On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Thursday, July 29, 2010

RADs mimics everything

I know this inherently, that RADs mimics everything. That some RADishes are diagnosed out the wazoo with mental health and developmental delay concerns. Sissy is one of them. I know that some times, when RADs is tackled head on, those other diagnoses just disappear because it was all the RADs in the first place.

But sometimes, it's not just the RADs you're dealing with and thus begins the game - do I treat the RADs or do I treat the other diagnoses? Just how do I respond to my child, anyway?

If your ultimate goal is healing by first making your child safe in the home, treat the other diagnoses medically and therapeutically, letting the RADs issue become just a component to your child's issues that you learn to therapeutically parent.

I understand that this is not everyone's accepted approach and that I may have just stuck my neck out for a lynching by making that statement. I readily accept that the tried and true RAD techniques fully embrace the fact that if you tackle RADs head on, it'll turn out that your child's DSM list of issues are nonexistent. But this momma is sitting on the other side of the fence and the grass is pretty green over here.

Every child and scenario is different and ultimately, you know your child best but let me tell you how things have gone for us. We tried EVERY, and I do mean E.V.E.R.Y. psychologically recommended approach to address Sissy's issues. 8.5 years of it. We also burned through a whole lot of meds trying to find some that would help. We just kept spinning our wheels, getting more and more frustrated with our lack of progress and Sissy's escalating rage and violence. Finally, last summer, the pdoc said, "Well, the only other thing you have left to try is RAD therapy. If that doesn't work, you may have to give her up."

That's harsh! HARSH COLD TRUTH! So we dove headlong into RAD therapy and discovered it was WAY more than we were prepared for. Just attempting the approaches casually and carefully made Sissy suicidal with homicidal rage and she won a ticket to RTC where they fully endorsed the resperidal medication regime.

RTC never got her on a stable med cocktail but with so many other dramatically severe children in comparison to her issues, I don't think the staff noticed she was still very wobbly in her moods and psychoses. After 100 days, she won a ticket home and continued to escalate. We were no closer to attachment than we were before her placement and it's safe to say, it was a few steps backward.

Then some time mid April, when I'd had enough of the crisis, I embraced a nugget of wisdom, largely due to the incredible wisdom of some of the amazing RAD moms I've met in the blogosphere. This nugget of wisdom was to address the medication issue and to not rest until Sissy was stable. THEN we would be able to see what Sissy's real issues were and tackle them therapeutically. Well, I'd tried everything else with no success so I embraced this new notion and begged for more meds.

It's been one month since Sissy has raged. One month since I've observed her 15-day cycle. One month since we've had to call the crisis team for intervention. It has been the best month of Sissy's life and that's not an exaggeration.

I'm not saying her issues are gone. They're not. But true to the wisdom I garnered, I have a much clearer picture of her needs. I used to cry myself to sleep at night not knowing if Sissy's issues were deliberate defiance or if she was legitimately impaired. I no longer wonder. Nearly all of Sissy's issues are legitimate impairment.

Some days Sissy acts like she's mentally retarded. Some days she acts like she's autistic. Some days she acts like she's five and other days we'll get the rare cognitive and lucid comments that can't be anything other than "normal 10 year old". So yes, RADs mimics everything. None of her diagnoses support any of those behaviors and yet she does them. But here's the kicker, it doesn't bother me anymore because I know it's not deliberate defiance. And on the occasions when her issue is strictly a RAD issue, I can spot it a mile away and address it therapeutically in a productive manner. The result? Sissy is attaching. She's been my daughter for 9.5 years and she's finally attaching. Ya'll, 9.5 years is a VERY LONG TIME to wait for success - do not give up!!!!

I'm not going to tell you that she is no longer narcissistic, self-indulging, hoarding, resistant to hygiene or blatantly defiant while feigning ignorance. But I can tell you that she seeks affection in appropriate ways about 90% of the time now. If I took her RADQ today, I'd probably only score half of them. A year ago, we scored her for all but two (fire starting and killing animals, but since she's killed her fish recently ... lol)

Today was a classic example of RADs mimicking a diagnoses in which she and I engaged in physical touch that did not repulse her.

My friend's son is a late teen who is severely autistic. We spend a lot of time with them and most of that time is in a pool. This young man likes to be "in the deep" where he stays under water most of the time. But when he's submerged, he'll swim toward us and reach out and touch us, a physical thing he doesn't do nearly as often when he's out of the water. Bob, dip, touch, laugh, bob. This is his routine. Sissy has watched him and picked up on his behavior. Now when I'm in the pool with her, she does exactly the same thing. She swims in the deep with me and underwater, touches my feet, my shoulders, my arm. She caresses me, hugs me, and asks to be held or touched back. We don't talk, she just touches. Today she gave me a two minute back massage, all while she was underwater using her snorkel to breathe. Wow. WOW! That was amazing.

Clearly Sissy isn't autistic, neither is she non verbal or cognitively impaired. But by letting her mimic those behaviors, we've been able to do some pretty significant RAD therapy unobtrusively. Read - no paybacks.

I'm not a psychologist, therapist, psychiatrist or RAD guru but I can testify that medicating the psychologically diagnosable mental health and developmental delay issues makes it possible to begin useful RAD therapy that has far reaching results with very few negative affects. Yes, some of the other diagnoses on Sissy's list are legitimate health issues and many of them are just the RADs but I'm no longer concerned about it. My ultimate goal for Sissy no matter how we get there, is healing in whatever capacity that is for her. I hope you can find your path too. I hope our experience lends a helping hand.

quilt pictures

no RAD talk today, just pictures. This is the spontaneous project I've been working on the past week. My intentions are to make a hanging wall quilt for every month to display in our dining area. This project is "August". The fabric quarters were in a jelly roll I purchased from Hobby Lobby. The green is a slightly darker shade than the walls.

The sandwiched quilt panel

The 16 piece 4-square block is "Jewel Box"
I'm disappointed with the points of my half-square triangles. I didn't fussy cut them on the bias so the fabric stretched and shifted making it impossible to stitch through the points. I had to pin them to force them to match the size of the four-patches which meant some of them puckered and gathered. ugh.

When the blocks are sewn together without posts and sashes, the Jewel Box block is missed and instead the eye focuses on the unintentional star pattern that emerges.

This accidental star block can be avoided by altering the dominant color scheme or by adding posts and sashes - I just like the mosaic look of this better and the visual variety. If you continue to look at the panel, your eye trains on many different emerging patterns.

I'm still deciding but I think I will stitch in the ditches and then put a floral pattern in the blue 4-squares and half-square triangles.

