Last week in our community, our 501.c.3 offered “Making Safe Happen“, a playful approach to personal defense, 2+ hours, designed for a wide swath of learners. In classic analog Game-Based Learning, building muscle memory when anxiety isn’t near, when it all feels safe enough. Hotdogs and s’mores were on the picnic table, bringing us back to the food of community inclusion. Funny, I hadn’t noticed in The Golden Girls that there was always one spot left open at the table. It’s a beautiful metaphor of acceptance and invitation, and a beautiful article at that link above. How had I missed “my seat” in all those reruns? The author (Nguyen, 2025) of the TIME article (page 24) says that spot is for each of us, as we are audience to each other.
The Bruce article, page 32, same issue, “when he was battling his first bout of serious depression, compulsively driving past his childhood home and eventually seeking therapy”, speaks of his personal intervention, his gut insight to his own healing, “I still drive by that house” (his seeking inclusion of old memories into how he might “make it right again now”.)
I hope you can read both stories, and draw your own conclusions, your hungry heart toward friendship and acceptance. I did myself, to verklempt.
Both stories seek peace of mind for you, for me. So, may I please have a spot at your table? I promise you vice versa, for I am lonely. Open napkins, open hearts, please. May not be easy, but let’s really try.
I was disgusted and I was begging. The judge said something, then later someone else said something that aligned, and the lightbulb went off in my head. If you have ever said, “why does helping my 18+ special needs child have to be so hard?”, please consider sharing your experience and wisdom to improve the current plight. Share your good ideas. Here’s the back story.
Remember how you dread checking the mail? All those the denial letters from HHSC or SSA on your kid. Letters asking for more info. A thick pile of empty pages to be filed out with repetitive info, stuff you have already submitted before. And was denied before. A long, sad waste of trees.
Same here. Three more envelopes into two piles, the day’s mail from Texas Health and Human Services Commission (HHSC). We have been up to three Fraud/Fair Hearings Appeals/Denials, all denied but I didn’t know why.
Let’s pause a moment while I share a growing, grass-roots, parent group gathering personal stories of wisdom and experience: Your Life Journey Advocacy. Facebook. Website. We are gathering volunteer family stories of how government can save time, trees and churning. Ways to reduce costs and waste. Will you share your story, your proposed improvements, please?
As an example, instead of 109 different Medicaid programs to “test for” (with untold interpretations a greenhorn employee could misinterpret or lie about), generalize that down to 15, let’s say. Make a one-page chart simplifying qualifiers, ages, relevant factors, a simplified roadmap that a new employee or family could navigate and understand.
Back to my son’s mess, the back-story. Over the last year or so, I have lost track of how many (I could make a very good estimate, if you really wanted to know) phone calls, letters, emails and f2f conversations I have had with both subject-matter experts and those oh-so-not. I appreciate the experts hugely, and have sent emails attempting to connect them to each other. I found this useful HHSC Fair/Fraud Appeals email: AppealsInfoArea2@HHSC.State.TX.us which takes you to an attentive legal side team of HHSC but not connected to the main organization. You may have heard Texas Health and Human Services Commision (HHSC) “tests” our applications for whichever of the 109 Medicaid programs is indicated. You have 1 in 109 chances of being in the right bucket. That’s less than 1 chance in 100, less than 1% chance of being in the right program. Then there’s Social Security Administration. As John turned 18, the two agencies went their separate ways. They seem to coordinate with each other much better before the child turns 18 (“Transition”). Their two databases (HHSC’s and SSA’s) can see each other, just in case someone tells you the opposite. Personally, we have a Lost-in-Space DAC application with SSA. I call Disability Determinations every three months or so, with zero luck thus far on where John’s case is and if it’s been assigned. SSA to us is a black hole. In my frustration, using the advice from many kind helpers, I am copying ever-more experts with each round of HHSC denial. 109 Medicaid programs in Texas, and you are also fighting system quandaries. (I do admit to always kind to the other person on the phone, and I tell them I worry about their Moral Injury. It is always surprising how human they become when I lay down my sword.)
So, we know how to get a Fair/Fraud Hearing triggered: Express dissatisfaction with the outcome or say “appeal”. I have unwittingly triggered three of these.
Eventually, with the help of Allison Schaberg of Consolidated Planning, we discovered the reason HHSC was denying John’s various applications. “TxHmL doesn’t allow the special waiver income limit”. Here is what MEPD said. “Texas Home Living is unique among the Waiver programs because it is the only one which requires the person to be eligible for Medicaid under another full Medicaid program such as SSI, Disabled Adult Child, Pickle, MBIC, etc. to receive services. A person cannot be found eligible for Texas Home Living under the special income limit. In this case, this person was receiving Texas Home Living services under his eligibility for the Children’s Medicaid (CMA) program. When he lost eligibility for CMA, he also lost eligibility for Texas Home Living. To continue receiving services, he would need to either be found eligible for another full Medicaid program or apply for another Waiver program that does use the special income limit.” What that means is when John turned 18, the Survivorship he had been receiving because his dad died now caused him to lose his Medicaid, his case manager at the LIDDA, and his place in the Waiver line receiving services. It took far too much detective work to finally learn why.
So, we wait for the next outcome/denial, which will most likely be the open DAC application to SSA that exists somewhere but no one knows where. Also, it sounds like he will need to wait for his HCS slot, theoretically when he will get the special income limit. Lots of red herrings we don’t know: “Is he working? If so, he could do Medicaid Buy In. There may be some work incentives, which obviously would only apply if he is working and has earned income. There is info about the work incentives that apply to Medicaid. These don’t always apply as some programs do not allow any income to be disallowed, such as the waiver special income limit. It is gross income, counting all income, no exclusions. I have asked my MEPD person exactly which programs the IRWEs apply to.” We are still waiting for that answer, as well as several supervisors who promised to call back.
Time again for the phone call to Andrew, Social Security Administration SSA Disability Determinations, 800-252-7009, who told me John’s SSA DAC application is “definitely in the queue”, is unassigned as of yet. I asked oh-so-nicely to be escalated to a supervisor, he will, he promised, and I should hear back in 3-4 days by phone, which never happened. Each time I talk with SSA, if they answer their phone, it’s a pleasant conversation, but I still hate getting lied to. Still, I make a special effort always tell them “thanks for answering your phone.” Someone told me to set up my son’s SSA account through Login.gov. I did. There is no information in that online SSA acct.
To complicate our case, John has been receiving SSA Survivorship since his father died. Also, John worked TWC’s Summer Earn and Learn program, SEAL, for five weeks. Small paychecks, he is happy there and wants to work. John is 18, so he also has several years left of our ISD’s Adult Transition called TRAILS, very good for his developmental delay. They push on independence and part-time work placement with borrowed jobs. We shall also pursue volunteering. I have confirmed John is still on the HCS waiver list. There are a lot of programs John won’t qualify for, which we are learning the hard way, one-by-one. Hopefully our churning can benefit others going forward, but I have to talk about it, like here. If I just suffer and keep my mouth shut, how do I help you? I did cancel the remaining two HHSC auto-generated Fair/Fraud Hearings, as I have learned it will just be a waste of people’s time.
