[MoneySavinMama]

Any parents here of a rocking kiddo with autism?? *raises hand* If there is a thread for this someone please let me know before I pour my heart out. Just looking to connect!

[Easy2save]

as a courtesy. Anyone else?

[nmatson]

I'm an autism Mom in Pennsylvania. I'm here for any advice/venting/help! You can friend me on Facebook, too. Nicole Matson, Franklin, PA

[MoneySavinMama]

Hi Nicole! I will look you up, and be back to share my story

[nwfrugalista]

My DS is on the spectrum too, glad to meet you, can't wait to hear your story

[mjlajl]

I don't have a child with autism but I am an occupational therapy assist who works in a school and almost my whole caseload is on the spectrum.

[sbeard]

I am Christian's mom. Christian has Asperger's, she is 19 (will be 20 in May). She's in her second semester at the University of South Alabama. I am so proud of her words just don't do... Now her accomplishments are NOT without a lot of HARD work from not only her but her WHOLE family. A LOT of praise goes to my younger kids (17yo daughter and 15yo son) they protect thier big sister from a lot (and yes sometimes from herself).

PM me anytime... I'm here if you need to vent; good, bad, or just TALK...

[Sunbear]

I am the mother of a sixteen year old boy with severe autism. He is considered non verbal although he can say a few words now. I have been through a lot, but at least with my son, every year has slowly gotten better. Vent away.

[Goddessoflubbock]

I have a 17 year old son with Aspergers. While things have improved for him since he was dx'd 7 years ago, we had a lot of tough years working on only the processes of elimination, and cause and effect. IEPs, ARDs, vent away!!!

ISO: Cascade, Tide, Dawn, Caress bar soap, Pepsi, Stouffers, Libby's veg, Finish rinse, Lenders, Gortons fish, Viva, Sprayway

[MoneySavinMama]

Thanks to all of you for responding and a huge thanks to Easy2Save for bumping this thread!

There is so much to be told, so I will have to type bits and pieces as I have time. My son Jackson experienced hypoxic (lack of oxygen) seizures at birth and was diagnosed PDD-NOS at age 3.5 after a fight with the Children's hospital and the school district, who labeled him Oppositional Defiant and Speech Delayed, respectively. Perhaps they could have pulled that one over on someone else, but Jackson's mother is an Assistant Speech Language Pathologist with a second degree in psychology.

I will go over some of our challenges up until this point later, but right now we have Jackson in a full time ABA program and it is FABULOUS, albeit expensive. (7k/month out of pocket!!) Luckily, our insurance covers a generous portion of this expense and we have made it a priority for him to attend. It is my personal belief that programs of this nature should be available for every child with a neurological difference, free of flipping charge!!

A little about me...again, I am a pediatric speech pathologist, married 7 years, mother of 3 other boys, ages 12, 10 and 2. I work with children with moderate to severe disabilities. I enjoy crafting, cooking, traveling and the occasional interior design project.

Please, please tell me more about yourselves and your journeys with your kids! I have to run to see a patient but will be back later

[Goddessoflubbock]

Our son had early intervention for a year in PA, he got speech therapy, he spoke but not "English". It was his own language that only I understood. Just before he turned 4 he said his first word (cheese!) followed by "more cheese". I got some funny looks heading out of the supermarket crying my eyes out ROFL

We moved to Texas and early intervention was a joke. The only dx we had was apraxia. He drooled all the time, he couldn't walk in a straight line but he rode his bike like a champ!!!

I took him to a pediatric nuerologist, thinking he had a palsy of some sort. He watched him walk down a hallway, banging into the walls, and said he was perfectly fine. I told the dr his favored sitting position was upside down on a chair, legs where the head should be, head hanging down like legs. Told me that was perfectly normal.

I gave up on drs at that point...more later. DS is currently having a meltdown!

