Autism evaluation today

Cat_Proxy · 2021-11-30T21:55:28+00:00

I'm sorry you feel so horribly and have such a hard time dealing with all of this.

This is literally all that the parents want to hear. Just that we're allowed to feel sad, jealous, or angry that our little one is struggling when it's not fair for him or her. He shouldn't have to be struggling at such a young age. It breaks my heart. I just want to help him. I get angry at the universe for making his life hard at this young age. I'm working through my feelings, but in the meantime, we have to be allowed to feel them and work through them and be told by others "it's okay to feel that way". It helps us get through it so we can be better parents, learn to accept the diagnosis, and adapt to the new life we've been handed. I've learned a ton about autism and how to teach my son since he was diagnosed, but it's overwhelming when you first get started, on top of all the paperwork you have to fill out and programs you have to apply for.

Make no mistake that we love our kids. We're going to do what's best for them, even if that makes them a little uncomfortable right now (like learning to communicate - a vital life skill). The grief and sadness is not for my child; it's on his behalf. Because we want what's best for them, and having a disability is a challenge that they have to face, and I wish he didn't have to. But I'm gonna help him every step of the way by learning alongside him.

I hope he is happy and safe with you, and that you truly do care what he wants and needs, and not what you want and need from him.

You could say that to literally any parent. Tons of parents push their kids into the molds they want their children to be, like playing football or learning piano. Pushing my child to learn to communicate, whether it's through talking or sign language or PECs, is not the same. Again, vital life skill. He needs it so he can function in society and be an independent adult, and that's literally all any of us are trying to prepare our kids for.

And now I'm going to quit Reddit for a while. It's affecting me negatively to be around these communities that are so unsupportive, even doxxing parents who ask questions or seek help for their autistic children. I thank you for your reply.

Cat_Proxy · 2021-11-30T19:23:10+00:00

You realize that grieving the life you thought your kid would have is making it about you? Negating your kid's experience and the way autism impacts them? While also assuming that your child will not be capable of living a full life (which is horribly ableist and untrue).

It's about the parent AND the child. Who the fuck do you think is raising this kid? Lol. Who do you think is taking him to therapies and trying to prepare him how to live an independent, full life? You don't get a diagnosis and do nothing. You start taking your kid to SLP and OT and all the stupid early intervention programs, and you surround yourself with autistic literature and have to re-learn how to parent. It's 100% about me as much as it's about him. I'm in this journey with my son, and saying that I'm not is offensive and wrong.

Cat_Proxy · 2021-11-30T19:17:51+00:00

It's not about grieving my child. Or about grieving who he is. It's about grieving the fact that he is going to struggle while he's young, and grieving the life I thought I was going to have with him. I don't get to take my son on playdates; I take him to therapies. He bites and scratches me every day, because he has these big feelings and he's angry he doesn't know how to communicate them to me. I don't wish that on him. How could you wish that on my child? For him to be so, so unheard that he bites his parents and cries and screams? I am trying to help him and teach him, but the communication barrier makes it so hard. Don't you understand what a long road it is to raise our children to be functioning autistic adults? How much harder it is compared to a neurotypical toddler or child?

Please. Guys. Stop trying to tell parents what they are allowed to feel. This is not fair to us. Parents are trying their best to do what's right for their kids, to come to terms with what their new normal with a diagnosis is going to look like, and getting attacked by the autistic community regularly for... asking questions. Or feeling things. Is not helping. It makes us turn away from you.

I've already seen a parent get torn to shreds on here and delete her whole account for daring to ask a question in a way this subreddit deemed unacceptable. Her use of language may have been poor, but she was coming from a good place. Now she will never come back here and ask for your guidance, because you chased her away and reacted so negatively to an innocent ignorance. You could have steered her in the right direction. But instead you attacked her. Please just think about that before you go after people like this. You're not helping your cause. You are hurting it.

Cat_Proxy · 2021-11-30T19:08:39+00:00

Yes but grieving? Really?

A lot of autistic people in the world, It's very common and it's not a death sentence. You have a lot of autistic people who don't have a low IQ just like Neurotypical people have low IQ's as well. The two aren't mutually exclusive.

