Circling Normal

They Spent Money on This?

2009-01-26T15:55:00.002-05:00

This is a recent study on autism:

“Men who do not find the shape of the curvier woman most attractive could be more likely to father children with autism, according to a study.

Researchers showed 100 men with autistic children pictures of curvy women; women with athletic frames and more rounded women and found that they do not have a preference on which figure they find more attractive.

The new research from the University of Bath suggests that fathers of autistic children do not share the preference of men across the world for the curvier woman.”

Here are the recent statistics:

- 1 in 150 children

- 4:1 ratio of boys to girls

- 1 in 98 boys

- Fastest growing developmental disability

- 100 billion annual costs

- In ten years the annual costs are projected at 200-400 billion.

- Cost of lifelong care can be reduced by 2/3rds with early intervention.

- A family with a child with autism will fund 3 to 5 million dollars of services throughout the lifetime of the child.

- More children will be diagnosed with autism this year than cancer, diabetes, Downs Syndrome and AIDS combined.

- Autism receives less than 5% of the research funding of most of the more prevalent childhood disorders.

- Approximately 1 million individuals in the US have autism.

And someone is spending money on whether or not dads preferred Marilyn Monroe or Olive Oyl?

2008, I knew thee too well

2009-01-02T21:36:00.000-05:00

2008 is over….

Every New Year’s day I try to look forward with optimism to the New Year. This year I won’t. I have decided to consider 2009 a rebuilding year.

I have watched family and friends lose their jobs, their houses and their marriages. I have doctors wanting to subject my children to tests that will be hours of shear terror for them since they don’t have the language skills to understand the tests. The tests are also unnecessary. For once, I hope the HMO refuses to authorize the procedure. (24 hour EEG for a child with no seizure activity who is super sensitive to all sensory input and it took two techs to swaddle him and restrain him for the 15-minute one.) DH had his ankle fused and screwed and is still non-weight bearing. Family does nothing but pick fights with us. Can’t let any get together go by without at least one snide comment.

I don’t know what the answer is but I am beginning to believe that I should hope for the best and expect the worst….seems the best way to keep sane in this world.

So, here’s to 2010…if I play my cards right in 2009, then I can greet you with optimism. If not, well, it will be another rebuilding year. Maybe I’m the Detroit Lions…

Playing Funky Music With Werewolves All Summer Long.

2008-08-26T20:19:00.002-04:00

Is it just me but does Kid Rock’s new song “All Summer Long” start our like Warren Zevon’s “Werewolves in London” and then move to Wild Cherry’s “Play That Funky Music White Boy”?

Community or lack thereof.

2008-07-07T22:03:00.003-04:00

We spent the 4th of July with a friend’s family. We had a big chicken barbeque, tons of good deserts and later, illegal fireworks. This family is one the few that fully accepts our children. No subtle (or not so subtle) put-downs. Just acceptance and help. They actually help us keep an eye on DS2 and DS4, who are runners. I thought about how rare this situation is for us and how our perception of our community has changed since our first two children were born.

Once your child with a disability is born, the community does not know how to react. Should they congratulate you or offer condolences? Since they are unsure, they usually do neither. They talk of “miracle” babies but if the “miracle” is incomplete, i.e. disabilities appear, the child is not longer miraculous but is a hindrance, a parasite on the community.

Your life is filled with surgeries, doctors’ appointments, and therapists’ appointments. You have no time to nurture relationships with family and friends. And, no one cuts you any slack. You cannot just get the teenager from down the street to baby sit. Heck, your own family doesn’t want to deal with your special needs child. Your child makes your friends uncomfortable. It is an “in your face” reminder that there, but for the grace of God, go I.

You are advised to “get over it,” “accept it” and “get on with life.” How can I “get over” my child’s multiple impairments? I live my life knowing that my children will face pain, both emotional and physical, teasing and unacceptance. I spend my days fighting for insurance coverage for therapy, surgery and medical equipment. I’ve been meeting with school officials regarding special education services since my children were barely home from the hospital. Who will advocate for my children when I am gone?

Special needs children are more expensive than neurotypical (NT) children. A basic stroller for an older child with special needs is over $2,000.00. Most insurance coverage has a 50% co-pay for durable medical equipment, such as a stroller. Diapers cost more the older the child is. We reach our lifetime caps on medical insurance sometimes before the child comes home from the hospital. More money goes out so more needs to come in. Both parents feel the strain on their marriage. The divorce rate for parents with special needs children is near 85%! The fear that the marriage might crumble is a very real fear.

Our neighbors in the “community” don’t want group homes in their neighborhoods. Zoning restrictions define “family” and limit the number of unrelated persons who can live in the same dwelling. Not in my backyard! We don’t want “those” people in our neighborhood.

Our community claims that all life has value. That our children have value. But, our community does not value our children. We are not welcome in homes, in churches, in schools, or in neighborhoods. We are hissed at in stores to “make our children behave.” We are muttered at in restaurants if we try to act like a normal family and have a night out. People won’t sit by us at fast food restaurants and they pull their children away from ours at the park. Isn’t it sad that as a society we have lost that sense of community? It is not enough that NT children be allowed to participate, go to school, attend church, and maybe even be a basketball star. Those opportunities must be open to the child with disabilities as well. That is the gift of community.

