Mine is Ben, age 12. He has Down Syndrome and a number of accompanying medical difficulties. Fortunately most of his big medical problems are reasonably repaired or under control. That situation of course only follows due to years of surgeries, medications, time in hospitals, wife and I becoming seat-of-the-pants medical experts, and so on.

Ben still has trouble speaking clearly enough to make himself understood, and he has some hearing loss. Developmentally he's about 4-7 (depending on what abilities you're looking at).

The big plus to Ben is his bright, happy, outgoing personality. And of course his indomitable spirit. This little guy can show love, give hugs, and smile through anything. I do think that his indomitability is largely responsible for him being alive. This is the kid who came out of open heart surgery and was immediately ready to get up and get on with life. We had to put boards on his arms and watch him just so he wouldn't pull out his tubes and wires and get out of the bed. What a trooper.

Tags: down syndrome, open-heart

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Five hours!? You got some real stamina there. But anyone who raises an autistic child needs that.

You know, if Elijah can manage the piano that well, you should look into using music as part of his therapy (if you haven't already). They say it soothes the savage beast and in the case of some autistics that's just about literally true. [Now you just gotta find a piano teacher who has the patience for an autistic student.]
If there's a local college or university, sometimes you can get music students to do free or low-cost lessons. To score them free, tell the kid you'll sign whatever paperwork necessary for him/her to get it to count as community service hours for scholarships.
My son Tristan, age 14, was born with ADHD and Asperger's Syndrome. He is also in the intellectually gifted range which is a problem all of its own, especially when combined with the two deficit disorders. Sometimes I think that superior intellect is just another type of disorder in this society!

We got the gifted bit right long before we got the others figured out. There were plenty of signs, we just didn't read them the right way. It was too easy to dismiss them as signs of boredom, etc. His primary diagnosis on the autism spectrum is Hyperlexia. My training in psycho-linguists made me realize that his language development and reading ability were precocious, but I was confused by another explanation that made sense. Looking back, the signs of Asperger's were there, but too easy for me to miss because my client population are almost entirely adults. Besides, all of my colleagues who saw Tristan missed them too :-O

The first year was utter hell. I would not wish it on my worst enemies. (Well, maybe some of them :-O ) Tristan was premature and had trouble sucking. I was not producing much milk because I was very old to be a first time mum (47) and I was in chronic pain. Tristan had a sleep-wake cycle which was normally 2 + 2 hours. He woke up hungry after two hours sleep (small stomach) at a time and then spent three-quarters of the next two hours trying to suck me dry. Since he had a hyper-active gag reflex, some of this came up again. Usually all over anyone who was brave enough to visit us.

I was chronically and massively sleep deprived, something which was worsened by the fact that I had developed severe obstructive sleep apnea during the pregnancy and could not sleep restfully with the noisy air pump machine the sleep clinic sent me home with. I understand all too well why sleep deprivation is used as a torture.

I was also in chronic pain. I developed pre-eclampsia (which was expected) and had to have an emergency caesarian as soon as they had got my blood pressure below the blow-your-brain-out level. It was night-time and the aneasthetist they called in has only just got home on his bicycle when they called him. He had to turn around and cycle back again. He was exhausted. He was using a new technique to secure the epidural tube in the back so that it could be used to insert medication over the next few days. Perhaps because he was exhausted, but more likely due to the normal risk of something going wrong during a medical procedure, he pierced the tubing with a needle when he was looping it around (his novel procedure) and the 9mm of tubing broke off and lodged somewhere in my back. It's still there. He tried to fish it out and failed. He repeated the procedure, this time successfully, higher up my back and got me ready for the birth. The pain killer wore off before the end of the surgery and I was squeezing my husband's hand very tightly while they sewed me up at the end. The haste may have been the reason why my stomach muscles failed to properly hold my belly in thereafter.

I had a bad reaction to the fetus-safe blood pressure drugs which they fed me during the last few months. They made me borderline psychotic. I literally absconded from the hospital on one occasion and had to be talked gently into returning. Of course, I was full of the stuff after the emergency which did not help. My son was carted off to special care nursery where one of his immature lungs burst and nearly killed him. They carted me off the recovery room where I promptly went to sleep. When I woke I had no idea whether I had had a baby or a sack of potatoes and tried to get up to see. They had to sedate me so much that my memory was impaired. My poor husband had to keep re-explaining things to me and calming me down every few minutes. Fortunately I had no idea of the crisis going on in the special care nursery.