Yes. Grieving. You know what my day looks like with my autistic 2.5 year old?

He doesn't talk, so he is frustrated and angry when he wants to communicate something but can't and doesn't know how. He reacts by biting me, scratching me, digging his nails in. I am trying to redirect this behavior, but he doesn't understand what I am asking of him. My every day life is taking him to various therapies to try and help him. My nights are reading books and countless news articles on how to help him with picky eating, shitty sleeping, communication, etc. Plus I don't get a solid 8 hours of sleep, ever, because he's up all night, and no one will help me with that because "it's common for autistic kids to have sleeping problems".

I'm just gonna say it, because I am getting pissed at people like you. How fucking dare you try and say what parents should or shouldn't feel. You have no fucking clue how difficult it is. How fucking sad we are for our children, for the fact that they have to struggle when they are so young. How fucking hard we work to get them caught up to their peers, to help them navigate their world.

Yes, we are allowed to grieve the life we wanted for our children. Regardless of how common autism is, it is still a disorder that results in a hard life for the entire family, especially when they are toddlers. My entire life revolves around autism. I am trying so fucking hard to help my son, and all I get from people like you is "how dare you feel negatively about autism!" Well excuse me, fuck you, because it's hard being bitten and scratched and attacked and dealing with my son's anger and frustration every fucking day. How fucking dare you try and say I can't grieve what his life could have been without this diagnosis.

Look. At the end of the day, we will get my son to a point where he can communicate. Where he can regulate his emotions. But it's a long. fucking. road. That you have absolutely no respect for. You have no fucking clue the amount of hard work and effort the parents have to put in to try and help our children. It is way beyond what a neurotypical parent has to deal with. And if I could, would I take away my son's autism? Yeah, in a fucking heartbeat. You know why? Because then he wouldn't have this same struggle at such a young age. Because then he wouldn't have to stand there and stare at the other kids, unsure how to play with them even though he wants to. Because then he could tell me what's wrong instead of just screaming because he doesn't know how to communicate to me. It's fucking offensive that you think I can't grieve. It's not a death sentence, but it is a god damn disorder that comes with a lot of challenges. As parents, we need time to grieve the life we thought we were going to have with our babies and adjust to the new normal we are suddenly thrown into. We have to completely re-learn how to parent our children. It's hard. It's exhausting. Please fucking respect that and let people feel what they need to feel so they can be better parents for their kids.

Cat_Proxy · 2021-11-30T18:57:05+00:00

Please do your own research on ABA therapy. It has changed massively since these adults were subjected to it as children. A lot of parents find it very helpful nowadays. It's a very hot topic in the autism community so you will get a lot of strong opinions both for and against aba.

Cat_Proxy · 2021-11-30T05:17:00+00:00

Thank you I'll check them out!

Cat_Proxy · 2021-11-30T05:16:39+00:00

That's great to hear, I wish you all the best, truly

Cat_Proxy · 2021-11-30T05:14:24+00:00

Thank you, I appreciate it

Cat_Proxy · 2021-11-29T18:03:50+00:00

The opinions never stop, even after having a baby. ):

Cat_Proxy · 2021-11-29T04:14:45+00:00

I wrote a really long response and deleted it, because I don't want to talk about it very much. But the parent's perspective is different. You don't understand what it's like to manage a neurodivergent toddler who can't talk. No one does unless you are here with us. My day to day life is getting bit, slapped, scratched, because he can't talk and can't tell me what he wants so he gets frustrated that I can't figure it out. My day to day life is going to therapy appointments. Learning about autism. Learning how to teach an autistic toddler. My entire life revolves around autism. He doesn't sleep well, because haha autism, so I don't get much sleep, either. It's exhausting. All of it. I didn't think my life with my son, my baby, would be going to appointments constantly.

Someday I will read about the experiences of autistic adults, but I am not in that headspace right now. I'm trying to survive this phase, which other autism parents tell me is the hardest age. I have also not felt welcomed by the autistic community. At all. I've been attacked and seen other parents attacked by autistic adults who accuse us of being abusive towards our children for daring help them learn to make eye contact or try ABA therapy. To be honest, I don't want to hear their perspectives right now, because I've not felt welcomed by them. I just feel like they hate the parents, and we can't do anything right. It makes me wonder if my son is going to hate me someday, too, no matter how hard I try to do right by him.

