Other moms of SN kids? Need some solidarity.

[Mrs Tiggywinkle]

Are birthdays bittersweet for anyone else?
Today is my oldest son’s 11th birthday. He has autism, SPD, and a comorbid mental health diagnosis.  He is high functioning academically/intellectually, but behaviorally and emotionally he’s medium to low most days.  When he was born, I imagined MOPS meetings and meeting other moms and how much fun he’d have in day care and then school.  It turns out that even as an infant, he couldn’t tolerate any kind of group childcare. So I never went to moms meetings, never really met anyone because we couldn’t do play dates or other normal things. His sensory needs and behaviors were very difficult for many years. Childcare outside of family was impossible and instead of staying at the old company that I loved but was inflexible I took a job where my husband worked when my son was 2.  It’s flexible and pays well, but I’ve long fallen off the promotion/management track and that really does bother me(even if it shouldn’t). 
All these years later and I miss the career track I was on at my old company. I never did make mom friends because he couldn’t stay in child care or with babysitters; church was a nightmare so we stopped going and I lost community there.
He’s awesome, doing really well in school and managing behaviors on medication, and I love him to pieces, but today I am looking at pictures on my FB memories and remembering who I used to be.

[chiguirre]

Yes. But I think it does get easier as they get older. There's less parent/child social interaction and you just get used to your normal. 

[dsmith]

I could have written your post, except for the work/career area. I've worked with dh since he was born, which made some things better, other things worse... Ds is 22 now, and doing much better behaviorally, so gatherings and outings are usually enjoyable. But I don't know that independence will ever be achieved, and birthdays for cousins are very emotional to me, more so than his own birthday. I see them moving on in life, moving on from him... I am very thankful that his younger years are behind us though. They were tough. And he may not be where I wished he would be at this age when I imagined his life when he was born, but he is very loving and thoughtful (best hugger ever!!🥰), is able to contribute to our business, and has an excellent moral compass among many other positives. 

[Junie]

(((Mrs Tiggywinkle)))

Happy birthday to your oldest!!  

Not quite the same thing, but I have experienced similar feelings due to my own health issues (rheumatoid arthritis and chronic migraines).  It sometimes hurts to see other moms doing things with their children (field trips, vacations) that I can't really do with mine.  I know we're not supposed to compare our lives to others, that we each have blessings and struggles unseen to others, but it's hard.

Sending hugs!

 

[wendyroo]

I'm feeling a lot of grief and mourning about all my SN kiddos, but one in particular right now.

Elliot is starting in a contained emotional impairment classroom at our local public school in the fall. On one hand I am hopeful that it will be an okay fit for him, will allow me to meet the other kids' needs better, and will reduce the daily stress and trauma we are all under. But, on the other hand, I really, really wish it wasn't necessary to send him.

I wish he was mentally healthy and safe enough to keep at home. I wish he could participate in the nature and escape room and rock climbing classes with the other kids. I wish I could give him time for all the exercise, free play, healthy food, therapy, read alouds, etc that I have always prioritized. I mourn the fact that he will probably lose all his Spanish without daily work...that he will be moving backwards in math by about 3 years. I regret the hours he will lose to standardized testing and the daily inefficiencies inherent in a classroom...especially one filled with emotionally unstable students.

I think school is the right choice for Elliot (I hope), but to the depths of my soul I wish there was another way. I grieve everything that mental illness has taken away from each of the kids and our whole family. So many things that "normal" families take for granted simply aren't possible with the kids I have in front of me. Everything, just everything, is so gosh darn hard every minute of every day.

[LostSurprise]

Congratulations on another year! 

Yes, I feel this deeply. 

[Ali in OR]

Yes, I've been there. The last milestone that really surprised me for bringing up tough emotions was church confirmation for the group a year older than my disabled dd who would never be able to take that step. She cannot profess faith or anything else, cannot understand what any of it is about. It just hit me hard. And I can watch her now at 24, home throughout the pandemic because she can't mask, and she is now able to go to church again (fully vaccinated) and has such joy hearing the music and being in that familiar place, just rocking happily in her wheelchair, and I know that she and God have their own special relationship that is not like everyone else's. But yeah, it hurt when she was 12 and I could foresee all of the milestones that would be missed--never really graduate from high school, never go off to college, never marry.