Snidley Whiplash

2008-06-04T20:59:00.002-04:00

I have a job. I throw people out of their houses after they have been foreclosed on. As you can imagine, it’s scads of fun. Nine times out of ten, they know it’s coming and they don’t even show up at court. Occasionally, the “owner” didn’t make his payments but s/he had the place rented out to unsuspecting tenants. So, s/he pocketed the rent, and left the tenants to spin. And, the banks or mortgage companies also contract with realtors to get the locks changed and the places ready for re-sale ASAP. Sometimes, the realtors try to “hurry” things along by turning off utilities or changing locks, thereby exposing the banks and mortgage companies to liability for a wrongful eviction. (The technical term in my area is constructive eviction). It also exposes me to the wrath of the judge since I’m the representative who gets to explain “why” the bank tried to hurry things along.

As you can imagine, business is good. I do about 400 a month. I tell you this to show you the enormity of the situation. Lil’ ol’ me makes about 400 families homeless a month. Actually, most have moved on and show up to court because they feel a sense of duty to come, they are curious, or they want to vent at me. Only one has wanted to punch me out so far. One homeowner “turned the matter over to the Lord Jesus”. She wanted $100,000 to call Him off or “He will strike (you) down and (you) will spend eternity in hell for (your) actions.”

However, I have been able to help a lot of people. In my travels I have met several families with special needs children who did not know about some of the services and benefits to which they were entitled. I have also successfully referred many people to bankruptcy so they could get a fresh start. I also joined a community action board that helps with utility payments and other housing services so I could make informed referrals for people. Ah, maybe I’m just rationalizing.

Do You Have What it Takes?

2008-05-18T11:18:00.003-04:00

This is not my list but I love it anyway. I have no idea where it came from so I apologize in advance to the original author.

What it takes, besides patience and love, to be the parent of a child with Autism:

1. Scientific researcher.
2. Education advocate and educator.
3. Insurance specialist.
4. Herbalist and dietitian.
5. Doctor.
6. Lawyer.
7. Shaman/Witch Doctor.
8. Expert negotiator and arbitrator (Think IEP).
9. Political lobbyist/activist.
10. Speech and letter writer.
11. Lectures "R" us.
12. Internet explorer.
13. Book reviewer.
14. Biochemist.
15. Play date party organizer/caterer and referee.
16. Web site designer.
17. Assisted technology and software reviewer and beta tester and inventor.
18. Never ending explorer of ways to say "GOOD JOB!"
19. Crisis intervention specialist (Talking your spouse or other parents off the tower).
20. Marathon runner. Stamina and world-class speed.
21. Tae Kwon Do expert. The defensive prowess of Bruce Lee.
22. Disney movie cataloger/VCR Mechanic.
23. High angle rescue specialist (How in the heck did she get on the roof?)
24. Builder. Get me my patch kit honey there's another hole in the wall.
25. Tough guy with a good chin. You know like Rocky.
26. Make up artisit. You should not be able to tell or care if you’re having a good or bad hair day.
27. Advertiser/campaigner (Therapist wanted flexible hours etc......)
28. Navy SEAL, complete with high sleep depravation threshold.
29. Low sensitivity to screaming and/or loud banging noises.
30. Maid. Man, do I love to do laundry.

You're Going to Need a Bigger Boat

2008-03-24T21:14:00.002-04:00

It has been a crazy few weeks. I came home a little early from work the other night, about 6:00 p.m. DH, the in-home respite worker and I were trying to decide on dinner. For some reason, I looked over at DS #2, who was at his usual seat, on the bar stool, watching videos on the laptop. Normally, (or perhaps I should say “usually”) he replays a small segment over and over and over…. For whatever reason, I looked at him and noticed that he was drooling onto the keyboard. He was slightly hunched over it, but that is not particularly unusual since he is legally blind and often puts his face right up against the screen. The drool was unusual.

We had just been looking at pictures of when he was 2 and 3 years old. He still drooled then and almost always wore a bib. DH and I had congratulated ourselves on getting his oral motor skills strong enough that he no longer drooled, or if he did it was very minor and when he was excited. So, I was a bit chagrined to see the drool stringing from his mouth to the keyboard. I grabbed a towel, wiped his mouth and asked him why he was drooling. He didn’t pull away or object when I wiped his mouth, so I grabbed his chin and looked him in the eye, to repeat the question. Then, I said, “OMG, he’s seizing!” DS #2 was quite ashen, his carotid was just bulging and his stare was vacant. When we couldn’t bring him around in a minute or so, we laid him on the floor and began to document the seizure. Since, a few months ago, the school claimed that DS #4 was seizing, we knew the questions that would be asked. After 10 minutes, I called the doctor.

Of course, I got the new doctor. I had to go into my brief litany of 25 weeker, profoundly autistic, severely mentally impaired, blah, blah, blah. She made me call 911. So, eventually I had a sheriff deputy and two EMS units at my house. By then, it had been 35 minutes and he was coming out of it. But, we had to go to the ER, which I dreaded. After reading so many ER blogs, it seems that most ER workers despise the people whom they serve. Especially those who arrive by ambulance when there is no trauma. I didn’t want to go but I had to per the pediatrician. So, I rode shotgun.

