Sweet Dreams, darling.

 

At the beginning of my super duper’s summer vacation, I was still timid and dreading having to take care of her and her brother for nine of the eleven weeks of vacation.  I dreaded being alone managing two kids and a movement disorder which often relegates me to an easy chair for torturous hours of mind-numbing Daniel Tiger while the dishes pile up and my exhausted husband prepares yet another supper when he’s already devoted himself to 8-10 hours of building engines to feed us.  It was a group that teaches the history and development of dream interpretation in scripture, as well as the Jewish and Christian cultures that depend on those scriptures.

This was exciting for me! When I was in Bible college at Lincoln Christian College, I learned that dreams can be an integral part of missions.  Devout followers of Islam both believe in dream interpretation because it is in Scripture, and desire wholeheartedly to obey the God of Abraham, Isaac, and Jacob.  Those who have ministered in the Islamic world (including some personal friends) have often shared accounts of how folks show up on their doorstep, saying something to the effect of, “I had a dream about some Jesus who said to come ask you about salvation.”  Talk about interesting!  So I very much looked forward to blessing the faith of other believers through dream interpretation.

Now, yes, dreams are an essential part of our bodies’ nightly refreshment, and sometimes they are just a way for our frazzled brains to process the uncertainty and exhaustion of our day.  But, hey, if they can do that, AND bring people to Jesus, I figured, I needed to be able to bring people to understand God’s will through their dreams!  Plus, I feel alone and in need of my Savior sometimes.  I wanted him to talk to me, and I wanted to prove to others that He speaks.  Why not ask God to transform another part of my life, and not just the outward parts that people can see?

This began a journey of faith.  A journey which made me question whether a Christian charging for the services they give others makes them less of a Christian, or a less good Christian.  A journey where I had to ask if it was OK for us to still believe in prophecy.  A journey where I had to trust God to walk into my life if I asked Him to.  A journey where I was told I had given my mouth to speak the words of a demonic plague, and was interfering in the ministry of this group, just as soon as I trusted my leaders.  A journey where my husband was ready to sue the lady who called me Jezebel for psychological distress.  A journey where I decided to ask God to ask how he wanted to cure my psychological distress instead of punishing a well-meaning Christian leader.  A journey where I wanted to scream, “For the umpteenth time, sometimes it’s autism,  not Jezebel!”  A journey where it eventually didn’t matter to me where I was in my purification process, but only that what I see is just scenery on the way to Heaven.  A journey where I learned to fall deeper into a holy love for my accusers (without worshipping them) than ever before… and learned that I can’t wait to release blessing over those I love

In all this, I also still felt that God was calling me to humble myself and submit to my brothers in their weakness so we all might be free.  No, I still don’t think I was trying to hurt their ministry, at least in any conscious way.  But I did see that whatever was going on was a distraction from their hope, and that I have the authority, as a Christian, to interfere in how Satan wanted to do that to them.  I was also constantly reminded– by my love of God, not by any human’s chiding– that Jesus submitted himself to those who were seeking the Father, even to the point of death.  People around me thought I was exhausted and discouraged.  And yes, I sometimes was.  But more than that, I was blessed to realize that something was actually changing and moving towards blessing in my spiritual life for the first time in years!

So I’m going to start sharing this journey.  I’m going to share some temptations.  I’m going to share how I hope to see people blessed.  I’m going to relish the love of my heavenly Father.  I’m going to grow in hope. Watch this space.  God is refining me (–and you too!  Don’t forget!  So, let’s get excited!  xxx)

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Spirit, not mind.

I love to be an open-minded person.  I try to judge the word of God by searching, asking, and praying, and recognizing what genuine doubts still plague humanity.  I want to have pure faith and desire to live a pure and holy life dedicated to my creator, the God of Abraham, Isaac, and Jacob, according to the perfect sacrifice given to me by my brother, His son, Jesus Christ.  I live in faith that what I speak in moments of false faith will be overwritten and forgiven at Judgement because of the limits of my mind’s capacity to understand the things of this holy creator, YHWH.