Tuesday, July 27, 2010

wireless for five days

I didn't do it on purpose. Halfway through I didn't say, "oh, this is good, I always needed a break from the webosphere." And even this morning when I woke up and got the kids ready so I could leave for respite I didn't say, "and now I will break my wireless silence."

Nope. I just didn't get to it. I think my laptop bag actually gathered some dust!

In five days we have:
- done therapy, therapy and therapy
- doctor appointment
- med change for AB (upped his resperidal and added back the trazadone)
- we beached it for a day with my friends that have a challenged son - strength in numbers - and ate at The Crab Shack (AB LOVED the exotic birds!)
- I assisted in WG's sunday school class
- we swam at the Y water park
- we bid farewell to the back yard pool that breathed it's last
- I quilted (pictures to come on the morrow)
- we made a trip to Hobby Lobby to get more fabric for quilting and got kid crafts instead because it's too hot to play outside (111'F with heat index) and ended up on the christian radio station doing a 20 second promo for a Christmas in July event
- WG had a playdate and her first non-family sleep over (turns out my tomboy is a Diva - she packed "extra clothes in case I can't decide what to wear" ROFL!)
- Sissy and I had "the talk" and a mother-daughter outing [1]

I don't think going wireless had anything to do with this busy schedule, we were too busy for me to think about getting on the computer. And since Sissy is doing well for the moment and AB has quite happily embraced life on resperidal, I've been able to breathe and live.

Hamlet says, "To sleep perchance to dream"
I say, "To breathe perchance to live!"

And the living isn't done. My MIL has purchased a timeshare so this weekend we wrap up the summer with a stay in our own condo for four days. All of The Dad's family will be there but we'll have a locked door and amenities to take it as we can. This is gold. If we had to be "in the mix" the whole four days, we'd have to beg off but the option to just stay in with all the necessary family accoutrement at our immediate disposal means we can do what works for us. But with both kids finally functional on their meds, we can breathe ... and live.

I wish I had known this time last year, that it would be medication that made my children stable. I wish I had known to push the doctors harder to go straight for the big guns. I wish I hadn't been afraid to dose these meds, afraid it would harm my children. I wish I had known about IFI services and how to get the CBAY waiver without requiring an RTC placement. I wish I had been blogging with RAD moms so I knew about some of the wonderful therapeutic parenting approaches people use. I wish I had been more desperate last year to live and not just breathe. It might have been the impetus for change sooner. It might have prevented Sissy's stay at RTC.

Hindsight is 20/20 and it doesn't serve to beat myself up for that which I could not predict or know. So I move forward from here. I'm gluten free for five weeks and feeling great, I've even lost a few pounds. I can't say it's all the gluten that has made me feel like I'm 20 again. It might be that I haven't had to manage a crisis for several weeks. It might be that I'm eagerly engaging in my quilting addiction. It might be that I finally have time to take care of me and that I'm getting the chance to look above the fray and enjoy my life for a moment.

I know school starts soon and that it will be one more transition. I know that it will mean Sissy will escalate to crisis and will need to begin employing all the coping skills and therapeutic approaches for stress that she's learned this summer. And I know she'll refuse to and be a major butt head. We had "the talk" because it's on the horizon, in about six months Sissy's stable meds will be challenged by her cycling hormones. I know that the school will be calling me at least twice a week because AB is under a desk refusing to do his math. I know that the kids returning to school means I return to work with The Dad. But I will have learned how to live and not just breathe so I know I will weather the approaching storms with more confidence than before.

I'm still walking on egg shells, anxiously anticipating a full-scale crisis but that will fade with time. Each day we live without crisis is one day closer for me to be a functional woman again. The air is clean, my head is clear and I feel like I can take on the world, well, at least my state. It feels like a new chapter in life.

Maybe we should adopt again?

[1]Mother-daughter outing with Sissy: Holy Cow! I can't believe we've gotten to a place where we could do this and BE SUCCESSFUL! We were still giggly and enjoying each other's company when we got home. She picked out a new pair of flip flops, a pink, glittery princess crown and a glow-stick magic wand. At 10 and entering fifth grade, I was hoping for something more substantial. She looked like an overgrown five year old. But who cares? She was happy. My IRL friend said to me, "well, it could be worse, she could want to do more grown up things too soon." TRUE! That is gold wisdom. I'm going to tuck that nugget in my back pocket so the next time Sissy tells me she wants to watch The Backyardigans I won't cringe.

RE: "the talk" Sissy interrupted me halfway through and said, "But mom. What if I decide I don't want to have kids. Cause I don't."

"Well, Sissy. Your body doesn't care what you decide to do. It will still get ready for a baby every month and you'll still get a period when you don't get pregnant."



Wednesday, July 21, 2010

God is Great, Beer is Good and People are Crazy

After my freight train of mental doom, I had a meeting. When the CBAY [1] meeting ended in record time and I looked at my day planner and saw that there were no therapists coming and the thermostat in the house said 86'F, I said, "NO. No, no and no. i can't, I won't, I am neither physically nor mentally capable of staying in this house or this town or this county for one more second."

So without voting in the primary, i literally, threw the kids' things into an enormous Marshall's Reusable Shopping bag, hauled the pillows in the back of the van (really, I heaved those suckers) and booked it to the country. Supper in grandma's new home town, a walk in the cute little park where we saw a tree which must be at least 150 years old.

We saw lots of large, sweeping, green vistas:

Then we went home to grandma's AC and a cup of coffee to top off the day while, due to some small miracle, the satellite TV had "Honey I Blew Up the Kid", a movie AB has been begging to see for weeks on end. Really? It was on? Exactly when I turned on the TV?

We woke up early, the kids ate grandma's krispy kreme donuts, I ate a rice cake and drank her coffee and we drove home in time for the story time at the library. The trip home was more John Deere tractors. WG LOVES them. And I do mean, LOVES THEM.[2]

We saw giant irrigation sprinklers watering the endless miles of cotton, corn, soy and peanut.

Then the abrupt changes in landscape to pecan groves followed by wandering cattle on the next hill. (I do believe I'm giving away my location with these descriptions)

In the country, there isn't much to listen to except gospel and country. WG said, "*sigh* Mom. Really? Is that all there is to listen to?" as I mashed the scan button on the radio and it scrolled through the available signals.

"Well, WG, this IS the country. So...yeah."

AB was sleeping (FINALLY!) and Sissy had her mp3 player so WG and I agreed to stop the scan button when the song "People are Crazy" came on. How fitting!

I feel much better.