You might think that the ER doctor would appreciate the fact that we had 3 adults there and had documented the event but noooo. I used the word “Nystagmus.” So, then the Munchausen’s by proxy questions started. Like I enjoy coming to the ER. I’ll have you know that this is only the second time that I have been to the ER with a child in the past 12 years. I know it’s unusual to have 4 kids with autism but professionals have diagnosed all of them. The kids are rarely sick but when they do it, they do it big. Last time we saw a specialist, I got chastised because there was “nothing” in the file. Just 4 well child check ups and a pre-op physical before dental work done under anesthesia for my then 4 year old DS #4.

I do learn about my children’s illnesses so I know what’s going on. I guess you can’t win for losing. If you learn about your children’s issues so you can have an intelligent conversation about them, you get accused of Munchausen’s. If you don’t learn, you get accused of neglect. Oh, and I know the term "Nystagmus" because it’s part of sobriety tests performed by the police. But, I didn’t even want to go there. I prefer the ER to NOT know that I am an attorney by trade.

We had labs drawn, had a CAT scan since he wouldn’t stop vomiting, and then went home. Of course, the ER doc called the pediatric neurologist during our ER visit and the neuro told me to follow up with his office. When I called to follow up, the office wouldn’t give me the time of day. They said it was impossible that the neuro told me to follow up directly. And, there is no other pediatric neurologist in the area. The pediatrician got involved and took care of it. See, this is where I get annoyed again. I’m looking for cooperation people, not obstructionism.

So, the EEG is set for this week. That will be scads of fun! An almost non-verbal 12 year old, who hates to have his head touched, having an EEG. At least I’ve been through it in the last 6 months. I’ll tell you though; after seeing this seizure, there is no way that my younger son is having seizures. No one would miss this. This would scare the pants off you. It did us and we KNEW it was a seizure.

On the up side, I had a great conversation with one of the nurses at his school. There are 4 RNs at the school and probably over ½ the kids there have seized at one time or another. She’s got it set up so that if he seizes at school, they will call a stat. All 4 nurses will come down and document the seizure for us. If, in their opinion, 911 needs to be called, they will call. Otherwise, they will document the seizure and let me know. They also have oxygen available if needed. If he begins to seize regularly and needs oxygen regularly, then they will have us get a prescription. She also told me that many of the students seized once or twice during puberty and haven’t seized since. For some of those kids, it’s been 10 years. So, we feel that this may be a one-time deal. No meds at the current time.

Just when you thought it was safe to get back into the water…..

"Acceptance" is NOT the Same as "Giving Up"

2007-12-13T15:08:00.000-05:00

Stacy over at The Preemie Experiment asked about “Settling In.” You may wish to call it “Acceptance.” When do you “admit” that your life is not “normal” and it’s “OK” (that’s it’s not normal)? I’ll post an abbreviated version over at TPE but I decided to explore it here, more fully, based upon our “latest” shoe-dropping event with our youngest developing a seizure disorder.

I’ve always felt that there was a fine line between “acceptance” and “giving up”. I never wanted to say, “would of, could of, should of.” So, tying in with alternative therapies, we tried a ton of interventions with our preemies. Especially in the autism arena. We did diets, supplements, chelation, Wilbarger protocol, physical therapy, occupational therapy, early intervention, etc. I still belong to several on-line groups and I follow the “latest” break throughs because I have not given up. But, for the most part, I have accepted that my life, basically, sucks. DH and I have a depraved sense of humor and maybe that helps.

My youngest DS, by one minute, has decided to develop a seizure disorder. The school called us about a month ago describing what sounded like seizures. We dutifully made a trip to the pediatrician who agreed with all involved. Now, DH and I have never seen one of these seizures. They are only happening at school and by the time I get there, the seizing is finished. But, the teacher, speech therapist, principal and para-pro (that’s “teacher’s aide” for the uninitiated) have all witnessed them. We log the seizures and report them to the doctor.

Since we have the “world’s greatest” health care here in the United States, we are, of course, on a waiting list. We can see the pediatric neurologist in February. We did get an EEG (boy was THAT fun!) done a couple of weeks ago and we have an MRI scheduled for the day after Christmas. (Hey, I’m not doing anything.) I’m torn between wanting the tests to show “something” and for them to show “nothing.”

Early this morning, 2:32 a.m. to be exact, DH and I were woken out of a sound sleep by what sounded like a huge temper tantrum from DS. He was screaming, crying, stiffening, arching, hitting himself, tightening up his stomach muscles, grunting, etc. Of course, we have cathedral ceilings and it was just echoing through out the house. These “tantrums” would cycle. The behavior would last for a few minutes, then it would stop and he would start to drift off to sleep. And, it would start again. I knew it wasn’t a tantrum because he wasn’t pushing me away or kicking me, which is his typical behavior when tantruming. He id not have a fever. Finally, I called the doctor at 3:00 a.m. That’s the first time that I’ve called in the middle of the night in 10 years. I wanted to know if I could treat this as pain and give DS some Tylenol. We checked DS out for a few “bad” things and then got the blessing to administer Tylenol.