What I am about to discuss deals with the nature of the spiritual world and its relationship to the physical one.  This is something I do not understand and may not teach.  I am simply, huge disclaimer here, placing my questions here so that those who come with the same questions will not be afraid to approach the Holy One with their questions.  He is greater at explaining our misunderstandings than any human being.  Each of us should act according to the conscience placed within us by the Holy Spirit.  Each of us is growing in faith and conscience.  Much of my understanding is less than that of God.  So please, please, please don’t accept ANY of what I am about to say, unless your own heart understands it. If you do anything, just pray to the God of heaven that I grow in wisdom and understanding, and don’t muddy the already choppy waters of my mind with ANOTHER well reasoned opinion.  I’ve heard many, and they are all reasoned with a desire to honor the faith which gives us life.

I think I’ve previously mentioned that there are some families whose children with autism see images in their home which resemble either children who have died in the home, or armies that fought on the land where their home was built.  These are children with lower function, limited language, and sometimes seizures.  By any definition we understand, they have been plagued by physical circumstances, but who interact with visions of things which, by most definitions, no longer exist.  This is a struggle for me as a Christian, as I believe the majority– if not all!! of our children are innocent of divination, the primary and sinful means which lead one to see such things.  Most churches teach that Christ vehemently forbids any belief in ghosts.  Jesus had a prime opportunity to express this prohibition at his resurrection, when he walked across the sea to visit the disciples while they were fishing (such fun!).  He skips the opportunity to rebuke their theology of ghosts, and simply explains the difference between ghosts and human bodies.  It’s a provocative moment, and really squishes the toes of any pat answers I can come up with about ghosts.

In the modern prophetic movement, there are accounts of those who are gifted in spiritual travel, with the abilities of seeing, hearing, and speaking without mechanical aids across long distance.  Elijah says he saw Gehazi accept Naaman’s payment for his healing (which Elijah did not accept) at the very moment Gehazi accepted them… though they were not in the same location.  Curious, but clearly knowing from long distance.  There is some debate whether Elijah experienced it as his own spirit being there, or if he believed God was simply speaking to him about Gehazi’s experience.  The scriptural depiction, though, is that Elijah says he is there in spirit.

I can’t judge anyone who takes that literally, even thought I am far from believing it was meant literally in the Bible.  It goes against my training in the grammatical-historical method of biblical interpretation, but Christ himself went against the grammatical-historical method when he used a praise song of Asaph from the Psalms to say that “all men are Gods,” to defend himself from the teachers of the Law who told him his divine claims were blasphemous! He is a mysterious LORD indeed.

So, while I was thinking of this and thinking in my spirit about the nature of spirit to spirit communication, I wondered if our Dup15q children are prophetics instead of clairvoyants…  depending on who they glorify in their hearts.  It also makes me wonder if more went on at conception, before they became “handicapped,” where, in their own spirits, they accepted this lot and this state of disability.

It also highlights in my mind how much easier it is to accept a spirit that gives our child forbidden abilities, because it makes us feel hopeful and able, than it is to believe our children are plagued by deaf and dumb spirits in addition to the chromosomal and mental changes brought about by the physical nature of our disorder.  Pretty humbling.  Either way we ought to free them from whatever might draw them away from the Father.

So I offer no solutions, only a lot of questions and one theory about one aspect of our childrens’ lives that your pastor is probably too chicken to try to understand.  (I was once asked as a youth minister’s wife what a parishioner should do with a past episode where an apparition in the bathroom told her to say to her boss that “I’m so-and-so and I’m OK.”  So-and-so turned out to be boss’s daughter… I had no clue why that happened, but nothing like that happened after her repentance, baptism, and life in Christ.  The pastor, by parishioner report, was similarly stumped.  Seances and bringing the dead to life are clearly forbidden in the Bible, and yet Moses and Elijah appeared to the disciples well after their earthly lives.  It is appointed to man once to die, yet Lazarus died twice.   The dead know nothing, and yet Christ knew enough to raise from the dead.  This day you will be with me in paradise, yet Christ went to Sheol before appearing to the Father well after His resurrection. All the pat answers seem trite in a situation like this where the woman had not practiced satanic arts and was as freaked out by the situation as you or I would be!  I have not had this explained to me by God, so I can neither condone, nor condemn.)

… Which leads to other questions that are more sketch and have to do with the prophetic movement that I’m not familiar with yet, so…

I’ll Miss You, Designer Tub

Softly, silently, one of my precious daily household tools is apparently on its way out of existence: The Huggies Designer Wipes Tub.  I’ve checked Target.  I’ve checked Wal-Mart.  I even checked Amazon prime. All. Gone.  Huggies doesn’t even have it listed in its selections, and the only listing on Amazon looks like a third party seller– something I really don’t trust.  So I don’t think I’ll be ordering any.

