Wednesday, August 19, 2015

What keeps parents of Autistic kids awake at night

Well, to be vague, a lot.

To be more specific, let's take it chronologically.

This is Teen Queen and Baby Queen at 1 year and again at 3 years, just a few months after the first MMR shots, see any differences?

When you have a baby, you have all these hopes and dreams for them. You imagine their lives, their paths, their futures; and for most parents, there will be some adjustments as they grow older and you get to know their true personalities. For parents of autistic kids, especially those who've had kids that changed radically almost overnight, it's like mourning a loss. You have to mourn and let go of the child you dreamed of having in order to accept and love and nurture the very different child you have. The prognosis is brutal. It's gotten better since the girls were diagnosed, there are more services, early childhood interventions, therapies and diets than there were when we started out. Unfortunately, the one thing that hasn't changed is how expensive they are and that most insurance won't cover specialized "experimental" treatments. So if you want to give your autistic child every benefit, you have two options: become as poor as possible so you qualify for government assistance, SSI and Medicaid, or you can spend every last dime on the therapies (speech, physical, occupational, ABA) hoping to give them a break, an advantage, with no guarantees that you'll get much more than basic functionality. Some parents I know with profoundly autistic kids had to face the prospect of placing them in a facility that could handle the severity of their symptoms. That is heartbreaking.


So after you've mourned and accepted that you are now the parent of an autistic child, the real work begins. You research. Everything. And you have to do it balancing hope with skepticism. There are so many scam treatments and "miracle" cures out there, and when you see your child suffering, you'll do anything, buy anything, if it might mean some relief. Once they start school (age 3 for PPCD in Texas), you get to start fighting the school district. You are their best advocate, and school districts love lazy uninvolved parents. I'm the "Oh shit" mom, as in "Oh shit, there she is again." You fight for lower child/adult ratios in the classroom (2:1 is prime, but some larger districts will push a 5:1), you fight for therapies, you fight for inclusion, you fight and fight and fight. Sometimes you luck out and get teachers and therapists that will fight with you, but you still have principals and superintendents, school boards and pencil pushers who resist spending on your special needs kid. Even though the State generally provides the school districts with twice the funds for Special Ed than general ed, they are reluctant to spend that money where it should go. TQ's 7th grade year was an eye-opener for me. I got lazy and they took advantage. Her teacher was going through a summer divorce and had a breakdown during the first week. They brought in a full-time substitute. I didn't know anything about it until I overheard a conversation in the grocery store. The sub not only wasn't a certified Special Ed teacher, she wasn't certified to teach. She basically baby sat TQ, playing on the computer while my daughter stimmed in the corner, 8-3, five days a week for three months. She didn't join her classmates for lunch, PE, Music, Art, all classes we agreed on the previous year. When I found out what was going on, an emergency ARD meeting was called to which I invited an Autism advocate and our family lawyer. The next semester, she had a qualified teacher, and all of the therapies that they had cut back were reinstated to make up for the lost ground. I have not slacked since then.

You worry about bullies; you worry about sexual predators; if you have a wanderer (TQ goes walkabout in the middle of the night), you worry about Amber Alerts. You worry about accidents because they have extremely high thresholds of pain. You worry about the horrible side effects of the medicines that are prescribed to keep their symptoms suppressed so they can participate in life. Both girls are screened for liver and kidney damage every three months because of the meds. Of course, research into medical marijuana is being blocked by Big Pharma, so there's no telling if that will ever be legally available. You worry more about sexual predators when they hit puberty. For you abortion absolutists, try this nightmare on for size. Your profoundly handicapped daughter who is limited in communication skills comes up pregnant. She can't identify the predator, and since she really doesn't understand her own period, how is she going to handle pregnancy and childbirth? I tried to get them on birth control, but because their cocktail of drugs has resulted in a weight problem and BC will increase the problem plus put more strain on their kidneys, the doctor is balking. So I worry. A lot.

Now you're running out of time, special ed kids can go to public schools in Texas until they age out at 21. After that, there are very few programs available. There are some assisted workshops, adult day care, some of your higher functioning can get basic jobs, the very few at the top of the spectrum may go on to college or trade school. But for profoundly autistic adults, there are very few choices and what's out there is beyond expensive. So you start estate planning, if you even have an estate left. It cost $3500 dollars for me to get custodial guardianship of TQ when she turned 18. One of three things happens, they are declared competent and able to make their own decisions, you pay the lawyers to retain custody if they aren't competent to handle their own affairs, or the State takes custody and makes the decisions. There was no fucking way the State was taking custody of my chick. Every year until one of us dies, I have to reapply for $250. BQ will be 18 this November and I get to start doing it for her too.

