them.

It's a running monologue and it goes like this:

Ok, so during the sleep study Bert would stop breathing for what, a count of 10...I'm pretty sure that qualifies as full blown apnea...The doctor had referred to the fact that he's not really a candidate for CPAP due to his sensory issues and mentioned ENT referral for surgery depending on the results...So will his sinuses need roto-routed or does he need a hyoid bone suspension for floppy airway, or both? would he have to spend the night if he has surgery? what am I thinkin', I don't even know what his results are, they may be fully normal and I'm just going over this all for nothing, and even if I'm right or totally off the mark, it doesn't make a difference, the study shows what it shows.

or:

Last time Schmoozer had the ABR it only showed mild conductive hearing loss, is it worse this time, his behavioral audiogram is worse now than it was then, is there sensorineuro damage in the meantime, or is it still primarily conductive hearing loss? The nurse who called said he will need IV sedation, have his veins improved in the 3 month reprieve from constant poking, or is he still a hard stick? Will it be a nightmare of IV starts again leaving me feeling like a cold wet washcloth, or maybe, just maybe will the get it on the first or second...for that matter even the third or fourth try? The test adds tones that weren't in the last ABR, will they really get a good accurate picture of his hearing from this? Will the tech give me the results while we're there like last time, or will I have to wait?

It's not worry, per se. I'm sleeping fine, I don't feel anxious or upset about it. It's just running in the background, like the silly muzak in the elevator. It is just there, going on in the background, and I'm not even sure if it shuts off, and if it does shut off I don't have the switch anyway, so I just let it fade to the background most of the time, and when I'm not otherwise occupied, I play it out to the end in my head. Each time I kind of expect to come up with real answer, so solve the puzzle. Each time I end up a few pieces short, and each time I realize I cannot solve it on my own anyway. It happens every time some new test or result or referral comes along, it's just part of the elevator ride.

Even though it's in my head, I still find it odd.

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!

Thin Places

That was our sermon title today.

My ears were pricked, thinking that this was going to address times when you are stretched a bit thin. I have been in a spiritual drought for some time, and needed some encouragement. Since I feel like the taffy pulled version of Mike Teavee, I figured this was all about me. I was wrong, and right.

Let me start by saying that we listened to Kim Hill's remix/medley of Nothing but the Blood of Jesus on the way to church, and Bert was singing. That is always a gift when my not-so-verbal son belts out a serious spiritual in the back seat, so my heart was primed.

It was GEMS Sunday, so I was with my girls in the front row. I was on the piano side, and our pianist is nothing short of prodigiously gifted. It's as if he's channeling the flow of music directly from the heavens to his fingers. He can make "Twinkle, Twinkle Little Star" sound like a concerto. My heart was moved, and my spine chilled as we opened the service in songs of praise. It's been so long....

As the sermon started, I found the pulpit supply pastor to be someone who appears to be smiling, even when dead serious. His face a light of joy, his voice harmonious and full of inflection. He pulled out a less than well-used chapter from Luke 9:28, and started reading about the transfiguration.

I cannot reiterate here what all he said, but he spoke to me about the thin places. Not places where we are stretched thin, but places where the gap between earth and heaven gets so thin that the Glory of the Lord briefly spills over into our earthly experience. As the early spring sun shone through our century old stained glass windows, the gap thinned, and our heavenly father allowed me a glimpse of his glory. It was so real, such a heart-thumping experience, that I was sure the whole congregation must have had the Theophany along with me.

As the service came to a close, and the GEMS proceeded out, down the stairs, the grumbling of some of the ladies about the negligence of not using our theme verse from GEMS for the sermon (1 John 3:1) I realized that I alone had experienced that thin place. That God's glory had broken through for my benefit alone. I was humbled to realize that my Lord and Savior had seen fit to answer my feeble prayers of "I believe, Lord help my unbelief," and push through my earthly experience to touch me momentarily.

I don't know where this will go, but I do know that I drank of living water today.

GAR-DEN-ING

I am so excited for my garden this year! SO STINKIN' EXCITED!!!! I'm starting broccoli seeds this week, cabbage and celery next week, then my peppers and tomatoes. I plan to have different kinds of squash, rhubarb, lettuce and spinach, of course pumpkins and melons and a few big ole sunflowers for the kids.

Bert will be in school for most of the summer as his school is transitioning to year 'round, so that will free up so much of my time, and Beaner plans to be my garden helper.

Last year was utter chaos, so I left my garden largely untended, but this year, baby, I'm on it!

A New Spring in My Step

I knew that having my typical daughter, first son with DS, then adding a teenager and a second son with DS would not be an easy lifestyle. I knew that when my husband took a job that had him living outside of our home for 10 months, that I would be spread even thinner. Then when Schmoozer started having medical issue after issue, and Bert's behavior would not get any better, and Rockstar just kept having trouble, I started going down hill. I got tired, very tired, then exhausted, then depressed.