Throughout her childhood I assumed I would always be her caregiver. And I did miss my career--I would have dreams about teaching. Literally wake up in the morning after teaching in my old school in California all night. I have since learned that the world of available help changes dramatically when disabled people turn 18--it's not all on my shoulders anymore. The state is responsible to provide for the care of disabled adults--she now has access to a huge number of hours of paid care that allow me to be able to work. I'm just an Educational Assistant, but I'm hoping to be able to get a teaching job again. And if I don't, I love what I do (I just don't get paid much).

Happy Birthday to your son. Hugs to you. Enjoy the incredible things this person brings to your life on this day. And have some cake!

Edited May 26, 2021 by Ali in OR

[kbutton]

Hugs. We had similar issues when my kids were really little, but they have been optimum responders to therapies. We are, however, outliers in other ways that are beyond my control, and when those issues are added in, my life narrows dramatically. There are lots of things that trigger those feelings of missing the old me. I gladly gave up a career to have a family, but I thought I'd be able to keep a foot in the door. Now I feel too beat up by life to be a good employee in a setting where I could make decent money. I do have some thoughts about PT work that are not skilled, but I don't know what will come of that.

[Not_a_Number]

1 hour ago, wendyroo said:

I'm feeling a lot of grief and mourning about all my SN kiddos, but one in particular right now.

Elliot is starting in a contained emotional impairment classroom at our local public school in the fall. On one hand I am hopeful that it will be an okay fit for him, will allow me to meet the other kids' needs better, and will reduce the daily stress and trauma we are all under. But, on the other hand, I really, really wish it wasn't necessary to send him.

I wish he was mentally healthy and safe enough to keep at home. I wish he could participate in the nature and escape room and rock climbing classes with the other kids. I wish I could give him time for all the exercise, free play, healthy food, therapy, read alouds, etc that I have always prioritized. I mourn the fact that he will probably lose all his Spanish without daily work...that he will be moving backwards in math by about 3 years. I regret the hours he will lose to standardized testing and the daily inefficiencies inherent in a classroom...especially one filled with emotionally unstable students.

I think school is the right choice for Elliot (I hope), but to the depths of my soul I wish there was another way. I grieve everything that mental illness has taken away from each of the kids and our whole family. So many things that "normal" families take for granted simply aren't possible with the kids I have in front of me. Everything, just everything, is so gosh darn hard every minute of every day.

It's such a hard situation, Wendy. You have all my sympathy. 

I'm glad he's going to be able to go to school to give you a bit of a break, though. I remember you were trying to figure out whether that made sense... 

[sassenach]

Yes, some years are mourning years. I never know how it’ll hit me. Last year was very hard. It could have been the pandemic but I think it was just that he was going into a new decade (20) and it hit me how unlikely it was that we’d get another. Ok, maybe my COVID fears accentuated that part. 
 

This year was 21 and I actually felt happy. (((Hugs))) I don’t think we ever get to not grieve our kiddos. It’s a really unique and hard parenting experience. 

[Hilltopmom]

Yes, I understand completely.

[Ottakee]

I get it.  I have 3 young adults with special needs and a son in law with special needs.  

Ages 11/12 were hard as that was a transition from elementary ages to middle highschool ages and it is so much more obvious as they get older how big the gap is.

I am glad for added services at age 18 but it is SO much paperwork and appointments and reporting and appealing and applying, etc that I get tired.   Then again, I am in Michigan and have 4 that I am responsible for and am payee for.

[itsheresomewhere]

I totally get this.  Right now, I am dealing with one adult kid who is too advanced for services as there is nothing for kids like him.  I can pay for help myself ( 300 an hour  for a job coach is not realistic for most people who are seeking out services) or figure it out myself.  So we are doing the latter.  It will be hard but someone has to do it.  How many of kids like him who are considered too advanced for services but need it to fully function in the world fall through the cracks crosses my mind often lately. 
 

My youngest is now on the spectrum ( it has been debated for a few years so I am not surprised). When the activities that were helping her overcome some issues have been closed for over a year  and there is nothing to replace them. Trying to keep up with a HFA 2E kid is mentally and emotionally exhausting. 
 

 

Edited May 26, 2021 by itsheresomewhere

[AnneGG]

You’re not alone. I feel the whole “church was a nightmare so we quit” thing. 

