On the spectrum?

I have come to realize that kids are weird. They have all these idiosyncratic behaviors that belie a human of such a young age. Perhaps it is because they have no filters? No on has told them yet that their actions are strange or inappropriate or unsavory.

Quirky ain't just for the old and eccentric. It's also for the 2 year old who likes to sit in boxes of all shapes and sizes, even boxes in boxes. Aero also likes have his face stroked. Not by gentle fingers but by fabric or fuzz or his collection of mardi gras beads. He has no real interest in motorized things; cars, truck, buses. His passion is for bouncing. He is your very best friend if you can bouncy, bouncy him. He is obsessed with shutting doors and putting on lids. He is a dumper. He can locate a container of dumpable objects and dump them into his lap at lightening speed. Yet, his next step is to pick up the strewn objects and place them back in their respective container, put the container back where he found it and then, dump it all again.
He lines up objects as he sits on the floor playing with balls or blocks.

While I giggle at all these seemingly strange behaviors, they also cause me concern. There is a growing trend amongst kids with Down syndrome to also have autism or behaviors 'on the autism spectrum'.

They are behaviors that could be classified as 'spectrum processing/integration disorder'as they are very repetitive. He also exhibits some developmental lags that may be 'on the spectrum' like lack of eye contact, not following simple direction and non existent communicative dialogue. I discussed my concern with a pediatrician almost a year ago and she referred us to the Children's Hospital Autism Clinic. We just had our 'intake' appointment this past Monday. Yes, it took almost a year for them to fit us in.

We will be returning to the clinic in the next month or so for further evaluation. I would love to think that Aero's behaviors are just weird and quirky but I fear they are a symptom of a more complicated condition.

The Challenge

Hi. It has been a looooonnnnnggggg time since I posted on this blog. 

It is National Down Syndrome Awareness Month and many families with children that have T21 accept the challenge in October of 31 for 21; a blog post a day in October to raise awareness for our beautiful kids.

I did the challenge in October 2011. I sat out last year because we had just moved and life was topsy, turvy transition. But, here we are now, stable, safe, secure, warm, happy. No excuses to not let you peak into our day to day life. 

In the pic above, Aero is doing what he has been doing quite often for the past month, trying to figure how to stand up. He is not walking, yet. Therapists tell me he will not really attempt to hurl his body into space until he masters standing independently.

O.K. Only thing is that he is really stubborn. He refuses to let me show him how to do it by squatting first. Aero rarely hangs out on his knees, let alone squat. So, my fear is that he will just hang out in down dog for the next few years letting momma carry him, everywhere, feeling so much the strain on my back and knees.

Kids with Trisomy 21 our definitely on their own timeline. It is a necessary grace to fully realize and accept this. In some ways, it makes the journey that much sweeter because you savor every, single, little micro movement on the way. 

So, if you can not beat 'em, join 'em. Down dog is an excellent stretch for my aching back.

Here me roar

I make the call on the clothes, even pajamas. Case in point, this awesome, elmo-rocker-pixy-inspired P.J.'s ensemble. I will single-handedly bring back donning a stocking cap for slumber. Or, as we do here in the PNW, a bit of fleece (sustainably re-purposed from dryer lint, of course). Cause, I am 2.

I no longer nap. Momma does not need that two hour, afternoon break from being my sole source of entertainment, nor does she need to take time to prepare meals so she can shove a quick bite down the gullet. She needs a steady dose of my cuteness and pot lid banging against the cement solos to stay sane and focused on what is important. Naps are for neonates. I am 2.

I will continuously and constantly beg for sips of Momma's coffee. I need to practice my oral drinking skills, you know. And, I am a Seattle babe, born and bred. Our first beverage should be a fine, shade grown, fair-trad, dark roast with subtle hints of chocolate and ripe berries. Plus, it promotes a regular bowel movement, a topic discussed constantly by all you big people. My logic is not faulty.  I am 2.

