Help me help my mom.

[KempsMama]

I'm trying to figure out how to help my mom. I don't know if this is the right place to post this, but figured you Mama's were probably my best resource right now. Here's some background;

My mom and step-dad adopted M at birth. She is a very bright 9 year old, but has been diagnosed with SPD. She has all the typical symptoms. When she was first diagnosed three years ago, they had her in PT and OT and on Zoloft. They have since quit all of the above-my mom had concerns about the Zoloft's side affects and she didn't feel PT/OT was helping enough to continue. I think the biggest reason, however, was that my mom was really sick (Pancreatitis and a secondary infection) and couldn't handle the demands of taking M to her therapies anymore. SD is no help. He works 60+ hours a week, and even when he is home he does NO parenting at all. He is a good man, but has his priorities way messed up, and my mom and sister are suffering because of it.

I'm very worried about my mother. She's been in recovery for 12 years. But if things continue the way they are, I fear she'll drive herself straight to the bar. Or worse, I'm worried that the stress she is under will make her sick again. Last winter she was so sick she lost muscle mass in her heart. I live two hours away. When I talked to her on the phone today, she sounded awful. I share some exciting news with her, and she said "I'm glad SOMEONE like their life. I hate mine. I hate my life. I can't do this anymore." All the while I could hear my sister having a tantrum in the background. I know my sister's untreated SPD is a major source of her stress, as much as her basically absent husband.

I'm worried about my sister. She is not where a 9 year old little girl should be. I worry about how she's going to handle puberty. It breaks my heart that she struggles so hard to just get through life and doesn't enjoy anything. It scares me that she is so high strung I can't turn my back on her and my DS for even a second when we visit. It kills me that my son is so stressed out by her behavior that he can only tolerate being at Grandma's for a couple of hours at a time. And my husband can't be around her at all-he has his own set of issues and she triggers his. (I often wonder if this is why SD is absent-but he was similar when I was a child, so I dunno.)


What can I do?? What resources might help my sister, or help my mom help my sister?? How can I encourage her to meet my sister's very demanding needs while preserving herself??

[Smithie]

I am so sorry for your family's trouble.

This is not something you can fix. You can love your sister, but you don't control how she is parented.

[confustication]

It sounds like everyone needs a break. Can you, and are you willing to, provide some respite for them? A weekend here or there?

You've been pretty vague about exactly what your sister's challenges are, as SPD can be a very broad range of experiences.

[BookGoddess]

Does your sister get any special education services at school? Does she have an IEP or a 504?

What exactly are her specific challenges?

[KempsMama]

Originally Posted by confustication

It sounds like everyone needs a break. Can you, and are you willing to, provide some respite for them? A weekend here or there?

You've been pretty vague about exactly what your sister's challenges are, as SPD can be a very broad range of experiences.

I am more than willing to provide respite, and have offered many many times. I've never been able to get a straight answer as to why, but my mom seems very uncomfortable with the idea.

I'm going to use a checklist from another site to share her specific challenges. If I try and list them myself I might sound like a total moron...

[KempsMama]

Originally Posted by BookGoddess

Does your sister get any special education services at school? Does she have an IEP or a 504?

No. She does best in school. In fact, during the school year things are a lot better. She gets all S or S+ grades, and is a lot happier during the school year. She goes to a private school.

Originally Posted by BookGoddess

What exactly are her specific challenges?

Ok, I was going to copy and paste something, but I think I'll try and wing it. I don't know how much of this is her SPD, and this may not be very PC-these are just the things I see that cause the most stress and difficulty.


M has major problems with touch. No "real" waistbands on pants, prefers very loose clothing, won't wear socks without a battle (they are required for her school uniform), no graphics on t-shirts (screen print), and I know there are a lot more "rules" with clothes. Her bedsheets must be flannel. All year round. She has to be tightly tucked in at night, if her sheets get untucked she can't handle it. Scared of the dark, still sucks her thumb constantly.


With regards to food, she overeats. She eats all the time, mostly junk. And she puts ketchup on everything. She won't try new foods, she won't eat 99% of my mom's cooking.

She could jump on her trampoline for days. This is the only activity she does, except watch the t.v. which is always turned up way to loud, or listen to her discman, which again, is at full volume.

Any negative interaction sends her into hysteria. Telling her no results in a huge tantrum.She obsesses and worries about everything. She's a very anxious child and has many "phobias".