Now, while this was all going on, DH and I sat on the couch and brain stormed what could be wrong. Kidney stones? Couldn’t be an ear infection, he’s never had one. Teeth? He was just at the dentist. Stomachache? Constipation? UTI? We very calmly and rationally ran through a list, discussing the pros and cons while we tried to comfort this screaming child who is non-verbal due to autism. Finally at about 3:30 a.m., he settled down and went to sleep. Whether the Tylenol helped, I don’t know. We kept him home from school today.

While I was trying to get back to sleep, which in my situation takes all of 5 minutes due to sleep deprivation, I wondered about his seizures. I have a friend who has grand mal seizures. Huge nasty things where he bites people and hurts people if you physically get too close to him. Law enforcement has been involved on occasions when the dispatcher has sent the police rather than a paramedic. He has no memory of what he does nor can he stop it while he’s engaged in the seizure. So, I wondered, could a seizure in a toddler manifest itself as a tantrum?

This morning, I “Googled” toddler seizures and found this:

Gelastic seizures are brief outbursts of emotion, usually in the form of a laugh or a cry. They may be accompanied by forced eye movements, chewing or grinding the teeth, tonic posturing, and clonic jerking. The person may appear confused and/or dazed during and after an episode. Gelastic seizures usually last 5 to 60 seconds. The person may remember them clearly or may be completely unaware of what occurred.Gelastic seizures are both unpredictable and unprovoked by the person's surroundings. They are abrupt in onset and quickly over. Gelastic seizures may occur nocturnally, waking the person from sleep and leaving them exhausted.Research shows that gelastic seizures often occur in people who have a (often maternal) family history of migraines.Dextroamphetamine, primidone, and phenobarbital, sometimes in combination, may be prescribed to control gelastic seizures.

Wow. I have migraines. The seizures described by the school last 5-10 seconds. He rolls his eyes back in his head. He arches and stiffens. He also has inappropriate laughter.

Now, I ask you. How many parents could sit, debate and brain storm their child’s situation at 3:00 a.m., briefly consider a grand mal seizure masked as a tantrum, go back to sleep, and follow up with it on the internet the next morning after all the kids had gone off to school, if they had NOT “settled in” or “accepted” their children’s disabilities? Or maybe I’m just the cold hearted b*tch that the family wants to make me out to be. While my life does “suck” for the most part, it does not necessarily “suck” to be me. I think there is a huge distinction.

Irritated Does Not Equal Stress

2007-11-17T20:03:00.000-05:00

Surprisingly, I am not a stressed out person. I am easily excitable. I do have a tendency to “let my feelings show.” But this life I live, is all I know. My first two babies were born 15 weeks early. If you really want to try to conceptualize a 1 pound 6 ounce baby, go buy 1 pound 6 ounces of hamburger. Then, try to make a baby out of it. The boys spent 100 and 114 days in the NNICU. And, even after discharge, there were still issues. They came home at the end of November, right in the middle of cold and flu season. One good virus would have put them right back into the hospital. And, since that time 12 years ago, my life has only gotten more complicated. I don’t know “normal.”

See, I don’t think that I’m under a lot of stress. I sleep just fine every night. If I have a restless night, it means that I am getting a cold. It’s always been that way. But, I go to bed at a fairly reasonable hour and I’m out within 15-20 minutes. I wake up when the alarm goes off and I start my day. I do consume way too much coffee. According to my doctor and my blood work, I’m in excellent condition in spite of the fact that I could lose about 20 pounds.

But, I do get irritated. Especially when people assume that I must not be able to keep up or that I’m stressed out. I wouldn’t say that I get easily irritated but I get irritated at incompetence and laziness. Partly because I feel that if I can handle my load and stay on top of everything in my life, then why can’t YOU (whoever you are) stay on top of your life? I feel like I am constantly doing other people’s jobs. If I refuse to do someone's job and get irritated that I have been asked, then I am accused of being too stressed. Or it’s even worse if I demand that they do their job.

Case in point, my mother passed away and her condo is on the market. I am the executor of the estate. My brother wanted to use a friend of his as the realtor. Since I had no one particularly in mind, I agreed and asked him to have her call me. Well, he jumped the gun and had her list the house. Nit picky point here, he has no legal authority to do this. Now, the realtor should know this. I didn’t make an issue of it because the house was listed, who cares? However, it’s been since July and she has not called me once. I called to discuss the listing and replacing some flooring. Got her assistant, left a message. She never returned my call. Then, she set up an open house. She asked my brother to have ME call HER re the open house. So I did. I asked about the flooring again. She wants me to replace the flooring. Fine. But, until it’s replaced, I want the on-line ad to read that there is a generous flooring allowance. Still, two weeks later, the on-line ad has not been updated. She held the open house; she did not call me to let me know the status. Now, she wants me to call the next-door neighbor because the neighbor supposedly has a friend who is interested in the condo.