ISO: Cascade, Tide, Dawn, Caress bar soap, Pepsi, Stouffers, Libby's veg, Finish rinse, Lenders, Gortons fish, Viva, Sprayway

[nwfrugalista]

Thanks to all the OPs for the introductions and sharing about your kiddos

My DS (6) was born in 2005 and his body was telling us something was wrong since he was about 30 hours old (he broke out in head to toe hives the afternoon we took him home!) He had severe infant eczema, then reflux and a host of GI problems, and ultimately failure to thrive at 9 months (he only gained 9 ounces between 6 to 9 months!!) Even scarier, we almost lost him to a BAD bout of rotavirus at 10 1/2 months (sadly, we think he contracted it at the Dr's office while there for a weight check )

Ultimately, when he got sick after eating his first birthday cake, Mom diagnosed food allergies, which was confirmed by an allergist at 14 months who Dx'ed DS with multiple food allergies (milk, egg, wheat, as well as soy intolerance). Right afterwards, we moved cross country.

Because DS had been such a sickly baby, I wasn't surprised when he didn't walk or talk on time, I was just grateful any day that he was getting stronger and healthier. Walking began at 18 months, speaking a handful of words by then too. Fortunately for us, his Ped was going through delays with one of her own twins who was a few months older than DS, so she referred him for early intervention after his two year appointment. At the time, we lived in Washington state, and our local center was AMAZING. Took the next several months getting Evals and specialists/therapists assembled, DS was dx'ed PDD-NOS.

Within three months of that Dx, DS began having seizures (actually I can look back and recognize one seizure before that too, but didn't recognize it as such at the time--) so that spring we started meds for that. Fortunately for us, he responded well to the first med we tried

While we lived in Wash state, DS went one year to a public special needs preschool (in a 'great district' but I learned that they really were only great for NT kids), so I pulled him out and he went the next 1 1/2 years to preschool at a private center for autism (where he also receive speech, OT and PT therapies). He loved it there and the teachers and therapists were awesome

Sadly during this time I got divorced, so we had to move back east (my ex is stationed overseas, all of our families are on the east coast). Fortunately, the wait lists here for services were short, and he transitioned pretty smoothly to new SLP, OT and ABA therapists. Having learned my lesson from our last public school district, I did lots of research and chose the school first, then found a place to live . DS is in kindergarten this year and spends about 2/3 of his time in his inclusion classroom, with the other third getting pullout Sped instruction and related services. We actually had his IEP today

Although his progress is definitely a lot slower than typical kids, he works really hard (how many other kids follow their school day with an extra 3-4 hours of therapy?) and he continues to surprise us! Even with lots of challenging behaviours I love him to bits and can't imagine him any differently!

Hugs to all the spectrum Moms here at AFC!!

[AChiodini]

I have a 13yr old son with aspergers. He wasn't diagnosed until 2 years ago. I spent years taking him to different docs and usually being told he has adhd or odd. He also has ocd. Its been really hard and I've never met anyone with a child with it to vent with. He is very smart and can be caring but other times he's so mean and angry and gets set off on the smallest things. I was a teen mom and he was my second child. I do NOT condone teen pregnancy but I'm just glad I'm still young enough to deal with it all. He's a handful even at 13.

[MoneySavinMama]

Originally Posted by Goddessoflubbock

Our son had early intervention for a year in PA, he got speech therapy, he spoke but not "English". It was his own language that only I understood. Just before he turned 4 he said his first word (cheese!) followed by "more cheese". I got some funny looks heading out of the supermarket crying my eyes out ROFL

Lol...I totally understand! It NEVER gets old in my house. My husband are always dropping our jaws when Jackson says a new word and asking one another, "Did you hear that?" This morning on the way to school he sang along with the radio morning show jingle, which he has heard nearly every morning since birth, and shushed me when I tried to join in! He told me, "I'll do it." I looked like an idiot driving along and crying while my son sang, "Oh, oh, oh, it's the Tom Joyner Morning Show"

[MoneySavinMama]

Originally Posted by sbeard

I am Christian's mom. Christian has Asperger's, she is 19 (will be 20 in May). She's in her second semester at the University of South Alabama. I am so proud of her words just don't do... Now her accomplishments are NOT without a lot of HARD work from not only her but her WHOLE family. A LOT of praise goes to my younger kids (17yo daughter and 15yo son) they protect thier big sister from a lot (and yes sometimes from herself).