[1]CBAY - community based alternatives for youth: a federal stimulus act grant funded waiver for children that have returned home from RTC. The grant is originally a Maryland legislative idea and is now available in some format in 14 states. This grant has made possible for our family - respite, increased unskilled wrap around services, adaptive swim therapy, and social/recreational activities for Sissy

[2]we joke and say that WG is going to bring home our future son in law and he's going to be a good 'ol farm boy, with a pick up truck on monster tires, several rifles and fishing poles and a habit of spitting out his boiled peanut shells on the ground. Their dates are going to be mud bogging, hunting and driving through the fields on a john deere. For her engagement gift, she'll get a new pair of cowgirl boots and a stetson. I wont be surprised if it's not far from the truth!

Tuesday, July 20, 2010

Freight train of mental doom

Every summer I have a to-do list of home projects that need to be attended to.  I usually get them all accomplished with gusto and flair.  Not so much this summer.

With Sissy's and AB's therapy, I hardly have time to think.  I usually get to the end of a day, having successfully gotten them all off to bed, I usually flop in the recliner, mentally exhausted.  I hate mental exhaustion.  I would trade it for physical exhaustion in a skinny minute.  Being mentally tired seems so fruitless but with physical exhaustion, at the end of a hard day of work, I can reflect on my day with pride, having accomplished something worth while.

It goes without saying then, that all of my unfinished summer projects that are labors of love are being averted because the children's needs demand my brain time and I feel like I have nothing to show for my efforts.  There is no finished product, it does not feel like I'm accomplishing anything and I'm silently beating myself up for not finishing the list of projects I intended to get to.  I've spent two months of summer vacation doing therapy, therapy, therapy, doctor appointments, med adjustments, therapy, therapy, therapy.  I have only two weeks left of summer before we get back to the grind and all I want to do is cry.  We've not had one vacation, we've not had unlimited fun without a schedule to bend ourselves around, I've not had the physical energy to do anything because I'm mentally and emotionally drained.  In short, I'm done.  My summer's done and so am I.

Now the issue becomes how to restart another school year without having recharged my batteries, with unfinished projects still unfinished, with my mental energy gone. I was reading a book about a woman that devoted her life to science, spending 30 years on her work proving that animal brains are more sophisticated than previously thought. She has done it all joyfully. She has gained world recognition and praise for her work.

If I felt like my life work really was indeed being a parent, if I could OWN that, I'd be able to do this all joyfully. Mental or physical energy, it wouldn't matter, I'd be doing my "life work". But honestly? I can't say that. I'm always pining for what hasn't happened, what I haven't achieved. I'm always flopping into my recliner at the end of another mentally grueling day, melancholic and lethargic, my head aching from all the preplanning and prethinking to prevent AB and Sissy from tearing themselves apart. It's not rewarding to start each day dealing with a Sissy issue. It's not joyous to end each day with AB STILL not sleeping. It's exhausting to try to find the silver lining and a moment of happiness and laughter despite the circumstances. And all of this knowing there will never be any accolades, publications, conferences, or world renowned recognition. I'm just a mother, no one recognizes mothers, especially when after all is said and done, they grow up to be adults that make foul choices despite all the days of mental energy.

This isn't fun for me. Once again I've allowed my life to meander and take it's own course instead of trying to navigate. Once again I'm unhappy with the place I am in. Once again I've blown an entire summer trying to prevent escalation to crisis with my children. Once again I've put my well being at the bottom of the totem pole. Once again I've forgotten that I'm a cool broad that has things to offer this world and that my children are only part of that offering. Once again, I'll end a summer less prepared for the pending school year than I was the year before. Once again, I'll go into another school year anticipating crisis, tears and gnashing of teeth. Once again I'll be counting the days toward something "fun" for me instead of enjoying the here and now.

Someone please tell me how to get off this ridiculously nauseating freight train of mental doom!

Sunday, July 18, 2010

Extreme Home Thankfulness

Front of the pillow sham

back of the pillow sham

I have finally finished one! I started hand quilting the second pillow sham last night. I'm glad to be back at my favorite past time without interruption. Fortunately, the pillow shams were small projects that I could take with me anywhere. I'm not sure what I'm going to do about the king size quilt, that is definitely too much to drag around with me!

If you had told me ten years ago that I would be blogging about my preteen daughter using withholding her poo as a way to control me, I would have choked. But sure enough, Sissy has been refusing to eliminate. 17 grams of Miralax daily and unlimited fruits and vegetables was insufficient. We got out the big guns yesterday - ex lax chocolate chews. Sissy lost the battle of control this morning. The next step was going to be a trip to the doctor and a request of an enema. Sissy held it all in for eight days. Eight days! That is a seriously strong will, let me tell you.

AB is doing better, thanks to resperidal. Only now he's back to not sleeping. Pbft. He's a tough one to medicate.

I've been out of words lately, just plodding through the days, one at a time. School is on the horizon, which just makes me shake my head. Tomorrow begins my fourth week of gluten free eating and I'm happy to report that I'm finally beginning to feel better.  The joint pain in my fingers is pretty bad but I only have all the quilting to blame.

We're all sitting here in our living room, 16x20, 1/3 of which is my daughter's bedroom because she's not safe and we're watching Extreme Home Makeover. One of the ladies in Sunday School joked today that we should apply. I said that we're not desperate enough, that The Dad would have to be a double amputee, I'd have to have cancer, a fire would have had to destroy our home and in the process of rebuilding, the home would have been flooded leaving mildew and mold every where. THEN, we'd qualify. Having two impaired, severely mentally and emotionally challenged kids while we live in our 1200 square foot home simply isn't bad enough. It feels bad, but if we can all sit in the living room together and watch a TV program in peace for one hour after I've finished a quilting project, then it can't be that bad.

Life always gives us a reason to rejoice. Not being able to qualify for Extreme Home Makeover because our life isn't desperate enough is definitely something to be thankful about.

Thursday, July 15, 2010

Crisis Averted

As promised, Aspie Boy's new AFO's and orthotic shoes

It's been a tough summer for AB. I've alluded to it once or twice but never been very specific. It began HERE, Here and Here. And then I mentioned it again in June when his doctor added mood disorder to his list of diagnoses.

Well, AB has gotten much worse. He really hasn't had a happy summer at all. It's been rather difficult to manage him and he is only escalating.  He's not been sleeping well either despite one of his medications that was supposed to help him sleep.  His doctor called in Ambien which the therapist, the pharmacist and I all said, "uh, no.  not for a 9 year old." So he went to bed with no sleeping aid.  Which meant yesterday, after 4 hours of screaming, the therapist was ready to say he needed a hospitalization to stabilize his meds. The Dad and I were against it, certain that environment would make AB worse because of his sensory issues.  But the doctor proceeded to call to see if he could be placed based upon the three-way conversation between me (with the therapist chiming in while I was on the phone), the nurse and the physician.