These tubs infused dignity into my special needs diapering routine four years ago when I found out my little dolly girl was going to be in a diaper for an undetermined amount of time.  She’s still in those diapers, but I felt no shame pulling wipes from a subtly decorated, symmetric, stable tub with nonslip rubberized bumper lids on both ends.

I have stepped on them many times, and they never slipped out from under me and made me fall.

I don’t have to worry about them deflating and lookign ugly.

I can switch parts on them when they wear out.

But. They’re. Gone.

Great.

Thanks for the beauty in my living room, Huggies.

Hoping for a new solution, soon.

Eternity and second chances

Peter, having been called by Jesus personally to be the head Shepherd of the early Christian Church, went away from his crucifixion, denying he’d ever met that man, Jesus Christ.  Hebrews says we are surrounded by a great cloud of witnesses (speaking of the dead saints listed in that book.)  Hebrews also warns us that there is only one sacrifice for sins.  It’s done, and it can’t be redone.

In the parable of the Rich Man and Lazarus, Jesus says that the angels warned the rich man that there is no way for Lazarus to cross from Heaven into Hell.  “The chasm is too great!”  The parable of the sower talks about the plants that spring up and die.  Some speak of eternal security.  Some talk of universal election.  Some believe that, if Jesus went to preach to the dead, he might still be ministering to convert those who are no longer in body.

Honestly, the older I get, the more I realize how much of our ability to physically think thoughts is dependent on our flesh, the more I hope so.  I have no set theology of what happens between dead and heaven.  I know I am saved now, I know confidently that if Jesus died and rose again (and history says he did) and told us that he’s the only way we’re saved, it still might not be dependent on our ability to say yes.

A cousin grows up homeschooled in a gentle family with a background of missions and leaves for a life without faith and with other genders, other sexual orientations.  A former homeschooler blogs her complicated confidence that there is a saving God out there and her doubt that he planned the conservative culture that frightens her.  An atheist comes to church every Sunday with his wife for the love of the Church but just can’t believe in a God with his science background.

A friend was pre-Christian, raised in the church, who died, saw heaven, and decided to come to faith.  Shining example of Christianity, he is not.  But committed and redeemed and in love with his Savior.  An atheist goes brain dead and has a lovely experience with a girl who leads him through a world where colors fit the Biblical description of vivid reality beyond the dim shadow on Earth.  He returns with confidence in Heaven and God, though no mention is made of his conversion or repentance.

I struggle.  I can’t commune with my daughter on a level I want to.  To tell her that she is loved by Jesus, then ask if she has experienced enough of Him to believe in him.  He has made her and says we need his redemption without fail, no matter who we are.  Despite my missions background I pray that my love may cover her sin like Jesus covers mine.  It is only natural.  I pray for my cousin the same way.  It is only natural… the spirit of God flows through me.  Sure, it’s immature and theologically unsound, but Lord, I am desperate.  So save these precious ones I love.  I trust you, the one who crossed heaven and earth to die and visit the dead, to save us.  So, save us…we need you so completely.

Dup life, hurting world

Who are you?  More specifically, who did you think you were becoming when you were childless and single?

I am a Dup15q mother and the wife of an ordained minister from what locally is a conservative group of churches.   These are some of the first two things that people tend to learn about me when they meet me.  They might find out that I was homeschooled, and that I have to arrange my days and my energy level around Parkinson’s disease medications because of the disability that I was born with.  If I were a character on TV, whether it was a reality show or dramatized, it is exceedingly likely that my role would be tightly scripted-especially if the show were to air on the east/west coast.  The only parts of my life you would see would be–

How government services made my child’s life easier
How offended I was when someone said something about my child’s or my disability in an uneducated way
My interpretation of and trust in Bible verses that prohibit sexual encounters between same-sex individuals or cross-dressing
And any conflicts that arose because of said interpretations

Which kinda stinks.  Life tends to reflect art, and since most of the art on TV revolves around sex and government charity, you miss the things that are the core of me.