[Lecka]

I am at a calm, peaceful time right now, but I never know when it will hit me.

I have had some hard times recently.  I have an older son and twin daughter to my son with special needs, so it is often, often in my face that there are differences and it can make me so sad.

Right now I am thick in having a teen boy and tween girl, and my special needs son is the one who is pleasant to be around!  It is an unexpected pleasure, and so meaningful after his younger years.

I don’t know if he will hit this stage a little later, or just skip it entirely, but — for now, we are enjoying it.  It makes up for a lot!  
 

I am also often succeeding in looking at what he can do instead of what he can’t do.  It’s not like I can just will myself to do this, but I can make an effort, and it does help a lot of the time.  It is not like the power of positive thinking makes there be no sadness, but sometimes it helps for sure.

I am sorry it is a sad birthday 😞. I think it is just one of those things — some days are sad days, even if a child is truly appreciated and loved.  

[ktgrok]

Yup. For me the hardest was when I had another child who was NO special needs, and I'd see her hit milestones and have social interactions and realize all that my first son missed out on. When it was just him, it was "normal" to me. Only when I had another much easier child did it hit me full force, I think. 

[ktgrok]

1 hour ago, AnneGG said:

You’re not alone. I feel the whole “church was a nightmare so we quit” thing. 

I tried, hard, to make church work. Even taught Sunday School because my son couldn't be left in the care of others, so I taught his class. Then one day he punched a random stranger walking down the aisle to communion as we were walking back. Just sucker punched the guy right in the gut as he walked by. We walked out and never went back. Later I went to a different parish on my own (never have been back to that one!) but I didn't take him anymore, for my own sanity and the safety of others. 

I do sometimes wonder what I could have done differently...but I did what I could at the time. 

[KungFuPanda]

My Ds has actually enjoyed a bit of a cocoon of homeschooling social opportunities. We felt supported, so we never developed friendships within the muscular dystrophy community.  I was afraid it would be too heartbreaking as everyone declined with this diagnosis.  However, now ds is loosing people to college and life and it's really sad.  His social circle is shrinking to family and younger teens who will eventually fly the nest too. When the pandemic is over we'll have to sort something out, but I'm not sure what that is yet.  I think he needs some sort of young adult daycare situation but I don't know if that exists.  He has serious physical challenges, social quirks, and he's not super academic, so finding a decent fit without starting a group myself is daunting. He really just needs one good, quirky, video game loving young adult friend who is also stuck always living with his parents.

[twovetteslater]

.

Edited July 22, 2022 by twovetteslater

[itsheresomewhere]

2 hours ago, KungFuPanda said:

My Ds has actually enjoyed a bit of a cocoon of homeschooling social opportunities. We felt supported, so we never developed friendships within the muscular dystrophy community.  I was afraid it would be too heartbreaking as everyone declined with this diagnosis.  However, now ds is loosing people to college and life and it's really sad.  His social circle is shrinking to family and younger teens who will eventually fly the nest too. When the pandemic is over we'll have to sort something out, but I'm not sure what that is yet.  I think he needs some sort of young adult daycare situation but I don't know if that exists.  He has serious physical challenges, social quirks, and he's not super academic, so finding a decent fit without starting a group myself is daunting. He really just needs one good, quirky, video game loving young adult friend who is also stuck always living with his parents.

If only you were closer...  

We are going through the same thing.  DS’s friends are growing up and moving on to the next stage in life.  I am honestly thinking about starting a board game/gaming club for teens and young adults near me.  This might be the way for DS to find a friend like him. 

[KungFuPanda]

8 minutes ago, itsheresomewhere said:

If only you were closer...  

We are going through the same thing.  DS’s friends are growing up and moving on to the next stage in life.  I am honestly thinking about starting a board game/gaming club for teens and young adults near me.  This might be the way for DS to find a friend like him. 

I wish! Why can’t the entire hive live in central MD?  I might have to seek out a D&D group for DS. He had a high school group with the co-op kids, but the pandemic hit, he graduated, and nobody saw anyone ever again. 
 

We are about to gain a son in law with a passion for board games. We may need to start a board game club and offer to host. 