She can't play by herself. She hates to be in a room by herself, and constantly hovers over others. She overstimulates my son-is always in his face, being loud, constantly trying to force him to do something or play a certain way. She has a meltdown when he doesn't play with a toy the "right" way.

She does well in school, but does not test well. She has a couple of good friendships with girls her age, but fights often with them and is very sensitive if one of them doesn't focus only on her.

There's a lot more, but the big issue for my mom is that if everything isn't just so, there's a tantrum/hysteria.

[confustication]

Ok, to make it easier for me, 'm going to go bit by bit- I apologize if that's annoying, as I know it can be, but breaking things down sometimes makes it easier...

Originally Posted by KempsMama

No. She does best in school. In fact, during the school year things are a lot better. She gets all S or S+ grades, and is a lot happier during the school year. She goes to a private school.

It really sounds like the structure and stimulation are good for her then. How structured is the home environment and how much really engaging stimulation is there?


Ok, I was going to copy and paste something, but I think I'll try and wing it. I don't know how much of this is her SPD, and this may not be very PC-these are just the things I see that cause the most stress and difficulty.


M has major problems with touch. No "real" waistbands on pants, prefers very loose clothing, won't wear socks without a battle (they are required for her school uniform), no graphics on t-shirts (screen print), and I know there are a lot more "rules" with clothes. Her bedsheets must be flannel. All year round. She has to be tightly tucked in at night, if her sheets get untucked she can't handle it. Scared of the dark, still sucks her thumb constantly.

There are some really great clothing companies that will help a lot with this- also, a lot of SPD kids prefer clothes from the thrift store as they are softer to begin with. It also sounds like she might benefit from a weighted blanket at night. A nightlight is a pretty easy thing to come by- and some are pretty 'cool' my daughter's is a color-changing LED light in a peace sign so it doesn't look little-kiddish.

With regards to food, she overeats. She eats all the time, mostly junk. And she puts ketchup on everything. She won't try new foods, she won't eat 99% of my mom's cooking.

Food stuff is hard. It's not a good battleground. We make it a point to always have things we know DD will eat accessible, and while we do ask her to try new things- repeatedly- we respect her limits. As for the junk- if no one buys it, it's not in the house to begin with, so that seems pretty simple to solve. The ketchup is something I would let go of as an issue.

She could jump on her trampoline for days. This is the only activity she does, except watch the t.v. which is always turned up way to loud, or listen to her discman, which again, is at full volume.

She is seeking stimulation. She probably needs a rich environment. I would also suggest that she sould do well with a good assortment of 'heavy work' tasks assigned throughout the day. For DD this is, stacking wood, mopping, moving rocks, taking out the garbage, hauling out baskets of wet laundry to hang... you can get creative- it really needs to be 'heavy' though.

Any negative interaction sends her into hysteria. Telling her no results in a huge tantrum.

We used to have this problem, and we still do have challenges with HUGE feelings. The only thing that works here is to remain absolutely resolute, and absolutely calm and quiet. The more she escalates, the quieter we get. She's going on nine and it is a million times better than it was a year ago even.

She obsesses and worries about everything. She's a very anxious child and has many "phobias".

Ah- I understand. We had a complete screaming meltdown because dd had to walk past a grasshopper in the hallway to get to the bath she had been told to take. I physically forced her to move past it, and we took an opportunity at a different time to look at one outside. I won't eliminate scary objects from her environment completely because she needs to learn how to work through it.

She can't play by herself. She hates to be in a room by herself, and constantly hovers over others. She overstimulates my son-is always in his face, being loud, constantly trying to force him to do something or play a certain way. She has a meltdown when he doesn't play with a toy the "right" way.

She needs to have a chance to practice social skills. A lot. In a safe environment. She also will need to be reminded that there are other ways to do things, and her way is not the only way- even when that makes her uncomfortable.

She does well in school, but does not test well. She has a couple of good friendships with girls her age, but fights often with them and is very sensitive if one of them doesn't focus only on her.

There's a lot more, but the big issue for my mom is that if everything isn't just so, there's a tantrum/hysteria.

The hysteria has to be met with empathy. Exhausting as it is, those feelings are very real to these kids. It really is the end of the world! at least, that's how it feels. It also has to be met with calm. Every. Single. Time.