Crisis averted. AB didn't fit the criteria for placement because he's not hurting himself or others. He's been hell to live with, but he's not hurting anything. After a teary conversation with his doctor (who is out of town and was calling me from her cell phone), he's on resperidal.

Is he better? Too soon to tell but he wasn't screaming today. His therapist was back this morning and is going to do an emergency request to step up his case from CSI to IFI.  We are also hoping to get him an emergency appointment with the contracted psychiatrist [1] with the therapy team since AB's doctor is a developmental delay specialist and is not as well versed in the meds and their interactions. Thank goodness, yesterday and today we got respite.

I can't begin to tell you how frazzled my nerves are. Really, this is just insanity, I can't keep my head on straight. I knew this was going to be a hard summer but wow. This is too much.

Sorry for a bummer post but honestly, after these weeks of escalation with AB just as Sissy has been getting better, my ears are ringing and my head is swimmy and all I really want to do is cry. Instead I bring you, recycling:

We've been recycling faithfully for a year now. Our county has an excellent recycling center. This is four weeks of recycling in the van, today's load ready to go. I can't believe how much recycling has reduced our weekly trash. It has honestly saved us money because before we began to recycle, I was about to call the trash company to increase our number of weekly pick ups. Now, our bin is rarely full every week when we roll it to the curb.

There now, recycling is MUCH better than crying, don't you think?

[1] AB hasn't been referred to a psychiatrist because up until this past spring, he hasn't needed much in medication.  Now that mood disorder is on his chart, it is obvious he needs psychiatric care but the problem is, the private physician Sissy sees has a very long waiting list and AB's needs are immediate and dire.  As long as AB is a client of the therapy team, he can be treated by their psychiatrist.  What we do after he is discharged is anybody's guess.  Our community only has two pediatric psychiatrists in private practice.  time to dial through the phone book and be prepared to travel for monthly appointments?  Maybe.

Tuesday, July 13, 2010

The Toll: what the unchallenged siblings endure

First, welcome La Mama Loca, my 50th follower!

Second, in regards to this post about Sissy's fish I am reluctant and admittedly bemused to inform you that Sissy poured him down the drain, again. And true to my warning after the second rescue and again on Sunday when, after 6 weeks, she decided the ick-infested fish needed fresh water to swim in, I did NOT rescue it a third time. Truly, our RADishes just can't be pet owners, not even of tiny little fish.

Please, don't let Felix the Fish die in vain. Let it serve as a reminder and warning when you decide if your RADish is ready to have the responsibility of a pet. If s/he is not ready, it WILL become a thorn in your side as you determine at what point you feel compelled to either intervene because the animal suffers inhumanely or if you should let nature (and your ill-equipped RADish) take its own course. Yes, in retrospect it is amusing that the fish met his final demise, and we are all, including Sissy, relieved to have the issue resolved but it just makes me so sad that the poor thing had to suffer so Sissy could learn. I really want to write a nasty letter to the RTC that sent the dern thing home but since we were asked if we'd be willing to let her keep it, I feel culpable to a small degree. Hindsight is ALWAYS 20/20.

OK, now to the point of the post.

The main reason we sent WG off for a week to her Grandma-in-the-country, was because we knew it would be calm, quiet and with no other small children to vie for attention, WG would be doted on. In our minds, no one in our household deserves respite more than her. She has been through SO much for such a little girl, we just wanted her to have a week in which only her needs were catered to, all without the nonsense from Sissy and AB to muck it up. My MIL and SIL (who lives across the street now since Grandma has recently moved) were equal to the task and gave WG exactly the type of respite I hoped she'd get.

We would chat with WG on the phone and she sounded so relaxed, confident and happy. Her appetite was up, she was sleeping without nightmares, she was behaving well and was resilient to changes in plans. In short, she was everything I know her to be but what she is obstructed from being at home because AB and Sissy consume. The two of them are like the death eaters from Harry Potter, they just suck the life out of everything. MAJOR suckage.

While WG was away, Sissy asked me when she'd be allowed back in the bedroom with WG. I thought for a minute, took a deep breath and dived in. No point in beating about the bush, only truth sets us free. I started by talking to Sissy about how hard this year has been for her as she's had to face her illnesses and struggle to get better. Then I told Sissy that it's been hard for the rest of us too at which point Sissy interrupted me and said, "because I've been so bad and angry."

I acknowledged that this was true but that we were all very happy that she's been working so hard and has been so much better. I went further. "Sissy, it's been VERY hard for you sister too, watching you go through all of this ..." and Sissy interrupted me again.

"And because I hurt her and I'm mean to her." I nodded my head. I told her that it's all been very scary and that because WG is so little, it's been REALLY scary for her. We talked about how after all of that, WG was then bit by the dog and how WG has nightmares and is angry too.

I took another deep breath and with some trepidation added, "WG is at Grandma's this week so she can get a break from all of this." Sissy nodded her head. I went on to say, "It's just like you getting a break from us by going to camp." More head nodding.

"So," Sissy hedged after thinking a bit, "when can we be in a room together again? I liked it."

"Sissy, that's not something we can do right now. Both you and WG aren't better yet." In my mind I thought I don't know if it will EVER be possible, I WANT It to be, but that is probably unrealistic. Sissy mulled over these words for a bit. So I added just a smidgen more, "Besides, I know you like having your own space, and it's kind of pretty, isn't it?" She nodded her head. "And since you've been learning so much in therapy about taking a cool down time, if you and WG shared a room, where would you go to be by yourself? You've been doing such a good job with that! I don't want to take that away."

On that note, I decided to redirect the conversation because I wanted to end it positively and not go over board so that I got backlash. Instead, I started talking about how big families don't have a choice, that in those situations, the bedrooms only have beds and dressers and all the toys are in a play room. I let Sissy fantasize about what a house like that would be like and we concluded the conversation with a giggle about how silly it would be if AB had to bunk with the girls in a triple-decked bunk so we could put all the toys in AB's room. Crisis averted, at least until WG came home.

Yesterday's transition went horribly. I ended up calling the crisis team on AB, AB and Sissy both pulled chores from the chore tub and had mandatory cool down times, I found myself physically planting myself between them and WG to protect her and by the time the day was done, Sissy was still vying for control, AB had screamed himself out and WG was bawling to go back to Grandma's so she didn't have to deal with it. Can you blame her? Instead of her siblings being glad to see her, they showered her with anger and hatred!

