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high functioning autism


mysweetpeasWil&Wes wrote: I'm sorry to be away for so long. I'm still working f/t at Whole Foods and don't have much time to get online anymore. I do see some of you on FB, so thank you for that. I haven't told anyone but a few close friends and family, but Wil was recently diagnosed with high functioning autism. Many of you may remember a couple years back when I had concerns with symptoms of sensory processing disorder. It all started with his S/L path who mentioned he didn't like to be touched (he was 2.5 at the time). It took four different preschools, speech therapy for 2.5 years, a screening at the Autism Center at UCSB, numerous "observations" from county special education team, an open/now closed IEP for speech/language, hiring and paying money for an IDEA advocate...to FINALLY receive a formal assessment when he is now about to turn 6! If any of you ever go through this, all I can say is FIGHT. Listen to your gut. Only a mother/father knows their child best. People will turn against you and make you feel that it is your own fault. There is a lot of red tape and you have to find knowledgeable people to stand behind you..know your rights. You'd be shocked at all the opposing opinions I have heard. Or teachers/doctors who suggest you just need to be tougher on your child. I consider myself a very open-minded person, so I always try to stay neutral and listen to other people's suggestions. I've even tried some of them. But don't try and tell me that any of this is a sign of bad parenting. "Lack of sleep, poor eating habits, needs more discipline"...I've heard it all. I am so grateful for Wil's preschool teacher (who just recently quit to stay home with her own special needs child). She saw signs the day she met Wil and she introduced us to our advocate. If it weren't for her, we would still be struggling to get someone to listen.

The assessment confirms that Wil has a high average IQ, yet low average in speech/language, emotional and social pragmatic skills. He loves routine, which is great when it comes to obeying simple rules or doing chores around the house, but if others break the rules, he throws a tantrum. Sometimes lasting 20 min or more. Most 5 years olds can be bossy, but Wil gets frustrated if children are not following his way of doing things. It's not easy on Wesley and I know it's not easy for his teachers who have younger kids in the class. It comes off aggressive at times, because he also is a sensory seeker, where he likes to physically touch and "push" people around him. Not intended to hurt anyone of coarse. He can focus deeply on an activity, play for hours with a certain toy or watch a movie, but if you change up his routine or take him away from his focused activity, then he's completely out of sorts. Move his race cars out of line and he'll start bawling. Pick out his clothes, throws a fit. Transitions in school and at home are difficult without many warnings. Noises are also bothersome - he's gotten better with this, but if you don't warn him or cover his ears before we grind coffee, he screams. Yet sometimes he is fine in a crowded room. He handled Disneyland fine, but other times he can whine and moan and curl up into a ball because their is "too much noise". He does make eye contact, so people wouldn't see him as classic autistic. But it is hard to get his attention and he looks often lost on a playground. When I drop him off at school, he is like a wet noodle and gets a bit gibberish...I always thought he was just trying to be dramatic about me leaving, but now I understand that he has difficulty with the heightened sound in the room. Free play is totally overwhelming. My gut told me many years ago that something was different when I saw him rolling under the weight of the couch pillows just about every day. He would hum or repeat a sound over and over again as he rolled around. Like he was in a trance. He doesn't do the stereotypical hand flapping, but he does odd sound effects and sometimes fast body movements.

I know you guys must think that I'm totally shocked by all of this. No parent wants to hear the results of a diagnosis. I do find myself crying off and on..some days good, some days bad. But I will say that I am mostly relieved to finally get some answers. And I am sooo happy to finally get some help!

I am totally scared that we've wasted time not having therapy for the past few years, but I look at him and think, wow he is such a SMART kid!! And he has done this all on his own!! The Psych said that he blew her away with problem solving, decoding, building, and memorizing a story or faces in pictures that he had seen. There are so many things he does far advanced for his age, so I'm not afraid for him academically. But I worry for him socially. He does make friends relatively easy, but I think that sometimes because of the way he behaves or "acts out", he loses their interest quickly. I know it's a struggle all of us go through as parents, but it's hard to know whether to step in and say "be nice to my kid, he has autism" or let him learn from his own experience. At this point, I don't tell anyone....but I admit to feeling very isolated by the whole thing.

So Wil starts kindergarten the end of August and he is thrilled! I'm thankful we waited this last year..he is super ready. And thanks to our great advocate, the county special ed office wrote a new IEP and agreed to OT and ST services throughout the rest of summer!

Anyhow, that's it for now. Overall, our family is doing really well. Wesley turned 4 today! The boys are both healthy and we're enjoying summer.

Rae
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amymom replied: wavey.gif Hi Rae, It is very good to hear from you!

Wow that is alot to take in, but I do understand your relief at finally having an answer and a way to move forward.

