Any Special Needs Scrapping Moms out there?

[Connection Keeping]

Hi there awesome Sweet Shoppe Community,

I'm Kelly and I design under the name Connection Keeping.

I was just hoping to hear if there were any other moms/dads in the same boat, as a special needs parent. I was hoping we could have a thread of encouragement and even talk about ways to memory keep specific things for our kids. I have four kids. One of our kids was diagnosed with autism this past spring/summer and another of our kids has cerebral palsy. We also have kids with diagnoses of adhd and anxiety. I feel like helping my kids navigate these roads as well as navigating helping them regulate is 75% of my life. I was just reaching out to hear if some other mommas or dads were in the same boat and if you would be interested in having a thread to support one another.

I was thinking something like... we could throw out questions about ideas/resources/ or just encouragement.

My question for today is how is summer treating you?

Our kids are with me more than twice as much in the summer as they are in the school year and that is awesome - we've had dates and pool time and working on goals, but also I find that I'm drained so much quicker and I am often overwhelmed by the daily parenting way quicker and more times a week than usual. If this is you, I just wanted to let you know I see you and I'll be thinking of you and love to hear what's been good and what's been hard about the summer for you.

[Brendazzle]

I would love a thread about memory keeping and medical conditions/disabilities.

My kiddo has a rare genetic condition (22q11.2 duplication) and it's A LOT sometimes juggling homeschooling, therapies, how different our life is (for example: with immune issues, we go almost nowhere and when we do, we're the only masked people there), and how he needs me pretty much 24/7. He also has ADHD and some major anxiety.

For scrapping, I try to document major doctors' appointments, the annual advocacy event we attend, milestones in therapy, and a glimpse into homeschool.

As for summer, what summer? Due to an ADHD meds shortage, we lost a month of homeschooling time, just finished 'last year', and go back in 2 weeks when my mom goes back to school. (She's a teacher.) We're trying to cram a bunch of fun in to what little time we have but it's too hot for outdoorsy things here and indoors is really hard to make work with immune and anxiety. He did play 8 holes at Monster Golf, which makes my heart happy.

[LeeAndra]

Everyone in my house is neurospicy.

The kids and I are all high ability, ADHD, and deal with various amounts of anxiety and/or depression. I am a pulmonary embolism survivor which has had some permanent physical effects on me that can veer towards disability at times. My husband, who is not their biological father, is high ability and autistic with major PTSD & depression. One kiddo is extra-spicy as they are queer and have a touch of the 'tism.

Summer has been... interesting. My husband and I took a major international trip in June which meant the kids were with their dad and stepmom for 2 1/2 weeks straight (which has never happened before). There was a family vacation at the end where things really blew up & something traumatic happened that the kids witnessed. They got home July 6 and haven't spent the night with him since then. We have 50/50 custody and live 10 minutes from each other so this has been a major change and disruption. I'm glad to have the kids here with us but it's been hard to navigate WFH and having them here 24/7 while they also navigate this hard thing and how to deal with it emotionally and mentally. We do A LOT of emotional verbal processing so I've struggled to balance what they need to talk about vs. what is just "regurgitating" and not helpful to keep bringing up. It's been especially draining on my husband who is the most introverted introvert in the world and has to expend a lot more energy when they are here with their chatter and video games and general loud chaotic-ness. I signed them up for overnight camps on alternate weeks (before everything happened) so that has been helpful.

The big neuro-spicy bright spot has been for my oldest who struggles socially and spent all of middle school in their bedroom refusing to make plans or talk to their friends outside of school. I just picked them up this past Friday from a DnD campaign session with four of their friends & I wouldn't have even dreamed that was possible 2 years ago when we argued nearly every day about them having to leave the house and talk to people and be friendly.

[HeideC]

I love the term neurospicy!

I do not have kids with special needs. I work with them and their families.. I am a service coordinator for kids 0-3 and my caseload encompasses so many different types
I love this thread! It helps me learn more about the fami,it’s I work with. Keep sharing

[Connection Keeping]

Oh Ladies,
It was so awesome to wake up this morning and read this thread!!! I'm a fan of neurospicy as it talks about the beauty and added spice of having a super awesomely wired brain, not just in relation to being different then neurotypical brains.

