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melanie
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| Posted: July 23 2009 at 10:18am | IP Logged
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Hi ya'll...
I have a 4yo who is very...different. I'd love to go into all the "ways of Jack", but can't just yet, it's not a good time of day, maybe this afternoon...anyway, I've thought for about a year now that something was wrong. He's always been different, quirky, brilliant, but we just accepted that as how he was. His dad is pretty similar. Well, this time last year he was around other preschoolers in a structured environment for the first time. It was our church's VBS. He was not quite four then, about 3y and 9months...my daughter was a helper in his class and came home every day telling me how different Jack was, how he couldn't do the things that the other kids could do, wouldn't do the crafts, didn't speak like they did, etc. We kind of brushed it off. He was still a lot younger than some of those kids, and we knew he had speech issues. Well, here it is a year later, and well...my child just keeps getting more odd and more different than other kids his age. His dad is pretty much in denial and thinks he's just immature. I sure hope he's right, believe me. Anyway, I emailed a good friend of mine who is a public school kindergarten teacher and asked her about Jack, and she said that yes, she always thought that Jack was on the autism spectrum and was afraid to tell me. I'm just devastated. I know that that's not a professional diagnosis, and of course we would have that done before assuming anything, but for me, with the doubts I've already had,,,it's just kind of confirming my worst fears.
Anyway, I was wondering if those of you with kids on the spectrum could tell me your stories,,,when you first knew something was wrong, how your child was diagnosed, etc. I know a bit about autism...not a lot, but I've always worked with kids and I was a pediatric nurse before we started homeschooling, so I am familiar with the symptoms and all. Some of them he definitely has, but some he doesn't, and so that has always been hard for me. I'd like to hear about your kids, if you have time to share.
__________________
Melanie
homeschooling Maria (13yo), Kain (10yo), Jack (5yo), Tess (2yo), and our newest blessing, Henry Robert, born 4/23!
slightlycrunchycatholic.blogspot.com
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folklaur
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| Posted: July 23 2009 at 1:45pm | IP Logged
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i'm sorry you are devastated.
if he has speech issues, it likely isn't asperger's. one of the defining features of aspergers is no speech delay/issues - these kids have trouble with non-verbal stuff - if anything, their speech is advanced (Little Professors they are often called.)
but the autism spectrum is huge.
my advice would be to take him to a Developmental Pediatrician. that is what we did, and it was the best, most informative result we could have wanted. (and much better than the child psychologists that our insurance wanted him to go to first, etc.)
prayers for you all.
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mom3aut1not
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| Posted: July 23 2009 at 4:09pm | IP Logged
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Melanie,
All our family stories....
My father was greeted by the nursery school (not preschool in those days, *nursery school*) teacher with "Dr. Caldwell, there's something wrong with your son. He doesn't play with the other children." This was decades ago so it was years before my parents found out what was going on. My little brother is severely autistic and very low-functioning. Otoh, he is the only verbal client in the group home where he lives. He was actually diagnosed correctly at five, but all the material then said that autistic people were incapable of affection or emotional attachment. That obviously didn't fit my brother as he has always had an affectionate and loving relationship with my mother. He got a plethora of diagnoses -- some unintentionally humorous -- but was again correctly diagnosed just before he turned twelve. He then got the first effective help in his life. (At that point where he was again correctly diagnosed, he didn't use a spoon, he wasn't able to put on a t-shirt, and his behavior was pretty wild.)
My youngest dd (now an adult) showed signs at 28. I was concerned before any of the doctors were. It wasn't until she was three years old (and falling off the developmental charts) that they agreed that something was the matter. She is mildly autistic, moderately tactilely defensive, and quite bright. I found that I had adapted and adapted myself to her needs. It was quite enlightening when I decided to keep a record of her oddities, verbal and otherwise, for a 48 hour period every three months for a year. It was very clear upon looking over these records and the diagnostic testing that she was autistic. Her diagnosis was done by a diagnostic team at Johns Hopkins.