It might be argued that they were jealous of whatever perceived inequalities they felt existed because WG got away and they didn't. But truly, their behavior was only mildly more exacerbated than normal, I just didn't realize how much WG is forced to endure until she wasn't dealing with it. Sissy and AB alone would rip each other a new one even if WG wasn't part of the equation.

At only 6, I'm finding it very difficult to achieve a balance and an air of safety for WG so that she can lead as normal a life as possible in this chaos. I want her to hang onto the confidence and joy she gained at Grandma's but since I'm having the same difficulty myself, I feel utterly powerless and helpless to support her.

I know many of my readers and followers have very large families that include both challenged and unchallenged children. I know that in such large numbers, it demands that the children share rooms. But in my mind, I just don't know how that is safe, wise or beneficial. What is the long term consequence for these little ones? No one seems to have a legitimate answer.

Are any of my readers unchallenged adults of impaired siblings than can give us advice? Tell us what DIDN'T work and what you wished was made possible for you in your childhood home so you could grow up with some semblance of normalcy. I would REALLY love to hear from you. If you can't comment because you do not have a blogspot account, please click my profile and then the email link on the left tool bar.

Sunday, July 11, 2010

Dialogues about Medication

I distinctly remember a conversation with the kids' birthmom many moons ago. She insisted that her diagnosis of bipolar was false, that her doctors didn't know what they were talking about and that under no uncertain terms would she take the medication they prescribed nor would she maintain the day treatment that they felt she needed.

This is a conversation I've heard in some variation many, many times from persons with bipolar diagnoses, that they have been misdiagnosed and that they don't need their medications. And equally as many times, I've talked with stable persons with a bipolar diagnosis that know the benefits of maintaining regular appointments with their psychiatrist, psychologist and above all, medicating. I'd say my experience is 50/50 for persons that follow doctor's orders and those that don't. Sadly, those individuals that choose not to, usually have the most significant challenges with their mental health issues, challenges that often include homelessness, criminal behavior and abuse. [1]

In an effort to help Sissy understand the need for and the benefit from her medications, I maintain a running dialogue about them. I don't care if she has a questionable cognitive understanding of them, I'm going to tell her about her meds anyway. When she was at RTC, the staff had to call us first before they added or changed any of her meds. They also had to send us paperwork that required our signature of approval and acknowledgment. On the days Sissy was to begin her new or adjusted meds, I always called the staff in her building and asked them to please tell her that I approved the med change so she didn't think her doctors were taking liberties. Thus, when Sissy returned home, I was flabbergasted that she knew nothing about the meds she took, why she took them or even when. I considered this a setback because before RTC, I always talked with her about her med changes.

So we began a new, discussing her meds, what each looks like, what each is named, their milligram or gram amounts and what the medication was supposed to do for her. When she's had side effects (the tremors she had back in May from the tenex) I always told her which med was causing it and the level of severity of her side effect (that is to say, if the doctors were concerned about the side effect or if it was something they felt she just needed to deal with). If there are changes in appearance to her meds because they've been filled by a different pharmacy, if there are differences in number of pills because we're giving her 2 2mg intuniv instead of 1 4mg pill, or if we're changing when we dose them because we're giving her two at breakfast and 2 at dinner, she's told. Every time. And about once a week, before she takes her pills, I pour them out and we review the purpose of each one. Then, when she has a good day, we talk about how she's feeling and we discuss which medication is helping her achieve that balance. In these conversations I always discuss a before and after scenario, particularly if she's just had another med adjustment.

Why do I spend so much effort? Because I don't want Sissy to one day have the same conversation with me about her diagnoses and medications that her birthmom did. I want Sissy to understand and accept that some people need medications to live happy, fulfilling lives, that medication is not a bad thing, that it's nothing to be embarrassed about and that it doesn't make her a bad person. We casually discuss her diagnoses and how many people suffer from similar ailments and are doing well, that there is hope and a future for her regardless of what the documents say or how many pills she must ingest daily.

Yes, it scares me that my 10 year old is on so much medication, that her mental and emotional health diagnoses are so severe that without those medications and therapeutic interventions, she could not successfully live in a home environment. But it terrifies me more that without a working knowledge of how these interventions help her, Sissy will be ignorant of their benefit and may one day conclude she doesn't need them. If she gets to that point in her thinking, I fear that success, happiness and a bright future will be unattainable.

I hope, I hope, I hope that these ongoing dialogues will not be in vain. I'm not naive or idealistic, I'm plotting a course for success knowing that Sissy might deviate from it anyway. If despite my efforts, Sissy still snubs it and chooses her own path in adulthood, I'll go to bed at night knowing that no matter what she's doing, I did what was right when she was in my home.

So many variables to consider when helping our children! So many opportunities for success. So many for failure. We must take it one day at a time. What do YOU do to educate your child about meds and diagnoses?

[1] parenting a child with many mental and emotional health challenges, I have a better understanding of what happens to adults that end up on the streets, in jails, in domestic violence situations or self-medicating with alcohol and drugs. That said, it often concerns me that the faith-based initiatives to help these persons are invariably devoid of any meaningful medical, psychological or therapeutic interventions that could help these adults achieve success. All too often the "Jesus saves" and "hell, fire and brimstone!" rhetoric falls short for these significantly challenged adults. Not only that but without medical and psychological supports, a strictly religious approach can be equally damaging and abusive both mentally and emotionally. Throw in the fact that many of these mental health issues include hyper-religious ideations and you've got a recipe for disaster of overwhelming proportions. In the mind of a severely manic, hyper-religious individual, they might believe they have been called by God to start a new congregation, accomplish that task and then lead a flock of other mentally challenged individuals or vulnerable persons down an alarming and scary road toward destruction, all in the name of Jesus and without any meaningful theological education or pastoral therapy training. The Waco, Texas mass suicide is one extreme example but there are many, many less conspicuous examples all over the world. This revelation is the very reason I will never return to a nondenominational congregation.

eh, all that is another post. sorry.

Saturday, July 10, 2010


We took our kids to see "Despicable Me". It was a great movie: funny, great cinematography, quick wit, adorable. Steve Carrell is the voice of the main character so you know it's good for many belly laughs. However, if you have children that are recently or late in life adopted, this movie may be a trigger.