Brenda it was so fun to go through your gallery and see all of your beautiful memory keeping. Your son's smile is off of the chart! Our one child has chronic lung disease from being a 24 week preemie and so we will still wear our masks if there are higher numbers or choose to not go. I know it is not the same because we have more leeway, but I remember it being harder for my other kids to continue masking even when their friends were done with it. I hope that there are lots of adventures that are able to be had. Your Monster golf blacklight/glow pages were incredible! Seriously so fun and beautiful to commemorate such a great event! I would like to make a kit for us for memory keeping, but I feel a little nervous about it. Some things that some families use or verbiage used are then hard for other families to see... So I've been making a list of things and figuring out what would be universal, but since we are on this thread we can also make it specific to us. A big thing for us to scrap is our therapies and schedules and systems, it would be nice to have a snapshot of them in our yearly yearbooks so we can see how far we've come, but I have one kiddo who really struggles accepting their diagnosis, so I'm always leery of putting stuff in our book!

LeeAndra thank you so much for sharing, I'm sure we have so many similar experiences. My brother found such a community in DnD and role playing that I think it changed the course of his life so much for the good. Also as a 46 year old adult he is still playing and it brings him so much joy. My son asked not to go to camp and we are trying to give him as many yeses as possible, but I am feeling the struggle of this decision as we hit the middle of the summer!

Hi Heide - I'm so glad you are here. We have benefited from Early Intervention for two of our kiddos and it was amazing. We are still close with the OT that came to our house weekly for years (she was able to do 0-3 and 3-5 for our family) and because of her my oldest is going to college in hopes of being an OT. Hopefully this thread has helpful information.

Do any of you follow Dayna Abraham? She started Lemon Lime Adventures, - https://lemonlimeadventures.com/. It's a great read/community/podcast for parents of kids with sensory issues and just being a special needs mom in general. I'm a fan. If you love any resources please feel to share here.

[Brendazzle]

There's a lot of pages in his album that no one but him, my husband, and sometimes my mom get to read. There are whole hospital stays that almost no one knows about but that I documented for him because I thought it was important. It's such a hard balance between respecting their privacy and telling their stories. There's A LOT of scrapping that never gets shown publicly because it's not really my story to tell. I tend to use the same few medical kits for more themed pages and fun kits for one-off pages (like when we aged out of Early Intervention and I wanted to celebrate the amazing PT we worked with). I desperately want something equine therapy related because Beauty has done more for his trunk support than any PT or OT we've ever had but it's not usually included in 'therapy' kits.

It's nice to hear other people are still masking, even when it's hard to be the only ones. We've always been the people who leave if a place is too crowded so it's not as bad. When it's not surface of the sun hot in Florida, we like to do boardwalks and trails. In 2020 and 2021, we went to as many county parks as we could. Once we were away from the parking lot and on the trails a bit, it's like we were alone in the world. I'm considering a state park pass "for homeschool" so we can explore a bit more. My mom and I had one in summer 2015 and it was such a fun whirlwind adventure.

One of my favorite resources is Tiny Superheroes - https://tinysuperheroes.com/ I love the monthly missions to help teach kids (and their parents) skills for resilience. My son likes to take his cape with him for hospital stays and it's nice to have a visual record of his journey. I ordered his cape as soon as we got home from genetics and get patches as we add tests, diagnoses, milestones, etc. (I ordered him a 3 year old sized cape and desperately need to expand it. I have almost 30 patches waiting to be added.) At the moment, I'm not active on social media but their Facebook group is a great place to seek support.

My husband plays D&D online with our friends once a month, which does wonders for his anxiety and feelings of isolation, plus no masks required! My son plays Dungeon Mayhem right now but we're excitedly awaiting when he's old enough for full D&D.

[Kiana]

I'm at work right now. But I want to chime in here ...not sure if it will be welcomed or not so let me know?

My son has epilepsy and it's been a pretty much "invisible" condition since he was 4yrs old. But has a LOT of challenges for us as a family and cognitively for him with memory issues etc.

It's not a special need, but I believe it should be considered one with all of the things we go through with him sometimes.


I'll come back later after work if no one objects to me sharing more

[aussiegirl]

I do not have any special needs kids myself, but both my husband and I have a special needs family member on each side of our family. (My nephew, his cousin).

But I do want to say, BIG prayers for all of you as you go through the daily struggles of your life! Your kids are all so very lucky to have you loving them, supporting them, and being there for them as you can! I think your group would be an amazing thing for you all to love and encourage each other!