Out of the blue, I got a phone call on 06.17.25, 9:30am, for 25 minutes, with the kind and informative Ms. Brittney, one escalation from the AppealsInfoArea2@HHSC.State.TX.us team, regarding my email of 06.16.2025. To find her department again, I email the AppealsArea2 team, they will send it on. She’s almost on maternity leave, so no phone number or last name. Very helpful professional. I get some clarity on what isn’t working. It doesn’t bring clarity on what will work, but instead just why the (pointless) denials are coming in the mail. She told me (long story short) that I needed to call HHSC’s PSU Public Service Unit, 1-877-438-5658 and apply for John for Waiver Medicaid, probably Star Plus, which I will do if SSA denies endlessly his DAC application. Why do you care about this endless detail? John’s not been “tested” for any of the right programs since he turned 18. Turning 18 has turned our years of careful preparation on its ear, so be aware?
Ms. Brittney talked about SSDI or RSDI (“RSDI stands for Retirement, Survivors, and Disability Insurance. It’s a program administered by the Social Security Administration (SSA) that provides monthly income to eligible individuals based on their work history and contributions to the Social Security system. RSDI encompasses three main types of benefits: retirement benefits for those who have reached retirement age, survivor benefits for eligible family members of deceased workers, and disability benefits for individuals unable to work due to a disability for him in the future.”) She told me there is no record of John’s SSA DAC application in what she can see of the SSA database. Zero record. (SSA Disabilities Determination does say it exists, they just don’t know where.) She said that HHSC also has a DAC process, but they won’t veto SSA’s vote. We may have to appeal to SSA if they deny DAC. Possibly we can apply to HHSA DAC, but again, they won’t override SSA. She also said we may need to submit an SSI application to SSA(“SSI is for people who are 65 or older, as well as people of any age, including children, who are blind or have disabilities.” She was the one who told me the reason I keep getting Fair/Fraud hearings is the key word “appeal” or great dissatisfaction auto triggers an Appeal. So, a few new clues. Bottom line: Zero accomplished thus far, all that work, time, paper, cost.
Going backward in time, when John turned 18 and our carefully crafted plan fell apart, we initially applied via our LIDDA with their “golden ticket”. We confirmed via HHSC Omsbudsman’s office they did receive the 1,491 pages Ms. Linda faxed in but that never got connected to John’s Medicaid HHSC case. So, 1,491 faxed pages just floating through the computer system. Then, soon, I got three more fat envelopes from you-know-who. Our LIDDA Coordinator has spent days on our reinstatement paperwork. She’s a champ. One of these envelopes wanted my signature on 20 pages of application. Envelopes Two and Three demanded all support re-requested (like they didn’t trust the 20 pages and all the documentation the LIDDA Coordinator had already submitted on John’s behalf) AND they wanted all the pages back by November 21 and 24 respectively. Those deadlines are calendar-impossible. One was as if I was applying, wanting my “self employment receipts”, etc., etc., making zero sense, which I wrote that back to them on their letter in ink. The whole point is John is 18, his own person applying. Mom only wants re-establishment of Rep Payee, based on the FSIQ (Full Scale IQ) and DAC (Disabled Adult Child) application. Such government duplication and stated threats we would lose it / be denied again if I fail to comply timely. Timely was already impossible. Sometimes I respond back via mail, writing on their letters and returning them in their self-addressed envelopes. (Anything to save a little tree.)
Another long phone call this day with HHSC trying to fit the pieces together. They didn’t fit. First call was with Jose @211, then transferred to MEPD and MSP (all very sad acrynoms) with Ms. Claudia. (Still twisting around trying to settle too many applications with no case numbers, that LIDDA two-day fax of five required docs, and two case numbers for John.) Ms. Claudia (HHSC) tells me to write a statement with all the blah blah blah, mail it to them. I get home, feeling really beat-up. My phone rings, Caller ID says “HHSC” so I grab the call. It’s my hero Ms. Ulma/Ular, and she asks me who is messing with her case, that she’s been watching John’s case (like “dibs”?), and I give her the short version. I asked if any of that makes any sense on her side of the table. She laughs and says “yes”. “I am so glad I am not nuts” comes out of my mouth. We proceed to have the kindest, funniest, human-est conversation my heart could ever have imagined. I will do what I am told to do. Please don’t give up hope for your case(s). I hope not to have to involve the Omsbudsman but that is stupid. I have learned to go straight to HHSC Omsbudsman or the HHSC IDD Omsbudsman.
For all the parents fighting medical insurance wars, my blood went cold thinking what if John only had Medicaid (which he still doesn’t have), didn’t have the Aetna COBRA policy he’s paying for from his dad, during our very recent ER surgery on Testicular Torsion in Washington DC in Thanksgiving, 2024. They might have denied emergency surgery? I would be washing dishes for 30 years?
One of the tasks I dread and thus procrastinate on is calling Social Security Administration and Texas Health and Human Services Commission. Can you blame me? I have PTSD shock. My son has 2 cases in limbo, one with each agency now that he is 18 and stuff unbundles when the child turns 18. Before I start writing senators, Tracy with Maximum Health Network told me yesterday at Behavioral Health & Suicide Prevention Task Force: Montgomery County to go into the local offices. Just go in. Big words. In the past, it was a 3-part farce with SSA, but, hey, I called them today, on Good Friday and they were open. Both local agency offices answered the phone, I got the next step with SSA rolling (SSA-1372-BK only lasts 1 year once!!) and Tuesday will show up at the local HHSC at 7:30am and get in line. (HHSC doesn’t make appointments or give get-in-line numbers; the office is busiest at lunch). Nicest guy on the SSA phone, I told him thank you for answering, for helping us with the next things, especially in this hard time. He said they take pride in helping our families. I almost cried. Asked him to tell my other contact there hello for me. He said he would, using her name and my name. So, dear parents, stay proactive, kindly feisty and surely appreciative. Take good notes, don’t delay. I just dialed the number, didn’t over-think it. However, I have been lied to, ignored and returned day after day by “just going in”. What someone tells me on the phone doesn’t match what I am told after standing in line with my little number.
