Our Story


 

The story of our sonÖ Boy that is a hard one to do. Our son is a never-ending story.
When I was pregnant with him, the ultrasound showed that his femur was much shorter in comparison to his head circumference. The doctor informed me that he was either going to be a midget or have an enlarged head. Also, no agreement on a due date. By the head, he was due about Dec. 7th, by the femur he was due about Jan. 30th.

So, on the iciest day of Jan the 16th, the day before the California earthquakes; our own earthquake happened.

He was beautiful and quiet. His apgar was low, but he peaked up. Fast-forwarded about 18 months and we are no longer quiet. He wasnít easy to snuggle. He liked to be wrapped up tight but not snuggly and not playful. He was content with the swing he had. He screamed at night, and did not require sleep. Since the age of four weeks old we had been fighting severe constipation. SO much so, that he was on stool softeners and laxatives. He broke out in a rash with milk formula and since history of soybean allergy was in the family we were on nutramagen.

At 18 months old we were seeing his Gastroenterologist on regular bases. We had an upper g.i, we had barium swallows, and we had cat scans. He has surgery and has his rectum spenctor checked for Hirshbrungs disease.

We got out of all of this the professional opinion that he had reflux and three holes in his esophagus.

At 18 months, he still had no mama, no dada, and no speech. He spoke unintelligible garble. He was frustrated easily, he was inconsolable. He would be ok for me, at times. We then went to see an E.N.T specialist. He was put to sleep, had hearing waves tested, he had two hearing tests at two different times in two different settings. We were told, there is no reason for it, learn sign language until he is ready to speak.

I asked if there could be a connection between the behavior, speech, bowels, and now his odd behaviors. NO was the answer with the "hereís a whacked out mom" look. So we take precious back home to endure and cry.

Fast forward again to preschool screening. Still very little intelligible speech. Gross motor skills up to par, remains unsociable, spinning things keeps him quiet. Didnít play with his toys, whiz at puzzles and building. But still defiantly something not right. Qualified with flying colors for preschool special ed. because of speech only. He is just a little behind. Now a trip to a childrenís hospital again, this time to a behavioral neurologist. To find out he is developmentally delayed 18 months. So now a second year in preschool special ed., both years with a speech teacher three times a week.

We now are making a bit of sense. At least enough that the noise sounds like a word. School psychologist, pediatrician, and the "special ed. district", felt we didnít need special ed., just speech and he is in reg. ed. kindergarten. We make it half a day, having incredible social difficulties, still in speech, and yet he is an angel and goes into reg. ed. all day first grade.

Now just to pause there, you are now entering into what I call the twilight zone of hell. Here it goes.

We are now in full time first grade, I am getting called to come to the school three times a week, he is scarring teachers, he is staring out into space, he is unable to carry on a conversation or relate to school rules. He has been isolated in the assistant principals office for rocking and screaming, we have been removed from the room for rocking, beating our head, bashing our head, for quirky confrontations. He again (failed to mention chronic sinus infections and large antibiotics off and on life long), had a sinus impaction and on four medicines. Came down to homeschooling him until he could cope. Took him back into the pediatrician and demanded that something was wrong. This time, a true answer of "Iím not sure, could be a form of Autism". Denial was in there with us. We decided to wait. Now we are at March 2001, Pediatrician thinks we should see the behavioral neurologist again, it was under new care. So we make an appointment for June. I researched Autism on the Internet. What I read floored me, yet it tore me apart at the same time. I was reading my son in the life of another boy, the next day Montel Williams has the autism society on his show, and now family is calling me saying here he is. Joe is at work, and Iím reading my sons fate on the internet; I can take no more. I call him at work in tears, he was stunned. I print out my info. And cry myself to sleep.

We read about the gluten free diet, and about a wonderful lady named Heidi. We study, implement, and become the chosen few on the gluten free diet. Within a matter of weeks he is the winner of the good behavior award. We are getting letters home about his 180 that he did, and what did we do. Noone believed us when we told them, that all we did was change his diet.

It is now school year 01-02, we have an official diagnosis of high functioning autism. We have a wonderful angel for special ed. He is in regular ed, with a speech teacher twice a week, and special ed. for social stories. Roadblock hits with second meeting with the special ed. district. He needs body sox therapy, brush therapy, and help with some academics. Denied on the grounds that he can survive like he is. Special ed. teacher is working with us again. We are taking his care on by ourselves. He now has twice a week speech, social stories, a free area to go, wonderful repore with the special ed. teacher, bag therapy three times a day, (she made us the bag personally), brush therapy three times a day, at home he gets message therapy with chamomile lotion, music therapy at bed time, gluten free diet, and ABA therapy of positive reinforcements done by his teachers and me. Mind you now, this is not in his IEP because they saw no need for it. He is also at the current time a orange belt very soon to be green belt in taekwondo, and heading to tournaments. We have also found the doctor that delivered him to be open and willing to do whatever we want with him (within safe limits).
It is so good to know that I am not the complete fault of my sons behavior, and that he is not completely acting out, or different because he wants to. But yet, it is scary, heartbreaking, infuriating, enraging, humbling, and exciting all wrapped up into this little bitty body of a boy. As my poem startsÖ Autism is not the end of the world just the beginning of a new one. Our journey will not end, and we recognize the angels that God have given us already, and we look forward to the many more to come. I once heard a wisdom bit put as "that which does not hurt us, helps us", I like to that of it as , that which does not break us, strengthens us. The Lord created my son, he can fix my son, but yet with all of the famous people whom are/were the same as him, and do we really want to fix them? Maybe they have got it right? Some see the glass empty, some half full. I think that since there is only certain people who have been given the challenge of raising these children, that we can consider ourselves as the chosen few. The ones that God looked down from Heaven, holding in his hand a child that is gifted and peculiar, looking to and fro for that parent to be his vessel to raise them thru, and found us. What an honor. But yet what a job, and responsibility.