[Brendazzle]

Originally Posted by Kiana

My son has epilepsy and it's been a pretty much "invisible" condition since he was 4yrs old. But has a LOT of challenges for us as a family and cognitively for him with memory issues etc.

It's not a special need, but I believe it should be considered one with all of the things we go through with him sometimes.

My son has epilepsy too. It definitely brings a lot of issues to the mix. If it doesn't fit in this thread, I wouldn't mind learning more from you in another one <3

[rach3975]

I'm in favor of special needs/disability casting a wide net and encompassing as many people as want to be here, Kiana and Brenda (Is that your first name?)!

My son has Smith-Magenis Syndrome, which is a genetic disorder. The short explanation that some of us parents use is that it's like a cross between autism and Downs Syndrome. Ben is autistic with moderate support needs, but he probably won't be able to live independently. He has ADHD, sensory processing issues, dysgraphia (a learning disability related to writing), childhood apraxia of speech and global apraxia (motor planning disorders), and a sleep disorder. He's very verbal but is hard for less familiar listeners to understand, and because of his dysgraphia he really can't communicate in print beyond a sentence or two at a time. (He struggles with both the physical aspects of writing or typing and the idea generation/organization parts of writing.) He is18 now, so things are a lot easier than they used to be. He graduated high school this year and will be starting a job training program through our school system.

In addition to parenting Ben, my connection to the disability world is that I just got my early childhood special ed teaching license. Starting in a few weeks I'll teach a class of autistic preschoolers.

[LauraOD]

Hello! Another special needs mom here. My son Willie was diagnosed with autism when he as 2. He is now 17. He is also nonverbal, ID, and the most recent diagnosis bipolar disorder.

This summer hasn't been great, but it's not the worst by far. He is struggling with bad sleep - waking up in the middle of the night for a few hours or sometimes not going back to sleep at all. And when he's up we're all up. The past 4 nights he has slept through and I feel so good. Like a new woman! Right now Willie is in ESY. His school does a great job with ESY and we have a few more weeks of it which is good.

I love this thread. It's been so interesting to read all of your stories and to remind myself that I'm not the only one in this place.

[shellbyj]

My oldest son is high functioning autistic/ ahhd/ spd. My other two sons are ADHD as well. It's challenging but I love my neurospicy boys =)

[Connection Keeping]

Dear Ladies,
Thank you so much for being open and transparent here. I think so much of my struggle is feeling seen but also keeping my kids needs as their story, so it's great to have an online place to discuss with people who understand and also would like to be seen and heard.
Kiana, I think medical conditions with their appointments, trying to find the latest thing, keeping up with medication as they grow and go through puberty, and making sure that they are safe when they are away from you is all of the invisible load that a special needs mom holds at all times. I truly think your experience will mirror so many of our own. I also think that there is no comparing as sometimes personality and circumstances can be more of a consideration at any time then diagnosis.

I was wondering if we could think of things we wanted to have as a goal for the thread. I truly think being able to type out your struggles and/or achievements and joys is huge. Sometimes writing it out is so helpful. I think keeping this information private is important. This is open to the larger SSD community but not the whole internet and I feel that is great and gives us a space where we can be authentic.

I'd love to create some pretty simple templates that are free for our group that can focus around PT, OT, and goals being reached, but I'd love input. I'd love us to share resources... Brenda, I signed up for Tiny Superheroes, I'm excited to get the newsletter. What else would you like to see?

Kianna, Dawn, Rachel, Laura, and Shellby thank you for sharing. It was great to hear about your families and to feel connected. Laura and I actually live near each other, so hopefully we can meet up one day when summer isn't going on and sleep is a more regular occurrence.

Also some of you ladies are probably forum experts, I'm still learning my way around!!! Is there a way to make a welcome post that is stuck to the top with our plans for the group and the need to keep the information private?

[Brendazzle]

Ooh, I would love to have templates to specifically track progress in therapies. Thank you! And I will totally put horses all over for equine therapy

I'm sure I know a lot of resources but can never remember off the top of my head. I'm pretty good about coming up with things when people ask for something specific though.

And yay for TinySuperheroes! We haven't done this month's yoga mission yet but I need to get on that. This month has been chaos.

[tgmousechick]

My daughter is on the spectrum- she was diagnosed at 10 and will be turning 22 in October. She's currently working with our county board of disabilities on employment skills- she has a job interview tomorrow!