Buoyed up with false hope, I paid a physical visit to our local HHSC office in Conroe,Texas. Got there bright and shiny at 8am, stayed until 11am. I was first in line to check in. A nice mom of five of her own children, the intake CSR, told me wrongly I had to reapply. I eventually got myself to Morgan in Escalation, who told me never to reapply, but instead appeal. No supervisor was in the office. Morgan sent a message to the female who did answer an initial question for her on our behalf via Zoom and apparently became unavailable after that. As our discussion ensued, I asked Morgan to summarize/recap in John’sprofile. I would love to be wrong in believing she didn’t. She said his open case had been terminated/denied. No notice was sent to me as had always been the procedure, “too bad” she said if the Postal Service didn’t deliver it. We talked in circles on the factors she cited, all of which I would label excuses. She did want to win, although she did initially admit what HHSC did test for made no sense. She also went on to say John’s case had been closed because no trust documents had been returned, and that he was ineligible until he was 21 due to Survivorship income. We had a big circle conversation/argument about the timing of the trust docs having been uploaded into their database as a 2-part file uploaded by our LIDDAas outlined in my 11.22.24 letter. (Have I put you to sleep yet?) I confirmed with both Morgan and the intake CSR that all my summary letters were in their database. As well as having already been uploaded, I also offered physical copies of the trusts I had on me, but Morgan said she had already sent the case on, there was no way to contact that person but she would eventually call me. (She never did.) Why do they lie so much? There was no believable explanation as to why John had been denied and had also failed to notify me. In hindsight now, I got the why but dang, it took a long time to get a straight answer. We discussed past confusions of processing John’s case, including wrongly thinking I was wanting benefits for myself and CHIP for John. The STEP DOWN incident is also now moot, and I had fully reported on that, letter in their files. (I have learned to be anal in my documentation.)
In summary: It took way too long to learn why John’s relationship with our LIDDA ended. Our LIDDA didn’t know and they have really helped with the dirty work. (As I said previously, I have confirmed John is still on the HCS interest list. He was on the Texas Home Living list, receiving services, with a Medicaid case, when HHSC dropped him due to Survivorship exceeding income levels in Texas Home Living for those 18+.
SSA in Conroe twice has told me there is no way to check on his case once it goes to the Austin black hole. However, Allison Schaberg had given me the phone number for checking with Social Security Administration Determination Services. I called and got some clarity on its existance but not location.
Then there was the phone call from “Ruby in El Paso Texas Health and Human Services Commission at (915) 759-7667” but no extention shared and who wasn’t in that office when I called. No one knew her, nor that she was really “Rubie in Houston at Texas Health and Human Services”. I had called again Margaret at their Omsbudsman office a week previous, left all the details. No response. I did receive in yesterday’s mail 85 blank pages of #HHSC forms they already have in their database: 1,491 pages of uploaded faxes (all dated 11/6/2024 through 11/12/2024, all sent by our LIDDA, Tri County Behavioral Health Care) and never connected to his two case numbers (I have mentioned this previously). I have also interacted withSupervisor Maggie Stewart. My original Fraud hearing paperwork from Ms. Ivonne Desiga, Hearings Officer, cited Ms. Robin, Assistant, at 737-867-7384 and Ms. Desiga’s supervisor, Ms. Sandra Pinales at the same phone number. The conference call Fraud phone hearing told me to call 1-888-702-5981, Code 16091266898 at 8am CST. It was a very sad hour.
I also had seven days of phone calls and attempted phone calls which I documented in summary letters, also based on 2 envelopes received Friday 05.16.2025 and a thick letter-sized envelope received Saturday 05.17.2025. Then came a phone message from “Ruby in El Paso Texas Health and Human Services Commission at (915) 759-7667” but no extention shared and who wasn’t in that office when I called and no one knew who she was. Turns out Ruby in El Paso is really Rubie in Houston, HHSC. I had called again Margaret at their Omsbudsman office a week ago, left all the details and have heard nothing since. I get in yesterday’s (05.17.25) mail 85 pages of HHSC info they already have in their database, partly citing some of the 1,491 pages of uploaded faxes never connected to his 2 case numbers in spite of great help from Tri-County Behavioral Healthcare. I kept John home from school Tuesday for their 8am Fraud hearing, they told me “no, we don’t need him” and mail me “yes, we do want him”. What are families to do? So here’s the answer from our fun-filled one-hour with Texas Health and Human Services Commission and the Fraud Hearing Officer, (John and I on speaker-phone 8a this morning, John was excellent I will add) “denied”, of course, denied based on so many red herrings and irrelevant issues, with submitted “evidence” on only a tiny amount of the issue, I respectfully asked both Mr. Daniel Holcomb, Medicaid Eligibility Texas Health and Human Services Commission Appeals and Litigation and Fraud Hearing Officer Ivonne Sesiga “What is a family to do next?” I had also respectfully said twice how maddening it must be to work there, their only comments were, “go talk to your legislatures and to community groups”. It was all I could do to keep a straight voice for my inside laughing. Daniel Holcomb (HHSC for MEPD, and only MEPD) went on about regulations that we all know change when the child turns 18. All the rules, data bases, prior findings, blah blah blah. They said that all they know is their little silo, they offered zero suggestions. I will get a hearing email, which I will appeal back in writing. I will go back to the Omsbudsman and IDD Omsbudsman offices, copy the LIDDA and Steve Toth and Brandon Creighton staffers, add another layer up and go on living each day. John was out the door like a flash, goosing me to get him to school.
Then I had the greatest phone call of the decade with Ms. Lynn Humphrey, Texas Health and Human Services Commission, 903-677-9206 office number. She’s got 20 years with them, an old-school Case Worker who really cares, who can remember pre-#McDonaldization of the agency. She’s of the customer mindset, happy for you to have her number for cases of #Elderly and #Disabled. The Omnsbudsman office sent her to me. I couldn’t believe it — a real number, she answered it, last name and everything. After we discussed what I should be doing for John, I begged her over and over to give our parent/community group guidance on what needs to be done to make this better. I nominate her to be on the Governors Board, et al, to help as a Subject Matter Expert with great heart, from the inside out. I got the skinny on a lot of processes, all to the purpose of our helping them get better.
We shall be assembling and collating family stories on #DevelopmentalDelay, #HHSC, #SSA, #Disabilities, #MentalHealth. We shall be collating ideas from the families and the community in a public forum. We ask for yours, positive, action-forward-focused, for the website and YouTube Channel. Send me your link, if you prefer. Make sure it is action-oriented, well-thought-out, positive and forward-looking.
I was so broken hearted earlier today, having received 3 email versions of 2 Fraud Hearing Decisions, all blah blah blah. Today I have also reached out to media. No takers yet on that. I was on a phone call to legal, when Ms. Lynn called and gave clarity and experience to our mission. I took that a sign of direction. Please join us while issues are in churning, voting is in session, budgets are being formed and everything is up in the air, I would argue that this is the time to get Power’s attention. Listen to a few wise people who remember all the good processes, when people mattered, relationships mattered. I got her permission to tell you. Help us. Please don’t sit on your frustrations. That won’t change anything. Send us your stories of what we need to improve, and if you have ideas on specifics, even better. We will soon have a website up, a YouTube channel and a voice for action.