The penpal for the druggie in prison who doesn’t have the words to make him take her seriously in a world full of shifty cheaters who betrayed him.
Someone who rejoices in her gay cousin’s faith, and ministry, and role in the church, just like she celebrates the call and witness of the poor single moms we all love to fawn over and protect in the church (until their kid is two months old, because, you know, we all had our kids figured out by then)
The young woman who can’t figure out how to minister to her ex brother-in-law after he set her sister’s house on fire.
The former churchgoer who was so excited to see the minister and his wife take in an African-American family with their children to help them recover from addiction, only to find out seven years later that the minister was raping the kids.
The protestant friend of the new “booty call” on paranormal reality TV who is suddenly reevaluating her idea of the ministry of saints who have gone on, purgatory, and her minister father’s catholic childhood…  not to mention the grandfather who passed the day he disowned her school aged dad for going to a different church with his girlfriend, “Mom.”
The nerd who can’t stop researching natural products– because… autism/biomed, and because… well… nerd.
The church member whose heart was broken when the elimination of her husband’s position meant the elimination of her social life, friendships, home, and church life.

There are so many meaningful conundrums that make up human existence.  I’m tired of continuous conversation of disabilities.  I am more than this.  I don’t fit the Dup15q momma bear mold, if there is one.  I mean, yes, we have to arrange our lives around a super duper, and we can play up that stereotype because at least that is the one thing in my life that people aren’t afraid to talk about.  And it’s the thing I’m struggling with least in my life right now.  I wish there was a way to connect with people about what I’m really struggling with right now.  But I can’t find the conversation partner that fits the mold I’m made from.

The perfect(ly mythological) happy family

(for the record, this post is personal.  Long.  I am not asking anyone to read it.  This is for my own joy.  If you take joy in it… well… be my guest.  For the record, it’s long enough that I don’t feel like editing it till later.  You’ve been warned)

My husband and I had a fight yesterday.  It wasn’t an ugly fight.  It wasn’t even an ugly cry fight.  It was more of a run and hide and throw random snowballs fight.  I was fighting a terrible stomachache and didn’t want my husband to know I wasn’t ignoring him on purpose.  He threatened to tackle a project that had been overwhelming me and accidentally throw away something that meant something to me so I’d better come help.

It was all very lovey dovey.

I even called my mother in the middle of it to tell her I just wasn’t making it as a wife anymore and she’d better come get her deliquent daughter.  It was Bryan’s idea.  She hasn’t called back.  I’m not sure if she’s over being dizzy from listening to us…

(My husband wants everyone to know no mother-in-laws were harmed in the making of this fight.  They never are.  We love them)

We fought about whether to ask the church to let us have a therapy animal here in the parsonage.  We fought about whether our daughter should go to sunday school or I should stay home with her so it was easier for us to find teachers for her class (hubby’s the youth minister in charge of such things).  We argued about whether she was integrated at church well enough.  I screamed at my husband because I’d messed up my dish soap recipe by using the hard water to make it and it. was. worthless…..

All this because I thought I was going to come in with a sweeping plan that made my house feel as happy as a hippie commune that follows Jesus.  Bring on the Patchouli!…and, apparently, the transitional, bitter catfights.

The past two and a half years have been spent trying to keep up appearances of normalcy.  As far as autism was concerned, I parented in a way I didn’t like to keep up appearances of being like everyone else, and wasted time doing things I knew half-worked, and half-didn’t.  Keeping a diet method that only worked halfway and giving up one that worked 60%.  I even got as far, at one point, of eliminating all autism diets because the doctors made fun of my “tinfoil hat”– my tendency to treat my daughter’s neurology and life to peace using diet and environment.  Now that I’m a complete tinder box, I’m transitioning more to my real self, and my real ideal of treating my daughter.  The very spiritual, cockeyed version.  You should be warned.  This me is a very real me.  The one you can really, really offend.

The one where I think God planned this whole thing specifically from the beginning.  The one where I met a girl with Down’s Syndrome at the doctor’s office as an elementary schooler and didn’t understand why her brain was stuck on hello but knew she was genuine and alive in there.  The one where I spent several months afterward obsessing about special education, and wanted to be a teacher, and learned different sensory tools and education methods.  The one where I went to high school and got to shadow and volunteer in my small town special needs classrooms and developed a precious friendship that lingers today.  The one where autism was always fascinating.  The one where my music teacher was floored at the progress some kids with autism made on chelation because I mentioned I had a lot in common with people who have aspergers.

