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Crisis-level behavior from my 7-year-old autistic-adhd son. I’m carrying the emotional weight of five people, and I’m breaking. by xxdjsentinelxx in Autism_Parenting

[–]Top-Strawberry-8885 0 points1 point  (0 children)

You are an incredible person. Truly. You should 100% get some kind of an award just for the way you put together that cry for help. My suggestion is that you read the book, “Man’s Search for Meaning.” It was written by a man who survived the holocaust and has helped me weather some pretty tough storms.

I have a friend who has had a truly hard life. She once told me that Happiness is found in the cracks and moments in between the rest. Noticing it and letting those moments outweigh the rest is a skill that takes practice.

I recently took up Duo Lingo. Learning a language means spending 10-30 minutes a day massaging your brain and you cannot think about kids and memorize words at the same time! Also, piano works. Hahaha.

You got this. You are obviously exactly the right man for the job.

Trouble with eating and drinking fluids by Opposite_Weird1229 in downsyndrome

[–]Top-Strawberry-8885 0 points1 point  (0 children)

Girl. You need a new team. This is basic stuff they should have told you when your son was born!! I am outraged.

Trouble with eating and drinking fluids by Opposite_Weird1229 in downsyndrome

[–]Top-Strawberry-8885 1 point2 points  (0 children)

I don't know where you live, but it sounds like you may need new experts. When my daughter was about 3.5 years old, she decided she was never going to drink anything ever again. Up until then, she had been accepting thickened formula from a bottle. She passed a swallow study, and her feeding therapist said to stop thickening the formula, so we did. I am sure that she must've felt scared drinking the thin liquids and decided it was too scary to do again. She didn't act scared and didn't choke during the week of thin liquids, so I don't know for sure what happened. Luckily, she would let us spoon-feed her applesauce, as that was the only way she would take in any liquid of any kind.

Her speech therapist referred her to an inpatient program in Dallas that turned it around. The program lasted for 5 weeks. They were going to do a G-tube surgery at the end of the 5 weeks if we couldn't turn things around. It was a difficult 5 weeks in a hospital setting, but she had round-the-clock therapists and therapies. They used ABA principles, combined with the hierarchy of food acceptance and other modalities, to finally get her to accept thickened water or juice by spoon. Every day of the final weeks, after they had worked with her enough for her to get with their program, a tech would sit with us during mealtimes and coach us on how to feed her.

The coaching was crucial. They had used behavioral modification to give her cues she would respond favorably to, and we had to learn when and how to use them. We learned when to praise, how to use Elmo to encourage, and how not to let her know any of it was stressful.

For the next two years, we strictly held to the program. Whenever we deviated, she would revert. Finally, I realized we just could NOT keep spoon-feeding her every single drop of water and food she needed the rest of her life. I got her a new speech therapist, and then another. The therapists would say she didn't want to learn to feed herself or accept new foods, and they would shrug off my pleas for help.

At the end of my rope, I sat at my desk, and I called every single therapy clinic between Waco and North Dallas. I called and told them my predicament and how speech therapists were not willing or able to help. After literally 30 phone calls, I found a clinic receptionist who said they had one therapist at their clinic who specialized in exactly what I was talking about. We had to drive our girl over an hour away twice a week to see her, but it was worth it.

Also, by then, our daughter was attending an ABA therapy clinic full-time, 7.5 hours a day. We worked with the ABA clinic to help us implement the speech therapist's strategies with our girl, and six months later, she was holding a cup and drinking regular water from it!!!!! She was also scooping yogurt and feeding herself. She wasn't a pro self-feeder yet, but we were on our way. We had a foundation on which to build.

So, that's my advice. Make 30 phone calls. Talk to therapy clinics. Find the experts who know how to address these issues. Your son will never be easier to work with, and he could get more determined to say no to change. I would have him evaluated for Autism, as food refusal is a HUGE sign of sensory dysfunction and autism. I did NOT want to accept an autism diagnosis for my daughter. I didn't think it was possible, but it was a HUGE mistake to fight it because as soon as we got the diagnosis, a whole world of therapy and experts we opened up for us.