I am familiar with situational vs. clinical depression, and I knew that I had a severe situational depression, but never got treated. After all, how do I find time to take care of me?

Finally, with Schmoozer mostly under control and just hearing aids left in a long line of ailments, with Bert settling in and just awaiting the results of the sleep study and whatever intervention that necessitates, and with Rockstar settling in and getting ready for college, I have a wee bit of time to indulge myself. I am finally getting treated for a neck issue that I've had for years, and feel so much better. I am seeing easier days coming, and man does it feel good. My burden is lightening little by little, and it finally feels manageable.

The corner turned when I found out that we will most likely have zero out of pocket expense for Schmoozer's hearing aids. (Picture me with a giddy mom face here).

....and did I mention that the Chief and I are getting away for a night. To a resort with an indoor waterpark. :-)

I'm putting it Together

2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2

For the first time in a long time, I am hoping that things are all adding up, that we are getting somewhere, and that there is a break in my reasonably near future. Schmoozer's getting hearing aids. That is the last of the significant medical stuff we've had going on with him. We've been able to manage his Cyclical Vomiting better since we know what it is and have meds to deal with it. I can hardly believe it's been 2-1/2 months since he's been admitted to the hospital! He was admitted 8 times last year, for at least one night, and up to 10 nights.

We have Bert's sleeps study done, we have Speech lined up (waiting for the therapist to get approval from our insurance to start), he's doing well in his new school. So once we get the sleep study results and whatever treatment is required (possible surgery?), we should be sailing pretty smooth with him too.

Beaner is hanging in, but needing extra lovin'. Rockstar has an enormous Grad Party to prepare for, but that's cake.

I think I see light at the end of the tunnel, and I think I like it. What would a semi-normal family life be like?

Wordless Wendesday ~ Sleep Study With Bert

Wiggle Tooth

Wiggle tooth has been all the topic of conversation in our house of late. Seems I'm not the only one around here who is blown away by our little Mister loosing a tooth. Did I say loosing? I meant LOST! There is no more "loosing" about it. Here is our photographic catalog of the experience:


Bert graciously says "CHEESE!"


There is a tooth, a teeny tiny tooth, somewhere in the Ziploc
And, Yes, there are about a billion dishes on my counter, there always are.



Mommy is a good sport and let's Bert take one for being such a good boy!

It's the Little Things

I can be brave through IEP meetings, doctors visits, surgeries and the like, but still find myself at a total loss over something little. That something, *this time* is a loose tooth. Bert has his first loose tooth. He's 5-1/2, it's right on time. But it's not. My son is aged 5-1/2 years on this earth, but he's not a five year old, not a four year old, maybe approaching 3, but really he's pretty much a 50 pound 2 year old. I can see that on developmental tests, I can tell by the way he talks. You know, I even like it. There is something wonderful about the 2 year old mentality. But when his own body betrays him. When his development actually demands that his actual age be acknowledged, it sends me into a tailspin.

On Saturday we were hanging about in the living room. Bert was sitting by me and we were making silly faces. He started drooling, as has been happening since "wiggle tooth" first made it's presence known, and I started crying. Plus-sized, full blown crocodile tears. I had no foreknowledge that this would happen, no notion that wiggle tooth would demand this of me, but it did.

My son should be in Kindergarten. This should be a rite of passage that he anticipates with high expectations. The tooth fairy should be all the rage in our conversations. He should be wiggling his own tooth and doing his darnedest to get it out for some booty.

How on earth could a tooth have that much effect on me?

It's Not Wordless, but it is Wednesday

This picture came home from school with Bert. His class went to the mall to shop for Christmas.

Take a good look at it. Poor Santa is sitting on the mall floor with my boy, and Bert is not even sure he wants him there. This poor senior citizen had to have asked for a raise that day, as did Bert's chaperon.

Simply Amazing

This week I found out that one of the most overwhelming, horrifying events of my life has turned into a blessing.

Bert has been visiting a multidisciplinary behavioral resource center where he has gotten psych evals, PT evals, sensory evals, and stands to get OT and speech evals. For years extra speech therapy is something we've known he needs, wanted for him, but simply could not provide financially. The speech therapists at school have varied in expertise, energy level, and willingness to got he distance for him, and his current SLP is above and beyond the others he's seen. Yet it's only a bit of time each week, and with the difficulty in communication between school and home, follow through is just what I can manage to figure out.

