How to accept my SN child fully

[Anonymous]

Anonymous wrote:Just talking about things matter of fact like they are normal (and they are to me) really helped me. Speaking the words and getting comfortable with talking about our lives. It was no easy thing because some of it felt so embarrassing- like having to call the police on your own child who is violent or calling off work because your kid had to be hospitalized again after another suicide attempt.

I agree with this post a lot. I am the poster whose kid has profound ID. I have no problem being like “oh, today my kid ate her poop and I had to bathe her again” or “oh, she started her period and I’ve got to get her on birth control to stop it, because I’m not dealing with a period in a diaper.” I am just very matter of fact about exactly what our life looks like. I’m not embarrassed by any of this.

I also agree with the person that says you have to give up a little bit of hope. You have to let go of expectations.

I also totally understand the OP follow up of NOTHING IS EASY. Our life is very much like this. Nothing is easy. But, we have made it ok and are happy. One of the things we have done is outsourced care. We have to get a break from it. So, I would suggest OP consider this if you can afford it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Just talking about things matter of fact like they are normal (and they are to me) really helped me. Speaking the words and getting comfortable with talking about our lives. It was no easy thing because some of it felt so embarrassing- like having to call the police on your own child who is violent or calling off work because your kid had to be hospitalized again after another suicide attempt.

I agree with this post a lot. I am the poster whose kid has profound ID. I have no problem being like “oh, today my kid ate her poop and I had to bathe her again” or “oh, she started her period and I’ve got to get her on birth control to stop it, because I’m not dealing with a period in a diaper.” I am just very matter of fact about exactly what our life looks like. I’m not embarrassed by any of this.

I also agree with the person that says you have to give up a little bit of hope. You have to let go of expectations.

I also totally understand the OP follow up of NOTHING IS EASY. Our life is very much like this. Nothing is easy. But, we have made it ok and are happy. One of the things we have done is outsourced care. We have to get a break from it. So, I would suggest OP consider this if you can afford it.

This is OP. When you talk about your life, does anyone get it? I’m crying as I type this because part of what’s hard for me is that no one in my life understands what my life is like. I know I need to connect with other families like ours, but I have found that hard. (I’m a single mom with a behaviorally challenging SN child. When I meet a mom at OT, she has a partner and a lot more financial resources than me, so her life looks really different than mine. When I meet a mom at school with a special needs child, her child doesn’t have behaviors, so she’s mad that mine gets services so easily and is sometimes disruptive to the classroom and to her child.) My friends don’t get it at all, even if they try to. I feel lonely. Or crazy. I don’t even think my therapist really gets it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just talking about things matter of fact like they are normal (and they are to me) really helped me. Speaking the words and getting comfortable with talking about our lives. It was no easy thing because some of it felt so embarrassing- like having to call the police on your own child who is violent or calling off work because your kid had to be hospitalized again after another suicide attempt.

I agree with this post a lot. I am the poster whose kid has profound ID. I have no problem being like “oh, today my kid ate her poop and I had to bathe her again” or “oh, she started her period and I’ve got to get her on birth control to stop it, because I’m not dealing with a period in a diaper.” I am just very matter of fact about exactly what our life looks like. I’m not embarrassed by any of this.

I also agree with the person that says you have to give up a little bit of hope. You have to let go of expectations.

I also totally understand the OP follow up of NOTHING IS EASY. Our life is very much like this. Nothing is easy. But, we have made it ok and are happy. One of the things we have done is outsourced care. We have to get a break from it. So, I would suggest OP consider this if you can afford it.

This is OP. When you talk about your life, does anyone get it? I’m crying as I type this because part of what’s hard for me is that no one in my life understands what my life is like. I know I need to connect with other families like ours, but I have found that hard. (I’m a single mom with a behaviorally challenging SN child. When I meet a mom at OT, she has a partner and a lot more financial resources than me, so her life looks really different than mine. When I meet a mom at school with a special needs child, her child doesn’t have behaviors, so she’s mad that mine gets services so easily and is sometimes disruptive to the classroom and to her child.) My friends don’t get it at all, even if they try to. I feel lonely. Or crazy. I don’t even think my therapist really gets it.

OP, I’m not that PP and I have no idea how to find people who really get it but I wanted to say my child went through a period of behavioral issues and it was incredibly isolating. I do have a partner and my mom is very supportive so I was lucky in that regard. But maybe try to find people who can support you more abstractly. I have a coworker who is now a friend who just was very kind to me and accepted me crying in our office when I thought we were going to get counseled out of preschool. I did not go into a lot of details because it was hard to trust people but if there’s some one who can see your struggles even without understanding that can be something.