All those grueling medical tests, procedures and emergency room visits.
They. Will. Stop.
Today is the last day I will be held down by three big people while some weird substance is injected into my belly, a big freakin' machine is maneuvered over my squirming body and at the end the big people who all wear horrible, green, loose fitting outfits (they should hire me as their fashion consult) declare that I am fine. My intestines work perfectly.

The reason for my every month 48 hour vomit fest?

I am a mystery. I will continue to mystify.

I am Aero.
I am 2.

Too Much WTF

Deep breath....because....because I am going to cry. No, not cry...wail. I keep holding back the tears and keeping the stiff upper lip but all I can do at this moment is weep. I am weary, friends. Weary of so much shit hitting me day after day after day. The latest and greatest just within a 24 hour span;
-scheduled 4 interviews with potential nannies to take over for Aero's current caregiver who leaves on May 11. All four were no show without even a phone call or email.
-Single dad, who owns the house, going through a divorce, sits me down to let me know this shared living situation is not working out for him and I need to find a place to live. Great. I just got rid of all my furniture to live here.
-Caregiver informs me last night that he feels obligated to a friend who is going through hard times to drive her home to Utah. That means his last day is not on May 11, but TWO days from now.
-Aero has been battling a cold for almost 3 weeks. No appetite, losing weight and he is already to small.  Lost all ground on oral feeding and back to strictly g-tube. Started antibiotics for possible sinus/ear infection 3 days ago and not seeming to make a difference. What is wrong? Is his immune system all out whack and why? If you know the genetics of a child with Down syndrome, you understand they have a very compromised immune system. So, please no platitudes about how he will bounce back. I am really worried.
I don't know what to do anymore. I scared, I am confused as to the next step. I can't continue with all this WTF stuff.
Universe, why?

Change is....(gulp) good?

Aero & Auntie Chris

Happy New Year! I hope that 2012 is a sweet, sublime trip for us with our lives intertwining in all sorts of delicious ways. The 1st one will be Aero's 1st birthday on January 15th. I can't believe it! One whole year old...wow!!! It will be a relaxed, casual celebration of good food (thinking potluck) and the traditional ice cream & cake. Only thing is...Aero does not yet eat cake...if he could, what flavor do you think he would request? We will also have a little photo booth to take snaps with the celebrity birthday boy!

On a sad note, it will be our last celebration at 4319 S. Alaska. Yes, the time has come for us to ...well....figure out how to make this all work. I want to provide Aero the very best foundation I can so he can reach his full potential. I know that is NOT putting him in a daycare with his feeding tube and T21 and just hope he gets the attention he needs to thrive (that is the only program that I can get subsidy monies for). I know it IS spending his waking moments with him engaged in meaningful play and devoted care to teaching him to become an oral eater. 

I am reaching out to you for your help. I really need it right now. What would be most helpful to me is for you to just come over and spend time with Aero while I pack up and sell my belongings. It is an arduous task I have before me and honestly, I can't do it without your help. Most days I can barely get myself fed let alone pack up a house and prepare to move.

We would so appreciate the giving of your time, even an hour here and there would help.

Christmas Wishes

In trying to take care of Aero, give him the best possible foundation for a healthy, vibrant life, I have made some hugely erroneous miscalculations. Providing his care giving on a daily basis I thought was the best course of action for him. His care is very intense, feeding 7 times a day via the g.i. tube, pumping breast milk 8 times a day to provide sound nutrition, feeding therapy 4 times a day in which we work on his oral eating skills, shuffling to and fro from therapist appointment, doctor appointments, researching the best protocols for kids with Down syndrome, getting on the floor and playing with him to encourage physical activity as his low tone requires some prompting for being active, being with him in the hospital to provide the love and care that only a mom can provide, etc. However, what might have been best for Aero has placed a severe strain on finances. How does a single mother with a special/medical needs child attend to her child's intensive needs and make ends meet?