Good Luck,

coasterqueen replied: ((HUGS)) Wow, a lot of what you said made me think of Megan. Especially how people think you should be tougher, etc, etc. Ryan and I have had so many knock-down-drag-out fights over her as well. I wondered if we would ever see eye-to-eye on her. sad.gif We still don't to a degree but he's gone along with it to keep the peace. He doesn't even go to her therapy appointments unless I absolutely can't. It was another mother who saved me mentally about Megan. Megan has SPD or so says her therapist, but sometimes i just don't understand, ya know. Kylie has a friend in school, they've been friends since Kindy, who is severely autistic. He has hit her, punched her, spit on her, yet she still feels really close to him. His mother called me one day after he hit Kylie so hard it left a big bruise on her, and she wanted to apologize and explain to me what the situation was, etc. I told her I understood, etc, and that Kylie still wanted to be friends with him, then we went into Megan's situation on the phone, etc, etc. We met a few times and it was her that said "Karen, *I* can see her issues, don't let anyone tell you you are crazy, because you are not". I cried. Finally someone saw what i was always seeing in Megan. Most people can't. They don't see her obsessive issues, they don't see the meltdowns and the shutdowns from everyone else. Even her teachers don't see it most times. dry.gif I am afraid for Megan in so many ways but trying not to let that fear run me. Megan doesn't like to make friends. It took her almost the 2 years at school Pre-K to really open up to other kids, but she mainly goes off in a corner and plays by herself. I could go on and on, but I will spare you.

I guess your post just really hit home for me. It is so hard when others don't see what you see. I spent the first 4 years of Megan's life fighting doctors and family members and even my husband on many of the medical issues Megan has.

Congrats to you for sticking with your gut despite the fight you had to fight to get where you are now. I hope Wil finds as good as a friend as Kylie has been to her autistic friend. I am simply amazed at how she is to this boy. I've never seen such kindness. She and 2 other kids are friends with him. His mom calls me or sends me cards all the time literally crying and thanking us for the fact that Kylie is his friend. I've never felt she needs to thank us. Kylie WANTS to be his friend. Kylie and I have sat down and talked about why her friend is the way he is and why he does things and she understands. It's too bad she doesn't understand it with her sister, though. rolleyes.gif tongue.gif

I'm really rambling here, so I apologize, but please keep me posted on his progress in school. hug.gif I know Megan's therapist says Kindy will be the hardest ever for her and my friend said it was the hardest for her autistic son, as well. She cried on the phone to me a few times about the hardships she faced. You can "cry" on my shoulder anytime you need to and need to talk.

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luvbug00 replied: Im so Glad you were able to get answers. Even if it wasn't the answer you hoped to hear. But now you can find peace and move on and be all on the same page. smile.gif
It teaches all parents to fight for what they know in their guts about their children. We know our kids best. Nice to hear from you again nd hope to get more updates soon smile.gif

my2monkeyboys replied: Wow, Rae - I know you and Wil have a tough road ahead of you, but you will make it, of that I am sure. It's so great that he has a mother on his side that will fight for him. hug.gif hug.gif
I'm glad to see you on here -- you've been missed!!!
I can't believe Wes is about to be 4... they are growing up way too fast!! wub.gif

moped replied: hug.gif hug.gif

Miss you!

Maddie&EthansMom replied: Oh Rae!!! You are such an incredible mom! I'm so glad you fought for your sweet little boy. I know it must have been difficult because a part of you doesn't want to know the truth, but you are so very strong. I'm glad he is being more understood and you are able to help him.

So good to see you here! hug.gif

ZandersMama replied: Hi Rea! It will be a year next month since Zavier got his diagnosis of high functioning autism. If you ever need someone to talk to pm me, I know it's a hard road but it does get easier. The one thing that helped me in the beginning was keeping telling myself, now i know, now i can make it easier for him.

Our Lil' Family replied: Good to "see" you Rae! What a road you've been down, but I know you must feel such relief to have answers!!

Sam & Abby's Mom replied: I was just wondering about you the other day. After reading, I remembered Sam and Abby are the same ages as Wil and Wesley. Sammy starts Kindergarten this August and Abby just turned four last week smile.gif

I'm glad you rec'd a diagnosis. At least now you can move forward and do what you have to do! Nothing worse than 'not knowing' sad.gif

I have a nephew who exhibits alot of signs of Autism but nothing is being done about it -- my brother and girlfriend dont 'see it'.

Congrats for staying true to your beliefs and sticking to your guns regarding Wil !! Someday I'm sure he'll thank you for it, Mama.

~Roo'sMama~ replied: Wow, you have been through a lot! I'm glad you finally got some answers and have someone who is listening to you now! hug.gif KUP on how Wil is doing ~ it's hard to believe he is six already and Wes is four! wub.gif

MommyToAshley replied: We've missed you. hug.gif

I have heard similar stories from friends about how they have had to fight to get answers. I still can't believe in this day and age it is so hard to get help for our children, but Wil is lucky to have a mother that didn't give up. I am so glad that you have answers now and hopefully now teachers and those closest to Wil can better understand him and what his needs are. He is such a smart little boy and has a great Mom, I have no doubt that he will be just fine. hug.gif

Boys r us replied: hug.gif Rae, I'm so sorry you had to fight so long to get someone to listen in order to get answers. I'm sure it is frustrating looking back to think of 'time wasted' when he could have been getting the therapy he needed!
I know it has to be a huge relief to finally have an answer and at the same time how real it must feel to have an answer ..one of those bittersweet moments!

