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Moms with kids on the spectrum please come in

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Dolphinsbaby
My 3 little guys!

Member since 12/10

2747 total posts

Name:

Moms with kids on the spectrum please come in

My 3 year old was diagnosed with mild autism during his EI evaluation by a psychologist who met him for about 30 minutes. He was getting PT, speech, OT, and ABA.

My in home ABA therapist really felt his issues were way more behavioral and she did not think he had autism, but if so felt he was extremely high functioning. Honestly, I don't care if he has/doesn't have it, I just want him to progress and be as 'normal' as he possibly can. But yes, he is extremely stubborn and the older he gets the worse it is getting.

Anyway, fast forward to now, he is in CPSE and just started in a full day school program end of May. So it's only been about a month. So DH and I (and my SIL and niece) went away for 2 days with the kids to Kalahari. Had a great time.

My LO I guess was overstimulated? I'm not really sure because he doesn't communicate. Had meltdown after meltdown. I kept having to leave the water park, pool, arcade, whatever, to come back to the room with him. He is an extremely picky eater which doesn't help matters either when we're away. He pretty much needs to have an abc video on the iPhone or iPad to eat or just stay quiet at all (I hate this but can't seem to break this habit and obviously didn't have my phone in the water park).

My in-laws did not want him to go with us and said they would keep him (they still very much baby him which is a whole other issue). But I said no, he is part of our family and going on our vacation. I fee terrible even saying it, but I was so miserable. I was embarrassed many times (I know I shouldn't be, but I can't help it). He was such a terror and DH was totally overwhelmed and kept leaving me. At one point my LO was screaming so much in the room, I just started crying too.

DH thinks he was out of his element and that totally threw him off. Like at home he sleeps in a crib, but while we were gone he slept with DH and I and was a complete nightmare to go to bed and stay asleep.

I set up an appointment with a developmental ped for sept (I made it months ago), because I just want to know for sure what he has and how I can help him and if we are giving him everything we can. I am just so disheartened. My other 2 kids were so good and I just felt terrible I couldn't spend as much time with them.

Not really sure what I'm looking for here? This whole world is new to me and I just try to understand where he's coming from and try to console him and pat him and give him squeezes. Any other btdt moms? None of my close friends have children on the spectrum although my best friend is a special Ed teacher so she said he was definitely overwhelmed and not used to so much and can be a lot for any little kid especially one on the spectrum and he doesn't communicate which makes it 100x worse.

Just feel bad when people ask oh did you have a great time when I was dealing with this nightmare, kwim? I guess I am having a pity party for myself tonight.Chat Icon

Message edited 7/1/2016 9:57:20 PM.

Posted 7/1/16 9:55 PM
 

Domino
Always My Miracle

Member since 9/05

9920 total posts

Name:

Re: Moms with kids on the spectrum please come in

A little background on my now 6 1/2 y/o. At 19 months he was diagnosed as PDD-NOS. All his ABA therapists said he was high functioning, was smart and may not be on the spectrum. He entered his school based program at ae 3, non-verbal and within 6 months was talking full sentences. His first year was great. His second year was less so. His teacher was not a good fit and felt he was behavioral and not ASD. I had him re-evaluated, since PDD-NOS had been done away with and he did not have enough behaviors for an ASD diagnosis and instead received diagnosis of ADHD and ODD. With all that being said, while no official ASD on paper, my son is definitely "spectrumy." It sounds like your little guy has a lot of sensory things going on with him and new places, lots of stimulation, being away from what is familiar are all big causes of tantrums, meltdowns, etc. I have found that I have had to adjust my expectations of events and activities. I tried to gear things towards more sensory friendly things. I tried to bring more familiar things (food, stuffed animals, etc.) as possible when we were away. As they get older some kids are able to navigate and regulate their environment better which equals less meltdowns. There are others who even at an older age, especially where social anxiety comes into play, where any new situation can be very challenging. I can tell you from personal experience, my husband handles things a lot differently. A lot of time I feel alone when the bad days hit. Maybe because I am with my son most often and have learned what sets him off and what works to calm him. Another thing that comes with time is how thick our skin gets. I used to cringe thinking about what other people were thinking. Now I dont give a crap. I picked up a few cards from our last SASI meeting given out from the owner of Missing Piece Awareness that have this on the back: "THIS IS AUTISM. Thank you for your concern and understanding. What may be disturbing or disruptive and look like poor parenting is actually a neurological disorder. My child has autism and perceives the world differently. Please be patient as I make the effort to help my child get through another day in a world that is often confusing and overwhelming." I do not know where you are located but feel free to come to a SASI meeting, I can assure you that every one of us has been where you're at and will help you not feel so alone Chat Icon

Posted 7/2/16 9:42 AM
 

Dolphinsbaby
My 3 little guys!