[Kakids]

Yes, we know the feeling. I don’t enjoy the feelings of loss and comparisons, but they are our reality more often than I prefer. We’re still looking and hoping for our tribe someday, where we can just be real and accepted, where we can grow without being held back.

Happy birthday to the birthday boy.

[Tap]

I am ok with birthdays, but what gets to me the most is yearly measures with the school and therapists. IEP days are especially hard on me. So are annual appointments with therapists, documenting progress we have made and future goals. Tomorrow is my daughter's IEP. I was reviewing drafts sent home by her teacher. Part of what is distressing, is how the district skews the numbers. She is at the end of 8th grade by age but her true levels vary between 3-5th. Those academics that at the 5th grade level are at a 50-60%.....so why do they say she is at a 5th grade level? She is failing at a 5th grade level, so isn't she really at a 4th or 3rd grade level? She gets so frustrated at school, and I think this is part of the problem.  They want her to progress, so they fudge it. Instead of having her be a successful 3rd/4th grade....they push her into 5th level work, in which she flounders, struggles, and subsequently fails. 

There is no a single thing that is easy for her. Academics, fine motor skills, social, family, church, her size, her friends....nothing. She struggles so much in every area, so assessments are a just an accounting of her miniscule steps forward which are outpaced by her age every day. She probably gains a 1/4 of a school year each year and about the same in social and fine motor skills.  Which means she gets 3/4 of a year further behind. 😞 She is mostly frozen in math at simple addition and subtraction. Her writing looks like a preschooler. She can read a paragraph or two, but loses the story after that. She still has normal kid dreams of being a vet or other such jobs. I have a hard time when I think about the fact that she will struggle to even be a grocery store clerk and she doesn't get to achieve dreams like other people do. She can have dreams...but doesn't get to live them. 

I have sacrificed so much for her to stay in our home (she is biologically my niece). I am in a job that will never be more than it is today. I have done the same job for 20+ years, and I will retire doing the exact same thing. I am lucky to have a job but is a job that any 18yo with a pharmacy technician license can do. I count pills and put stickers on bottles. I have counted and labeled millions of little compressed chemical pills.   I have a job. Not a career like I once imagined.

Edited May 27, 2021 by Tap

[PeterPan]

This is sort of timely for me. I'm doing so much better with my HBOT that I'm now having the "what will life look like in 8 years" chat with myself. And I don't know if the answer is grad school or petting cats at the local shelter or what, but I can see now that these are real sacrifices or a very different direction I'm taking, try to help ds. I worry about being distracted from doing what I need to do with him, and I worry about being bored once I'm done. Can't win, lol.

[Ottakee]

For those looking for community, this is one reason I did go with public school for my kids starting in 7th grade.  It gave them a peer group of sorts in Special Education.

Special Olympics is also a great program even if they aren't really athletic.  Things like bowling are a lot of fun for any skill level.

[Insertcreativenamehere]

I have a 9 year old with Down syndrome who is very sweet and a true delight to our family. However, he functions closer to 2 years old, is non-verbal, not potty trained and has complex medical issues. While we adore him, his extra needs have been stressful to our family. At our homeschool co-op this year, it was a little hard at times because I was teaching his age group but due to his developmental age, I put him in the preschool class. I've homeschooled my neurotypical kids for years but he was always in public school due to his profound disability. We kept him home this year and it has been challenging. His progress academically has been minimal. At least with my NT kids, I know that if we're consistent and diligent, they will learn. That hasn't happened with him. Thankfully, we were offered an ideal opportunity for him next year, in a center-based classroom with just 6 kids, all around the same level developmentally, at an excellent school. The teacher comes highly rated by other parents and we already know one of the kids in the class, possibly two. 

[TravelingChris]

21 hours ago, Junie said:

(((Mrs Tiggywinkle)))

Happy birthday to your oldest!!  

Not quite the same thing, but I have experienced similar feelings due to my own health issues (rheumatoid arthritis and chronic migraines).  It sometimes hurts to see other moms doing things with their children (field trips, vacations) that I can't really do with mine.  I know we're not supposed to compare our lives to others, that we each have blessings and struggles unseen to others, but it's hard.

Sending hugs!

