Children with autism

[TiggnTaz 1]

Hey all... joining the group a lil late I guess... I've been kinda hiding out this year as some of you who I've talked to know... We;ve had some more severe issues with our oldest who was originally diagnosed with Aspergers when he was 7. He's now 12 and Last November into December he had a major meltdown which started over a bullying incited that got way out of control at the school he was in. We took it to the Guidance level, and even the Principal, but even though he is an IEP student in a "self contained" class, they said its just how kids are, he isnt really being bullied, he's just thinking he is... and blew it off... Long story short, my son ended up almost having a nervous breakdown over this. We took him to a Neuropsych doctor in Philly when he couldnt sleep, had trouble eating, started refusing to leave his room, didnt want to go to school- nothing... and the full report scared me to death... not only are we now dealing with Aspergers, but OCD, signs of Bipolar, Intermittent Explosive Disorder and a few other letters of the alphabet... they also said that he had issues with auditory processing, and even though his reading, vocab and comprehension tests scored at college levels, (at 6th grade) his math tests were barely 3rd grade... and this report went on for almost 30 pages of facts and information that with each word made me want to shrink deeper and deeper into bed and hide. All I could think at that moment was what did I do to fail him so terribly?

Once the shock wore off and some much needed support from Fiends helped me through it- I fought the schools- even though I'm still fighting to get him the right placements, he has been deemed fully and totally disabeled and can not function in a typical public school. So we are trying to get him into a school that is specifically for children with Spectrum disorders- but have the district cover the tuition... very tricky with all the budget cuts... He hasnt been in school since we pulled him out in December to bring him to the Crisis center... I've been home schooling him ever since... We are still trying to find teh right cocktail of meds that will work and not have too many adverse side affects- as it is, he's almost 5' tall and only weighs 60lbs, even though he ahs a decent appetite most days.

We can never stay in hotels though- he has too many sensory issues, can only sleep on certian sheets, with his pillows, I have to use certian laundry detergent... sounds, lights, tv... you name it... When we started camping with him, it was a godsend to us- and even more so once we had the popup. I never knew vacations could be relaxing!

Though now I feel like I'm loosing him even more and its scarring me- He wont even come camping with us more weekends, he barely leaves his room except for dinner or to see if his cat is at the door (Shes housebroken).

I thought being back up north with family would be better for him, but now I'm not so sure- we have 4 generations in the house ranging in ages from 5-87. My parents and Gram pretend like nothing is wrong, dont enfore the structure or rules I try to lay out for any of the kids... its just extremely tense... So please dont mind if I pop on every once in a while to let some steam out... there isnt anyone here that really listens to or understands what i'm saying when it comes to what I'm going through with all this...

Thanks for listening :heart:

[TikiRoom...Shay 4]

I just wanted to add our families' info to this forum and am so glad to see it discussed here and that there is a support system through the Fiend Family.

We have 3 boys - Ryan is 17, Nathan is 14 and John is 12.

When Ryan was 11 he was diagnosed with Asperger's Syndrome. Nathan has ADHD/ODD (ODD is Oppositional Defiance Disorder) and John also has Asperger's Syndrome along with ADD and a stuttering disorder.

I am busy trying to plan our March trip and this is definately coming into play. They boys are all doing really well and we are looking forward to a dream vacation!

[DaveInTN 3,247]

Glad to hear your boys are doing well, Shaela! Can't wait to meet y'all at Stone Mtn! We will sure have a whole bunch of "Jr Fiends" there!!

[TikiRoom...Shay 4]

Thanks, Dave! Same here! How many kiddos will be there? Any close to my boys' ages?

[okgirlie...Brandy 6]

So I just found this thread 

 

All three of my kids have Sensory Processing Disorder and it effects all three differently.  I have a 13 year old and 2 year old son and a 9 year old daughter. 

 

At the moment my 13 year old is doing great.  He gets frustrated and overwhelmed easily but we are learning how to cope with that.  He has struggled for so long and now it's nice that things are good.  

 

Currently, my daughter is battling quite a bit of anxiety over school.  From what I understand anxiety and sensory go hand in hand together.  She can't regulate her emotions so the anxiety is controlling her.  It's breaking my heart.  I am trying to get her help but everyone has a long wait list. We have 32 days left of school and I am going to be so thankful when it's over. 

 

My youngest is mostly nonverbal and I waiver back and forth on whether I think he might be autistic or not.  I am leaning towards just sensory but to a greater degree of it than my older two kids.  He hardly makes eye contact although in the past few days he has made a whole lot more eye contact with me.  He loves adults but doesn't want to be around kids his age for more than a few minutes.  He gets very overwhelmed/stimulated at stores.  I am usually "that" parent that everyone seems to judge when we go to the store.  Thankfully, I finally was just able to get him evaluated for occupational therapy.  He should start very soon.  He also gets speech therapy once a week.  He's making progress. 