The one where I was a psych student and learned a lot about neurotransmitters and scientific research (or so I thought at the time).  The one where I believe Jesus sent me on a journey to be a college student who learned a lot about autoimmune issues from a very allergic vaccine choice mother in 2004–ish.  The one where someone randomly hired me to be an aide in a school seventy miles away in a behavioral disorders classroom because they were… desperate.  Welcome to the world of BD classes, right???!!! haha…poor things

(tip:  Don’t use people as BD aides when they have movement disorders and can’t do motor planning to get out of danger.  Also, when you get bored with seeing them beaten to a pulp by fifth graders, people with dystonia and uneven gait make very, VERY poor canes for children with ataxia telangectasia and chemo nausea.)

The nagging feeling that I could have a disabled child in danger if I stayed in a certain relationship.  The prompting to ask the one I’m in a relationship with, how he’d feel about having special needs kids on purpose.

The camel farm in Germany where they saw progress in kids on Camel’s Milk.  The friends I met when I came home who did GAPS for their own, autism unrelated issues.  The nagging feeling that God was telling me something.

The baby who didn’t cry when they gave her a Vitamin K shot at birth.  Or when she was hungry.  Or when she was tired.

The family I lived with in Germany that told me about a special (Vojta) therapy that trained their “absent reflex” baby to a walking, coordinated teacher in training.  (Du bist der Hammer, auch) and the German Vojta therapist that walked into my house two years, one wedding, and a baby later. (Vojta therapists are so rare in the United States that people travel hundreds of miles to see her.  It was more than coincidence).  Watching Vojta move my child.   Reading Wikipedia articles that mocked the therapy.  Reading articles online that called it torture and abuse.  Watching my child succeed.  Watching a child with severe Spina Bifida learn to walk on time.  Learning to watch real life changes and not just read research.  Seeing the joy of our friends who did GAPS.  Getting to participate in a class on autism because of my baby’s disorder, and earning a stipend from it that rounded out the money I couldn’t make as a stay-at-home mom with dystonia.

I say that God hand-wrote my daughter’s chromosome, and that she was designed.  I also say that she has a disorder that needs treating.  God gave us a good life where we saw his leading in this whole process.  And no, he didn’t keep us so shielded from reality to the point that life was painless.  The chromosome that He gave her is not evil.  But it is mortal, just like the rest of us.  I believe he picked us for this journey, but not as a special trial.  It has simply been a window into the world of God that I’ve been trying to see for a long time.

The good in our life has simply been the experience that we knew .  He gave us just enough of HIM that we have always felt him.  That is the kind of tin-foil hat person I am.  Each of these encounters were the direct result of a path I took in my “indecision” about who I would be when I grew up.  I thought I was going to rush in and rescue some mother who couldn’t handle special needs life because of all this preparation.

Yup, thought I was prepared for this.  (Funny).  And I have been very, very, very blessed.

But reality is not me sitting here glowing every day, joyful at all the progress of our natural therapies.  It’s interrupted by my embarassment and rebellion.  It’s interrupted by my tendency to think other people need me more than my daughter.

Did I mention we’re restarting the GAPS protocol?

I didn’t have any miraculous results last time, but we didn’t remove a lot of toxins last time.  This time, I’m trying harder.  I’ve given up lots of chemicals I didn’t realize I was using.  I reference this study from time to time, and I want to mention my philosophy on it with the fair warning that my philosophy isn’t very scientific.  You should read the study for yourself.

http://www.dup15q.org/research/published-articles/levels-of-select-pcb-and-pbde-congeners-in-human-postmortem-brain-reveal-possible-environmental-involvement-in-15q11-q13-duplication-autism-spectrum-disorder/

And while you’re over there on the dup15q site, please donate to them.  We can’t afford it, and I depend on their research.  It is unique and specific to our daughter and every study they come up with helps me make progress in treating Anneliese.  Yes, progress.  Yes, she’s nonverbal.  Yes, I spent a bunch of time two days ago griping about failure.  But progress.  I know which things I can do to increase the likelihood of a stim based on their research, and I know how to reduce the likelihood of a stim based on their research.  I use general autism research.  Dup research tells me important things like how GABA works in our kids and how maybe adding GABA to calm kids like you do some kids on the MAPS autism protocol, may crank up the extra GABA-A receptors in our kids and cause gobs of chloride to flood the cell and tons of glutamine to overload the cell’s response.  It was a theory, based on their research.