So now, after his pysch review, we have realized that Bert's birth (as written here) is his ticket to speech therapy. Down syndrome is a developmental disability. Insurance companies won't and don't usually cover therapies for developmental disabilities. But alas, insurance companies do cover therapies for traumatic birth and hypoxia at birth, both of which Bert had. So here we are, happy to find out that indeed, we can get his speech therapy covered.

Now, enter our local Down syndrome speech guru. LK has partnered with the Down Syndrome Association of West Michigan and Talk Tools and has educated herself as a specialist of sorts in speech issues of children with Down syndrome. If you have DS in this area, she is the SLP to see. By amazing blessing, Bert has been placed on LK's schedule, and will be evaluated and treated by her, courtesy of our insurance. It is simply amazing, overwhelming. The Holy Grail has been handed to us. I am grateful beyond words.

Now, as a kicker, once again I have found the opiate of validation. You see, our psychologist realizes that kids like Bert don't *just* respond to normal or even excellent disciplinary measures. That even the most together and consistent parent cannot always manage a child like him, and that when you have a child like him you cannot always be the most together and consistent parent. We are in a marathon, not a sprint. Bert will not be sleeping through the night tonight just because I use the right interventions, Bert will not behave in public this week no matter how good of a mom I am. But someday he can and will, and now I have another partner to help us get there. Oh, Praise Jesus, we'll get there.

This is What I've Been Doing

I made Bert a Sensory Tunnel. It's supposed to resemble this one,


but we're working on coming up with handles. Rather than paying $190 + shipping, (yep, I had to pick myself up off the floor after reading that price.) I made one for about 1-1/2 hours worth of shopping and work and the cost of material. If you want one, email me aleejom@yahoo.com) and we'll see what we can do, I'm thinking of selling them for ~$40-$50. This one is 9 feet long, but the size can be adjusted, as can the color.

I also can make a weighted quilt. :-)

Ready or Not, Here it COMES

I know I've hashed this over here before, but why, oh WHY do pre-adoptive parents get so wound up in what type of child they would accept?

Checklists and questions and what if's. Drug or alcohol use by mom, physical impairment, developmental disability, race, color, creed or gender.

I understand the reasoning behind the agency's asking, but I still despise it. It further promotes an industrial feeling to adoption, and maybe I'm overstepping (but hey, it's my blog), but I really think that people may just be rejecting a chance to really see Jesus.

Since I have said it until my toenails fell of from lack of oxygenation, let me give you another example. My favorite local station is 91.3 WCSG. While listening last week, a key member of our local Down syndrome association sponsored a day, dedicated to her daughter Ruth, who turned 9 that day, and has Down syndrome. I do not have access to the exact words of the dedication, but she speaks of the lessons Ruthie has taught her, of the person that Ruthie has helped her develop into. In closing, she states, "God rescued me through you, Ruth Noel"

I cannot say it better. I was a Christian, a decent ethical person, and in desperate need of rescuing. God rescued me. Starting with Bert, then Rockstar, then Schmoozer.

Had God given me a checklist to fill out at the beginning of my pregnancy with Bert of conditions, which I could accept or decline, would I have put Down syndrome on my list? I don't rightly know, but I suspect I wouldn't have. 6 years ago, I would have told you, hands down, no way do I have the tools to parent a child like Bert. No friggin' way.

Had it been up to my own good intentions, would I ever have adopted a teenager? I know for sure, NO WAY! Not a chance, don't even think about it. I wouldn't have needed a checklist, it would have been a flat "no". Had I known that Rockstar would become ours forever, that she would grow to consider me her mom, that reconciliation would never happen, that I was in this for good, I'm not sure I would have taken her home in those early days, I'm not sure I wouldn't have pushed for her to go with her grandma, dad, or someone else. I would never have believed that I could parent her, not just house her.

I did fill our a checklist for Schmoozer. It was really pretty wide open, by then I trusted God, but would I have jumped in to try to adopt so quickly had I known just what a medical mess would follow? Would I have been so brave as to take my youngest son with full disclosure of all we have been through in this first year and a half with him?

Many people with a house full of healthy kids routinely tell me that God wouldn't give me more than I could handle. It's a cute, pat phrase, especially when you're not living it. God has given me more than I ever wanted to handle, he's given me far more than I ever wanted. He's rescued me, a thousand times over. Each and every struggle I broach with my amazing brood of kiddos brings me closer to Him. Each new voyage is to a place that my Lord and Savior has planned for me.

It is not out of spite that I get frustrated with those who say "no". I would have too. I feel sad for them. I know that God can and will and does work in each life differently, and can and will and does work in those lives too. But I just cannot help but believe that I had more blessings laid upon me than the average, simply because I did not have the chance to say "no" to them. My God has become so big, so real, so amazing to me, simply by virtue of the children in my home.

My God does not fit into any box, nor would I want him too.