 

We head to Disney as soon as school gets out and the closer we get the more nervous I am getting.  My youngest loves all things Disney.  We use an Ipad as a calming tool for him.  It's loaded with Disney movies so I think he's going to love seeing all the characters.  But I also know he gets overstimulated so quickly.  I know we will take it much slower this time and just go on his pace.  He'll ride in his stroller, have his security blanket with him and I'll bring the Ipad to use when he needs to escape the world.    On top of everything else he is allergic to 6 of the top 8 allergens and he has bad eczema.  The poor boy got all the bad genes. Thankfully, I have found that Disney is very good with allergies so at least I won't have to worry too much about his food while we are there. 

 

Anyway, it was nice reading through here and knowing that I am not alone.  Some days are so hard and I just want to cry all day.  Then I have wonderful days like today.  My youngest called me Mama for the first time.  

[fladogfan aka Gretchen 259]

OKgirlie,  just read your post.  Good for you being able to read your kids so well. 

Loved your last line.

 

"My youngest called me Mama for the first time."

[pixiesteno 2]

I can't believe that I missed this post too.  Our youngest son who is almost 26 now was diagnosed with Mild to Moderate Autism when he was 3.5 years old.  He was also diagnosed with Echolalia and Hypo-tonicity.  We were living in NY state at the time and the field of special education was and is one of the areas that the state was a leader in providing services to individuals with developmental disabilities.  We were very fortunate that due to state regulations our son received speech five times a week, OT, PT, and then Adaptive PE for years.  He went from not speaking, except to do huge monologues from films, to being able to hold normal conversations.  He is still not very talkative but will participate.  It took me years to figure out that all I had to tell him when he just looked at me was, "Jon, I can't read your mind, you have to open your mouth and talk to me."  I remember the first day I said that, he got this big "OH" look on his face and started talking.

Until I read through all the posts had had forgotten all the joys of food texture issues, clothing issues, melt downs over having to have new shoes, not being able to let go of the grocery cart without him screaming bloody murder, family members who called him a brat to my face -- all the joys that parents of kids with special needs go through.  We did find out when he was in 3rd grade that the muscles in his eyes did not work properly so when he was reading he would move his head at the end of a sentence and this caused him to lose his place and made reading difficult.  With the help of his OT, a behavioral Optometrist, and a computer program his reading skills blossomed.  He loves reading now, and there are book piles all over his room to prove it. 

However, there is light at the end of the tunnel.  Jon graduated high school with an advanced regents diploma and attended college out-of-state (yes, mom was a basket case for that one).  He is back living at home after obtaining a BS degree in Film production from Full Sail University.  He is not working and I will confess I probably am not pushing him on it the way I should.  He is a very intelligent, loving young man and we are blessed to have him. 

We found that when traveling one of the best things that we could do for him was to stay in a place that had a pool so that he could swim at the end of a travel day.  We always pulled him from school to go to WDW during the slower season, and he flies better than I do.  Although if he has a bad experience with something he generally will not try it again, for instance, we went to St. Croix and the first full mouthful of sea water and we could not get him back in the drink to snorkel.  Believe it or not, he tried the TT at HS at the urging of his Physics teacher.  As many of you can imagine, the result was not good.  Melt down, white faced, hyperventilation - but he recovered and now it is a standing joke of "do you want to go on TT?"  He loves Star Tours, go figure.   

So for all of you that are just learning of the wonderful world of Autism and developmental disabilities:  You will survive and you are not alone!!!!

[kadancer 82]

My youngest son is on the severe end of the autism spectrum and although he has received service since very young and is a student in a Kennedy Krieger school he is is still non-verbal.  As Autism Awareness month draws to a close I find myself reflecting on my relationship with Benjamin. He is at times a terror and at times an angel. He exhausts me and fills me with energy all in the same one hour period. I would so love to know what he is thinking. When he bangs his head he breaks my heart and when he giggles he melts it. He fills me with pain and agony, joy and hope, confusion and clarity. How can one small human being control a life so fully? And then I think - the answer is simple, in this one truly magnificent way he is just like any other child of any other parent. All of them bring us hurt and pleasure, joy and sadness, fear and hope and we are all LUCKY to share their lives with them. So, when you think of me and my Benjamin don't ever feel pity or sadness for me because my life with him and all of the mystery it involves is priceless.

 

 

[Retired and Happy (Ken) 101]

What a beautiful summation of your life (every day) experience.  We have three special needs children, all with physical and mental developmental delays.  Two will likely always be close to total care.  Not sure about the baby yet.  We have hope for all of them that they will develop to the best of their abilities, and they will be happy.

[kadancer 82]

Thanks for the kind words.  As long as we have hope, anything can happen.