We've had our ups and downs- she graduated HS from an autism immersion school, and did their transitional programming for a couple of years. She left the program after having behavioral objections to doing an industrial tech rotation.

It's such a struggle to balance letting her be herself with trying to convince her to flex just enough to manage people who don't get her yet. (and not be told I'm a helicopter parent- it's been one of those weeks )

Looking forward to sharing ups and downs with all of you!!!

[LauraOD]

Kelly, yes we will meet up one of these days ��

[Connection Keeping]

Hi Kim,
Welcome to our little corner of SSD! I'm so sorry it's been a week. I think some of the struggle is knowing how much to help smooth away the rough edges of life for them to have great interactions and how much to let it be there and help them with the disappointment and/or have to deal with the repercussions. Our child that has been diagnosed with Autism is 10 now and was just diagnosed, he is the same kid so our daily life isn't much different, but the summer and all the change it brings is always a struggle.

I am reading the third book in a series of books, and in this book the main male character has Autism, even though it's before diagnoses were a thing. I've been loving it seeing my child in this character and thinking about him as an adult. If you like Historical Romances (it's completely clean) it's called Love and Lavender by Josi Kilpack and it's been so great for me to read it and just give my mind a place to think about all of these future things. It's helpful to read the first two books in the series, but this character only shows up in the third book. Just throwing it out there.

I hope it's a weekend full of small joys for you all and some time for being filled up.

[TraceyM]

I bow to you all. I have a girl with anxiety and strongly introverted which also makes her quite shy. She has pushed herself past this to accomplish a lot. But still would never order a pizza since it would involve talking with the delivery person. She does not like unplanned conversations. I think the fact that we live in a very digital world has helped her greatly.

[ta_merkins]

Hello!

Each of my boys has their own special needs: My youngest (who is 14 already) was born with Spina Bifida, hydrocephalus...and a host of other diagnoses. In 2020, we learned he also has ADHD (which honestly solved so many of his "quirks"). He walks mostly, but needs a wheelchair for long distances. He has special bowel and bladder needs. His emotional cognition is approx 1-2 years behind his age.

My eldest (who is 16 yikes!) has very high functioning autism and also ADHD with major depressive disorder thrown in too. His IQ is high and the things he likes to learn about are definitely not typical for his age.

This summer has been harder than most because I haven't been able to plan any day trips or anything due to my own health. I have Cushing's Disease and had neurosurgery 7/19. So, the kids have been mostly playing games or hanging out with friends....it's been kind of a free for all around here. They haven't complained, but I know they are looking forward to our family camping trip coming up.

It's really great to "meet" all of you and hear your stories!

[LauraOD]

Something I wanted to share that I have found very useful is the Jibun Techo planner. Since my son is autistic/nonverbal/ID I use this to track things like bad sleep, medications, behaviors, poop, as well as stuff going on with the IEP and things at school. Here is a pic of how it looks, I like this because the vertical timeline goes the full 24 hours so I can fill in if he wakes up in the middle of the night and how long he's up for. Over the years talking to doctors about things when they get specific: When did it start? How often? How long? etc this is the only way for me not to get fuzzy with the details.

[HeideC]

This is so awesome!
I love working with my kids and families. Each is so unique.
I also wanted to share that I have a seizure disorder as well .. I’m not considered special needs but I feel like seizures do present their own challenges and at one time they were considered an established condition for our program.
Keep advocating for your littles while the rest of the world plays catch up to their needs

[Scrap-therapy]

Hey ladies,
First it's great to read all the story you share here's.
I was very touched by some of yours.
I am not sure if I fit this thread but my twins are neuro atypic (but discover the word neurospicy here's and I love it so much!!!).
They are 36 weeks preemies, it's not big but for some reasons they stayed in neonatology for 1 month and had lots of problem to eat and take weight.
My daughter had a IUGR at birth and my son had a severe axial hypotonia.
My son had tons of exams but no cause was found.
With growing up, he was suspected for autism but never diagnosed with autism. He still had lots of exams but we never find something really probative.
In the end, we finally discover he had multi Dys trouble: Dyspraxia, Dyscalculia, Dyslexia and Dysgraphia. It explains a lot of things but not all.
Her twin sister has Dyslexia, Dysorthographia, Dyscalculia and probably dyspraxia but not as much as her brother.
I can't say it's a big deal everyday for us but it is as soon as we talk about school because it's very difficult for them.
I also feel embarrased by the others. I often have question why they don't ride bike, need scratch shoes, help for things that seems easy, etc...
I don't want to "label" them too much so I don't answer too much. It's great to write it here all because I don't do it in real life except with specialist or school.
I'm super proud of every little milestone they do but can't explain to other people!lol!
Well nothing too bad for us but it's good to talk about it.