Member since 12/10

2747 total posts

Name:

Re: Moms with kids on the spectrum please come in

Thank you so much for your post. You have no idea how much I needed to hear it. I would love to go to the SASI meeting but it is a bit too far. I am in Queens.

Looking back, it is my fault. I brought him into a completely new environment and had him sleep somewhere unfamiliar and didn't bring his favorite teddy bear or fish he sleeps with. I think I might also purchase a weighted blanket and maybe a brush for his skin for him for when he starts to feel overloaded.

We haven't really told too many people about his dx. DH feels like it's no one's business, but I'm like look when he acts up or isn't talking, wouldn't you rather people know than think he is a bad kid? We have a bbq to go to next month with some of his work friends and I just know he is going to act up, plus I'm pretty sure ppl start to suspect when they call his name and say hi and he doesn't respond and then they tell me how their child was talking at 2 and never shuts up. And how I then want to crawl into a corner and just cry my eyes out. DH is slowly coming around. I know it's hard for him too.

It's funny because he has words and a lot of them but doesn't use them. When the therapist would do flashcards he would point to each one and say the word perfectly. Things I didn't even know he knew-like flamingo, stuff like that. But he barely talks. She said it's because he's not being forced to use his language. For him it's easier to point, hence the behavioral part.

I hope school really will bring out his language. He will be going during summer but will have a different teacher than he had last month (he will have her again in sept but she goes away for summer), so it's hard for me to say how he's doing when he's only been there a month and now he's gonna have a new teacher and new therapists for summer. But I'm thankful he will be going and continuing therapy.

The teacher said they are working on his transitioning. He has outbursts when they transition which is very common. So she has been singing to him (he loves music) when it's time to stop an activity.

Hearing that your little guy's language progressed gives me hope. I think a lot of it stems from the fact he can't tell me what's wrong so it's so much guessing, is he thirsty, hungry, etc.? Can I ask what type of class your son is in now? It must be so hard not to have the diagnosis (not that you want it, but at least you could get all that he is entitled to!).

If anyone knows of any support groups in queens or even northern Nassau, please let me know. I see now how much I really need one. Thanks.

Posted 7/2/16 10:47 AM
 

MichLiz213
Life is Good!

Member since 7/07

7881 total posts

Name:

Re: Moms with kids on the spectrum please come in

Posted by Domino

A little background on my now 6 1/2 y/o. At 19 months he was diagnosed as PDD-NOS. All his ABA therapists said he was high functioning, was smart and may not be on the spectrum. He entered his school based program at ae 3, non-verbal and within 6 months was talking full sentences. His first year was great. His second year was less so. His teacher was not a good fit and felt he was behavioral and not ASD. I had him re-evaluated, since PDD-NOS had been done away with and he did not have enough behaviors for an ASD diagnosis and instead received diagnosis of ADHD and ODD. With all that being said, while no official ASD on paper, my son is definitely "spectrumy." It sounds like your little guy has a lot of sensory things going on with him and new places, lots of stimulation, being away from what is familiar are all big causes of tantrums, meltdowns, etc. I have found that I have had to adjust my expectations of events and activities. I tried to gear things towards more sensory friendly things. I tried to bring more familiar things (food, stuffed animals, etc.) as possible when we were away. As they get older some kids are able to navigate and regulate their environment better which equals less meltdowns. There are others who even at an older age, especially where social anxiety comes into play, where any new situation can be very challenging. I can tell you from personal experience, my husband handles things a lot differently. A lot of time I feel alone when the bad days hit. Maybe because I am with my son most often and have learned what sets him off and what works to calm him. Another thing that comes with time is how thick our skin gets. I used to cringe thinking about what other people were thinking. Now I dont give a crap. I picked up a few cards from our last SASI meeting given out from the owner of Missing Piece Awareness that have this on the back: "THIS IS AUTISM. Thank you for your concern and understanding. What may be disturbing or disruptive and look like poor parenting is actually a neurological disorder. My child has autism and perceives the world differently. Please be patient as I make the effort to help my child get through another day in a world that is often confusing and overwhelming." I do not know where you are located but feel free to come to a SASI meeting, I can assure you that every one of us has been where you're at and will help you not feel so alone Chat Icon



This is my son as well. PDD-NOS is no longer a diagnosis, so he's in this weird middle ground. He's got some "spectrumy" things going on too, but tests too high on the scale. It's frustrating. He's also terrified of loud noises and animatronics. So the few times we've tried to take him to Stew Leonard's has been horrible for him.