You worry about how you'll afford to care for two handicapped adults once you retire. You aren't planning retirement for you (and your spouse if you haven't divorced by now), you are planning retirement for your whole family. You start looking into nursing homes that will take you all if necessary. You start looking at guardians to back up the guardians you should already have in place. And you know how many people are willing to take in your autistic kids? Not many. You realize that once you die, your children are on their own, relying on the care of peripheral friends and family at best and the State at worst. You worry about their health, well-being, happiness, quality of life. The older and weaker you get, the stronger and bigger and faster they get. For some like TQ, the more violent their meltdowns get. You worry about people intervening. You worry about trigger-happy police who don't understand Autism being called to a "domestic disturbance" by neighbors who don't understand. I've been bruised and battered after one of Sarah's meltdowns, and as I go through the next decade from 50 to 60, I know those attacks will be more damaging to me. So I worry, when will I have to place her somewhere that can handle her meltdowns? Or do I give in and medicate her until she's a zombie? What should I do? What can I do?

So this is just a handful, a little peek behind the curtain. Say "hey" to some of my demons.

17 comments:

DoubleTroubleTwo said...

Prayers to you and the little chicks! I really do understand where you are coming from. I'm so glad I had you to talk to to help me out with my daughter and alot of the same stuff happens here and I wonder everyday about sexual predators she talks about wanting a baby all the time. I believe Mandy is on the higher end of some of it and lower on other parts. Mandy's melt downs haven't been to bad except for the time I ended up with broke ribs. A lot of times she will say she's running away and take off outside but I finally got her to understand she doesn't go past a pole a little down the road or she's grounded and she loves to watch movies. Angel I'm always here for you, you know how to reach me!! Hugs Chickie!!!

Brad said...

Thanks you for sharing. I pray that God will see your family through all of these immense challenges. The Chicks are fortunate to have someone that cares so deeply for them. On the other hand, you are not personally responsible for all the outcomes ahead. Too much is outside our control so when things go badly, and they do for everyone at some level, take solace in knowing that you always acted out of love and always did the best you could.

Steve Wright said...

Angel prayers to you for courage, strength, and wisdom. You seem to have an abundance and tremendous compassion, but more sure wouldnt hurt.

North Texan said...

You are a hero to me Angel. We are starting the journey with Middle son (who is high functioning but still Autistic). Only daughter has a learning disability with brain damage, and my 2.5 yr old twins are in ECI. When I wonder how we figure it out I come here and find strength in you. The issues we've had don't even compare with what you go through. God bless you friend.

Able said...

I hesitate to give anything that sounds like 'advice' because (as in 'all' long term conditions) you, the patients/parents/relatives 'always' know a d*mn sight more than 'any' alleged 'professional'. But (isn't there always a but?) …

Contraception? 'If' and it's often a 'cop-out' claiming 'interaction' as rationale not to (instead of the hard work of evaluating options and titrating rather than 'going by the book'), there 'is' a medication issue there are always the 'implanted' 'physical' options (coil/cap all the way up to tubal ligation) – yeh, I know you'll already be aware/have considered all of that and other options, but some may not have.

What I, as an outsider, have found is that here at least the 'best', most accurate, reliable and trustworthy 'assistance/support' has 'always' come from (like already illustrated here by other comments) other sufferers, parents/relatives in the same boat and the 'support networks' they set up (the lady I mentioned before with a daughter with Turners has 'linked up' with the, only, two other families in my county with similar for mutual support and to 'team-up' against the bureaucrats. They give better 'respite' and even holiday together as a team – as the 'only' other people who 'really' understand).

It may seem, and unfortunately usually really is, that 'all' the 'professionals' are out for an easy life but most real professionals view those in your, and similar circumstances, as … well heroes (that and, like me, consider the multiple complaints and threats of termination by 'superiors', for 'badgering', 'stalking' and 'intimidation' of bureaucrats at the councils, housing depts., LEA, DWP, SS and even NICE as being 'badges of honour – it isn't my area, A&E is, but in the last ten years I've had the police 'take statements' from me eleven times already – yeh!). So, at the risk of ruining my mucho macho 'street cred' image (what do you mean “what street cred”?) I'll say – here's a song for (about) what 'we' think of 'you':

www.youtube.com/watch?v=WIm1GgfRz6M

pigpen51 said...

Angel,


My own 18 year old daughter was asked by her mom tonight to organize her dvd movies. Now, my daughter doesn't keep her videos in much of an order. No cases, cases with no movies, etc. So, my wife was going to help.

My daughter exploded and stormed out of the house, saying she was leaving, running away, and never coming back. Oh, and pushed my wife out of the way into the wall on her way out. The same wife who had a torn rotator cuff repaired a couple of weeks ago.

I was not amused. We gave her some time to cool off, and expected her to return in an hour or so, but when it got to be much longer than 2 hours, we went out looking for her. No luck, so we went home and reluctantly called the police. I don't like getting them involved in my life, but love my daughter and feared for her safety, with the kind of people running around in areas that used to be safe.