Ms. Lin Humphrey was sent to me on May 21 by the HHSC Omsbudsman Office, with 20 years of HHSC experience as a case worker who still really cares, who can remember pre-McDonaldization of the agency. She’s of the customer-care mindset, possessing great knowledge of HHSC rules. After we discussed what I should be doing for my son, I then begged her to give our parent/community group guidance on what needs to be done to make this quagmire more efficient, much as I had begged the acting judge during our Fraud hearing. She had many pro-active ideas of process improvements, and she gave me great inspiration for our community-based, public story-gathering and advocacy to your offices. As you know, we are all parents with much skin in this game. We have zero luxury to be non-nonchalant or careless in our stewardship. Ms. Lin Humphrey is recognized state-wide as an exceptional Subject Matter Expert (SME) with great heart, to help lead the improvements to the system from the inside out. She helped my heart and spirit heal instantly after our Fraud hearing (nothing personal) that was utterly lacking anything of reality in the lives of our families struggling with HHSC nonsense. Thus, our growing group of parents and community members shall assemble and collate family stories on Developmental Delay, HHSC, SSA, Disabilities, Mental Health in a public forum. While issues are in churning, voting is in session, budgets are being formed and everything is up in the air, our citizen coalition believes this is the time to begin and never stop get Power’s attention. I specifically got Ms. Lin’s permission to tell you.
We shall not sit on our frustrations. That won’t change anything.
We shall be publishing family histories / stories with specific ideas and future strategies for the very wide variation of co-concurring issues in (but not limited to) Developmental Delay, Disabilities and Mental Health.
We have exciting plans for your suggestions. Thank you. We will be keeping you all alerted, as well as all our community boards, support groups, collaborations, friends and families who help each other. Grass roots to the max, using the growing array of tools available to get out the word.
“Talk to your legislators” is what I got when I begged both the Fraud Hearing Officer and HHSC Supervisor (both present on the phone call) “what do families do next?” The angels have a wicked sense of humor, for our NAMI of Greater Houston team had just spent the day in Austin talking to legislators.
On May 23, 2025, I received a phone call from Ms. Smith of HHSC Resource Unit via HHSC Omsbudsman Office’s Ms. Margaret Lopez (see previous notes) request to check back with me. Ms. Smith put this following information both in John’s original Case #102…. (cited in the November appeal and appeal denial) and also current Case #105…. (perhaps showing “closed”). We discussed past history of applications, denials and appeals, RSI (Survivorship) and other programs based on income and home/family size. Ms. Smith was thorough, I told her I appreciated her knowledge, and on behalf of her interceeding because the Omsbudsman office sent her to me. There may be a day when he needs that option, and I can’t be cavalier on his behalf now.
I had a mouthful of food when the HHSC phone call came in. It was Margaret, HHSC Omsbudsman Office, (lucky me on the assignment rotation, she’s got a great heart) at 877.787.8999 (El Paso, I think). We have spoken before. She had seen the phone call report and was checking in. I told her she had the internal summary, my letter to them in the mail. Nice of her not to snort….. She got my long answer to her question, long, thorough, from-the-outside-in, well-coated in my appreciation of the quandaries. She patiently listened to my “this is just like an LEA ARD/IEP team” blah, blah, blah. We talked about policies, legislative skin-in-the-game (that’s when laws change), and how the Omsbudsman Office doesn’t mind playing internal bad cop for our families (my words). They consider it their job. John has some remaining denial-appealed, also-to-the-LIDDA issues, and other than those, we are waiting for Godot ….. er…… two agencies. She parted with this to me: “Fight the Good Fight” #YourLifeJourneyHHSC
Remember that lightbulb? My saying that the Fraud Hearing judge told me “talk to your legislators” when I begged her for “what are our families to do next?” That I talked to Lin Hamilton, HHSC 20-year case manager, got a lot of encouragement. I also talked to Margaret at HHSC Omsbudsman, she said to “fight the good fight”. So there are heroes from the inside out.
#YourLifeJourneyHHSC, #YourLifeJourneySSA, #YourLifeJourneyLEA shall start archiving positive, fact-filled, reform-oriented stories from the outside in.
“Invest in your friends”. “Plant Some Seeds”. Become Electric Again (paraphrasing), the feeling that goes “to the basement of your soul”, Find “the green growing edge of your life”.
These are some of his words I loved best. He was talking about needing community, how we can feel when we help others to launch toward their purpose, Change v. Transition.
The back-to-school email said to “consider getting a graphing calculator as a great investment for your child”. Graphing calculators are used for advanced math. We are still working on addition and subtraction, almost a teenager. It’s hard not to feel the mom shame of where John is in math compared to his neurotypical peers.
I have a poster of Desiderata on my bedroom wall and use it every night. Get one for you. Desiderata reminds me that I am the guiding star for my family. I am also supposed to be that support for my extended village. As much as I wish for only the “good times”, we can’t have the joys, the highs without the despairs, the lows. It’s the trudge up the hill that is the journey. It is our scars that tell our stories and encourage others around us. For my support system, I listen to the right people. I read. I pray. I forgive myself. I do my version of meditation, usually when I am alone and driving. Music sometimes helps, or I will shut it off.
When I was pregnant with John, I remember praying, asking God to “let me be relevant”.
Dummy.
It is easy for me to laugh at myself. Humor, humility, laughter have saved me in my darkest moments. I developed this game with my kids when they were sad and needed validation. I would hug them, and not let go…..not let go until they were all done being sad and had moved on to laughing. The oxytocin from the long hug (which kind of turns into wrasseling) brings connectedness.
Try some variations with your family. I hope it serves you. Peace be with us all.
Our (special needs) families sometime endure extra heartbreak, when we don’t expect more. It’s that “out-of-the-blue” part, the suddenness, that hurts most. Have you had a time when in spite of your best efforts, things fall harder, cut deeper into your soul?
Ponder when it is time to declare victory and depart the field. Yet at the same time, let us continue always to “Look for the Helpers” (Fred Rogers) and hold our peace.
Only God can make some things right. I am not allowed to judge … there’s a verse for that. And if I didn’t have faith, I do not know how I would cope. Over the years, I have ranted at God a few times since our diagnoses. Recently, it’s more a banter. I am guessing that’s a good thing.
I have shared freely and openly about our many interventions, our highs, our lows. My intention is to share so our kids can earn a better adult life. So, May you and your loved ones live well. May your pain heal, May your tears dry. May your spirit rise and laugh again. May you do your best and when that isn’t enough, May you walk away with your head up and your heart forward. May your scars help others. May you save your energy for those who matter.
During COVID-19, there was clemency toward Medicaid coverage for those with disabilities, including neurodiverse and developmentally-delayed children. Coverage was then dropped (I have heard 70%). We are one of those families. Are you?
He was dropped off the Texas Home Living interest list where he was receiving services, on it since age two. John had fallen from Medicaid grace because his dad died, Social Security was informed, Survivorship kicked in. Mom then appealed twice and was denied twice. It was the Survivorship funds that disqualified him from Medicaid and his LIDDA relationship. (He’s now back on that interest list, at about 115,873, starting over. )
He just turned 18, early childhood is over and the Transition Game is fully here. Last month, Thanksgiving 2024, we were out of state, with John suddenly requiring emergency surgery. Thankfully, he has an AETNA policy, a self-pay, COBRA-group conversion from his dad’s life. His only medical insurance.
Complicating things is the SSA (Social Security Admin.) and HHSD (Health and Human Services of Texas) don’t talk, don’t seem to have any coordination. This is not so good for families. Mom (with the OK from the LIDDA) chose to wait until his 18th birthday to re-try to help him re-file for the Texas Home Living Waiver interest list (he went from “got it” to 115,873) and Medicaid insurance coverage.