If you post here I will try to encourage you and I think others will too. FWIW my child had different underlying issues but 5 was the peak of behavioral issues. I hope things improve for you soon.

[Anonymous]

Another single mom with a behaviorally challenged child here and it's true people have much less empathy for a child with behaviors and there's going to be a lot of blame and judgment going around.

It's okay to cry and be upset but you seem fortunate in a lot of ways. You seem well educated and a great mom which is a big thing for your child's future.

I stopped feeling so terrible when I attended a special needs seminar a few years ago and heard about the challenges other parents were facing and they were so much more extreme. than my child having a meltdown at an activity. One family was trying to get help because their child would only go the bathroom in one area of the living room on the floor. I also met parents whose children were having serious mental health crises and had to be hospitalized and they were kind enough to give advice about things I could do to support my child to avoid something like that. It was really moving to me that they took the time to do that. I know you feel alone but you are really not. Hang in there OP.

[Anonymous]

Maybe try to find a support or advocacy group OP. I have a niece with Down's Syndrome which is terrible. Even worse, I have a 3 year old great niece who will never walk or talk. Both moms belong to groups to try to make it through the day. I feel fOr you + hope someone can help you. Many people have no idea how lucky they are to have "normal" kids.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just talking about things matter of fact like they are normal (and they are to me) really helped me. Speaking the words and getting comfortable with talking about our lives. It was no easy thing because some of it felt so embarrassing- like having to call the police on your own child who is violent or calling off work because your kid had to be hospitalized again after another suicide attempt.

I agree with this post a lot. I am the poster whose kid has profound ID. I have no problem being like “oh, today my kid ate her poop and I had to bathe her again” or “oh, she started her period and I’ve got to get her on birth control to stop it, because I’m not dealing with a period in a diaper.” I am just very matter of fact about exactly what our life looks like. I’m not embarrassed by any of this.

I also agree with the person that says you have to give up a little bit of hope. You have to let go of expectations.

I also totally understand the OP follow up of NOTHING IS EASY. Our life is very much like this. Nothing is easy. But, we have made it ok and are happy. One of the things we have done is outsourced care. We have to get a break from it. So, I would suggest OP consider this if you can afford it.

This is OP. When you talk about your life, does anyone get it? I’m crying as I type this because part of what’s hard for me is that no one in my life understands what my life is like. I know I need to connect with other families like ours, but I have found that hard. (I’m a single mom with a behaviorally challenging SN child. When I meet a mom at OT, she has a partner and a lot more financial resources than me, so her life looks really different than mine. When I meet a mom at school with a special needs child, her child doesn’t have behaviors, so she’s mad that mine gets services so easily and is sometimes disruptive to the classroom and to her child.) My friends don’t get it at all, even if they try to. I feel lonely. Or crazy. I don’t even think my therapist really gets it.

I’m the first PP in this part of the conversation. My life is not made up of parents of kids who have special needs. I have a few friends whose kids do, but it’s not that big of a group and it is almost totally online. I also have some grown up nieces with whom I’m really close. Really, I don’t think anyone gets what it’s like to live my life, except maybe for one work friend (and I transferred departments so I don’t see her) and my online friends, who talk only when one of us is in crisis. But people know it’s my life because, for better or worse, I talk about it.

When my child went through an unbelievably difficult mental health crisis that lasted years (seriously years) I lost friends because most people were exhausted just from hearing about a single evening in my life. And if I didn’t talk becaise I knew I exhausted them, they avoided me. That was tough and really sad for me.

On occasion acquaintances have made comments about my kids disruptive behavior and because so much happened in HS, their kids could tell them more details than I even knew. I always responded by reminding them that it’s not only smart and well behaved kids who have a right to education. Mine does too and I am fortunate to have a team who makes that happen. (I always had great IEP teams).

I think your life is harder than mine. I am married and I have other kids (and really fantastic dogs). One of my kids has low IQ, but honestly that’s nothing compared to behavioral issues. I mean, the worst I heard was scorn about my decision to “let” him go to go tech. While I’m pretty much on my own to take care of whatever needs exist, I never get pushback and I have two incomes to work with.