The plan is now that I return to work in order to keep our medical benefits. Sounds easy enough, right? But this one decision has made the whole house of cards topple down around me. The fact is that we don't make ends meet now and we live bare bones simple. Returning to work will not help ease the burden of tightly strained finances. In fact, I will be making less than $3 an hour because I have to pay for child care. And as many times as I try to make the numbers crunch, they just don't, won't, can't. I am sinking us into a hole and the ramifications of all this scares the hell out of me. This is how people end up homeless. Wow. 

So, what is my Christmas wish? Oh, if only those lotto numbers would appear to me! However, I need a firm grounding in reality. And the firm grounding is that we need to severely cut expenses, namely housing. I walked down this road earlier in the fall to search for low income housing to no luck. 

What we really desire is a place that is communal. Living with friends or like-minded souls  would be ideal. We need to share expenses in a household living situation. Aero is such an amazing, loving, social child that would so benefit from the presence of others around us. 

Can you help? If you know of any one that is also looking or open to a shared living situation or they have an MIL available, please, please let me know. Our timeline is now!

Much Love,

Brandy & Aero

Overjoyed!!!

A miracle happened this evening. Want to be succinct, shout it out. Yet,  feel the need to give background so you can understand how amazing I feel right now.

I have been wrestling with a conundrum; when should we tube wean Aero? It is a tough call and here's all the reasons why and how I have gotten so twisted in trying to figure it all out.

-Aero is an eater, no doubt. When the stars align, the boy can chow down. Usually, it is in social situations. Like when we have dinner at Nate & Audra's home, both visits have yielded break through milestones in oral consumption (coincidence that Nate is a great chef? ).

-Aero has not shown me to be a drinker. This is the sticky point. He needs to be comfortable with drinking because his breast milk intake by g.i. tube is 120-160 ml. At most, he has only taken in about 10-15 ml by mouth and it is so random. I offer him water quite often at meals and throughout the day. He has gotten stronger but not the level he needs to be to take in the nutrition that he needs. Purees just don't pack the same dense nutrition of breast milk. And, boy can not live by cheese puffs alone.

-I strongly want him to take breast milk his 1st year of life.  I totally have the power to affect his health in positive because children with Down syndrome need really balanced diets to thrive. Has to do with the way their bodies metabolize, i.e. they degenerate cells much quicker. Therefore, they need really healthy diets chock full of whole foods to thrive and reach fullest potential . So, I have reasoned, if I have to keep up with the tube feeding and breast milk pumping past his 1st year, so be it. Maybe we should wait and wean after his 1st birthday? That makes the most sense, right? If he can't drink the bulk of his nutrition right now than I need to wait until this critical 1st year is behind us.

-He has become very familiar with the function of the g.i. tube. Just the other day, he put his hand on his tube and started pulling. I thought he was just finding a new toy until he leaned forward and bit my boob. Oh, you are hungry! During feeding, he has recently started grabbing for the syringe full of milk, spilling it and having momma bite back cuss words. I have been trying to understand that one...does he want to drink the contents? I grab a small cup and offer him some milk, no way...that is not the proper decoding.

Ok, so what happened this evening that gives me so much hope and joy?  It was the last feeding of the day, 7 pm. This is the feeding that he can usually take in the most volume, at least 150 ml. I pushed it a bit and gave him 155 ml based on how comfortable he looked and I had not heard any grunts (I interpret as 'enough'). I unhooked the y port from this g.i. tube and he grunted. Hmm, that was curious. Maybe he is not feeling full? No, that has never happened. I proceed to gather up the  feeding supplies, take them to the sink and wash them. This is what I usually do to give him some time for digesting. He just hangs out and watches Elmo for a few minutes. When I checked on him he was still chowing on cheese puffs. Interesting and odd. His appetite has been nil lately. Maybe he is not feeling full? I grabbed a bottle, filled it 35 ml of breast milk, popped on a nipple and held it gently to his lips. He readily took it, compressed and sucked down 15 ml with no problem. He seemed to time it right, swallow when he needed to and start again. That is a miracle, miracle, miracle. The boy can drink.

Happy Thanksgiving!!!