Each family’s version of transition can be a maddening process. Our personal efforts toward the SSA and the HHSC, with the help of the LIDDA have no result yet. I have been wary to call SSA and HHSC. That, of course, is counter-productive and won’t help my son. So I dial the numbers, prepared to patiently tell his story to each helper to whom I am passed. I take thorough notes with lots of details. After each phone call (never less than 1 hour in length each), I recap all the items in a punch-list letter back to them, keeping a copy myself. (I am glad to share any samples with you if you need.) (Also look into programs MEPD, MCPW, Long-term Disabled and MSP.) Be kind and patient, my advice. I have found it really pays dividends.
One of these things to get done is the FSIQ (Full Scale Intelligence Quotient), done by a doctor, physician and/or the LIDDA.
Another task in the timeline is the the executed SSA-1372-BK done by the school (Local Educational Authority, LEA) diagnostician declaring your child will continue in public school past their 18th birthday and then forwarded to the SSA by mail/fax. Tangled up in that is the application to the SSA to do an evaluation (ours was DAC). My experience is that is processed by phone. Don’t make my mistake of going in. Anyone who tells you to just go in is wasting your time. You will want a phone appointment with a disability specialist at your local SSA.
I suggest you ask for confirmation of instructions in writing. I had prepared a cover letter with John’s priorities, and did ask them to make a copy of my letter (punch list). She said he didn’t yet have a disability folder for uploads. Digital uploads were predicted, but we ended up with the LIDDA faxing a monster 2-part digital file attachment on a 20-page application. Also, the SSA told us we would need to sort out with the LIDDA issues with them, it was not the SSA’s problem.
Still in School? Our LEA adventure has been vigorous, and worth every bit of effort. John has fully used his LEA, and we have no regrets about big, bad public education and extra-curriculars in a big, bad high school. If you want to discuss the Parent Presentation, I am happy to share what I have created for John over his years. Consider it your marketing educational rebuttal plan, all in writing, over the years, into the federal document that is your child’s Deliberations.
Waiver Interest Lists: Hopefully, years ago, you called your county’s LIDDA to get on the appropriate waiver interest lists for your child’s future. Google that if you need to. Maybe you don’t eventually need or want it. (Hallelujah!) It may be one of the hardest phone calls you ever made. Don’t get emotional. Just do it. The sooner, the better. Search for your state, county, LIDDA and the waiver interest lists (Texas Home Living, HCS, CLASS). For example: CLASS has 3 parts: 1. Cognition-challenged. 2. Medically-challenged/fragile. 3. Vision/Hearing-challenged. You will reconfirm with them each 1 or 2 years. You may also find the listings online and/or on the app Your State Benefits (ours is Your Texas Benefits).
Another task of the Transition Game is the broad umbrella of Financial. Check also resources at https://www.consolidatedplanninggroup.com/…/allison… They offer a free initial consult. I then paid for further services. Lots of info on the Consolidated Planning YouTube Channel. Also, learn about Representative Payee. I have a bit of a head start, as I am his Rep Pay due to a divorce and a death.
Please use the experts at your LIDDA. My experiences with SSA and HHSC has always been best with courteous, unrushed phone calls. Their letters are hieroglyphics to me, so I ask a lot of questions. I have always found the helpers on the other end of the phone to be patient. I haven’t been burned yet.
All this is a drop in the bucket. There is still Housing, Legal, Social, Educational, etc. More interventions at this link. Take one step at a time. I can’t multi-task this stuff very well.
You know the feeling: your well-crafted plan for your child starts to falter.
We know nothing is guaranteed, and that everyone acts first for their own individual needs. It’s not anyone’s fault, but it does make it clear it’s time for a shift in strategy.
I must help my child learn how to navigate it all. I can’t rescue him from the heartache, for it has become a lesson in life to learn well.
To quote a great philosopher:
“… I’m sorry to say so
but, sadly, it’s true
that Bang-ups
and Hang-ups
can happen to you.
You can get all hung up
in a prickle-ly perch.
And your gang will fly on
You’ll be left in a Lurch ….
I’m afraid that some times you’ll play lonely games too,
and face up to your problems ….” (abridged OH, THE PLACES YOU WILL GO! (Seuss).
So it’s time for new plans. Having a full plate of waiting interventions is a ready resource.
This has recently happened to us. Still quite painful, there is no way but forward. No plan except Next. My job is to help John move through any regret and shame into better ways to spend time and to find authentic friends.
John and I talk often about neither of us wanting pretend friends. This over-generalization speaks to a child of developmental delay, trying to catch up on peers and vocabulary. Most people are fully-absorbed in themselves, and truly not watching us. We shouldn’t have such expectations.
One of my best litmus tests is his face. His expressive language sentences aren’t totally reliable (not that he’s lying; his brain isn’t yet wired for straightforward vocabulary of self-analysis). His face can truly show happiness.
How does your child show joy?
We had worked really hard to set up a system of supports. It had worked for a number of years. Personally, for John, his year of 9th grade was joyful. There were some superb 12th grade peers who helped him feel included. In the months after that, it was a slide downhill until even I could visually see that few cared. He could feel that. Thankfully, we had a lot of great activities with authentic friends that we could immediately slide into place. And I continue to help create other performance venues that also benefit other young people.
Public performances, 2 years apart. He posted to his Instagram that day.
We both talk about pain and shame. A lot. I ask him, and see what he does and says.
We both must let go and move on … find new things. If you are a therapy parent, you know this research process never ends. I am forever on the hunt of new groups, new heroes doing wonderful activities, more helpers with momentum. Then, we join in. My job is to become a fellow helper to others and to help my son earn a good adult life. Among many skills, this includes learning to make, keep and appreciate authentic friends.
Learning to make and appreciate authentic friends. He’s a happy kid.
It’s that time of year: Elective selection for next year. He says he wants Band, Theater and AFJrROTC. It won’t all fit. Not in regard to time of day nor in regard to modifications/accommodations. The military doesn’t modify, ever. He has been talking about ROTC for a long time. He has friends there, the uniforms look wonderful, and he can feel the camaraderie.
You may remember that if your grades suffer, so will your extracurricular activities, and quickly: Within the first 5 weeks of the school year. So if you get in academic trouble early, it’s quite hard to dig your way out fast.
He really should pick something besides AFJrROTC, for many reasons. Maybe the computer scheduling will make that forced decision for him. It just can’t be Mom telling him to give up on a dream and be practical. The school and I all know it’s all a long-shot for John, a stretch of his academic challenges, executive function and self-regulation.
Our high school been excellent at giving John enough rope to earn it (or not). He had been showing some behaviors that I interpreted as self-sabotaging in band this semester. I figured it was a coded message of frustration, as his skills (and his sentences) are behind his peers. Dyscalculia (affecting sequence, timing, patterns, counting, etc.) and other learning inefficiencies are alive and well at our house. There hasn’t been the expressive sentence of “Mom, I’m frustrated and I may want to give up next year”.