The stress of the whole thing caused a bout of shingles which was not diagnosed correctly for nearly a decade (after multiple bouts and, finally, a doctor who caught and swabbed the tell-tale rash on my back). First I developed a huge herpes-type blister on my face, in a place where I had never had a herpes blister before, then several days later I had an excruciating bout of post-hepatic pain. Before I went home this had subsided to pain on back movement. That continued for about 12 months before it gradually subsided. I still get (milder) repeat bouts when my immune system is compromised.

So the first year was hell for a number of related reasons.

Fortunately Tristan was a happy kid and we have heaps of photos of him with smiles all over his face, and some with smiles on our faces as we observed the things he got up to. He was precocious in some areas right from the beginning. He spoke his first word at four months (a vowel version of Hello) and then shut up until he started to speak in contextually correct phrases at the normal age of speech development. I noted that as a little strange but did not place much importance on it.

He was placed in the special care baby follow up program and included in a study of such children. He was given developmental tests at least annually over four years. He scored in the gifted range on visuo-spatial tasks, in the normal range for verbal stuff (entirely because the ceiling was too low on the test and there were no tests of reading included) and consistently showed a developmental lag in social skills.

The were stark differences here.

On one occasion he startled a psychologist who was giving him an IQ test when he began to give her definitions of the words on her list before she read them out. It did not immediately occur to her that a 3 year old could read her word check list, or that he could read it upside down!

On the other hand, Tristan proved impossible to tiolet train. Even the experts failed to get to first base with him. He appeared to have no awareness of bodily sensations. There were several hospital admission to deal with severe impaction problems. We had to send him to school in nappies for years. Teachers did not understand. One of them (we think it was a teacher) reported us to the Australian Child and Family Services Department for deliberating failing to tiolet train him and take him out of nappies. Fortunately the Social Worker figured out the real problem in the first five minutes of talking to me. This same school reported us to the US counterpart shortly after I arrived in the country. Tristan had not seen me for 3 months (I had been packing and undergoing surgery in Australia) and was suddenly terrified by the thought of being separated from me again. Once again, the professional dismissed the complaint in the first few minutes.

In the early years Tristan talked to himself from the minute he woke to the minute he went to sleep. We always knew when he was awake. He was still unable to control this behaviour when he was finally enrolled in a US school. (There was a six month gap between one and half of schooling he had in Australia and the age at which he was allowed to commence schooling in California. Grrrr.) During his first year he was sent to the Principal's office every other day for interrupting class in spite of be told not to and "obviously" understanding what he was told. The worst time was when he another kid teased him by putting a frog down his back and Tristan spat at him because words did not work. The Principal primed him for another episode by repeatedly telling him not to spit. He did what any Aspie kid would do in such circumstances : spat at his tormentor again as soon as he left the Principals's office. He was suspended for the three days for this, one of many such suspensions. They punished us, not him. It was highly inappropriate considering that he used to run away from school.

The first day of the following year he threw a very loud tantrum when taken back to school. He screamed at any kid who came within 20 feet of him.

The problems continued though Middle School. Although he had been in a two year program for gifted children in the last years of Elementary School he was quickly kicked out of the advanced math class (for disturbing the learning environment of other class members) and ended up in the general remedial class for the next three years. This mathematically gifted boy finished his three years at that school at about the same level of mathematical competentence as he went into it.

He is 14 now, and still has problems with tioleting. We have traced the cause to a concentration issue. When he is busy doing things or entertaining himself he will totally ignore any bodily signals which suggest that he needs to go to the tiolet.

After a long story of school mismanagement we finally persuaded the School District to pay for his tuition in a privately run school of Aspie kids from the beginning of this school year. He has absolutely blossomed. :-)
Whooeee! When it rains it pours, don't it? Glad you finally got him into a program that deals with his disorder and that he's doing so well in it. Ben has done well with the special ed teachers where he is at.
There was a lot more pouring, but the piece was getting to long so I left out most of the horrors of later years in Elementary and all of Middle School.

He went through a series of phobias (crowds, bees, etc.) which were probably worsened by a number of school changes (we had a lot of housing problems until we moved to our current one).

He was impulsive so there were lots of unusual accidents. He fell off the top of a bookcase (he climbed everything), ran into walls, and harmed himself in other ways. One week we had to call 911 twice as the result of him pouring boiling water down himself, first on his front and then on his back. Of course, we were investigated by the police for that. By this time I was getting very blaise about dealing with authorities. I just thanked them for caring and told them that I expected we'd see them again. :-)

There were umpteen cases of running off and getting lost. I got very blaise about that, too. Fortunately he only ever ran into good-hearted people who looked after him until I found him or who brought him back home. The police brought him back once after he ran away from school (which he did on several occasions). Another time a bus full of people agreed to allow the bus to break its schedule while zoo officials went looking for him. Another bus load of people waited in Mexico while we went looking for him among the crowd. He barely spoke Spanish so I was very worried. Once again, people were wonderful.