PM me anytime... I'm here if you need to vent; good, bad, or just TALK...

WOW!!!! That is amazing! I hope I can share a similar story someday. Supportive family is a great help...my older boys and my two year old are all protective of Jackson. The older boys had a sleepover and a friend was making jokes about "special ed kids" and the random noises they make and how funny they are and my oldest son said, "No, not really funny. Not at all." I was so proud of him

[MoneySavinMama]

Originally Posted by Sunbear

I am the mother of a sixteen year old boy with severe autism. He is considered non verbal although he can say a few words now. I have been through a lot, but at least with my son, every year has slowly gotten better. Vent away.

One of the clients closest to my heart has severe autism, non-verbal. In a year I've managed to teach him several signs and implement a visual schedule, decreasing his frustration level. I helped the Mom get ABA through the county, OT services, in-home training through the school and respite. You are so right, with love, great supporters and appropriate services, each year does get better. I'm so glad that your son continues to make progress!

[MoneySavinMama]

I want to and will respond to everyone stories ...I'm SO happy we have our own little corner on here. Let's keep one another encouraged and continue to share!And it goes without saying I'm also here to provide any speech therapy advice I can!

[Philly_Girl]

My 3 year old is not on the autism spectrum, but was recently diagnosed with 17q21:31 microdelection syndrome. He has severe delayed speech and FTT.

[Goddessoflubbock]

School for DS was a challenge. He did ok but his grades didn't reflect his ability. He had severe dysgraphia, so we had a meeting with all his teachers. Despite him being a classic example they denied he had dysgraphia.

I took out a paper he wrote for an English assignment and passed copies around. I asked for volunteers to read aloud the third paragraph. None. So I turned to the teacher who graded it a "C" and asked her to explain the grade. She cracked and said whAt else could I do? Ugh!! After that he used a computer for all written work

I was the one to actually diagnose him, after pinning down his specific behaviors, I googled them . We finally did get him tummy tested by a psychologist, and she concurred (and was a little shocked I found out using google LOL).

ISO: Cascade, Tide, Dawn, Caress bar soap, Pepsi, Stouffers, Libby's veg, Finish rinse, Lenders, Gortons fish, Viva, Sprayway

[nwfrugalista]

To Goddessofluobbock and moneysavinmama--

I know what you both mean about kiddos not speaking "English" too, my DS did the same thing--he would sit and look at his picture books and 'narrate' them in his own language, 'DSese' his SLPs called it 'jargon.' He would do the same with songs, he might pick up a word or two, but then jargon his way across the parts where he couldn't sing the words. The older he gets, the less he does this (his language has picked up) except that when he is upset he has lots of trouble finding words. (meltdowns are a daily occurrence in our house too Goddess!)

[nwfrugalista]

Originally Posted by AChiodini

I have a 13yr old son with aspergers. He wasn't diagnosed until 2 years ago. I spent years taking him to different docs and usually being told he has adhd or odd. He also has ocd. Its been really hard and I've never met anyone with a child with it to vent with. He is very smart and can be caring but other times he's so mean and angry and gets set off on the smallest things. I was a teen mom and he was my second child. I do NOT condone teen pregnancy but I'm just glad I'm still young enough to deal with it all. He's a handful even at 13.

I am sorry to hear that you don't have any autism mom friends in RL--I was really lucky to find them, I don't know how I would have managed on my own, so I admire you!!

If you are interested in finding some RL families for mutual support and friendship, I might suggest looking to see if your area has a chapter of TACA (Talking About Curing Autism) or ASA (Autism Society of America). I have joined both of these (The TACA chapter when I was in the west coast, ASA is closer where we live now) and they have meetings, social gatherings at coffee shops, and things like holiday parties for the kids, respite nights, etc. Or maybe run a search for 'Asperger's support group' and the name of your town, our town has one of these too.