Update:  May 2002.  We've had our year end IEP.  He is now moving to the other side of the building, new teacher, and new atmosphere.  He will get a special bathroom. He will get brushing once during school time and body soc during that time also done by the special ed. teacher.  He will be pulled out for his tests so he can read them to an aid (some impulsive issues).  He will con't with speech, social stories, and down time.  This is all on his IEP.  It feels good to finally have something in writing to hold those who teach him accountable.  I con't to have concerns about the next teacher, but I think it is my "lioness" instinct that I have.  He is growing like a weed. He  con't to be on a gluten restricted diet.  We've tried peptyzide enzyme and he just went hyper to the point that we had to stop it.  We are on Zyme Prime with each big meal, and as long as it stays gluten restricted we are better.  I haven't noticed anything but my husband has.  He can tolerate small amounts of regular bread with two enzymes ie: McDonald bun, one slice of sandwich bread.  The diet is so very expensive, but yet when it comes to the health and welfare of him, then he must come first.  He con't to have major social difficulties and is ostracized by most of his peers.  He does have one good friend, who has social issues as well.  Even though they are an odd couple, noone should be without a friend.  He made it to his first sleep over and did well.  He hasn't been invited to parties yet, but that I pray will come.  I find that I con't to be primary caregiver for him.  It is a very tiring job, but it will be alright.  

Update: Feb. 2003 Dean is well into his third grade year.  I had full intentions on staying quiet and letting the IEP work for itself, but needless to say that didn't happen.  Dean has a program called wrap-around that helps with food, martial arts, and his vitamins.  That has been very helpful.  But the problems lie in people.  The IEP itself cannot do the job, people have to do the IEP.  As of Nov. 2002 his IEP for sensory areas were not being done.  He wasn not being reminded to use the private bathroom so he didn't use it.  No body soc, no brushing, and no pulling out for the tests (at the beginning).  I called an IEP in Oct. it was the most horrible IEP I had been to.  It was rushed, very few people were given the time to speak, and hardly anything was addressed, definately nothing that I needed addressed.  Since the special ed. teacher and reg. ed. teacher were caught not doing what they were to do, they got very upset with me and refused to answer any of my emails, letters, and voice mails.  The wrap around chordinator asked to be my advocate and speak for me since the school wasn't listening to me.  Another IEP was set for Dec. and I went myself to a legal advocate outside the district.  With her in tow we went in, we were promised a FBA, plans for a school wide teaching on ABA therapy (which they weren't and still aren't doing correctly), and teaching on Autism.  That was met with resistance from the principal, but it is suppose to happen this year yet.  We also didn't agree to the behavioral management plan and it was held off until after the FBA.  There is no communication back from the special ed. teacher anymore.    I told the teachers that all notes are to be sent to me no more thru the wrap coordinator.  It was getting so that in order for me to ask if he found his glasses, I would have to go thru her and they would have to answer thru her and I would get the answer about a week later.  The day of our behavioral IEP many of the members were sick so it was agreed upon to reschedule.  Their idea of reschedule is a month later, that will make it 13 weeks after the FBA and eight to ten weeks shy of the end of school.  At this time, I am trying to get them to try a few sensory issues with him.  The FBA showed that he had a dual sensory weakness ie: reading and listening at the same time.  He has been getting in trouble for an Autistic Characteristic that he cannot fix.  It did show he had some behavior issues, but they are targeting them.  Totally backwards.  I will update after the next IEP (whenever that is).

3/2003 We've had our Behavior Managment planning meeting and INA.  The behavior planning meeting went very well, we have in place a plan to help him start working on self management, and yet con't the positive reinforcers on a reg. bases.  I am sent home a sensory tracking sheet, yet they have yet to try anything different. At the INA, I felt my rights as a parent were taken away.  The "team" decided against my wishes to send Dean to a neurologist, and barely squeaked by an ok to have a sensory observation in the classroom.  The observation is to go first and then the neurologist.  I wanted to wait til the start of next school year for an sensory integration specialist, but the team said no.  So now it will take up til the end of this school year to get all of this done, and for what.  We've decided to bring in our own BCABA specialist to do an observation for two days, and to do observations outside of school.  She will be able to connect the dots and bring them to light.  She will be doing this on April 2, 2003 and will be back for the year end IEP meeting to share what she found and to help educate everyone.  We are hoping that next years reg. ed as well as special ed. teachers will be there.  The relations within the  IEP team is strained, but we will survive this school year as well.  I will update after the April IEP meeting.  

Top of Page