Like PP said, we can be your support. Lord knows, I’ve posted novels on this forum when I needed a kind ear and people did not disappoint. This is a tough road and I hope you can find some pride within yourself for the amazing job you’re doing to sustain you during tough times.

[Anonymous]

OP, my dd, who is now 8, has a similar profile to your dd's (dx asd and spd, likely anxiety too).

I will say-my dd's behavior at 8 is far different than at 5. She really blossomed in the last year and a half. The meltdowns have diminished to nearly none (she is learning to manage her emotions). She wasn't a major eloper, but it did occur-that's gone too. OP, sounds like you and she are doing the right things (therapies, ect) and I think things will change for the better for you both!!! My dd made big strides in 1st grade (2nd now) so this child you have at 5, will change.

I understand what you are saying about accepting her for who she is. My dd is fun and amazing! but she also can be difficult and unpleasant (not often). I have to remember that the world probably looks different to her than it does to me and things affect her differently.

I wanted to 2nd (3rd?) what PPs have said about horse therapy/animals. Although my dd is scared of horses, I've known kids, particularly girls, like ours who LOVE them and the riding/grooming therapy! It might be worth a try. (as an aside, my dd petted a therapy horse last weekend!!! progress!)

[Anonymous]

My son has adhd, and anxiety, not asd. But I hear you on being the parent of a behaviorally challenging child. It is so, so hard, and so, so isolating. I get it. You are not alone, I promise.

[Anonymous]

06:50 PP again (now that I've had coffee)

OP, part of how my life is different-I'm divorced, and my life is built a lot around dd (I do have young adult NT kids but she's my only minor). My home-well in my living room is a mini trampoline, a nugget-type play set, a scooterboard, a gym mat, and magnatiles that occasionally get picked up and put away lol. Alongside a sofa and stuff. Sensory stuff REALLY helps my dd calm down. So, it's ok that my living room probably does not look like what other people's do. It is what works for MY dd. It helps make my life better, because it helps her. I just wanted to mention these things, in case you werent' familiar with it (you may be).

[Anonymous]

This is OP. Thank you all. You’re very kind. Animals are my daughter’s special interest. She would love something with horses. But budget is a concern. Horse stuff is expensive. We are in northern Virginia. Frying Pan Farm has a therapeutic riding program, but it’s in the evening, and my daughter goes to bed early. I really can’t alter her schedule, even for something she would very much enjoy and benefit from. Because routine.

If folks know of another option for getting her exposure to horses, or other animals, in a therapeutic way, I’m definitely game.

[Anonymous]

https://liftmeup.org/therapeutic-riding

This one is in Great Falls.

[Anonymous]

One other: http://sproutcenter.org/

[Anonymous]

Anonymous wrote:This is OP. Thank you all. You’re very kind. Animals are my daughter’s special interest. She would love something with horses. But budget is a concern. Horse stuff is expensive. We are in northern Virginia. Frying Pan Farm has a therapeutic riding program, but it’s in the evening, and my daughter goes to bed early. I really can’t alter her schedule, even for something she would very much enjoy and benefit from. Because routine.

If folks know of another option for getting her exposure to horses, or other animals, in a therapeutic way, I’m definitely game.

I'm not local but I did look at the links and they both had financial aid/scholarship info. Also, *some*insurances pay for hippotherapy.

[Anonymous]

Rainbow Riding in Haymarket- they have some spots for those who need scholarships

[Anonymous]

Anonymous wrote:5 is hard because it's a time of high energy but especially for kids with SN they are not able to communicate what they want to be doing and when they are overwhelmed and need to leave. That's why you see meltdowns because it's communicating that whatever is going on is too much.

It will get easier OP. You've learned ballet and soccer are not for her right now and that's a start. One day soon you'll find things that are easy and that will be a great day.

I know a few families like PP's whose children have done well with animals. Do you have a pet or can you see how your child does with a small pet?

Omg, I could have written the OP.
Do.Not.Get.A.Small.Pet

There is help, though, I think. I can feel myself getting better about accepting my son day by day and week by week.
Locally, there is the Raising Orchids group. I am a big believer and it’s really helping me. Please look them up. Gabriel and Jen.

Also, there is the fact that she’ll grow some. She has the executive function of a younger child in the body of an older child.
This is a marathon. For now, focus on the positive. I’m sure you’re doing better than you give yourself credit for. I will say, they are sensitive to how we’re feeling, so check your energy and judgement around her, and she will probably do a bit better, too.