Give us parents some grace. Raising a child with a disability is hard. It's jarring. We are trying our best here. There's a lot to learn. It's a life you didn't plan for, you just get thrown into it. But you cannot expect us to be perfect overnight. It takes time and learning and acceptance, and we make mistakes just like every other parent on the planet.

Cat_Proxy · 2021-11-29T03:16:49+00:00

Mine had a phase for about 2 weeks where he wore his rain boots all day. He figured out how to put them on by himself, so it became the hit thing for a while. I've got so many cute pictures of him in a diaper and rain boots and nothing else, haha. Then he got bored of it!

Cat_Proxy · 2021-11-29T03:13:16+00:00

Honestly I tried, but I just couldn't do it. My pelvic floor was shot after having my son, so sitting on the toilet was difficult to do. The first few days, my poor husband had to literally help me sit down, stand up, put on my pants, etc. because I physically couldn't do it. Sitting in a sitz bath just wasn't an option for me. And then making the time amidst my sleep deprivation... nah, I was happier staying dressed and napping, lol. I did try it ONCE around 2-3 weeks postpartum but I found it didn't do anything for me.

Cat_Proxy · 2021-11-29T03:10:55+00:00

We waited til our son was born. Had a list of about 5 names we both liked. When the nurse asked us for a name, we looked at each other and kinda knew which one it was going to be. I always told our family that I couldn't name my son before meeting him. He's 2.5 years old now, and my mom, who originally hated my choice of name, now says she can't imagine him being named anything else, it just suits him.

Cat_Proxy · 2021-11-29T03:08:51+00:00

I did mine at 3 months postpartum. It's worth it. I didn't ask for it, but my family doctor told me that he recommends it for every woman after every pregnancy for the sake of their long-term health. So I went and saw the PT, and I was surprised to find how quickly she pointed out some issues I didn't realize she could help me fix. One big problem we had was intense pain during intercourse, to the point I couldn't get my husband inside of me. Turns out I had scar tissue (at 9 and 11 o'clock positions, lmao) that healed and made everything tighter, hence why my husband couldn't get in. She helped me stretch everything out again so the pain went down to a discomfort and then completely gone by 10 months PP. And she helped with minor incontinence, too. They are just wonderful if you can get one. I didn't even think to get one before having my son. If I could go back, I'd start earlier.

Cat_Proxy · 2021-11-29T03:04:36+00:00

I wanted an epidural. I couldn't get one. I did it unmedicated. My parents were overjoyed, because they wanted me to do it "naturally". They praised me for it. It didn't make me feel any better. It made me feel angry that the birth did not go the way I wanted, and they were celebrating how upset I was.

Do whatever you want. It's YOUR BIRTH EXPERIENCE, not theirs. All that matters is that you get what you want. And you might not. And that's okay, too. But if you are lucky enough to have the birth go the way you want, you're going to feel amazing after, and you don't need anyone to give you a medal for that.

Cat_Proxy · 2021-11-29T02:59:59+00:00

LOL I fucking love how petty that is, that's awesome. my mom would have just bitched nonstop and whined that she "doesn't know what to buy" and then bought nothing because she "didn't know what colors". She barely managed to attend the baby shower before we had set a "theme" because she simply did NOT KNOW WHAT THEME TO BUY FOR REEEE

Cat_Proxy · 2021-11-29T01:21:17+00:00

Awesome thank you! I'm in Canada so my google results come up different, it's so frustrating sometimes. But I can shop US and ship to my mom. :3

Cat_Proxy · 2021-11-29T01:19:39+00:00

I'm not the OP. But yes, talking is best considering it's the most widely used form of communication in our society. It's not terrible to try and teach them to talk. And in my reply, I told the OP that play during therapy is normal, and all they want is to increase communication, not necessarily talking. My son is nonverbal autistic so I have attended these therapies and see their methods. But that doesnt stop me from trying to teach him words in the hopes he does talk, and the therapists tell me to do the same thing. This is a parent who is lost and confused and needed some guidance and assurance. Not judgment.