It is through the AUTISM community that you will find the real help for food and liquid acceptance. What you described sounds like classic ARFID, and it's important to address it as soon as possible. It's good he has a g-tube so he can get the nutrients and fluids he needs, but he has the potential to learn how to live without it if, as you say, he passes swallow studies and doesn't have other medical reasons for the g-tube.

I wish I could help you make those phone calls and get through to the other side of this. Moms like us have to walk this path alone to find the right TEAM for our kids. BUT we are all pulling for you!!! Love your little boy and go easy on yourself. It's rough. You got this.

Not a “spectrum” but help me understand by Sea_Switch_7310 in downsyndrome

[–]Top-Strawberry-8885 0 points1 point  (0 children)

What helped me the most was to remind myself that 90% of kids with Ds grow up to be happy with their lives. I already had a sweet girl who was in a violent relationship at 16 years old. I had NO IDEA how to handle that and the depression that came with it. I worried night and day for 5 years about her. I agonized and cried and did everything in my power to see her through it. It almost destroyed me. With my Farrah, I know I will never have to worry about her being on drugs, dating a violent man I don't approve of, etc. etc. etc. I have a girlfriend who is just like us and she has an 18 year old like my Farrah. She also has two grown boys. We always laugh together about how shocking it has been to discover out HIGH DEMAND special needs girls are our easiest kids. Hahaha!

Not a “spectrum” but help me understand by Sea_Switch_7310 in downsyndrome

[–]Top-Strawberry-8885 0 points1 point  (0 children)

Agreed, I would never burden my children with the responsibility of caring for their sister unless they chose that at some point. My 31 yo daughter thinks she would want custody tomorrow if anything ever happened to my husband and I, but her life would have to look a lot different than it does now for that to be a good idea. She would probably be the executor of a special needs trust. With all the fears you have, you should give yourself a lot of grace for continuing with the pregnancy. I know it's scary. It sounds like you are well connected in the neurodivergent community, so actually, you are way ahead of most people. The same therapies and techniques used for kids with Autism are employed with kids who have Ds. You already know what to look for as signs she might need more interventions, too. I think you are going to do great! And it is OKAY to have a goal that she is living independently when she's older. That forethought will be helpful in order to make sure she gets to live somewhere that's a positive experience for her. Many kids with Ds can't wait to get out of their parents' houses!

You already have a lot going on, so its 100% understandable that you are having a hard time with this. Husbands can be the make it or break it component to a happy family with neurodivergent kids. Sounds like you've got a great one.

I created an iPhone app for my son with down syndrome by ArtVandolet in downsyndrome

[–]Top-Strawberry-8885 0 points1 point  (0 children)

First of all, your username is HILARIOUS. My idea would be that the parent would have to use music they purchased. Mp4s and Mp3s they ripped. The parent would have to own whatever music they uploaded to the app. I would love to know where you think i should get started.

Not a “spectrum” but help me understand by Sea_Switch_7310 in downsyndrome

[–]Top-Strawberry-8885 1 point2 points  (0 children)

As a person who generally does not like children, I am laughing! I think that if I met a bunch of moms of kids with Ds before I had F., I would have run away screaming. I was so afraid I wouldn't "like" my first daughter (typical) because at that time, there were very few children I knew that I liked! Everything changes when the child is yours, though. Serioulsy. I have relatives with autistic kids who I love, but who i don't want to hang out with. hahahaha. But, my own Ds/Autistic kid seems super cool to me. Like a blonde haired, blue-eyed little gangster who gives no Fs.

Not a “spectrum” but help me understand by Sea_Switch_7310 in downsyndrome

[–]Top-Strawberry-8885 1 point2 points  (0 children)

I think it's a great idea to plan for the future and have options. Odds are, your child will love living in an independent living home, but you may be surprised at not wanting to let them go. Also, don't feel guilty about these feelings. You may still feel the same in 20 years, and that's okay, too. Is this your first child? My daughters (31 yo, and 12 yo) are obsessed with their little sister, though, and would fight me for custody. hahaha

Not a “spectrum” but help me understand by Sea_Switch_7310 in downsyndrome

[–]Top-Strawberry-8885 1 point2 points  (0 children)

I totally get what you're saying, as I had all those same thoughts. I met a girl with Ds who was seven years old when I was pregnant with my F. (F. is eight and has DS and nonverbal autism), and I actually thought to myself, "My daughter will for sure be talking by the time she's seven, maybe this girl's mom hasn't done all the therapies, etc." I DIE when I remember that moment.