It's lonely as hell at points. DH and I have a fairly good handle on things as far as when DS is going to melt down or how to handle any possible situations in a new place that may set him off. But because he's not really diagnosed as anything, it's hard.

One of the only things that has helped me is that I have a brother with autism. My mother is a godsend. But growing up with it compared to DH who never did can make these situations frustrating for both of us. I recently joined a few Facebook groups (including SASI) and it has helped alleviate that loneliness. I know those feelings you're going through all too well. Chat Icon

Posted 7/2/16 2:30 PM
 

dpli
Daylight savings :)

Member since 5/05

13973 total posts

Name:
D

Re: Moms with kids on the spectrum please come in

Posted by Dolphinsbaby

Looking back, it is my fault. I brought him into a completely new environment and had him sleep somewhere unfamiliar and didn't bring his favorite teddy bear or fish he sleeps with. I think I might also purchase a weighted blanket and maybe a brush for his skin for him for when he starts to feel overloaded.

If anyone knows of any support groups in queens or even northern Nassau, please let me know. I see now how much I really need one. Thanks.



First, I want to say to you, don't say it's your fault. Your family went on a vacation and you wanted to try it, you deserve credit for that, it's a lot easier to stay home. So instead, try to think about it as a learning experience and think about what you can bring or plan for next time to make it more successful. This stuff is HARD. We went away with my son at 18 months and then not again until he was 3 1/2 for many of the same reasons - where/how would he sleep? how would I keep him quiet in the room? What would he eat? The first few trips were tough but each time, we figure out what works and what doesn't and adjust for the next time.

A few things that help us - we bought a baby aerobed for him, so that's where he sleeps when we go away on a driving trip. He loves it. I bring lots of food when we travel, or buy it on arrival. He's a super picky eater, so if there isn't anything on the menu in a restaurant for him to eat, I know I have something back in the room he will eat later. He plays the iTouch with headphones in restaurants. Sometimes I regret starting that, but in the beginning, he wouldn't sit for 5 minutes without it. We limit his time on it, so he's happy to sit and play while we can relax and eat. I don't always bring familiar items like a teddy bear, because I am more afraid of it getting lost and me not being able to replace it.

I occasionally tell people about his dx, it depends on the circumstances and the people involved. I have stopped caring about what other people think. Those who are close to us know our boy and if they can't handle him, I guess they don't invite us over anymore, which is fine with me. Parties are very stressful, so I would rather only go places where people are willing to accommodate us to some extent. Sometimes we take 2 cars, if one of us has to leave with him. We went to a huge family milestone birthday out of state. I left DH at the party with his family and we took a trip to Target because DS needed to step out, he needed a break. A waterpark or a party has a LOT of sensory input for them to process, so your life will be different, but try to think creatively of how to adjust things so you can still go to things, instead of avoiding them. Chat Icon

Message edited 7/6/2016 10:39:21 AM.

Posted 7/6/16 10:37 AM
 

Dolphinsbaby
My 3 little guys!

Member since 12/10

2747 total posts

Name:

Re: Moms with kids on the spectrum please come in

Thanks so much for the feedback. Yes, you are right. I just have to figure out to navigate all this. I never thought about planning it all out in advance how he would do. But, lesson learned. I realize that now. And when he starts to get upset I need to just remove him from the situation.

We did have some food he likes back in the room which helped and he ate pizza for 3 days straight (oh well).

We don't go away often. Probably won't go away again until next summer and maybe even then just for a day or two.

All your advice was so helpful. Thank you.

Posted 7/6/16 11:23 AM
 

JDubs
different, not less

Member since 7/09

13160 total posts

Name:

Re: Moms with kids on the spectrum please come in

Just wanted to send hugs because I can relate. We just came back from a trip and I guess going through the airport for DS was sensory overload because he was terrible in the airport but completely fine once on the plane. We just deal with it best we can although I do worry when he gets older- bigger and heavier.. right now we can just pick him up and carry him to get him moving along. I have tried to address these issues with our parent trainer but it hasn't been much help. Right now we try to distract him with other things, like i-pad and videos on our phone if he is acting up about something.

Posted 7/6/16 2:03 PM
 
 

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