But this is a different study.

Those who have died, who have Dup, and whose families were generous enough to take time in the first 24 hours after their children died to have their child’s brain tissue donated to the autism registry (bless the families, we depend on you) frequently have buildup of PCB 95, a currently banned toxin, in their brains.

Things that we are no longer polluting the environment with.

Things that no longer show up in our brains – because we stopped using them when we found out they cause brain damage.

It’s an interesting piece- a) it argues that we should limit our kids’ exposure to toxins b) it didn’t come close to tackling mercury, which is such a hotbed in the vaccine debate. and c) this is a toxin that we supposedly aren’t exposed to anymore in significant amounts.

… which makes me wonder-

how many things that don’t build up in our brains, do build up in theirs?

how many safe substances are unsafe when your brain becomes a lockbox for all the things the body doesn’t digest well?

….maybe the tinfoil hat ideas that Dr. Campbell-McBride invented for environmentally affected individuals will take a little extra thought on my part?

I tried the diet three years ago.  I’ll never forget the irritating event that started it.  The adorable lambie plate that we used to serve her her meals got smeared in poo.  She had… forayed into the realm I’d been dreading, and she was two.  The kitchen got cleansed, and we started GAPS… poorly.

I read nothing in the GAPS book, never even read the GAPS guide, and tried to piece together the ideas in the book based on online arguments – you know, especially the kind that included page numbers – as best I could.  We figured the preservatives part didn’t apply to us, as we knew what our daughter’s chromosome disorder was, and environmental toxins probably didn’t play a role, but surely her metabolism was messed up so we’d do the diet to straighten out her metabolism.  Piecing together autism biomed in the middle of internet pharmatrolls is a really, really bad way to figure out safe, effective biomed.  You’re better off reading books, the research, and other reviews of the research.  Dr. Campbell-McBride is actually a lot more like our pediatrician than internet trolls make her sound.  She’s just veeeeeery conservative.

And how did we fare on the diet?  Developmentally, Anneliese was up and down all that spring and summer, but did well meeting some goals in that time frame.  One could argue that she developed so well at that time because she was in the happy time of a duper’s life. This is the time when she learned to walk.  I imagine she felt accomplished because of this and tried sign language and other things because she saw herself as successful and a winner (she doesn’t do ABA,  so she doesn’t get rewards, so she doesn’t feel that way about herself anymore and doesn’t approach kids in the limited way she used to back then).  Her development that summer, because of constant up and downs, was subjective.  It was hard to pin down why I felt GAPS was helpful, but most of all, she stopped shivering when she woke up.  That was something that happened to other dup kids in the group and when we did GAPS, it stopped completely.  We don’t know to this day if it is movement or a seizure, but it normalized on GAPS and hasn’t, completely since we went off it.

…Because we moved.  We became the youth minister and his wife, and so became responsible for other peoples’ opinions of whether or not we liked their food or not and whether or not they possibly thought we were punishing our daughter. We decided we’d better let other people do whatever they wanted with our child so that they would think well of us (this was our fault… it’s how we deal).  We went gluten free instead of GAPS.  It helped for a while, then stopped.  And, while Anneliese wasn’t doing as well as before, and lost several imitation skills that she still can’t do, she didn’t shiver *as* often, so I figured I’d best put away my tinfoil hat and act…well… normal.

That doesn’t work well with autism, in case you haven’t noticed.  NOTHING is normal.  And pretending- along with a pregnancy, an added child to care for, and post-pregnancy worsening of dystonia/my ability to clean the house I spend all day in — has me emotionally and spiritually fried.  Not to mention I’m occasionally very resentful of all those unspoken (and in most cases, likely nonexistent) expectations to raise Anneliese like everyone else.

But that’s just it.  Like everyone else?  She IS more fragile than any of the kids at the church.  She wouldn’t be if they had cancer or autoimmune issues, but they don’t.  Even if they did, nothing that helped THEM would do anything for her autism.  Autism is weird.  It teaches us the limits of humanity-as well as the wonder- and it’s frightening to navigate no matter where you think it comes from.  As far as the duplicated 15th chromosome pieces, they DO warn us that our kids could drop dead at any moment (especially if they have seizures, which they have a hard time defining for sure in each kid).  So I’ll do what I think God wants for Anneliese

Besides, I do love my tinfoil hat.  I began it when I was a homeschooler and it now carries 57 satellite channels in other languages.  Especially German.  It’s me.  And I like waking up to talk to myself in the morning (good thing, as hubby’s gone by then and I’ve got two nonverbals in dipes- so I don’t have many options).  I’ve just gotta be the mom God made me.