Will is a great little boy and I'm sure that with his great parents, his brilliant intelligence level and now the therapy he needs..he will thrive!

gr33n3y3z replied: Hi Rae its nice to hear from you
I'm glad you got answers now and you all know what and where to start
I'm sure he will thrive bc he is a smart boy.
Please keep us updated and hope to see more of you
(((hugs)))

henrypilarski replied: Autism can be very hard for people to understand. You will find yourself having a special bond with your child that will make you inseparable. You will also find it very frustrating at times and also very rewarding. My girlfriends sister has a 13 year old son with Autism and he is unable to speak but very intelligent inside if you know what I mean. He has grown on me a lot since I met him about 2 years ago.

ZandersMama replied:
Came back to add, I don't mention it to kids but I do to other parents, and for really rotton adults, I printed off buisness cards. they say,

My child has autism. Autism is a neurological disability that affects development of a person's ability to communicate, understand and interact with others.

it stops the stares and rude comments quick

coasterqueen replied:
laugh.gif I like that. It's unfortunate you have to do that, though.

I don't know if this is true for autism, but for sensory processing disorder our therapist describes it like this: Megan's mind is like a cell phone in a very remote area with spotty reception. Sometimes her mind (i.e. cell phone) can hear the things the other person on the other end says, but she can't communicate back to them. There's a disconnection between the mind and the mouth, really. She knows what she wants to say or she knows what she wants to communicate to you via body language but doesn't know how to do it. Therefore for her she melts down because that is the only way she knows how to do it.

When I explain it to friends and others this helps them to understand her a bit better. This really helped her teachers understand her better. Especially her gymnastics coach. The coach was constantly giving the class instructions like "do a front sommersault, then skip back to the front and do cartwheels down the line". Well that was too much information for Megan to process and therefore she just couldn't' do it and the coach got frustrated thinking she was ignoring her and I had to explain that wasn't the case and we talked and now she gives Megan smaller sets of instruction.

I'm sure you have to do this as well, but I've found that you spend forever and a day explaining to people how to react and act with children on the spectrum. Unfortunately schools don't do so well with it, even though they are trying to mainstream spectrum kids. I spent two years emailing and conversing with Megan's Pre-K teachers about her actions, etc and I know I will spend every year with every teacher probably the whole year getting them to understand how they have to teach Megan just a bit differently than other kids. It's worth it in the end. wub.gif

jem0622 replied: My nephew has high functioning autism. Food sensitivities, motor skill issues (used an alpha smart for a bit and gets to do a lot of typed (versus hand written) assignments. He also gets more time to complete his work. He is MIT material with his IQ, but just needs that extra time to get all his thoughts out. He rocks when he talks, chews his collar if he is nervous. He has gotten better in time with the rocking. He plays clarinet and runs track.

My neighbor's son has more of the outbursts if things are not going his way, but they see a counselor regularly and monitor the effectiveness of his meds/doseage.

I am glad you have great advocates/help!

julesmom replied:
My kids are like this, but they are dx with CAPD, central auditory processing disorder. But how you described Megan is just how mine are.

TANNER'S MOM replied: Wow Rae I am so proud of you! You are a rockstar Mom. This thread has touched me! I am proud of all the parents who fight and who believe in themselves. No one knows their kids like Momma does!

Karen, hugs to you also!

Just remember love makes every child perfect! And with all the love you show your child, or children they can fight every stupid stare, every teacher or adult who doesn't believe. I am thinking of you all!

jcc64 replied: Hi Rae-
I'm glad to see you again, but sorry to hear about all of your struggles regarding Wil's diagnosis.
The good news is, you're educated, proactive, and persistent, and that kind of parenting, in conjunction with Wil's obvious intelligence and all of his other wonderful traits, bode very well for his future, autism or not. I know it's a blow to hear that your child has a lifelong challenge to deal with, but honestly, we all do in one form or another, and at least you have a legally binding plan in place to help him through the system with his. Fwiw, the valedictorian of my son's high school class this year has high functioning autism, and he was able to get up and deliver a wonderful address in front of a huge crowd.
My advice to you as a teacher is to stay on top of the school at all times. Never assume that your child's teachers have poured over and committed to memory all of the details of Wil's IEP. Stay in regular contact, remind them of his particular accommodations, and do it all in the spirit of friendly cooperation. Teachers can get very territorial and bristly when they think parents are hovering too much, and there's a way to stay involved without alienating them. It sounds like you already have the skills to do this, Rae. And as far as the social piece goes, yes, he probably will struggle occasionally. Kids are really impatient and not always well-equipped to "understand" why a classmate might be acting out. I would co-opt the teacher to help steer Will towards those few children who are more evolved and empathetic and therefore likely to forgive any potential transgressions.
Best of luck and kup.


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