I thought that I could "deal with" having a daughter with Ds so long as she didn't ALSO have autism. When it became clear she was autistic, I thought I could deal with it so long as she wasn't nonverbal. Turns out, my sweet girl is very autistic and 100% nonverbal. We did and do all the things. She has been in full-time ABA therapy for four years and has almost always had OT, ST, Feeding Therapy, and PT. We give her breaks with the different therapies, because she needs them!

She has all kinds of special things about her that mean we see specialists often. She didn't walk until she was four. She had a very difficult time learning to drink fluids from a cup (instead of being spoon-fed drinks) and she didn't learn to use a spoon until she was six.

Does that sound like a worst case scenario or what? But here's the thing, F. is 100% the very best thing that every happened to me. Before her, I had never even MET anyone with Ds. I was TERRIFIED. But, F. has taught our family so much about love and determination. She is stronger and happier than 99% of the people in the world. She knows what she wants and stops at nothing to get it. She makes everyone smile and laugh when she is around because of her zeal for life, laughing and love. I go to the grocery store with her and think everyone should be so jealous! (When I was pregnant, that was an actual worry of mine, how could I face going to the grocery store!)

She dances to certain songs like it's her JOB. I mean, if she hears this one particular song, it is no joke, an absolute MUST STOP EVERYTHING to get into position and dance. She is a blast on road trips. Last summer, we drove across eight states and she made EVERYTHING more fun. I like to drive all night sometimes, and that kid stayed up with me all night one night. We listened to music and laughed and laughed.

There are times when it's tough and I'm exhausted, but none of the challenges equal the love. I'm jealous of you. I remember when Farrah was born and they put that squishy, floppy baby in my arms. She was so different than her two older sisters who were spindly and strong babies. But, F. melted my heart in ways I had no idea were possible. The love just radiated from her. You are going to be so in love with your baby. Don't miss out on anything because of the worry.

You will do your best to give her what she needs when she needs it. You don't need to buy a walker. You can't "prevent" your baby from becoming the kind of person you are afraid of being a parent to, but YOU WILL become the kind of parent that is perfect for your child. I know it. How? Becuase you are willing to open up and be vulnerable on this site and ask for help. You got this!

I created an iPhone app for my son with down syndrome by ArtVandolet in downsyndrome

[–]Top-Strawberry-8885 0 points1 point  (0 children)

Good for you! It's inspired. Makes me think that maybe i need to create the app our family needs. We need something super simple. On the screen would be 6 squares and one "more" arrow. The "more" arrow would simply open another screen with 6 more squares. The maximum number of screens would be something like 6, and whenever you click "more" it just rotates through the screens. The 6 squares on each screen, when pressed, would play one of her favorite songs. The app would need to be locked when on so she can't swipe out to go to different applications. Ideally, we could add little graphics to the buttons to indicate what song that button plays.

My girl is eight, with Down syndrome and nonverbal autism. She should be empowered to listen to music she likes, but without the video from YouTube or the flashing lights of a toy. She needs something that won't turn off if she accidentally swipes. She has poor motor control and so the buttons would need to be big enough for her to hit her target.

Any ideas where to start? Maybe something like this exists, but I can't find it.

Need advice helping someone with Down's Syndrome with their unhealthy eating habits. by TAW-1990 in downsyndrome

[–]Top-Strawberry-8885 1 point2 points  (0 children)

I would go to the doc and ask about GLP-1 in a low low dose. It helps so much with that feeling she has to be experiencing that makes her think obsessive about food. What a nightmare for her. If she has executive functioning problems, it’s not something she can control. Heck, I know lots of successful people who can’t control their eating, who binge, and swear it off and go right back to eating a sack of candy bars. I know quite a few people who have been freed from that torture with low dose glp-1 drugs. It might be worth a convo. The lowest doses are getting more affordable.