So, I’m supposed to find her a buyer, turn the buyer over to her and give her a commission? Am I missing something here? Plus I talked to this potential buyer in June of 2007. While the neighbor thinks that her friend may want to buy the condo, that’s not the way the friend presented it to me. And, the friend went though the house. She should have the realtor’s contact information. Or, she could get it off the sign. Oh wait; there is no sign because the realtor didn’t follow up with the condo association to get authorization to put a sign in the window! But, now my little bro is upset with me. He wants me to be “proactive” and call the realtor and tell her I’m unhappy. I would, if I was interested in keeping her. But, she hasn’t bothered to send me the “listing agreement”, hasn’t called me to see if I’m pleased with the job she’s doing, hasn’t updated the ad, and hasn’t returned messages that I have left. I’ve never had a realtor like this before. The two that I used previously, who are no longer in the business, made life easy for me, the Seller. I’m irritated because the realtor wants ME to do HER job. But, I’m not stressed out.

One of the reasons that I’m generally not stressed is that years ago I quit dealing with people who were obstructionists. If you do not make my life easier, then I do not deal with you. The kids’ previous dentist was not helpful in dealing with children with autism, so we found a new one who is. My eye doctor of 20+ years decided that he could not longer fit my mentally impaired child for glasses. Goodbye doc, hello Pearle Vision. (Note, a pediatric ophthalmologist examines his eyes; all I need is someone to buy the glasses from.) We had a similar issue with DS 1 and 2’s psychiatrist. We now have one that we love.

I guess I thought that I was the customer. While I don’t believe that the customer is always right, I am the one who should be being catered to. So, I do get irritated but I’m not stressed. There is a difference.

Twins Reduex

2007-11-08T11:05:00.000-05:00

My husband and I thought long and hard about another pregnancy. I was almost 40 and he, while still working, was afflicted with a chronic disease. But, we had twins that were disabled. And, only one NT child, our daughter. We thought it might be a good idea to give her a sibling to help her keep an eye on these boys. While we did not and do not expect her to feed and house them, someone needs to keep an eye on them. Someone needs to insure that they are not abused or taken advantage of. And, it’s been made very clear to us that we cannot expect anyone in the “family” to help. They can’t “handle” it.

So, we bit the bullet and went for it. And, in spite of it all, we were excited when it looked like a second set of twins. That meant the NT’s would outnumber the ASD’s! I carried pretty much to term, 37 weeks, and the boys were born weighing 6 pounds 2 ounce3s and 7 pounds 9 ounces. No NNICU this time.

Within weeks we suspected that the younger one, by one minute, had autism. He was just too much like our second son. By 7 months, we were certain. Still we waited until he was just over a year before calling in the Special Education people. When I called I was given the usual spiel about sending out a packet, fill out the questionnaire, return, they will review, blah, blah, blah. The next day I received a call back, basically stating that the director of the program said that if twinsx2 thinks that her boy or boys have autism, skip the initial step and set up the home visit. And so, the whole process started again.

Once again, we have two at opposite ends of the spectrum. As much as I hate the terms higher and lower functioning, they do serve their purpose to the under-educated in the field of autism. The younger one claps and rocks, has no speech and throws tons of tantrums. He is a destructive force. The other day, he dug into my plant and threw dirt all over my room. I have cleaned the carpet 3 times in a 7-day period. Yes, I know I should get rid of the plant but silly me, I thought I could have ONE plant. The plant is taped up, too. I use clear packing tape over the pot in an attempt to keep him out. Now, I will try moving it up to the dresser.

While I was cleaning up the dirt, he got into the refrigerator. I had just made some Jell-O, which was still liquid. It was in a sealed Tupperware bowl. No matter, Black Cherry Jell-O all over the kitchen floor. Later he screamed at us for over an hour for what we have still to figure out. Since he eats with his fingers, he adds to the need to wash the walls once a week. On the plus side, at this age with DS number 2; it was poop that was smeared all over. I’ll take dirt and Jell-O over poop any day! We were just approved for some in home help with him as well. Hopefully with the extra help, he’ll start using silverware and maybe even his words. I think he has the ability to learn to talk. We’ll see.

His older brother, by one minute, will need a kidney transplant one day. We are looking at some preliminary surgery to “clean up the plumbing”. He has hydronephrosis due to reflux. Of course, he has the worst reflux you can have, Grade 5. He is also double implanted meaning he has 4 ureters rather than just 2. One kidney was destroyed in utero, the other is ½ gone. I’m expected to be the donor but of course I have no health insurance. So, no one is keeping me healthy, except for me. Hopefully I can get a doctor to give me a physical this year but I have a hard time finding anyone to see me without insurance, even when I offer to pay up front. I received a small inheritance so I’ll spend some of that getting a check up. I also give plasma twice a week so I know some of my levels like protein, iron and hematocrit are fine.

Otherwise, DS number 3 is on track to attend Pre-K as a general education student. He will be much like DS number 1 except that he is more social.

So, that’s my family. Four very cute boys, all on the Spectrum. Making life a bit crazy for all of us. The ultimate question is that with 4 boys on the Spectrum, you’d think that we would be very popular with the researchers. These are all my biological children. My understanding is that there are 16 families in the US with 4 children on the Spectrum. Why are the researchers not beating a path to our door?

I'm Not Ready!