I became aware at about the same time that my middle dd (obviously also an adult) had speech and social difficulties. I had tried so hard not to compare her with my oldest and verbally gifted dd that I overlooked her difficulties. She is ppdnos and also quite bright. Her diagnosis was done by a diagnostic team at Johns Hopkins although they didn't have the term pddnos at first.
With this family history and some research material that I received, I knew that my little guy had a 1 in 3 of being disabled and a 1 in 12 of being autistic. Because he had a older autistic sibling, he was in a research project to find ways to diagnose autism early starting when he was a day old. Initially, things seemed fine. However, he is a classic case of regressive autism. (He was even shown on national tv as such by Dr. Landa.) The red flag went up when he was just turned two. His speech and language delay is the worst of my kids, but he has progressed far beyond my brother. No doubt this is in part due to the excellent speech and language therapy he has received and the fact that I can both observe his SLT sessions and reinforce the SLP's work at home.
I had hoped for an easy child for once. In a way, he is. He is a very sweet-tempered boy. He is an enthusiastic cub scout, and I hope he will make his FHC this fall. Hsing him is much more intense and takes more time than it did with his siblings. God has been good to us. Since he is my only homeschoolie, I can focus just on his needs.
That doesn't mean that others can't hs kids on the spectrum if they have more than one kid -- after all, I homeschooled two kids on the spectrum as well as their older sister who has ADHD and other issues..... It's just nice that I can focus on him and his needs since those needs are greater than his sisters' were.
Just a few stories....
In Christ,
Deborah
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Taffy
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| Posted: July 23 2009 at 9:15pm | IP Logged
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Well, here's our little story...
My son is diagnosed as PDD-NOS and is now 12. He can talk but with some difficulty and isn't conversational at this point but he is steadily improving. He's very bright and has pretty good coping skills and adjusts to change fairly well. He does have hypersensitive hearing still and was hypersensitive to light when younger. He has some digestive issues as well which a restricted diet has helped with (he is currently gluten free, casein (dairy) free, soy free, corn free and we'll probably be returning to the Specific Carbohydrate Diet after we move in August). He has a few "tics" lately too.
With my son, I had some concerns when he was a baby. He was very difficult to engage in play. However, I didn't know very much about children when I had him and wasn't able to take a "maternity leave" with him until he was 7 months old. I had him over Christmas and had to be back at work/school full-time a week after he was born.
Anyway, I remember very distinctly that he was a tough kid to play with. I babysit a child close to his age when he was around 8 months and the differences were astounding. The child I babysat was typically rambunctious. My son was very withdrawn, never in trouble. Never put things in his mouth and didn't explore very much. Certainly affectionate. Many envied me for having a "perfect child" as he was so quiet and rarely got into trouble. My sister has 4 children, 3 of them are autistic - full-blown autism, aspergers and probably PDD-NOS. They were all very different children from my son.
However, denial runs deep in my bones and I told myself he'd grow out of it eventually. It was my husband who became concerned enough to start the evaluation process.
The autism spectrum is HUGE - making generalities about this syndrome is a tricky business. As mentioned before, early intervention is VERY important so if you suspect problems, get help right away. It will certainly not hurt.
Something I want to mention before ending this, Melanie, is to remember that autism isn't the dire diagnosis that it once was. There is a lot more hope and more help now. There is also more support as it is no longer the rare diagnosis that it once was.
__________________
Susan
Mom to 5 on earth and 1 in heaven
Susan's Soliloquy
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mom3aut1not
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| Posted: July 23 2009 at 9:51pm | IP Logged
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Melanie,
After reading Susan's post, I realized that you might find it reassuring to hear about my older auties. My middle dd is an intern for the summer in the field and in the place where she wants to work. She is an avid knitter and crochet-er, and should graduate from college at the end of next summer. She got a scholarship for her good grades after her associate degree at the local community college.