So are we making progress?  Maybe.  I got word that she was super happy on the bus today.  Maybe we’re doing something good… But we’ve just begun.  Very few dupers have tried GAPS.  Those who have, tried the diet.

We keep telling ourselves and our friends that it’s the genes, and it’ll be fine.  That they don’t need treatment.

… It isn’t that simple.  PCB 95 isn’t a chromosome.  It’s a poison.  And we should be careful what evils we allow to sneak into our homes with the nickname “dup15q”.  Not every effect  we see is God’s handwriting.  Some -like this chemical- is human.  And while God directs our paths through this life, he did not invent every ill.  He directs us through a world of death to his life.  So whatever a full life means for a dup15 kid, I want to go grab it.  And whatever took away my baby saying Mama, or playing in imitation of her friends–

I’ve got my Jesus, his arms are around us.  I rebuke you, and He’s coming for you.  This is my baby, and this life is hers and his to steer… just like it always has been.

 

We give up. Then school comes.

My super duper baby turned 5 this week.  Her cousin had a birthday the week before, and my daughter received her lovely presents at that birthday party.  I didn’t throw one.  I am not sure I know how to any more.   This is the age when tears start to come, and grieving begins, for me.  When I was her age, I was already reading.  While I can’t be sure she doesn’t read (she identifies letters, and sits for ages looking at her books very intently)- she is still nonverbal, and I’m still not a part of her world.  I keep wondering where all the time went, all the time I was planning to do all her therapies and work with her.  I have days where I want to sit down and work with her, but I know we don’t exactly have a food safe kitchen.  Hours pass while I try very hard to make a dent.  She comes for attention, and grabs my hair.  I hear the advisor from my old LEND (Leadership Education in Neurodevelopmental Disabilities) program discussing how parents just aren’t proactive enough about their kids’ misbehavior when they’re little, so it escalates as they get older and it isn’t so cute any more.

The truth is, I want her to touch my hair.  I have nothing else with which to connect with my daughter, and she has no way to connect with me.  We used to use a communication board on the iPad- but she didn’t have 24 hour access to that.  So we got an iPad that she could always access–and then she wanted nothing but the games.   Eventually, she found that her communication app was a great place to stim on mommy’s prerecorded voice- and that was the end of functional iPad use.  I worked so hard to give her early access to these things.  I was a proactive mom, she was a precocious dup15q child and ahead of the game.  Somewhere, though, life got in the way.  The signs she knew are gone.  I can tell she knows what they mean.  She doesn’t use them.

The year she turned two, I thought I was being proactive, and got her an autism diagnosis.  I called around and found an autism school in the state that practiced the Early Start Denver Model.  They said that, by the time she got in, she’d be past three years old, and they wouldn’t have enough time to work with her before she turned 5 and the skills were inappropriate for her.  I decided to work with her on my own.

The teachers have had the same struggle we have at home.  They will do a skill one week in therapy, only to have it disappear for weeks and months.

I just don’t know what to do.  “It didn’t generalize, is all.  She hasn’t lost anything-” the specialist at Memphis tells us.  Really?  You mean to tell me she learns a method of communication that works at school, home, and grandparents home, with a variety of adults, and it’s not generalized?

I’ve failed.  School gets her next year.  Time will pass.  She will become just another autistic kid with parents who failed to try.  I wish I were good enough to homeschool her.  I just want time with my loving child, the quiet one.  She is 5.  She has fewer skills than she had when she was 2.  Some of me wonders if, the way she knows letters, but we work on pointing instead- if she doesn’t see the point anymore.  She tried jumping through the hoops when she was little, and it was never enough, and it’s never what she’s interested in.  School will love her, but they won’t have the individualized time to know her like I do.  I wish they did!  But I don’t know if school can ever engage, or challenge, her, because she’s so stubborn about the things that look like her mental age, and none of her functional skills approach the thing she’s always been interested in- music and books.  But anyway, she’s five, she’s missed so many windows, and I don’t know if I’ll ever get them back