2007-10-11T15:11:00.001-04:00

I’m tired. Tired because one of my wee ones with ASD has been waking up at 3:30 a.m. He’s not quiet. He runs around, turns on the lights, gets an apple, plays with noisy toys, etc. But, in spite of the fact that I am tired, I am also grateful about one little item.

Periods.

You see my 4 children with disabilities are boys. My daughter is NT. I thought about this today when I got a call from school. My daughter fell from a climbing device and caught her, er, crotch on a bar. The secretary called because my daughter reported that she was bleeding. I thought, “God, she’s just 9. It can’t be her period.” It wasn’t. She had injured herself in a delicate place but it’s minor and she’s fine. But, I thought about all my friends with daughters with special needs who have either reached that age or will be coming of age soon. And, I’m grateful that it is one thing that I won’t have to deal with.

When I thought that I would never get son #2 potty trained I decided that we would do laser hair removal. I was not going to be digging poop out of pubic hair. Sorry if that disgusts anyone but that’s when you lose your help. No one wants to clean up after an adult who cannot control his or her bowels. Dh agreed with me. We would do laser hair removal if training was unsuccessful. Thankfully, by age 9, he was fully potty trained. We still need to wipe him but so far, no issues.

So, back to my daughter. I’m going to have to start getting her ready, though. I guess that I keep thinking I have time since I was 13 before I got my first one. However, I was ready. Between “health” class, “Are you there God, It’s Me Margaret?”, and “Ann Landers”, I was ready. Darling daughter was born at full term weighing 9 pounds. She’s beautiful. She had dark brown eyes the size of dinner plates and lashes about a foot long. She’s creative, loves to draw, paint and do crafts. She’s coping quite well for being smack dab in the middle of two sets of twins, all with autism. She loves Hannah Montana. Interestingly though, her favorite songs are: Livin’ La Vida Loca-Spainish version, These Boots Are Made For Walking-Nancy Sinatra, What Have You done For Me Lately-Janet Jackson. I’m really not ready for this. She’s growing up and she’s my only little girl.

When All Does Not Go Well

2007-09-25T10:13:00.000-04:00

Over at The Preemie Experiment we are talking about brain bleeds, IVHs. A brain bleed in a preemie can result in neurodevelopment disabilities (such as cerebral palsy), cognitive impairments (mental retardation), learning disabilities, and autism.

My second oldest son, by 4 minutes, did not have a brain bleed. In fact at age 2 he had a MRI, which was “entirely normal.” Yet, he has a severe mental impairment, severe autism, mild CP and is legally blind. He has some language. He can ask for “pizza”, “bread”, “suckers”, and “water.” He will ask to take a bath or to go to bed. Occasionally he puts his clothes on the right way, although more often than not, they are on backwards. Including his underwear! He was fully potty trained at age 9, one year ahead of our goal of age 10. He is not the poster child for a successful outcome in the NNICU.

What a ride he had in the NNICU. At two weeks, he perforated his bowel and needed an ileostomy, which was reversed when he was 99 days old. Clearly, having an ileostomy is very stressful. Within hours of his reversal surgery, he came finally off oxygen. He also transformed from a very placid, mellow (perhaps exhausted?) baby to a much feistier one. Not having his bowels connected took the stuffing out of him, literally as well as figuratively.

At five weeks his PDA reasserted itself and needed to be surgically ligated. The doctors also inserted a Broviac central line. Later, they found yeast in his blood. He developed inguinal hernias, which were surgically reduced at the same time his ileostomy was reversed. Finally, when he was 107 days old, he had laser surgery for his ROP. At 114 days, he came home. No oxygen, no monitors, no meds. He sat up at 6 months adjusted, crawled at 10 months adjusted and walked at 12 months adjusted. He echoed his first word at 4 ½. He began using some meaningful language at 6, if you can call saying “shelf” for “open” meaningful.

Today, he attends a center-based school where he has access to a pool for hydrotherapy, horses for hippotherapy and a well-equipped sensory room. He has been a student at this school since 2 ½. He is now 12.

On the other hand his twin brother, who had a small brain bleed, is fully included in a general education classroom doing grade level work with no accommodations. Son number 1 weighed 1 pound 6 ounces; son number 2 weighed 1 pound 7 ounces. Both were 25 weeks gestation.

Two babies, two very different outcomes.

Why Circling Normal?

2007-09-10T10:03:00.000-04:00

I had intended to move on to discussing my second oldest (by 4 minutes) but instead decided to explain why I named this blog “Circling Normal.” Helen Harrison, who is one of my heros, very eloquently described the coping mechanisms of parents of children with disabilities. She called it “Making Lemonade” after the popular saying, “If Life Gives You Lemons, Make Lemonade.” I call it “Circling Normal.” Since there is no way that I will ever be as eloquent a writer as Helen, I am reprinting her essay here. The link to Helen only describes one of her contributions to improving the lives of premature children. I would need to devote a separate blog to the remainder of her contributions. Perhaps I’ll ask for her CV.