My middle autie (my youngest dd) is not doing as well, but she has graduated from high school via Clonlara. (All my older kids are graduates of Clonlara.) She wants a job and complete independence, but I am uncertain of her ability to manage by herself. She helps with her brother and around the house as best she can.
My little autie is making good progress. Every week he's a little better, a little farther. The county is cutting off his SLT from the ps, and the ps SLP is very unhappy. He makes good progress, and I think she finds it rewarding to work with him. She doesn't want him to leave! His private SLP also finds it rewarding to work with him.
I do urge you to get a private (ie, not through the school system) evaluation. I have always found them more thorough and more informative. Also, most (not all) of the ps SLPs hadn't got a clue of how to help my son. His current SLP in the ps system does have a clue and has been helpful. But the private SLPs (at Kennedy Krieger) have been awesome -- a true Godsend to us!
The Sped Ed classroom he visited was really not a good match -- which is why he only visited for SLT, playtime, and snack. (I observed the classroom without him for an afternoon. It was most illuminating.) It was not the teachers' fault -- there is only so much they can do with variety of children they have. And I could tell you tales.... In any case, you should be able to do a lot with and for him. Hsing a special needs child isn't necessarily easy, but it is very beneficial. (And it can be fun, too!)
I have dealt with (formally dx'ed) auties for more than forty-seven years now. The difference between 1962 and now is *huge.* Even in the years between my third child and my last, tremendous work has been done. There are so many more resources now! And --- they are cheaper, too. When I first looked at Spec Ed material way back when, everything seemed to be part of some huge program meant for a school classroom. Nothing seemed to be affordable by mere human beings. Now you can get individual materials targeted at specific needs for $12 !
Also, keep in mind things like Cub Scouts. My son has been a cub scout since he began "first grade." He adores it. He likes being with the boys, wearing the uniform, and doing many of the activities. I use some of the activities for earning each rank in his homeschool learning -- especially health! (His penultimate workbox each day is Cub Scouts.)
In Christ,
__________________
Deborah
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melanie
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| Posted: July 23 2009 at 11:13pm | IP Logged
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Thanks, everyone for your stories. They are interesting to read for sure. I've made an appointment for Jack with our pediatrician on Monday to start the evaluation process. I'm guessing he will refer us somewhere else if he agrees there's a problem. It's becoming more and more obvious that there is one. I've been talking a lot with a mom in my homeschool group that has a daughter with autism, and she is meeting me tomorrow to give me some books. It's pretty overwhelming, all the stuff I'm reading. I'm sure I'll have more questions. 
__________________
Melanie
homeschooling Maria (13yo), Kain (10yo), Jack (5yo), Tess (2yo), and our newest blessing, Henry Robert, born 4/23!
slightlycrunchycatholic.blogspot.com
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KC in TX
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| Posted: July 23 2009 at 11:54pm | IP Logged
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Melanie,
I first had an inkling that my oldest was off when he was 3. He started with his echolalia then. I dismissed it because he was such an engaging child. It was major denial, of course.
He doesn't have Asperger's as he had a speech delay. He didn't say his first word until he was almost 2.
He has obssessions and they can run quite deep. Right now, his obssession is trying to learn all the romance languages. It used to be dinosaurs. It also used to be monster trucks. And, country music. His obssessions center around facts. His conversation centers around his obssessions.
He is a sensory seeker. He likes to be jumpy, bouncy. He's also quite easily distracted. He has auditory processing problems. He looks like he's listening but sometimes all he hears is static between words.
We used a developmental pediatrician for the diagnosis. His SLP who we've had for 4 years is wonderful. She helps him with language nuances and conversation among other things. We also see an OT and an ABA therapist.
He will be 11 in August. He received his First Holy Communion last October at the age of 10. He is now an altar server. Sometimes obssession with order and routine can be a benefit. 