[KempsMama]

What clothing companies are idea? This would help my mom a lot, as shopping for my sister is a horrid task for her. She has a uniform for school, but for home/vacation/summer she spends hundreds and then my sister will wear two outfits. Also, my sister is plus sized.

There is no structure at home. That's a huge part of the problem. There's no routine, no chores or tasks, not a thing. Every time my mom tries to implement a system, she gives up when M resists the change and SD refuses to back her up. It's the same with food. M freaks if she can't have the junk, so my mom caves. I know I can't change this, but I want to try and support her making healthy changes for the sake of them all. I hope that makes sense.

I left out one of the bigger issues before, M has major bowel issues. She has to take a stool softener every day to avoid getting severely constipated-even then she ends up severely constipated at least once a week.

ETA: She also has issues with bathing and hygiene. Which I don't understand, because she loves swimming. But M seems to struggle with cleaning and grooming herself.

[confustication]

In terms of clothing http://www.softclothing.net/ is one we've used (seamless socks!!), but The Children's Place and a few others work as well- most of the time, we hit up thrift shops for play clothes and she picks out stuff by 'feel'.

As for the rest, the reality is that if your mom wants her day to day life to be easier, she needs to do the work involved- taking your sister to therapy, creating the structure, managing what foods come in the door- all of it, and while it can be overwhelming initially, in the long run it will be SO much easier for everyone.

I really think she and her husband need to get on the same page about this, and if he won't/can't that's a whole different situation. A child like this will not do well in a home without consistency.

I don't know what the dynamic is for you and your mom, but would it be possible for you to stay there for a week- or even a weekend- just to help out, back her up, and provide some relief? Not to implement changes, but to say 'hey, ds needs to get out, why don't you (M) and I take him to the park now?' when you see your mom feeling frazzled? Would that be enough support that she wouldn't be completely overwhelmed in making the necessary changes?

Bathing and hygiene is a non-negotiable. My daughter is good at it now, but it's really only in the last year or so that it's not a huge battle- I only have to check to make sure she's really scrubbed her scalp well when shampooing- and even that I only need to do once in a while to keep her mindful of it.

[greenmom17]

Confustication - wonderful and thoughtful advice!

Kempsmama - is she involved in a tumbling or swimming class? They would provide her with the stimulation it sounds like she needs as well as the structure. Good Luck with your sister.

[StephandOwen]

Originally Posted by KempsMama

What clothing companies are idea? This would help my mom a lot, as shopping for my sister is a horrid task for her. She has a uniform for school, but for home/vacation/summer she spends hundreds and then my sister will wear two outfits. Also, my sister is plus sized.

This is sometimes an unpopular opinion but.... why not let her wear those 2 outfits? Or, rather, why not get her duplicates of those exact same two outfits? My ds has lots of sensory issues as well. Clothing is something we've struggled with for years. During the summer he will wear the athletic shorts and white t-shirts (plain, no tag, no pockets, must be "soft enough"). No other color shirt will do. Nothing but a plain white shirt. For the first couple years of this I kept buying him other colored shirts and patterned shirts and whatnot. But, you know what? It's not a battle I want to fight. I just did back to school shopping for him and bought him 5 plain white t-shirts from Target ($3.50 each.... 5 was all they had at the time in his size). In the fall/winter ds will wear athletic pants and plain white long sleeved shirts (with a white short sleeved undershirt under it... he *must* wear a short sleeve shirt, even if it's under the long sleeve one). So.... I will buy him 8 or 10 long sleeve white shirts when it starts getting a little colder. He has worn these same things (gym shorts, athletic pants and plain white shirts) for years. At this point- I'm thrilled he's wearing clothes

It sounds like she needs more structure. Can you help set up an area that is just hers? For ds we cleared out the bottom of his closet and put glow in the dark stars/planets up (along with some touch lights in the shape of stars and moons). We put pillows and blankets on the floor. This is ds's quiet spot. When he gets out of control he knows he can go here and nobody will bother him. He has control over this one area, and he does SO MUCH BETTER just knowing that area is there. He really doesn't even use it much anymore, but just knowing it's there helps him.

[APToddlerMama]

I used to be a social worker and many times there are really good resources available for kids who have been adopted, even many years later. Try googling "Post adoption resource center" and the area in which they live. They can also frequently direct to respite care in the area even if it is just a few hours here and there. Has your mom read The Out of Sync Child? Any diet changes? These have helped my son who has SPD dramatically. Good luck!