There have been many funny stories. Tristan didn't sleep during the rest breaks at his day care center. He would poke the other children and ask them if they asleep :-) Then he would get up and join in the activities of the older group. Another time he didn't like the songs the group was singing so he sang his own choice of song - louder and louder and louder - over the top of the other children.

I used to get lots of phone calls from the school to report various problems. Once I got the school counselor who chortled with laughter when, noting that the caller ID identified as coming from the school, I jumped right in with "What has Tristan done now?" before I even checked to see who it was.

Another time the school rang to say that he had loudly complained that the school's nationalistic assembly speech was rotting his brain and refused to stay in the room. I couldn't stop laughing. Fortunately the teachers dealing with him had a sense of humor.

In spite of my protests, the school psychologist first decided that there was nothing wrong with Tristan because his STAR test results were exceptional. When the behavioural problems intensified (due to misdiagnosis and poor management) the psychologist misdiagnosed him as "emotionally impaired" and sent him off for weekly counseling by a mental health worker. The intake officer got it right, but the school refused to listen for three long years.

The teachers at the school were all in agreement that Tristan was not benefiting from their system and it was clear that many of them did not have the knowledge or the resources to deal with them. The school district liason officer was one of those black and white people who did everything she could to see that the district did not have to spend a penny more than was necessary. (Yep, she turned out to be a rabid Fundie. I wasn't particularly surprised because it fitted her personality so well.)

I am usually very polite and reasonable and will give everyone lots of credit for doing things well. (Probably my psych. training.) Push my buttons often enough, however and I blow up. You don't want to be on the other end of me when I do. I eat people for breakfast.

The crisis was when Tristan's remedial class teacher informed me that he was going to fail Middle School because he "refused" to write book reports. I responded that "refused" was not the right word, it was closer to "cannot". It was suggested that Tristan attend Saturday detentions in order to make up the work. We refused to send him. Then the teacher sent him home with a mountain of work and demanded that we made him do it. Both Peter and I tried to help, but as usual, quickly became frustrated. I put my professional hat on and tried to clarify the problem. My husband did an internet search on the basis of what I observed and was lucky enough to find a site which described the newly delineated diagnosis of Hyperlexia (related to, or a sub-type of Aspberger's Disorder).
All of Tristan's strange collection of symptoms were listed on the site. We downloaded everything we could find and ordered lots of books. Then we called a meeting with the school.

What tipped the balance is that the rigid district officer was unexpectedly at the meeting. She made the mistake of saying that the District was managing Tristan's behaviour disoder. That waved a red flag at a bull. I challenged this, and continued to do so over several meetings, phone calls, registered letters to the school, etc. The officer put her foot in it by saying that she couldn't do anything about the situation until Tristan had been reexamined by all the school professionals who had already misdiagnosed him. I exploded. "You mean to tell me that you refuse to stop harming my child right now?" It went from there. I got a delighted phone call from the Mental Health Social Worker on receipt of a copy of one of the letters I sent to her, via the front office who date and time stamped it first. He continued the process behind the scenes, telling the district that we had a good case and would win in court if it went that far. The officer was forced to resign and the replacement helped us get Tristan to the Orion Academy.

Things have been improving at a dramatic rate since then. Tristan now has friends, is doing well academically, loves the school (and has no desire to run away) and is a happy kid.

He is reading over my shoulder right now and expressed surprise that he ever ran away from school. He doesn't remember! He tells me to add that what is really good about the school is all the socializing that goes on. That is quite a statement from an Aspie kid, don't you think?
Ya know, you could end up with a whole Erma Bombeck type book with those stories. :)

I gotta say though that you were awfully patient. I'm not sure I could have resisted putting someone through a wall with all that crap going on.

But finally all has gone well. And Tristan is loving his school. (And a fundie a-hole lost her job. That's worth something.)

We've got some similarly amusing or frustrating or infuriating stories. Bet most of us special needs parents do.
I found it quite cathartic writing it all down. I've never done that before. It's always been a lonely business.