I told him he wasn’t a prisoner of band, and could pick something different next year but he would lose band and not get it back. There must have been some truth in all that, as he’s doing much better now in his choices and wants to stay in.
So, we filled out next year’s elective forms and will see where the schedule allows John. There’s a lot I don’t know, but I do know that these last two years will important opportunities for John to earn experiences. The LEA knows we work hard on interventions in our non-school hours.
At home and with his private team, if he fails academically, we won’t grieve but instead we will be glad that he had an honest try at the best life of inclusion he can earn each year. Our LEA team has been stellar, the law is here and we appreciate the quandaries they face. He must treat each teacher and class with high respect and his best decisions. We train for natural consequences.
Speaking of all that, his most recent essay is “How to Earn a Girlfriend”. We have lots of puberty natural consequences to work through, as well as all social ones.
His best essay thus far in life, “How To Earn A Girlfriend”
The start. Not the forever.
It won’t be John’s GPA that makes his life. It will be all the social EQ, executive function, auditory processing, best choices, and friendships he can create and keep.
Part 2: As it turns out, he has recently been self-advocating, verbally, boldly, that he wants one of the entrepreneurial electives in Specialized Instruction. {It can also be described as Coffee Cart in Special Education.}
The rejected elective option is Art, which has never been anything he valued. Arts and crafts to him have always been a bridge too far, something to get through as hastily as possible. Creating art continues to be a fine motor challenge.
We have just had a life-planning transition meeting, and it turns out he’s delighted with Coffee Cart Entrepreneurship. Not what Mom would choose, but, hey, it isn’t my life.
This will be his way for his natural strengths to start to blossom … but it doesn’t seal his fate. He’s quite happy for the opportunity, the training and the friends.
Mom is listening better because he is advocating better. I don’t always have to read his mind through his behavior. (Do you have that at your home?)
We still are working on that girlfriend thing. I am telling him, “in college”, and that he can practice now by using good manners, personal space, kindness and sentences. I will keep you posted.
Here’s something to try with our young digital addicts. It really works at this house.
John has a daily list of stuff to do before he gets to goof off (electronically, most likely). Some of these daily tasks have minutes, so the phone timer is our daily companion for self-regulation.
I wish he was as good at analog time-telling as he is at digital time. We really struggle with the long hand and the short hand, sadly. He is also using the phone calendar function to keep himself on track, but I digress.
So, for example, reading is 15 minutes. He sets his own timer, to learn to be ever-more independent, his own executive function.
We spend a lot of time together in the car, doing his list. He will interrupt himself reading (aloud or silently) to lay a big sales pitch or renegotiation on Mom.
I have learned to use a variety of facial micro-expressions, all a part of his social-emotional learning (SEL). I have also learned to use the fewest number of words, because ….. well ….. words beget more words. Since I want him to refocus on his reading (in this example), I will ask “pause?” He doesn’t want pause because he has learned that stops the clock.
When this works the best, he will immediately say “resume”, and get back to his task. You see, I didn’t say “quit talking and get to work” (or anything similar). I used one word to ask him a time question.
He really wants that list done.
We take a lot of old-fashioned learning in the car when we drive. We have hardcopy of his band percussion assignments, drumsticks, some dog-eared Harry Potter paperbacks (pages dropping out by the day), and the device he uses for IXL, our on-going academic supplement. (Check it out, it might work for you. You choose the grade, the subject to study, you get analytics to share back to the school district, and it costs about $10/month.)
So, tools are ever at hand. Mom just asks “Pause?”, he says “Resume!”, and starts himself back on task.
I will admit this does loop a lot.
He may want “to talk”, and that is his choice, resulting in a Pause we can both live with. With the phone timer the bad guy, I try to make all this not my job. If he “wants to waste your evening, that’s OK with me”.
I do have to be mindful to disconnect my list from his list. If I fail in this, I get frustrated.
We work on time awareness constantly. We know early intervention is hugely important.
And yet, each day ticks by, toward adult “independence”, whatever that will look like.
Deputy Austin Gay, the go-to for Precinct 1 tour guide, shared his day with me. He has a long career of service ranging from Hostage Negotiation to Crisis Intervention to Mental Health.
During the day, Deputy Austin Gay (soon to become a Sergeant and a supervisor) shared his personal vision for growing their back-office operations and pro-active county-wide projects of prevention and intervention.
The key, he said, is listening thoroughly. Then to guide, educate, protect and redirect.
(It sounds a lot like parenting, doesn’t it? We show respect to our kids’ perspective by listening, asking questions, letting them get their words out first. This, of course, takes patience and a kind heart.)
This Mental Health CIT unit is one of only two, Montgomery County Pct. 1 Mental Health and Crisis Intervention unit and Conroe Police Department’s CERT Team, in our geographically-large county. It has the top-down mission to purposefully support mental health as the first consideration when the heat is on.
He went out of his way to show me the eye-popping quantity of square miles the units cover 24/7. I also got a first-class tour of agencies and law enforcement colleagues. I asked them the same thing, “What do you want us to know? ”
At the top of their list is to do all they can to calm those caught up in crisis situations. More talking, avoiding handcuffs. (As a mom, I would say more “easy way”, much less “hard way”.)
This listening and building relationships takes more time. It takes patience. Slowing down someone’s knee-jerk reactions can make time on your side. (As a mom, this sure rings true in my house.)
When he encounters those headed toward trouble and/or voicing suicidal thoughts, he likes to ask “what happened today that is different from yesterday?”, trying to determine the antecedent causing the behavior or action(s) taken. The team shares “if you are depressed, you are not crazy”.
I began learning more about Sheriffs and Constables. Our county has one elected Sheriff and five elected Constables in five respective precincts. (Other agencies are State Troopers, DPS, Fire, EMS, and Justices of the Peace (JPs). Precinct 1 covers Lake Conroe, Mental Health, Canine, Schools and other operations.
Our county recently was awarded ARPA funds via the CARES Act for 10 more mental health crisis professionals: 3 supervisors and 7 deputies. This grows the team from 14 to soon 24.
Beth D., Program Director, TCBHC Crisis Services
Our local mental health authority (historically labeled LIDDA) is Tri County Behavioral Health Care (TCBHC). It is a long-standing, grandfathered-in non-profit covering Montgomery, Walker and Liberty Counties, and provides resources for the under-and un-insured. They do much more. They have an in-patient and an out-patient team. Different buildings, similar mission. There are laws to constrain media coverage of law enforcement (funny to think they consider me media), so this photo with Beth D., (Interim) Program Director, Crises Services, TCBHC, is the only one representing many conversations of the day.
You have seen the ambulances of Montgomery County Hospital District (MCHD). They also operate EMS Districts, District Chiefs, and 24/7 EMS staff.
Within the Emergency Services Department (ESD): Fire-coordinated responses, 911 Dispatcher offices, and numerous stations (shared agencies or solo). (I have been studying this several years, and I still get dizzy.)
We then started talking about our young people of neurodiversity. I asked him what he would share with you all. Here are some recommendations:
Don’t let your child control the family.