If none of those turn anything up, perhaps contact the local early intervention center or children's hospital--the early intervention center DS went too had a support group (actually they had two, one for current early intervention/preschooler clients and one for parents of older/school age kids) and many children's hospitals offer ASD support groups too. For me, I really enjoyed meeting other Moms who 'get it'--understand the strain of the 'autism lifestyle' and dealing with schools, doctors, etc.

[nwfrugalista]

Originally Posted by Philly_Girl

My 3 year old is not on the autism spectrum, but was recently diagnosed with 17q21:31 microdelection syndrome. He has severe delayed speech and FTT.

I have never heard of this condition, but wanted to say thanks for sharing here (sounds like your son has some of the same challenges) and send my warmest wishes for your son's health and progress, hugs!

I remember speaking with a geneticist from the Autism Center at University of Washington and he told me that a lot of the stuff that is currently lumped under 'ASD' will be able to be differentiated in the future, as they get better at identifying rare genetic disorders. We had my DS tested and so far they haven't come back with anything, but he does have a couple of features that they consider 'dysmorphic' that seem to signal a genetic cause. He speculated that perhaps up to 80 percent of ASD cases have genetic involvement....that number blew me away.

[Goddessoflubbock]

First, thanks to iPod autocorrect my last post said DS was "tummy tested" ROFL. In fact he was "officially" tested... !

We really had no direction on helping him, the school IEP addressed every suggestion the psychologist made, it was done at the end of 4th grade. First day of 5th grade they have an ARD and try to remove most of the accommodations he hasn't even had yet!! Luckily I spent the summer researching, I walked out of there with the original plan PLUS 2 additional accommodations!

I started out joining a lot of "mommy" sites, where I found I could commiserate but not learn. I was very fortunate to meet a lady on the spectrum (who is brilliant, working on her Ph.D with Dr Manuel Casanova in Louisville) who started a forum called asdgestalt.com which is mainly adults but some mommies.

My goal was not to ever "fix" DS, he was perfect to me, but rather help him become the best HIM he could be

Luckily meltdowns are no longer a daily occurrence but when things don't go well and he's tired or feeling sick, ugh!! Now he's 6'3" 270 lbs so I just have to let it run it's course. He typically closes his door and throws stuff, lots of stuff!

ISO: Cascade, Tide, Dawn, Caress bar soap, Pepsi, Stouffers, Libby's veg, Finish rinse, Lenders, Gortons fish, Viva, Sprayway

[Philly_Girl]

Originally Posted by nwfrugalista

I have never heard of this condition, but wanted to say thanks for sharing here (sounds like your son has some of the same challenges) and send my warmest wishes for your son's health and progress, hugs!

I remember speaking with a geneticist from the Autism Center at University of Washington and he told me that a lot of the stuff that is currently lumped under 'ASD' will be able to be differentiated in the future, as they get better at identifying rare genetic disorders. We had my DS tested and so far they haven't come back with anything, but he does have a couple of features that they consider 'dysmorphic' that seem to signal a genetic cause. He speculated that perhaps up to 80 percent of ASD cases have genetic involvement....that number blew me away.

Its a very rare genetic disorder that was finally given a name in 2006. They suspect that alot of people were undiagnosed. They said that some kids that had learning disabilities in school could have had this disorder. My son will see a geneticist in March

[MoneySavinMama]

Hi ladies...sorry I haven't checked in lately, it's been a zoo! I don't want this thread to die, I know we could all use the support!

How are YOU?

Any praise/success reports related to your kiddo?

Anyone having specific challenges you'd like to share?

I'll start. I began a fitness class on Monday and it is whipping my rear! I tried on a pair of shorts last week and immediately enrolled in a 2 week intense fitness course. I can't feel my legs...but I am 2 lbs lighter going on day 3!!

Jackson is expanding his language and playing with toys appropriately more. I've asked everyone in the house to not stick them in front of a movie when they are busy with something else. They are forced to play with one another and toys.

Jackson has also been having accidents at school the last week and a half. We suspect UTI BC he holds his pee. He's been on a cranberry and water regiment for 6 days and is still having issues. Part of it may be behavioral, BC he has forced himself to pee in the past as a diversion. I'm taking him for a UA this week.

My thighs hurt. Ouch.