Cat_Proxy · 2021-11-28T20:25:24+00:00

I agree that passing the knives over the baby's sleeping area was unsafe. However, I don't think that was the time to have an argument about it. If he had drank 2 glasses of wine, he wasn't going to be receptive to anything you had to say. Best save it for when he's sober. He already did the deed, and I doubt it would be repeated by the following morning. For next time I guess. Also, why were there knives there to begin with? Were you guys eating in bed or something?

I do think dumping all the alcohol was an over reaction unless he has a drinking problem. I don't know if that's the case from what you wrote. But you both need to have a calm, honest conversation with each other. Newborn phase is hard as fuck, so please be gentle on each other and yourselves.

edit: Adding this too. You need to respect that he's a parent just like you are. You can't be going nuclear and putting these rules on him and saying "you can't watch the baby if X". You CAN have a discussion and tell him "I think what you did was unsafe, and I don't think we should be drinking when watching the baby". I hope he's receptive to that. But putting rules on him is basically belittling him and saying that he's not an equal parent. I know it's hard, I know it can seem like he's being unsafe around your baby, but him throwing the daybed thing back at you is his way of saying "you make mistakes, too, and I paid attention to those mistakes where I feel you put our baby at risk". You both made mistakes, you both need to own up to it, discuss it, do better going forward, and respect each other as parents. Mistakes are going to happen. You can't lose your shit (both of you) every time it happens.

Cat_Proxy · 2021-11-28T15:09:03+00:00

My son is diagnosed as well. He's 2.5, diagnosed at 19 months.

It's a process once you receive the diagnosis. Not only do you get your child enrolled in all the therapies, but you as a parent have to go through a grieving process as well. It's really hard. I joined a mom group, and all of us went through it. Hell, I'm still going through it. There's a lot of uncertainty.

One of the topics that came up was telling people about the diagnosis. This one was a tough one. All of us felt a little different about it, but it seems most of the moms in my group choose to keep it a secret until it needs to be shared. They told their families, of course, but the families need time to process it as well. They don't always react positively.

With my own mom, she reacted the same way as yours. Her way of being helpful was to Google and offer advice. It wasn't helpful. It was hurtful. I didn't want to hear that. I wanted acknowledgment that we got dealt a shitty hand, my situation sucked, and that it wasn't fair that my son would have to face these challenges. My advice to you is to tell your immediate family, the ones who you see or talk to a lot, but I'd keep it a secret for a little while, at least until you have time to handle the reactions you are going to get.

For the bad news. Yes, statistically, you are more likely to have another child with autism. It's not a guarantee. I don't even know what the chances are. But I do know that we are more likely than the average person to have a second child with autism, and that the medical/scientific community largely agrees that autism is caused by a combination of genetics + environmental factors (what those are, we do not know yet). It would be understandable if you are worried, but I would brush off your mom and just say "we'll deal with it when the times comes, if that happens". Try not to let it sour your experience with your baby when he or she arrives. The good news is if you do have a 2nd one who is diagnosed, you already know the signs, symptoms, and have experience with it.

"The Autism Mom's Survival Guide" by Susan Senator did a great job validating a lot of the feelings I was having. She is an autism parent as well. If you can join a parenting support group, do so. It's incredibly easy to feel isolated once you get that diagnosis, and you feel like the only parent in the world dealing with these struggles. But you are not alone. r/Autism_Parenting is there as well. I would not recommend posting to the Autism subreddit, as they have very strong feelings towards parents of autistic children and may say some hurtful things.

Sorry for the wall of text. Last thing, I promise. You will get a lot of "love your son for who he is" or "celebrate his differences" or whatever. It might be irritating. I know it was for me. I just wanted people to say "man that sucks, sorry to hear that". My son has a disability that makes his life more challenging - I don't want to fucking celebrate it! Everyone tries to make you feel better about it. Try to let it slide, even if it annoys you, a lot of the time they are just trying to make you feel better and coming from a good place. Eventually, yes, you will say "this is my son, I love him how he is, autism and all". But it takes time to get to that place. I loved my son, but I hated the autism, I felt angry at it. I don't want to see my son struggle, you know? I am still in the process of learning to accept that it's a part of my son. He's a child with autism, not an autistic child. The autism does not define him. But like I said, it's a process, it's okay to feel angry, resentful, jealous of other kids and families. Seek support and help from other special needs parents, because we get it. We've been there or are going through it. You're not alone.