Parents should teach real consequences for the real world. Natural consequences.
Teach your children right v. wrong.
Have boundaries and rules.
Discipline your child (time outs, groundings, etc.)
Listen to your kids. If they talk about a teenage breakup, it’s just as real and powerful as an adult divorce.
Be aware of the pain of the moment. Youth don’t always have the big picture of life’s ups and downs as adults have grown to know.
If your family member is going to drive (as in launching for independence), have a family determination of the possible consequences, financial liabilities, physical risks, possible damages. This would apply if the young or elderly had their version of neurodiversity / reduced awareness of natural consequences. There is a potential of a felony or death, a lifetime of care, resultant guilt and other psychological issues. Determine that your family member is emotionally ready and is capable of remorse.
A “crash” has contributing factors. It’s not an “accident”.
If a young person is neurotypical, the age of culpability is usually 10 years old. (If there is developmental delay and/or issues of neurodiversity, this will be a different number, to be determined by the court and experts.)
We also talked about Emergency Detention Orders (EDOs). This became a complicated conversation. If you have a first responder in your life, ask them.
I hope to soon spend another day with this team. Lots of bridges to keep building. Want to help?
This school morning was the last-Friday-of-Junior-High-School.
And everything he did blew right through my expectations.
Silly mom me, I had hoped for a rosy-glow sort of last Spirit Day launch.
Ha!
You know how that goes, don’t you?
In every direction, he didn’t do as I would hope.
I could give you a list, but my blood pressure will go back up.
Last night, at a band booster parent initiation, I learned a neurotypical young man, several years older than John, does some of the things that John does.
When I hear such great news, it is a gift to my peace-of-mind.
Dorky, cave-boy teenager things. Could this be normal? Typical?
Our therapy and interventions world has a forward-push, compliance mindset. Right?
Pretty rigid.
This morning, John was way past zoo animal. I have seen better behavior out of chimpanzees.
Such boy-stupid stuff could be happening in other, neurotypical homes?
No words for this sense of relief.
So, as he went running for the bus looking exactly like a motor-planning Mr. Bean movie before my eyes,
it was a wonder he had everything.
Yes, of course, all in the wrong place according to “the plan”, whatever that is.
Still, all in his arms, and he was laughing.
In 30 seconds, we met in the middle for the forgotten mask hand-off.
I then told him to go faster.
Forgot to say I love him forever. That is my shame.
Not that the morning wasn’t to my “expectation”, but that I forgot the most important words of the day.
I sure hope he comes home today as usual. I have some mending to do to my spirit.
This first 2020-2021 winter of COVID–19, we all have been battling Mother Nature. She won v. our pipes, and it was a spectacular inside-the-house mess. I put my son in charge of the larger, louder, borrowed wet vac, and it was sensory overload for hours. Triage is now over; the extensive repairs in the house will be a monster. He did great, with just a bit of his auditory stim.
All things considered, he probably coped better than mom did.
But, in the general day-to-day of life, do I disregard/ignore/allow his stimming? It depends. How does it make his life better?
Usually, the purpose of the repetitive action of perseverating is to find immediate individual comfort and security. In our world of raising children with neurodiversity, I hear often we should allow it, tolerate it, let them indulge in it.
His stim of choice is a loud mostly-monotonous hum.
There was a recent mom-eureka-moment, when I noticed him go for 3+ hours, neurotypically quiet, not humming, when he could have, but didn’t, because he chose. (It was in our church’s media control room where we volunteer.)
Now, to be sure, he does stim occasionally for Let’s-aggravate-Mom reasons, deliberately starting as I enter the room. Attention-seeking. This audience leaves that room pronto, asap.
He may also stim for causes of grief and boredom. In the spirit of “water-the-flowers-not-the-weeds“, and “name-it-and-set-limits“, he is re-directed to stim in his personal bedroom anytime he prefers. (He also hears this boundary regarding puberty issues requiring privacy, if you catch my drift.)
So that’s my compassionate re-direct, which I always hope he chooses later (delayed gratification) to instead stay in the moment of joint attention.
Tomorrow’s hope, his future, is far more important than today’s comfort.
His current choice of stim could really affect the future of his relationships, in every direction.
There is another issue that affects both our short-term comfort compared to the longer-term benefit. I have been stalling on a formal Local Education Authority (LEA) (school) educational evaluation for years. In kindergarten, the wrong set of tests were used on nearly-non-verbal John, and the result was a pretty low IQ number.
In subsequent ARDs, the Committee decided John wasn’t stuck in his learning, that he wasn’t that IQ number, and that he continued to make academic progress. My mom-fear was his repeat performance of not caring, his not understanding the unintentional consequences of doing fast-and-sloppy work that would result in a label of bias against his possibilities. Our ARD discussions were transparent, we all agreed that he didn’t yet have any label other than autism. They all knew mom was in no hurry for a worse label, given the research available and with moving through developmental delay with nearly 24/7 interventions.
I agreed to have a discussion with the diagnostician and the on-going speech-language pathologist (SLP). We agreed they would push John, using humor and as many inclusion tools as possible, to make some educational evaluations on his academic progress. Not included is any IQ testing. I agreed to trust them and their educator hearts of coaxing out of John the best they can of the best he can do.
Two junior high educators who do will do his academic evaluations. I trust them.
For quite some years, we have been watching the issue of curricular LRE at his local LEA. As a parent, it was a gentle charm offensive of both the law and what John’s learning strengths needed for his best successful learning. Like the very best parts of Wright’s Law, in your face.
So, now the time has arrived, and I have had many conversations with the powers-that-be. John has a huge opportunity he has earned.
Can he move from Specialized/Explicit Instruction, into the world of Resource with Curricular LRE and hold his own?
So we are back to the trade-off for both he and mom of short-term comfort at the expense of longer-term quality of life.
Time will tell. I will keep you posted.
Keep our kids moving forward. If they are alive, there is always hope of continued neural pathways.
(The Emergency Game, Adventures To Share & Village Goats)
Many of our kids love structure of time and activities ….. therefore, so do many of us parents. School is dismissing soon for the holidays, and we will have the kids home ever-more-so during this time of COVID-19 shutdown.
What John needs isn’t more stuff. Instead, he needs a greater database of experiences, to think more of others and to build his vocabulary.
It will be a much quieter, different kind of Christmas at our house. John’s brother will be staying in Oregon. John’s beloved cousin/nephew and family will be staying at their home. John’s dad went into hospice care on Christmas Day last year, and on to heaven mid-January. Bin, our exchange student, is back in Vietnam. So, things are a lot quieter.
Plus, puberty is here, and so is his rising awareness of the world around him.
So, we need some new ideas.
Such as: He is getting a village goat for Christmas. Where the village will be, we don’t know. But I bet we will talk more about geography. The World Vision goat he is donating will be surely loved and will have a great life somewhere, providing micro-economic support to an extended family.