The story line includes a single man adopting three orphaned girls so he can use them to fulfill his evil plans. The orphanage caretaker is a surly, demanding woman that punishes the children by putting them in "the shame box" During the climatic point of the movie, the evil character-turned good guy sends the girls back to the orphanage (against his wishes, but it's still a disruption). The orphanage caretaker makes the girls sit in the shame box because they're returned! The end is happy and endearing, heart warming, tear jerking, etc. Really, despite the premise, it's super cute. However, it could definitely be a trigger for traumatized children so be careful! I would NOT recommend it for families that have newly adopted children, have severe attachment issues or that have little girls that were abused by a male figure.

which is a large portion of the adoption population but whatever. Disney doesn't ever consider the psychology of these stories and how they'll impact the adoption community, they care only about the revenues.

If you haven't purchased Claudia's (Never a Dull Moment) book you need to. It is an excellent account of how they navigated the foster care system and secured permanent placement for their 12 children. It will inspire you do go and do likewise. Plus, the proceeds will help benefit their family. Who doesn't like to help our fellow RAD moms?

Friday, July 9, 2010

Progress Notes

When we saw the pdoc last Monday, he added a smidge to Sissy's lamictal and told us to stagger when she doses it 50/50 morning/evening. Since this is the week we anticipated her rage, and she has yet to launch the typical diatribe, I think this is a good med mix.

Could it be? After nearly five years of juggling meds, have we finally worked out a cocktail that is keeping Sissy stable? Of course you know, I'm holding my breath and am jumpy, edgy, anxious. I'm so used to the highs and lows, the moodiness followed by rage, the rare pleasant moments that it is really hard to hope that we have made progress finally. And just as Sissy is entering puberty, that is to say, it might be a good med mix for today but toss in estrogen spikes every four weeks and it's anybody's guess.

In other words, Sissy is doing really well and it scares me just as much as it amazes me.

Last night just she and I were in the pool (that is now only 2 feet deep because water keeps pouring over the listing side). We bobbed and talked and giggled and then WHAM, it hit me this is one of those mother/daughter moments I've always dreamed about having with Sissy and I'm having it. RIGHT NOW! Amazing.

This morning she let me do her hair up in a pretty style. She didn't rage. She didn't scream. She didn't mutter that she hated it. She looked in the mirror, asked for one minor adjustment and then left it alone! WHAT!? I made her hair pretty and she didn't RADify it?!? Amazing.

Then as I dropped her off at camp, one of the little girls came up and hugged me. "I guess you're one of Sissy's friends?" I said to her.

She giggled and said, "Yup!"

Sissy has made a friend?!? And this child is friending her back, happily?!? Amazing.

Sissy didn't bad mouth me to this child so this child thought I was safe to hug?!? AMAZING.

amazing, amazing, amazing.

Still, I'm holding my breath. I'm not going to breathe until Sissy makes it through a rage cycle without raging. Then I'll begin to accept that this is possible, that Sissy can actually be working toward healing. That we are on the road to progress. I wonder if this is how Mommy's feel when the doctors tell them their child's cancer is in remission?

Ya'll, no matter what happens with Sissy's progress, this has been a horrible, long, exhausting, difficult, heartbreaking, miserable, life-changing two years of crisis with Sissy. It's going to take us all a long time to recover, for the last ebbs of PTSD to fade away, for our family to settle into what just might be a new norm. But there is hope. Really, there is.

Wednesday, July 7, 2010

Owning it

Day two of day camp for Sissy, WG is at Grandma's in the country (really, that's what they call her: grandma in the country) and it was just me and AB back to to the "brace place". AB got his fifth pair of ankle-foot orthotics (AFOs) to help deter his toe-walking.

AB's developmental specialist has gone to bat for us, waging war with insurance that would really rather not cough up the $1800 annually for the fitting, new orthoses, socks and shoes. But she has seen patients into adulthood and has been increasingly alarmed and discouraged by the arthritis in the knees, hips and backs of the toe-walkers that didn't stay in orthotics. Not to mention the fact that it would take AB all of twelve months of toe walking before it would begin to shorten his hamstrings and calf muscles to the extent of needing interventions. Serious interventions. Read: surgery.

Thus, as the prescription said, "AFOs articulating plus shoes for prevention, not correction" because the truth is, AB will always toe walk. It's not a CP issue, it's an autistic thing.

AB was excited which means he was all over the map, mood and attention wise. He tends to talk faster with more speech impairments, move quickly and do odd behaviors that he wouldn't do normally (he began loudly demanding that I purchase a colored pencil like the one the tech used to mark the AFOs for sanding). As he was doing his crazy I'm excited, freaked and worried all at once thing, I thought to myself GOSH! He's a lot of work! and then WHAM. It hit me. I took him without Sissy or WG and I was still saying he was work.

I let my mind run with it and I began to realize just how much work Sissy is. She's a lot of work. I didn't know how much she was stealing from me until she wasn't taking it.

She takes a lot.

Oh, and I still have AB, who is tough all by himself.

And WG who just wants to be a normal kid.

Right. It's helpful to stand back and get a clear idea of what I do everyday, to evaluate the situation, sum it up and ACKNOWLEDGE that it's a butt load of work. Own it. Wear it. Digest it. Admit it. Sissy steals from me because she doesn't return anything valuable in the parent-child relationship. AB takes from me because he needs so much. WG replaces a lot of it because it's who she is and since she's not here, I'm realizing just how much she contributes. She's pretty amazing and I need to tell her more often.

I'll take pics of the new AFOs when WG returns. We sent her off with the camera. yes, we only have one camera. Yes, I put it in the care of a six year old.

Tuesday, July 6, 2010

I have Cubans in my backyard!

I wrote a post about a month and a half ago reminding Moms to put themselves first, to take care of themselves and to make a list of the top ten things they like to do that's just for them.

Well, I forgot to mention one that I utterly enjoy.


It is my belief that the pair of ruby-throated hummingbirds we had last year has returned.  These two seem to be nesting in the same tree.  Last year they had two babies that made it to adulthood which was amazingly good fun watching the babies fly to the feeder and back to the nest, getting bigger by the day.  These drink from the feeder at the kitchen window so I am greeted every morning and evening while I prepare meals. And occasionally, if I am neglectful and let the feeder get to low, they hover and glare at me from the other side of the glass. Which is hoot!

This year I hung a feeder in the backyard from one of the many pines (another thing the dang trees are good for) and hoped I'd get another pair.  But what I hadn't anticipated is that I'd get a different species.  I kept looking and saying to myself, my, that female is large and gosh, her coloring is different but it's not a female.  In my best estimation and casual research (an hour on the internet and three books later), I believe it to be a male Cuban Emerald.  And how can I be so certain?