 

ANd that is was the same for me.  And still continues.  It really started bothering me when I was about 45 about all the much older people who are able to do things I can't do.  It was a 90 year old who tried to get me involved in a tennis group.  I haven't been allowed to play tennis now for decades. Ihave to stick to much safer sports like swimming.  And I can hike but only with my family since I need assistance at times, a slower pace, stopping at points, etc.  And I keep seeing photos of still much older people hiking normally or doing other activities I can't/

[TravelingChris]

Hugs to you, Ms. Tigglywinke.  I really hope both of you find a good community.

[My4arrows]

2 hours ago, Ottakee said:

For those looking for community, this is one reason I did go with public school for my kids starting in 7th grade.  It gave them a peer group of sorts in Special Education.

Special Olympics is also a great program even if they aren't really athletic.  Things like bowling are a lot of fun for any skill level.

This is what we ended up doing too and it has helped my DS drastically.  Unfortunately, he couldn't find his place in the hs or church community, but we have been blessed with a wonderful community for him in the ps.

[Mrs Tiggywinkle]

22 hours ago, wendyroo said:

I'm feeling a lot of grief and mourning about all my SN kiddos, but one in particular right now.

Elliot is starting in a contained emotional impairment classroom at our local public school in the fall. On one hand I am hopeful that it will be an okay fit for him, will allow me to meet the other kids' needs better, and will reduce the daily stress and trauma we are all under. But, on the other hand, I really, really wish it wasn't necessary to send him.

I wish he was mentally healthy and safe enough to keep at home. I wish he could participate in the nature and escape room and rock climbing classes with the other kids. I wish I could give him time for all the exercise, free play, healthy food, therapy, read alouds, etc that I have always prioritized. I mourn the fact that he will probably lose all his Spanish without daily work...that he will be moving backwards in math by about 3 years. I regret the hours he will lose to standardized testing and the daily inefficiencies inherent in a classroom...especially one filled with emotionally unstable students.

I think school is the right choice for Elliot (I hope), but to the depths of my soul I wish there was another way. I grieve everything that mental illness has taken away from each of the kids and our whole family. So many things that "normal" families take for granted simply aren't possible with the kids I have in front of me. Everything, just everything, is so gosh darn hard every minute of every day.

My son is thriving in that same classroom. 6:1:1 emotional disturbance.  His mental health diagnosis is technically conduct disorder, but it’s really a manifestation of autism and serious anxiety.  I feel guilty because he’d do so much better academically at home, but I can’t handle it.  I just can’t.  He needs so much structure and I need a break from his anxieties and inflexibility.

But he is really, really thriving, even though it makes me sad because the older he gets the farther we get away from others.

My son has found his community.  He’s got a couple quirky cousin and my lifelong best friend has a quirky gamer son.  He’s got friends in school.  He and I are close.  I think I am really struggling without an IRL community, but my own autistic tendencies get in the way there too.  I was sad yesterday and mourning my own dreams.  I don’t think that makes me selfish, just human.

[Mrs Tiggywinkle]

I cried last night.

his birthday was good. But then he refused to eat the cake my mom, who is dealing with cancer and is exhausted, made for him from scratch, all because last year he had a slice of cake and it made his stomach hurt a little.  That hurt my mom’s feelings a bit but she also gets it.  It’s anxiety.

Then he was playing a board game he got for his birthday and right at 8 pm, his normal bedtime, ended everything because he couldn’t be two minutes late for bed.

This just...was never what I’d envisioned for my life.

 

[dsmith]

17 hours ago, itsheresomewhere said:

I totally get this.  Right now, I am dealing with one adult kid who is too advanced for services as there is nothing for kids like him.  I can pay for help myself ( 300 an hour  for a job coach is not realistic for most people who are seeking out services) or figure it out myself.  So we are doing the latter.  It will be hard but someone has to do it.  How many of kids like him who are considered too advanced for services but need it to fully function in the world fall through the cracks crosses my mind often lately. 
 

My youngest is now on the spectrum ( it has been debated for a few years so I am not surprised). When the activities that were helping her overcome some issues have been closed for over a year  and there is nothing to replace them. Trying to keep up with a HFA 2E kid is mentally and emotionally exhausting. 
 

 

My son is also too advanced for services. And there's a real lack of options in our area, even if we could afford to pay ourselves. We used to be able to do that when he was younger, but we can't say he has benefited from the thousands of dollars we put into therapies and social skills groups, etc.