BTW, we have just got Tristan to dress up in all the formal clothes that he will be wearing for Graduation Night this evening. He looks amazingly good. I will see if I can post a photo here later today. I might add one from his earlier years, as well.
"The assembly is rotting my brain" - priceless! Your Tristan reminds me in many ways of my Ethan (Aspie diagnosis pending till he's older)
Here are some photos taken of Tristan a few hours ago. I have to admit that I photo edited them to remove the teenage acne, but not the moustache shadow.


And here is Tristan a few years back. Got him to stand still long enough to take his photo in the Arizona Petrified Forest. That's his dad next to him. Another atheist. BTW, Tristan informs me that he is an atheist now. I tell him that he has some investigating to do before he can become an informed one. He knows nothing much about religion yet.


My special little guy is Ethan, aged 3. We had a rough start - I didn't know I was pregnant till I was 19 weeks and had been smoking cigarettes and cannabis up until that point. So when we had lots of pregnancy complications (I too left the hospital once when the nurse was bitchy!) and a 98 hour frigging back labor, I blamed myself. When he was 5 weeks old I broke my ankle, and the next week I left my husband (for being an incurable ass) and learned I had flesh-eating bacteria. Oh, and no health insurance. Ethan was a very quiet, smiley baby until 6 pm on the dot when he would scream at the top of his lungs for three solid hours. Walks helped some, but nothing really stopped it. I told the pedi there was something wrong; she told me "He has colic. You're a first time mom. You're just worrying too much." I told her she was a moron. The second pedi misdiagnosed him as having thrush and to top it off prescribed antibiotics (which would have made thrush WORSE). By this point I was internet-research mom in a big way. I finally persuaded the 2nd pedi that he had GERD. I kept him on Zantac from 3 months to 9 months and he slept for the first year in his stroller, because the incline in it was the only way he wouldn't wake up with horrible chest pain. By 3 months he already had severe scarring in his throat and I wanted to go find that first pedi and kick her in the throat and chest till she felt as bad as him. Maybe a broken ankle was all for the best? After the flesh-eating bacteria and two weeks of formula (I was on major drugs that pass thru milk) Ethan refused the breast, so I pumped every feeding for 10 months. Then one day he randomly decided he liked boobies again, and stayed with it till 18 months when we both decided "enough is enough".

He said his first word "Momma" at 7 months, right when he started walking. (He skipped crawling because of the GERD - too much pain being on his belly.) Then he stopped making sounds altogether. He also stopped responding to audio cues like speech, music, clapping, thunder, etc. I was pretty convinced he was deaf and took him in for testing at 10 months. We couldn't keep him focused enough to get decent results on the first test, so I took him in for an ABR where they got him drunk, er gave him medicine, and put probes on his head to measure his brain responses to sound. Perfect hearing! The nurse said "He's just ignoring you mom" and I cried.

Fortunately I was able to get him involved with Easter Seals where he was first diagnosed at 14 months with Receptive and Expressive Language Delay, Social Delay and Cognitive Delay (the last one is such a joke). His Early Interventionist Barbara worked with us till he turned 3, when he had to switch programs. She helped us get his attention span from a literally .25 seconds to nearly 4 minutes on a single task. We also had various speech therapists over that time. Now he's in the Exceptional Early Learners Program at a local public elementary school. He rides the special needs bus (it's full-size - not short at all!) and is in school from 8 to 2 every day. It's a great program with 2 teachers aids and 1 teacher to 12 kids. They also get individual speech therapy half an hour four days a week, and go to the YMCA for tumbling classes twice a week. He's been doing really well and just in the last month has started using two and three word sentences. Just this week at the pool he told me "Giddy wah-ya" ("get in the water").

Lots of non-experts have told me he seems to have Aspergers or Autism Spectrum traits, and the experts have said while he has some, they don't think he fits. The book Einstein Syndrome seems to describe him to a tee. I also talked late as a child, and while I have some social problems, I relate them more to being raised in a cult than to talking late. Ethan is very intelligent, does jigsaw puzzles for much older children, climbs everything, escapes in inventive ways (through windows, by carrying chairs to the door to undo the extra locks I've added, etc.) and my neighbors are all pretty understanding about bringing him back. My closest neighbor works for Child Protection and has vouched for me before when Ethan got out of the apartment and police came to find me (this happened in the two minute span of me going to the bathroom).

I relate so much to what you said, Rosemary, and definitely think you should write a book and/or blog about your experiences. Thanks to all of you for this community and sorry for talking your ears off :)
What a handful! Single mom and having such a live wire. Hope his ability to focus continues to increase. That's a great improvement.

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