[disneylitch......Debbie 61]

My grandson was just diagnosed with mild aspergers and severe sensory disorder.  Fortunately, my daughter always knew that there was something going on with him.  We knew that as well.  I do substituting teaching at John Archer School, a school in Harford County MD for special needs children.  I also have a special needs grandson, so we knew a lot already.  She was able to get him tested and diagnosed very quickly once they moved to Parris Island, SC.  While in California, they said he was too young.  He will be 4 on Halloween.  He attends pre-pre K and is doing well in school. 

We go to Disney with them and that is a challenge sometimes.  He gets very anxious on some rides and manages to poop his pants a lot and he is completely potty trained at home.  We just figure that there is so much going on at Disney that he just forgets to go.

It is great that autism and in general, special needs, is not being hidden anymore.  Everyone needs a support system when they have a special needs child.

 

[Retired and Happy (Ken) 101]

Fortunately Disney is so large and varied you can go at whatever pace and types of entertainment are needed for most any level for our special ones.

 

And I am happy to see this thread expanding.  It has been dormant for long periods.  

[kadancer 82]

On 9/20/2016 at 11:06 AM, disneylitch......Debbie said:

My grandson was just diagnosed with mild aspergers and severe sensory disorder.  Fortunately, my daughter always knew that there was something going on with him.  We knew that as well.  I do substituting teaching at John Archer School, a school in Harford County MD for special needs children.  I also have a special needs grandson, so we knew a lot already.  She was able to get him tested and diagnosed very quickly once they moved to Parris Island, SC.  While in California, they said he was too young.  He will be 4 on Halloween.  He attends pre-pre K and is doing well in school. 

We go to Disney with them and that is a challenge sometimes.  He gets very anxious on some rides and manages to poop his pants a lot and he is completely potty trained at home.  We just figure that there is so much going on at Disney that he just forgets to go.

It is great that autism and in general, special needs, is not being hidden anymore.  Everyone needs a support system when they have a special needs child.

 

Hi!  I am also a substitute in Harford County, but I don't go to John Archer very often because of the early arrival time.  My son is on the severe end of the spectrum and attends the LEAP program at Kennedy Krieger.  We had some similar potty issues so we started making bathroom visits part of his "schedule."  After a couple of trips, he figured it out  and now we don't have to schedule anymore.

[disneylitch......Debbie 61]

40 minutes ago, kadancer said:

Hi!  I am also a substitute in Harford County, but I don't go to John Archer very often because of the early arrival time.  My son is on the severe end of the spectrum and attends the LEAP program at Kennedy Krieger.  We had some similar potty issues so we started making bathroom visits part of his "schedule."  After a couple of trips, he figured it out  and now we don't have to schedule anymore.

Hi, it's a small work.  Who would have thought 2 people from Harford County meeting on Fort Fiends.  Thanks for the suggestion and I will let my daughter know.  I agree with you about the early start time at John Archer, but I can make it work because I don't have children at home anymore.  I think it is a great school to substitute.  Everyone is so friendly and you truly feel like they want you there.  Hope your son is doing well at Kennedy Krieger.

[kadancer 82]

16 hours ago, disneylitch......Debbie said:

Hi, it's a small work.  Who would have thought 2 people from Harford County meeting on Fort Fiends.  Thanks for the suggestion and I will let my daughter know.  I agree with you about the early start time at John Archer, but I can make it work because I don't have children at home anymore.  I think it is a great school to substitute.  Everyone is so friendly and you truly feel like they want you there.  Hope your son is doing well at Kennedy Krieger.

We visited John Archer when my son was finishing Child Find and I thought the teachers there were fantastic, but the autism program at Hickory was a better fit for him.  Unfortunately, they were unable to service his needs in county, so we were lucky to get a spot at LEAP.  We have been pretty happy with the programs there.  I enjoy subbing and am now pursuing a degree in education (very slowly).  It seems like most of the elementary schools in the county are filled with kind, helpful people.  Glad to meet you - it really is a small world afterall....

[memouse 0]

Edited to add:  Sorry, just realizing that this is a thread for autism.  

Hi!!  I'm sorta, but not really, new here.  Life happens and have not had time for my Disney obsessions.  I'm planning our next trip for the end of May/beginning of June. I just wanted to say we have a 7 year old daughter in a wheelchair.  She has a very rare neurological condition, MLD.  She absolutely loves all things Disney and FW is the perfect place for us to stay with her.  We've navigated the fort and disney for many years with a wheelchair.   Her older brother, that now lives in Heaven, was also in a wheelchair and we always did the fort and disney with him.  It is our happy place where all disabilities become abilities.  Anyway, just wanted to say hi!  Does anyone else have kiddos in wheelchairs that love the fort???

Edited January 13, 2017 by memouse
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[fladogfan aka Gretchen 259]

Welcome back memouse,

Sorry about your older son no longer being with you on earth.  Glad you are coming back to the fort.  There are other fort fiend families with children in wheel chairs.