This morning the kids and I ate breakfast on the back porch because it was so cool.  We have an eye-line view of the feeder and while we ate, the chattering and flitting of the dueling hummingbirds began. The conquest was a sip from the feeder. We giggled and oooed and ahhhed over them as they swooped and dived and heckled one another. Finally, one of the birds won the battle and perched on the feeder.  This one was taller, stouter with a back that was bronze-gold with black wings that had a blunted end.  I about choked on my banana.  "A female Cuban!  I knew it!!!'  And the kids thought I'd gone batty as did the dogs.

The research on the internet shows different colored Cuban females than the texts I've read and technically, we're too far north for Cubans but it's been mighty hot here, so hot my tomato blossoms have been aborting! ugh. The unusual climate patterns we've had the past few years may have driven them further north than they are reported to be seen.  It's no uncommon for bird species to adapt quickly (so says the former biology teacher).  That said, owing to the fact that I'm no ornithologist, I've only done an amateur review and that this website says Cubans don't live in my state, with trepidation I am happy to report that

I have Cubans in my backyard!

I think we might also have a pair of some broad-tailed but they fly so fast it's hard to distinguish them from the ruby-throat and besides, I know I've never seen the female broad-tail.

Still, isn't that fun? Last year we captured some snapshots of the birds at the feeder and when you scroll through the photos quickly, it looks like a stop animation film of the birds in flight. *snicker*

[edit] wow! i went back to the website I listed above and read the FAQ:
Can I tell how many hummers I have by the amount of syrup they consume?
A: Not precisely, because you can't know what they're eating elsewhere, but you can make a reasonable estimate. One study suggests 1000 birds per gallon consumed daily. Or count the highest number of birds on your feeders at one time, then multiply by 6.

That means, I have somewhere between 12 and 18 hummers coming to my feeders! WOW!

It's the simple pleasures in life. What's yours?

Monday, July 5, 2010

Peace in Puzzles

I've stopped being frustrated with my loblolly pines and have decided to put them to good use. Two loads of laundry, one personal and one business (shop towels) can be hung neatly in the summer sun to dry in a third of the time, eliminating heat from the dryer in the 83 degree house despite the AC, all compliments of the 125 feet of line strung among my pines.

Life is going to give us lemons, it's an inevitability. The issue becomes not how to eliminate them but how to manage those lemons. Instead of perceiving their sourness as something to begrudge, it behooves us to uncover the opportunities they might present to us. Will we let the lemons sour us in like kind or will we rise to the occasion and uncover a mystery about them? We might get angry about the way a lemon burns an open wound but we could also be glad it is a natural astringent, killing the bacteria and protecting us from infection.

This quest for peace when life is a puzzle, isn't easy. It requires staying tuned in to the bigger picture while we fuss over the infinite, sometimes microscopic details that become the compilation of the grand design. It demands that we put our whole selves: our desires, our passions, our grief, our pain, our suffering, our love, our joy and our hope, into something other than ourselves. Without a surrendering of all that we are to this puzzling life, we will never find peace in the grand design, we will never look at our mountain of lemons and see a refreshing glass of lemonade on a hot summer's day.

The other difficult lesson on this journey for peace despite the pain, is patience. A beautiful quilt is never finished in short order. The patterns are painstakingly fussed over, the pieces precision cut and sewn together, the quilting done stitch by stitch for hours on end.

thanks Bren, still quilting

After all the labor and love, a finished quilt might still be a ruined quilt. If the process of choosing the fabric: prints, layout, and colors, was not done with patience, if the bigger picture of the finished design was not considered in this process, it will be for naught. The quilt will be a garish blur of mottled colors and shapes, making the viewer nauseated and dizzy. All for the want of patience and an understanding of the grand design.

Some days I just want to scream, I want to gnash my teeth, I want to punch walls and break things.  I want to do something physical because inside, I hurt so intensely that words seem ridiculously empty in my attempt to say it.  "GOD!  This life hurts!"   I did all the right things, I was a "good girl" that obeyed and respected and strove for the straight and narrow when I was often surrounded by others that didn't give a rip about right and wrong.  I looked up at the wondrous cross and said to myself that I wouldn't let the blood of Christ be shed in vain for me.  I vowed that every step I took on this earth would be for His glory.  And yet I met the face of pain.  All those prosperity teachings and Jabez prayers and ten-fold returns for my faithful tithing?  Boy howdy, how I want to punch the crap out of all that nonsense!  I just want to make it through another day without crying!  I want to go to sleep at night knowing I'm loved more than I'm hated.  I want the fruits of the Spirit to be poured out on me with the same measure I pour them out on others.  I've had to make peace with the fact that what I want in this life, matters little.

I speak to my readers, my friends, my family. If you are caught up in your pain, if peace is miles away from your grasp, if the puzzle you're trying to assemble seems impossible, then perhaps you have forgotten to look at the complete picture. All the pieces fit together, it just might not be in the way you want it to. It might not even create the picture you think you're working on. Instead of fighting against the inevitable, instead of throwing lemons in anger, pain and despair, find the missed opportunities, dig deeper inside yourself and look harder at the pieces in your hand to find your peace. I'm right with you, sorting through my own pile of pieces, desperately clinging to the peace I've finally found, laughing in joy and sipping my half-full glass of lemonade. 

There can be peace in these puzzles, if only you will look for it. I love you.

Sunday, July 4, 2010

No apologies offered here

Faith Makes things possible said the following in her fourth of July post:
We keep our celebrations pretty low key on purpose. Too much action then we get too much aftermath. Those of you with kids who have special needs know what I'm talking about. We learned the hard way. It can take days to recover from a day of too much excitement. I'm all for prevention.

I couldn't say it better so I'm just going to let her say it for me.

We shoot off fireworks in the street of our neighborhood and then invite our other special needs family friends over to join us. We've done this for many years. It's what works for our kids. It means no toilet issues (because gosh, my kids have toilet issues), it means no crowds (because my kids can't do crowds), it means AC and TV is available just by going inside, it means access to food on the kitchen table, it means unlimited beverages with ice, it means no 45 traffic backlogs. It means items of comfort like stuffed toys, bubbles, MP3 players and pillows and blankies. It means no paybacks for the next two days.

All of that translates into: an enjoyable holiday for Mom and Dad that doesn't cost us more than we bargained for.

This is how my family has to celebrate because this is how my family is. Sometimes I miss seeing the big displays. Sometimes I miss being able to do more with more people. I don't miss those things for long, I've learned that this is just as much fun in its own unique way. I won't apologize for it anymore.