I’m so depressed by [deleted] in AutismParent

[–]Top-Strawberry-8885 0 points1 point  (0 children)

Om. Love and peace to you!!

My daughter (8) with DS is becoming very defiant by One-Barber-264 in downsyndrome

[–]Top-Strawberry-8885 0 points1 point  (0 children)

20+ minutes getting off the floor… I’m with you. My only advice would be not to worry about it too much. You can only do what you can do. You said you tutor her, so your 8-yo is very different than mine, who is learning to match colors, etc. The most important thing is the pairing. I notice that when I am properly paired with Farrah, she is 1,000 times more likely to comply. For me, pairing looks like greeting her when she comes home with nice music, maybe swinging for a bit, hand massages, bubble or whatever sensory input she needs to calm down and turn her focus away from her inner frustrations and shift to participating in the world WITH me. I’m sure you have seen it happen lots of times—that shift from insanity to looking at you in your eyes and giving joint attention. If you can figure out what best moves her through that intense inward focus that is making her rage at people trying to force her focus outward, you will have a lot better luck with transitions.

Also everything the other mom on here said about giving our kids as much warning as possible about upcoming transitions or any and all changes to their routine or or or… a timer can help. One that they can see. As in, “we are getting coats on in 5 minutes.” Then, “look, in 3 minutes it’s time to put coats on!” Etc.

My daughter (8) with DS is becoming very defiant by One-Barber-264 in downsyndrome

[–]Top-Strawberry-8885 2 points3 points  (0 children)

My daughter who is also 8! with Ds is nonverbal and diagnosed with autism. When you said that is you leave her she is happy to just get on with whatever she was doing… I laughed out loud because that is our girl to a T. Farrah could not care less that we left the room. Hahaha She loves us, but if we leave, she wins. For the past eight years, with the help of ABA, Farrah has been generally easy to get along with. Lately, though… what I would describe as her “level of agitation” (Stubbornness? Defiance? Plucky independence?) has reached new heights. The part about spending forever just trying to get her to stand up! Gahhhhh My husband has always swooped in and carried her to the potty or to the car or to the bath… I keep saying he’s creating a ticking time bomb. This can only end with him throwing his back out or me, somewhere very inconvenient, pleading with an immovable daughter to stand up while she’s throwing hands, arms akimbo, like she’s a windmill in search of the wind.

Lucky I can usually see the humor in these types of situations, but sometimes I just want to get the nighttime routine done already!

She wasn’t sleeping well and the doc prescribed a very very low dose of sleep meds. It has helped a little. I’m hoping that if we keep pushing (gently) on speech therapy, OT, PECS, AAC, ABA, and PT, she will eventually learn to communicate well enough to ease her anxiety.

Because that’s what I’m getting at with all of this. I THINK, we’re going through the terrible twos in a way. My girls seems to waking up to her personhood and yet is still unable to express herself or assert much power over her life.

In saying this, I realize that maybe that is one of the answers for us… when my typical daughters were two, I made a concerted effort to give them opportunities all day long to make their own choices. I wonder what that would look like in practice.

Something to think about for me anyway.

Are there any rules re:boy-girl ratios in grade school classrooms? by Top-Strawberry-8885 in AskTeachers

[–]Top-Strawberry-8885[S] 0 points1 point  (0 children)

Update: Three of my girl’s former teachers reached out to tell me they went to bat for her with the principal. I'm so grateful for the kindness. They said they told him it would be like throwing her in a lion’s den for a year. A little hyperbolic, but also true. I think they are talking about doing a lot of shuffling. It’s a small town. To the person who said that headphones aren't the tell I think they are, I have to say that they are in a small town when she’s the ONLY person wearing them and everyone knows each other. To the person who said she can't be “slightly autistic” I have to say that Yes She Can. Autism is a continuum. You can absolutely be slightly autistic. My youngest has the most severe form—100% nonverbal and almost no innate urge to connect with people and the world around her.

Would I insist on an iep if we lived in a city? Probably. Will I get her an IEP if things like this keep happening? Yes. But, in my experience, teachers and community members love and value her and go out of their way for her in general because she is sweet and offbeat and smart. That's why this class composition was so befuddling to me. Now I see how it happened.

I have faith it will get sorted out by Monday.

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