Making Lemonade: A Parent's View of the Quality of Life Studies
by Helen Harrison (published in 2001 in the Journal of Clinical Ethics)

***
"It is a mistake to confuse coping mechanisms with quality of life."
—Carolyn Daniels, Ph.D., social worker, McMaster University Hospital, 1985-1995
***

COMFORTING LIES

Upon becoming parents of a disabled or “high-risk” child, one of the first things we learn to do is lie—to our friends and family, to the doctors, to our child, and to ourselves. We quickly learn that others do not want an honest answer when they ask, “How are you (or your child) doing?” and we oblige by giving the positive and politically correct answer.

“When I mention Andy’s condition,” writes Jennifer Hamilton, mother of a retarded child, “I can almost count on the response: ‘But he’s happy, isn’t he?’ It isn’t merely a conventionally polite question; I sense real anxiety behind it. The ‘dumb but happy’ notion is one way of avoiding confrontation with painful and complex realities. But it is not really the questions people ask that disturb me as much as it is my reaction to them. Because I am aware of others’ need for reassurance I find myself offering them the comforting lie, ‘Oh, he’s just as happy as can be.’ Then I smile confidently and change the subject.”

We don’t lie just to reassure others. An arguably more important motive is the need to comfort ourselves and give positive meaning to the immense physical and emotional difficulties of our lives. We refer to our children as “miracle babies.” We want to believe that we have become “better” and “braver” through participating in their medical ordeals and developmental struggles. We are “special parents” to “special children.”

We lie to deny, or at least postpone, unpleasant realities. We believe that our children’s problems can be overcome with therapies, interventions, and, of course, the “right” parental attitude. If we play our role with bravery, all might end happily. Our children’s doctors and therapists instruct us in euphemisms: our children do not have cerebral palsy or autism, they have “tight muscles” or problems with “sensory integration.” Our children are not retarded, but “developmentally delayed.”

Disability rights advocates caution us against using phrases that begin with the words “suffering from,” even when our children’s conditions involve substantial pain. We learn to keep a straight face when we describe our children as “handi-capable,” “not typically developing,” or “severely differently-abled.”

But, in private, we still feel guilty and ashamed. Our bodies or our genes have somehow malfunctioned and, as a result, our child and family must now cope with painful consequences. In public, we cringe as strangers try to stare past our child’s odd behavior, strange appearance, or bizarre and complex medical equipment. We suspect they are thinking: “What did that mother do wrong?” “How much of our tax money goes to support these children?” and “I sure am glad that isn’t my child!” We feel an urgent need to defend ourselves against our harsh inner judgments and those we suspect others make about us.

Helen Featherstone, mother of a child with severe disabilities, writes that most parents of handicapped children “resist any interpretation of their lives that would convert them into objects of public pity. Like the disabled themselves, they are, they keep insisting, ‘leading a life.’ ” We assume our bravest face to tell the strangers in the supermarket or the doctor’s office (the ones who dare to ask) that we and our child are doing just fine, thank you! “I have known mothers so conditioned to being brave,” writes Hamilton, “that they have practically convinced themselves that their child’s disability is a blessing.” Some of us, wishing to extend these blessings to other families, support “Baby Doe” legislation.

We try to raise the self-esteem of those of our children who are able to understand the concept, by reminding them of their heroic fight for life and by encouraging them to accept and embrace their “challenges” with pride. The guilt we feel for being the agent of the damaging conditions of their births—and the guilt our children feel toward us for being the cause of pain and upheaval in our lives—adds poignancy to these efforts. One mother of my acquaintance told of repeatedly trying to convince her daughter to be proud of having been a miracle baby. But when the child was given a school assignment to write about the one thing about herself she would change if she could, she wrote a bitter essay about her premature birth.

Nevertheless, the familial and societal pressures on our children to think positively are strong. Prematurely born teenagers and young adults have told me of their need to appear brave to protect their parents from further pain. They also worry that if they openly express grief or discuss their frustration and pain, it will be viewed as an act of disloyalty by others in the disability community, a culture that “celebrates disability” and scorns the notion that handicapping conditions might cause problems beyond those imposed by social prejudice. Eventually most children with disabilities, like their parents, learn to put on a brave public face.

There are, of course, a few parents and children who insist on revealing the uncomfortable private truths of their lives, but they do so at their peril. “In this relentlessly upbeat culture,” writes Featherstone, “it takes courage to confess to personal despair.” One young man featured in a documentary on retinopathy in premature infants discussed the difficulties he had personally experienced from his blindness and stated that he would not want a premature baby of his own treated in a neonatal intensive-care unit (NICU). He was severely rebuked for this opinion by other blind adults. Adults who speak with candor about their disabilities have been driven off Internet support lists and ostracized by their peers. Parents who express unhappiness about the conditions of their children’s lives (and their own) may find themselves barred from support groups for “negativity.” Physicians and therapists label such parents as “angry” and “embittered” and refer them for counseling and even for investigation as potential child abusers. Parents who express their despair in public, especially if they question the ethics of aggressive treatment for extremely premature infants, are accused of being “bad parents” and “prejudiced against the handicapped.” Some mothers and fathers have told me that for speaking out they have had their jobs, and even their physical safety, threatened. It is clearly dangerous to challenge other people’s coping mechanisms.