[Scrap-therapy]

Originally Posted by TraceyM

I bow to you all. I have a girl with anxiety and strongly introverted which also makes her quite shy. She has pushed herself past this to accomplish a lot. But still would never order a pizza since it would involve talking with the delivery person. She does not like unplanned conversations. I think the fact that we live in a very digital world has helped her greatly.

Tracey, what you said remind me so strongly my sister, it's like you described her. She is 38 yo and can't order a pizza herself too and when she has to call the bank or something like this, she is so bad. Sometimes I call for her. She works alone so she is super happy but she realized that she missed a little social part. I admit I'm not a super extroverted myself but I can go out, see people and order pizza, etc. My kids tend to be super shy and introverted but they are two, it's what is wrotten in all their school bulletin.
I have no clue how to help your daughter because pushing her to do something she is feeling bad is not a good idea to my opinion.
Digital world wasn't my sister world when she was a kid but she is in love with it now.
Think of you!

[laurabobaura]

just popping in to say that i also have neuro-spicy peeps in my family. xo

[littlekiwi]

While I have no special needs kids (or kids in general), I do have wide ranging links to the disability/special needs community. I myself, was born with a facial disfigurement which while doctors don't know the actual cause may have caused my vision loss (I have almost no vision in my left eye) and hearing loss (again almost no hearing in my left ear). I also have mobility challenges that while I am able to move around independently, it's not as easy as I'd like or it should be. I also have a professional connection to disability - my undergraduate degree is in disability studies and that's the field I want to work in (if employers will ever take a chance on me and hire me). I also live with my late diagnosed ADHD & Autism Spectrum Disorder mum who has had that diagnosis for about 8-10 years now.

[Connection Keeping]

Hi Teri,
How are you doing? Is there more breathing room and bandwidth since school has started. I've been thinking of you and I hope that it's a smooth start to the school year.

Kelly

[Connection Keeping]

Jennifer - your wealth of knowledge will be such a blessing here. Thank you so much for sharing.
Tracey - I feel so often with my kids that there are special needs and then there are personality preferences and quirks that can often affect them more then their actual diagnosis.

I just wanted to check in with everyone. Our August was really had and we now have wrap around services for our one child which will be all consuming, 2 hours 3 times a week. But as the kids start school there is also more breathing room during the day, so that feels good. Laura - I love that tracker and I still want to make some templates for us, I'm just a little behind and catching up since the summer. Happy Fall Y'all to those in the Northern Hemisphere.

[Brendazzle]

Originally Posted by Connection Keeping

I just wanted to check in with everyone. Our August was really had and we now have wrap around services for our one child which will be all consuming, 2 hours 3 times a week. But as the kids start school there is also more breathing room during the day, so that feels good.

August was a rough one here. Insurance only covers a tiny amount of therapies so we got a panicked call from speech with "they're not approving any more sessions." Insurance was kind enough to tell us that we can have more therapies *in January*. So we lost speech and OT this month.

Homeschool started up again and we're taking it easy this year to focus on a new approach to reading, which is working well. We're doing month-long unit studies (as opposed to our usual full-year curricula), the next year of the math we did last year, and an online reading program that did more in a week than a whole year of reading curriculum did last year.

We're also have a lot of fun trying to work with a DME who doesn't have kid-sized stuff in stock. It's a lot but the only way out is through. I'm pretty sure I'm muttering "just keep swimming" under my breath a lot.

[Kiana]

Sending lots of neurospicy hugs out.
August must have been dubbed "rough" month

DS had a set of seizures while walking to get his meds one morning which resulted in a trip to the ER. Some medication adjustments, which is always hard and more adjustments to his RNS device implanted in his cranium.

So not a fun month.....this way either.

[LauraOD]

Originally Posted by Brendazzle

August was a rough one here.

Oh Brenda, I can't imagine! He is so lucky to have you. You are on top of this!

[LauraOD]

Kelly, glad you started wraparound. We've had it for 15 years. I think it's great.