__________________
KC,
wife to Ben (10/94),
Mama to LB ('98)
Michaela ('01)
Emma ('03)
Jordan ('05)
And, my 2 angels, Rose ('08) and Mark ('09)
The Cabbage Patch
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Lauri B
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| Posted: July 24 2009 at 10:45am | IP Logged
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I know something was going on with Gracie when she was 4 or 5. I took her to a local psychologist who diagnosed her as Anxiety Disorder/OCD, and wanted to prescribe meds. He, literally, had his hand poised over the prescription pad as he asked me which symptoms I wanted to medicate for! I was not having any of that, and left his office (very politely, of course, but seething inside) vowing never to go back. By the time I arrived home, I decided I was simply going to ignore his diagnosis and start again - but I had no idea where to start.
Shortly after that, my mother took my daughter for a day to observe her. She watched and noticed things, then went online to research. A few days later, she called me and said she wanted to talk to me about something. :) She believed Gracie had Asperger's. We had her evaluated at a local Children's Institute for Asperger's and she was indeed diagnosed as AS/ADHD/SID.
For us, the diagnosis was not a blow, it was a relief. She had four years of in home therapy, and was able to taper off and currently has no therapies whatsoever. We worked hand-in-glove with her therapists - all five of us. It was critical for us all to know what to do to help her, as we will be the ones with her in life.
That's where we are right now. It was such a long road, and I'm sure it'll be a long road in the future.
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melanie
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| Posted: Aug 15 2009 at 2:08pm | IP Logged
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I just wanted to post an update here...we did see the pediatrician, and he did recommend further evaluation, so we started that process...called a place here that does such evaluations and they sent a big ole packet of paperwork for me to fill out. I sent that back a few days ago, and I'm waiting for a phone call with my appointment. The appointment, I've been told, will probably be a few months away. I'm impatient to get things started. His behaviors seem worse to me. I don't know if that is really true or if my perceptions of his behavior is different now. Anyway, that's where we are...waiting!
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Melanie
homeschooling Maria (13yo), Kain (10yo), Jack (5yo), Tess (2yo), and our newest blessing, Henry Robert, born 4/23!
slightlycrunchycatholic.blogspot.com
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mom3aut1not
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Melanie,
Ah! The joys of being debriefed on your own child! The piles of papers to fill out! I remember it well.... and not so fondly. The waiting isn't fun either.
Maybe during this time of waiting you could network with other people in your area. Is there a chapter of the Autism Society of America nearby? Perhaps there are homeschoolers in your area that have auties? I know that he is not formally school age yet, but still they might be a good resource... or at least a shoulder or two to cry on.
It is not unusual for perceptions to shift a bit after a parent becomes aware of a child's autism. This is part of the adjustment process, learning to discern what is connected to autism and what is not. I personally tend to realize how much I have accommodated a child -- and how far they are from the norm.
Also, some auties have a developmental spurt at about 5. My youngest dd made five years of cognitive development in the two years from 5 to 7.
In Christ,
__________________
Deborah
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melanie
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| Posted: Aug 15 2009 at 6:27pm | IP Logged
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Yes, Deborah, that's exactly what I think it going on...I think we have become so used to Jack and his little...ways..now I feel like I'm looking at him objectively...and I think, "Wow. He's really weird!"  I don't mean that to sound mean, we love the child and many of the things that we love about him are probably symptoms of his diagnosis, but it's just funny now, all of a sudden all the little things we just accepted as, "Oh, well, you know how Jack is!" have a deeper meaning.
Then there's the cross section of that. Not everything is ASD...so I have to try not to read so much into everything either. 
__________________
Melanie
homeschooling Maria (13yo), Kain (10yo), Jack (5yo), Tess (2yo), and our newest blessing, Henry Robert, born 4/23!
slightlycrunchycatholic.blogspot.com
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4Real Forums : Special Blessings
Topic: aspergers/autism questions