Thursday, July 1, 2010

Bright, Shining Gift from God

My high school senior yearbook has a section next to the photo that asks, Future plans?. In my obnoxious, naive youth, I wrote "Become a doctor, get married, have lots of little boys and live happily ever after." It's laughable now but at the time, that's really what I wanted, although even then, I knew the "happily ever after" part was absurd. The truly telling part of those plans was the little boys I was pining for. I'm one of five girls, I never wanted to parent estrogen-laden humans because I lived in a cesspool of estrogen my whole childhood. Boys. Lots of them. A baseball team's worth of testosterone. That was what I mostly pinned for.

Oh, but for my polycystic ovaries that won't put out eggs on cue. For all my estrogen, my body never did figure out how to make things work correctly. Alas, a house full of leggy, wrestling, lamp-knocking-over, table-breaking, short-stopping or first-basing, loud, ravenous, XY chromosome-laden humans has never been a reality for me. Truth? I cried when we learned WG was going to be another girl. Sissy was all the girl one lifetime could manage.

Tracing back to Sissy's adoption story, Aspie Boy's story quietly and unexpectedly unfolded. In July 2000, Sissy was 7 months old and living with birthmom, my friend died of breast cancer, my dog died the same week and my OB/GYN called and said that without evasive procedures, pregnancy wouldn't be possible. We got our dog Hope and we tried to pick up the pieces. At the end of that month, I woke up with a start in the middle of the night. There haven't been many times in my faith in which I felt like I was truly hearing the voice of God but this was definitely one of those moments.

"Write this down!" I thought to hear the Spirit say. I scrambled for a pen and paper and immediately, I heard a boy's name. I wrote down the name, vowed to look up the meaning in the morning and went back to sleep.

The next day I looked up the name. It means, "Gift from God". My sister was pregnant at the time so I thought perhaps the name was for her. I picked up the phone to call her and tell her the name but instead of suggesting it for the child she carried, I surprised myself and said, "Please don't use this name if your baby is a boy! I think it's a name I'm supposed to use!" I startled myself as the words came out of my mouth because I knew I wanted to adopt Sissy but at the time, I had no idea that birthmom was four months pregnant.

By December, Sissy was in our home and birthmom had asked us to take her unborn child. She hadn't gone to prenatal appointments so she did not know the sex of the baby, she knew only that she did not want it. In fact, she was painfully blunt about how much she did not want the child she carried. A week after we agreed to adopt that baby too, she had a sonogram and told us it was a boy. Finally. FINALLY! I was going to get a son, a complete surprise, truly a gift from God. The Dad bears a family name, the meaning of which is "bright, shining". A first son should be named after his father, yes? YES! Aspie Boy truly is a Bright, shining Gift from God.

Birthmom couldn't wait for his birth, she was that adamant about not wanting him. She complained and fussed and even tried walking ten miles in freezing weather to make her labor come. Her due date, which was also her birthday, was a full moon. She labored so fast she hardly had time to get to the hospital. At 2 am, our phone rang, his grandmother calling to say he'd been born but all I could hear was the beautiful sound of AB screaming! By the time we got to the hospital later that morning, it was snowing, a rare occurrence for our state. I just considered it one more gift.

AB's adoption was easy in the sense that birthmom waived her rights before she left the hospital. It took all of four months to finalize it. In retrospect, despite the challenges birthmom gave us over the girls' adoptions, I wish she'd been as sorry to part with AB. It pains me that she felt so little connection with him because he is so precious.

Looking back on AB's development, I recognize and readily tell his doctors about his delays that were immediately obvious. But when I was in the moment with him, I was so overjoyed to finally be holding a son, I didn't notice. Pick a developmental problem. AB has it. I remember him being six months old, no longer able to take naps, laying on his back in his crib humming in echolalia fashion to his hands which he waved in front of his face. Dead ringer for autistic behaviors but in that moment as I spied on him to make sure he was safe, all I thought was that's my son! right there, in that crib. Those arms, those legs, that humming is coming from MY son! my little gift from God

At 20 months old when he still wasn't walking, I began to be honest about his impairments. By four, we were headlong in the diagnosis process which came to a conclusion this past spring with the genetics results. It's all white noise to me. None of that changes the fact that he's mine.

He kisses me in funny ways, tackles me with hugs, cries, paces, rocks, stims, talks incessantly in mottled speech, wears ankle foot orthotics for his chronic toe walking, has an IEP but passed all of the CRCT, draws amazing pictures for hours on end, stays awake many nights making up stories or panicking about perceived shadows in the hallway or cockroaches on the floor, and irritatingly recites five word phrases from commercials in the exact tone as the announcer, over and over and over until we beg him to stop. In short, he's perfect.

Right now, my little man is struggling. His moods are all over the map, he's angry one second and in tears the next. He's demanding lots of sensory input. His therapist is unsure what to do as am I. I think Sissy's ongoing crisis is taking its toll on him and I'm powerless to stop it. Last week I went to his room while he slept and I laid down next to him.

I was struck by the truth that my heart aches for him in his despair but not for Sissy. Somehow, in all the nauseating convolutions of RADs, I've put emotional distance between Sissy and I when it comes to her mental illness but not so for AB. Perhaps it's the simple fact that despite his very difficult impairments, he still returns something in the parent-child relationship. With AB, it's a two way street, with Sissy, it's a dead end. I cried. I cried because my little man is struggling so much right now and I don't know how to help him. I cried because he loves unconditionally. I cried because I can't bridge that gap with Sissy. I cried because I feel like a horrible parent for being able to see past AB's impairments to the little boy that loves me but I can't do the same for Sissy. I cried because I don't know how to get there with her. I cried because I don't know if I want to try any more. I cried because it is easy for me to pray and ask God for help for AB but when I pray about Sissy, that's not quite how those prayers go. And I cried because I think it is because of Sissy that my little man hurts so bad.

Next week Sissy will be in day camp and WG will be at grandma's. It's just me and AB all day and on Wednesday we get to pick up his new AFOs. I hope this break from his sisters gets him the respite he desperately needs. I hope the unlimited mom/son time will fill his soul to overflowing. I for one, am filled to overflowing with just ten minutes of his laughter.

What is it about sons that makes the maternal relationship so different? What do they give mothers that daughters can't give? I've never been able to pin it down but my son, my special little man, he just makes my heart burst to overflowing so much that it literally makes my heart ache. Don't get me wrong, his impairments make him very challenging and I lose my cool a lot but mostly, I love my son, my one and only, such an amazing little guy. I can't possibly comprehend why anyone would ever not love him too. He's perfect for the simple fact that he's mine. He likes it when I tell him that I wanted a house full of little boys to love but instead God gave me one little boy that needed all the love of a house full of boys. No matter what he does, no matter what the doctors say, he is and always will be, my bright, shining gift from God.

Wearing a weighted vest to help curb his sensory issues

one of AB's amazing pictures