Parents often tell me that they are afraid to speak out in public lest their sentiments be misinterpreted. They fear accusations that they do not love their child, accusations that would only cause their child and family further pain. “The only parents who can speak candidly,” a NICU nurse and mother of a preemie told me, “are those whose children are too disabled ever to understand.”

But parents of more severely disabled children have their own set of silencing fears. “We have to beg for every service and every bit of equipment our child gets,” states the mother of a multiply handicapped preemie. “There is no way in the world we could afford this on our own. We are totally dependent on the people at my child’s special school for his care. If we were to speak out about our true feelings, there would almost certainly be reprisals against our son and ourselves.” Other parents hesitate to make public statements because they depend for ongoing treatment on the same hospital and doctors who saved their child’s life, and they fear alienating their child’s medical caregivers.

The comforting lies (or the failure to tell the uncomfortable truth) are not simply emotional coping mechanisms for many of us. They are practical necessities if we want our children to get proper medical and educational services.

But the comforting lies are in constant tension with the facts of our daily lives, and, as we and our children grow older, cracks appear in the cheeriest facades. “Delays” become “disabilities,” and the struggles we had hoped were temporary are finally acknowledged as permanent and irremediable. Disillusionment and burnout take their toll. In a few tragic cases, we snap—as have several Canadian parents recently involved in mercy killings of their severely disabled children, and as did the Kelso parents of Philadelphia who abandoned their disabled, prematurely born child at a local hospital. A New York Times article about the Kelso case quotes Beth Gage, mother of a handicapped 17-year-old son, who comments with unusual candor: “People put up a good front in public, acting like everything’s hunky-dory, but behind closed doors they fall apart. I can’t tell you how many times I’ve felt like quitting.”

Most of us, fortunately, do not act on our despairing secret thoughts. But behind closed doors, after a few too many drinks, or in the darkened parking lot after a support group meeting, the truth comes pouring out. The conversation begins with the obligatory, “I love my child dearly. I am so grateful to the doctors and nurses who saved him, but. . . .”

We Interrupt This Broadcast...

2007-09-01T17:13:00.000-04:00

Oh my gosh! What a Big Ten football day. The Spartans won! That makes me a happy Spartan. I’ll take my wins where I can get them. I sat through the Muddy Waters' years. But the real shocker is the U of M game. Gosh, almost makes me cry.

Fall is in the Air

2007-08-31T11:52:00.000-04:00

Fall is in the air. There is nothing better than sitting in a stadium, drinking an overpriced hot chocolate (preferably spiked with a bit of peppermint schnapps) and watching a football game. However, fall also means back to school. And for me, back to school means 4 IEPs.

My oldest, by 4 minutes, was a preemie born at 25 weeks gestation. He weighed 1 pound 6 ounces and spent 100 days in the NNICU. His stay was relatively uneventful. (I can see the neo right now, clutching his chest near his heart and gasping, “Uneventful? I was dancing on the head of a pin!” But, I said “relatively.”

He did have PDA, which was closed with medication. He had a small brain bleed, which resolved itself. And, ROP, which also resolved on its own. Today he is in the 75th percentile for height and 50th percentile for weight. Since kindergarten, he has been fully included. This fall, he enters 6th grade where he will continue to do grade level work with few accommodations. (He gets to go to the resource room to take tests if he is too stressed out.) Also, this will be his second year singing in the choir and his first attempt at band. He will play clarinet.

Given these accomplishments you might be surprised to learn that it takes all my will-power NOT to be a helicopter parent. He does get teased due to some of his “quirks.” He can be manipulated into doing almost anything, which is NOT GOOD. We still don’t know if he will live independently or ever have a career. Maybe a job, but we are holding out for a career.

So, in a week or two, I will meet with the “team” (of which I am a part, after 12 years they have learned, do not mess with me or mine) and we will come up with his goals and objectives for the year. I plan on focusing on “executive functions.” I also want to have him learn to advocate for himself. And we need to plan for the transition to middle school. Oh, and he wants to learn Mandarin. Why can’t he pick a language that I can help him with?

After his IEP, I will move on to the other 3. Hopefully, I will be done by Thanksgiving.

Click here to learn more about IEPs and Special Education Services.

Holland

2007-08-29T23:13:00.000-04:00

I hate Holland. Oh, not the province of Holland in the Netherlands or even the cities of Holland in various states. But the essay, Welcome to Holland. Every time someone sends this essay to me, I respond in a less than flattering manner. Then, generally, I am told “I don’t get it.” Oh, I get it all right. I don’t think the author had an agenda when she wrote it but I do think that she may have been slightly brainwashed by society.

As a mom to 4 kids with special needs I look at it like this; who in the heck are you to tell me where I may go and where I may stay? Hey, my plane may have been diverted to Holland but I’m not staying unless we, as a family, want to stay. It may please society to “keep my children in their places” but my mission in life is not to please society but to advocate for my children. Yes, as the rest of the country comes and goes to Italy, I am not going to sit idly by, wave, and holler, “Hey, have a good trip!”

Many parents with special needs children will stay in Holland but as for me and my house, we are going to Italy. Or, maybe Greece, Spain, Portugal or Machu Picchu. And we aren’t taking the “short bus” to get there.