Shortly thereafter, my wife got a call from a church about 4 miles away, saying that my daughter had wandered in to their youth group meeting, and had given them her phone number, and would we like to come and pick her up? Oh, yeah, be right there! Called 911 and said never mind.

Now, my daughter is really high functioning, but will never hold down a job. She has Scizo-affective disorder(sp) possible ptsd, mild Autism, adhd, and they wonder if she might have fetal alcohol syndrome. She was adopted, and so it is hard to know much. Some of the diagnoses are suspect in my mind, but I think that she has at least several of the list. She does really hear voices, which I doubted for a long time, I thought she made them up to get attention, or to control her case workers. I know now that to her, they are as real as two people having a conversation can be.

I have to say how much I admire what you have done for your kids education. We took, in some ways, the easy way out. After fighting the school for a time, my wife ended up pulling my youngest daughter out and homeschooling her, all the way through high school. She graduated this spring. Here in Michigan, it is quite easy to do, at least for now. You don't have to file any paperwork, you don't have to do any special testing or follow a curriculum or be certified.
However, if you wish, the local school might be willing to help you with some things. We chose not to do that, but they told us they would help us if we needed it.

Is the journey hard for us? A little. But I can't imagine how tough it is for you, Angel. Dealing with 2x the difficulty, with 2 different children, I know is not only physically, but emotionally draining. And then for some people to think they could possibly hope to make ANY kind of decision for you has to make your hair turn colors. That is why I, even though I am a Christian, have such a hard time saying that I can tell anyone what to do or think. NOTHING
is ever as simple as you think. If they want to tell you what to do, they first have to carry your demons awhile.


Anonymous said...

prayers....lots of prayers......

vaquero viejo

RB said...

I have a 20 yr old son who has severe panic/anxiety attacks which renders him useless in society. I don't know if he'll ever be able to take care of himself. I have a co-worker who as asperger's syndrome and he is able to function is society more than my son.

In reading all of your stories it makes me realize behind every door down the street there may be a story like ours or yours. And many parents doing their best to care for someone. It's encouraging to get that support even if it's a simple "I understand". Because sometimes you yourself don't even understand.

Hang in there everyone. Heaven welcomes the innocent child we are all raising. I pray you all are blessed too.

wirecutter said...

Angel, you're most admirable trait (besides big titties) is your strength. I love you for that more than anything else.

hiswiserangel said...

I consider all y'all to be part of my tribe, Team Angel. I get so much love and support from you. I share my joy and heartbreak equally knowing you'll laugh and cry with me, and that gives me peace and strength.

Thank you, and big squishy hugs.

And wc, ditto. (not the big titties, but your strength. love you back)

Anonymous said...

family history of? did you REASEARCH before having the child. I actually said no to kids from a certain women when I found autism in her family.
but then again, I am logical. Must be heartless:)

Anonymous said...

Thank you for the peek behind the curtain.
I count myself highly blessed, and offer prayers for your clan.

Former Cub Scout Cubmaster, I dealt with 6 boys and their families,
who all had autism or other disability issues. But I was lucky
enough to have 34 other boys and families to help out if/when situations went pear-shaped.

But I discovered this: those 6 were my BEST Scouts, when their disabilities allowed them. Their Moms were just awesome in supporting their Scouts. And they all showed up for Everything: came early to setup and stayed late to cleanup. Everytime.

I know I didn't see the really bad days.
But I marvel at the parents who DO what You DO.

Keep up the good fight, until the Devil says..."oh,Fuck. She's HERE."

hiswiserangel said...

Anonymous 11:20
I doubt you're either logical or heartless, but I'm absolutely certain you're brainless. Before emphasizing with all CAPS, make sure of your spelling. Also, "women" is plural, "woman" is singular. Stop spending your time trolling and start working on your own issues.

Phillip said...

I don't have much to say, I just wanted to let you know you're awesome.

I have a friend I grew up with who has three sons, two with varying degrees of autism. One she just got the paperwork completed for adult custody of him. People who deal with that level of care really bring home to me that I don't have it that bad.

Keep up your fight, you've got some good people in your corner.

Anonymous said...

My prayers and hopes you find someone who will be able to watch over your kids when you are no longer able to.

Anonymous said...

as I post as Anon..

I'm known as Steve Ronin, I'm the Cubmaster.
Used to blog, but my blog is no more.
anyway.

Anonymous from 11:20 and 5:23..
this isn't 4chan or Reddit.
Go troll somewhere else.
and I hope and pray that Karma bites you in the ass.

Anonymous said...

So much empathy. So little to say. My daughter is in a very similar situation with my oldest grandson. Every word rang true. God Bless you and your girls. And your Husband.