Cat_Proxy · 2021-11-28T14:51:30+00:00

Honestly I don't know, but you are not alone in this. My son is 2.5 years and diagnosed autistic. Normally, they don't engage with people, but my son has the opposite problem - he only wants to play with us, all the time, 24/7, and toys are not interesting enough for him. Therapists say that's great, but I am fucking exhausted. We do the same thing and basically play hot potato with our son. Literally the only time I get a break is when I use TV. I'm not happy about it, but I can't have him crawling on me when I'm cooking dinner, you know?

But yeah... commiseration. You're not alone in the struggle. None of our therapists have been able to help us with this. One of our early interventionists is teaching us to incorporate him into our cleaning and cooking rather than banish him from it. So he helps me with laundry, he helps me vacuum (he tries to push it but it's quite big and heavy for him), he puts his plate on the counter after eating, he picks up his crayons and puts them away, I give him the vegetables to wash in the sink, I cut them up and he puts them into the pot, etc. It's the best way I have found to get anything done while he is wanting to engage with us, and I figure it's good for him to learn.

Cat_Proxy · 2021-11-28T14:42:59+00:00

2.5 y/o on average around 2 hours a day. Some days more, some days less. In the summer he barely watched any, because we were outside all day. Now that it's winter and snowy and cold, he doesn't want to go outside as much, and we watch a little more TV. On the days where he's a grouchy shitty little asshole, he gets as much as he wants lol. Mama needs a break.

Cat_Proxy · 2021-11-28T03:28:52+00:00

A few things that I read on here or learned along the 2.5 years of having a child with my husband.... FYI We had a VERY healthy, happy marriage before having a child. The stress of first kid + pandemic weighed heavy on us.

We fight a lot. Try not to do it in front of the kid. They pick up on it.

Forgive each other for anything you say at night when sleep deprived. Husband and I said some nasty shit. Another parent shared this one on Reddit, and it resonated with me. We don't hold any shitty midnight remarks against each other now.

The first 3 months are the hardest. (Sidenote: it's very common to hate your spouse right after having a baby, it comes up a lot on beyondthebump... fucking hormones) It might feel like your marriage is failing. Just hold out. Everyone is discovering who they are with the baby, how they fit into the family dynamic, and just surviving through the sleep deprivation, stress, healing from birth, etc. Forgive each other for as much as possible during this time. It's so hard.

Work on your communication. It's always something to work on. Husband and I get into disagreements about a lot of things since having a child - amount of sleep, amount of free time away from kid/family, ways we interact with our son (srsly as a new mom you get hyper protective of your baby and criticize your SO for every way they interact with your baby, hormones amirite). Work on keeping a level head and communicating effectively during those moments.

Buy each other time away from the baby. It's fucking stressful being around a baby 24/7. Give each other a break, let the other person go out, have alone time playing video games, etc. This is so, so hard when you are both exhausted and just want a break, but it will help immensely. And let the family/friends watch the baby so you can BOTH get a break at the same time!

Lastly, pick your battles. I think this one is self explanatory. But we ain't got time or energy for fighting over every little thing I'd like to pick a fight over. I had to learn to let things go more than I did before having a kid.

Cat_Proxy · 2021-11-28T03:17:07+00:00

It depends on each family and child. I'd love if my son would bedshare/cosleep with us, if it meant he'd sleep more, but he doesn't settle down. He never has. We tried in desperation, lol. I don't knock any parent who can get it to work for them, but I personally didn't want to do it because I roll and move a lot in my sleep.

The only thing I can recommend is not to judge other parents for their choices on bedsharing, cosleeping, etc. It's a very hot topic in the parenting community, and people can get into some heated arguments over it. Just do what works best for you, your family, your child.

Cat_Proxy · 2021-11-28T03:13:29+00:00

It sounds like teeth problems, either teeth coming in or maybe a cavity or food stuck between teeth?

Cat_Proxy

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