World Vision’s Goats have long been a favorite of ours
Another thing we will be trying: Have you ever had a list of things you wanted to do and yet ran out of time? We have. So, this year, we are being more purposeful. Each desired adventure is written on a note to be wrapped, and one-a-day will be chosen by John for the next day. This will get us out of the house for part of each day, and still allow for some goofing off (John’s favorite thing to do).
And I keep adding adventure ideas as I think of them
Rather than allowing the hours to drift into endless electronics (other than the Raspberry Pi component Santa is getting John), we will continue to have his daily list to get done first. (Raspberry Pi may move up the list hierarchy.)
It’s my poor planning if there isn’t time on that list for shared mom/son conversation about life. One of the results of all his interventions and the natural process of growing up has been his increased interest in life around him, including urgency and emergencies. (I want him to learn to hustle, to move faster, not to dillydally….. you know what I mean, right?)
These days, we see ever-higher stakes on why we must educate our children of neurodiversity to somehow handle the chaos of the world. One of our worst parental fears: What if they get caught in the wrong place at the wrong time? They won’t be seeking trouble, but could slip into it accidentally.
Some of our young people have a challenge in processing complex requests, putting sentences together under pressure and following rapid instructions. What if our kids get caught up in something they don’t understand? They don’t sense the danger nor knows how to handle it?
Therefore, we practice. We practice what to do and we practice short sentences he can use when the pressure is on.
We have to train developmental delay to see traps ahead, to calculate social risks, to pay attention to the clues from others. By no choice of their own, our kiddos are naive, distracted, sensory-overwhelmed and challenged in processing language.
And yet, adapting to these risks is what helps them step into their desires, their motivations and to be able to move into their adult lives.
So how do we get them to react faster and be more aware of such dangers?
We are playing the Emergency Game (audio podcast link) at home: processing each Amber alert, every ambulance siren. Asking the question: Is it real or pretend? When a firetruck goes by, what is happening there? When we go anywhere, can he find his way back? I let my kid lead the way retracing our steps. A gathering of people these days will catch our eye: What is going on? Is it an emergency? Does he need to do something? Or need to escape to safety? What is safety, exactly?
Randomly, I will playfully holler at him to “come here, quick”. He dillydallies, so I call out “emergency!”, and he laughingly comes trotting over. “Doesn’t seem like an emergency to me, Mom” he says. So we label that a pretend one.
Years ago, I made these cards to give away when my son would have a bad-decision-emergency, and onlookers wanted to give me an earful. As you already know, helping your child through such an important and urgent teachable moment requires your full focus. Not much time to educate advice-givers, you have your hands full. The times that I ignored the spectators and didn’t say anything to educate them, I felt shame and regretted they still had their wrong presumptions.
With these cards, I could hand them a bit of understanding, and then focus on helping re-direct my child through our own little emergency.
Our kids need good solid neural pathways and awareness of emergency-responses. They need to know how to read body language and tone of voice. So they have will automatic tools to use to survive if they are ever in the wrong place at the wrong time.
So, in this season of forced leisure, social isolation and slower pace of everything, it’s my mom-job to keep him bored enough to keep his brain busy. If I let him fade into the black hole of electronics, it will displace the deeper, creative, critical thinking his future needs.
So we will set and keep some boundaries.
Perhaps some of our ideas may spark something in your family.
We are all doing our best to help the right things flourish, to communicate and then hold the right boundaries.
It is easy to get distracted. Life is a slippery slope of choices.
Things may be doing well, everyone playing nicely together, making good choices…..
then something happens, and things go downhill fast.
How do we help model and teach self-control, emotional equilibrium and self-regulation?
Ever hear: “Don’t worry that the kids aren’t listening. Worry that they are always watching.” (Robert Fulghum, “All I Really Need to Know I Learned In Kindergarten“)
So, evidently, I teach by what I do.
I should pay attention to good choices (flowers). I should do my best to ignore relatively-harmless choices that get under my skin (weeds).
(If it were a toxic, life-threatening weed, that would be a different response.)
I do ask John why he is humming or stimming. I try very hard not to bring shame into the conversation.
I try very hard to name the weed with respectful words and tone of voice. And then with the same tone and respect, set the boundaries for this weedful choice.
For example,
“That’s called stimming, and you can do that in your room”
or
“that’s called playing with your privates, and you can also do that in your room”.
With everyone under your roof under foot, and useful, novel distractions more than six feet away, our patience is evermore necessary.
This past winter, early on a cold morning, I sent this email to John’s teachers:
“It breaks my heart but John chose to miss the bus this morning. Dillydallying, bad choices and choosing to ignore all offers of help. This breaks my heart, and yet we’ve been cruising up to this precipice a long time. So we are doing a Mom Day and #MomList all day today. John has helped me compose this email and is pressing Send. Barbara G. had talked about this happening once but only once in her family. I’m following that model.”
Thus, John was not happy, and tried valiantly to renegotiate.
Soon, from another room, I heard the front door slam.
No panic, I figured he was walking toward school.
I grabbed my stuff and headed out.
Scanning the street: no John.
38 degrees F outside.
I drove by the bus stop. No John.
Good thinking, John. I had said 10 times that you had missed the bus.
Why would he wait at the bus stop?
Then I headed out of the neighborhood, out to the busy street.
No John.
(Afterward, I hear from a neighbor mom who said John stopped in front of her house, the last bus stop out of the neighborhood. She then told him the bus had gone, and off he went wordlessly.)
Wordlessly is the key thing: I never get the long (or short) version of any story.
He is a young man who keeps it mostly in his head.
Back to #FadingTheSupports, I spy John stopped on the sidewalk, very near a high-traffic intersection.
I pull over, give a little toot, and beckon “come here”.
My son John has tested every boundary with me these last few days.
One morning, he kept banging on the drums instead of anything I was asking him to do, tauntingly, purposefully, when I finally said “I’ll be waiting in the car”.
#MomCapitulation.
I gave up on redirecting, and just got out the door with whatever was left of my dignity.
Nothing I was doing or saying was moving him toward out-the-door-on-time.
He soon sauntered out the front door, still in his pajamas, playing with our gigantic colorful umbrella. Like a new toy.
I started to back the car down the driveway.
He got the message, I guess, and went back inside.
All of this with a big smirk on his face.
About 5 minutes later, he came out dressed. At least, as far as I could tell.
He seemed very proud of himself with that umbrella. A new skill due to all the rain we’ve had lately.
He (finally) climbed in the car and said “I guess we’re last kid today.”
Yup.
My nagging doesn’t make him move faster. My removal of the audience does.
Please know we’ve been backward chaining and rehearsing and practicing these skills for years.
The better I back off, the better he comes forward.
The more time I allow for this “game”, the better things work.
The best two things I do is #MomZipIt and remember that the snooze alarm is not my friend.😳
I can control when I start the morning, and that influences his progress.
But I cannot control his choices. I can only do the best to set the environment for his success.
It was a school field trip, and someone needed to take charge of the Bus sign.
One neuro-typical child had the sign, but realized it was the wrong bus for her.
My friend Edith, the adult in charge, had to move to a further bus, and needed a sign holder.
She asked for a volunteer.
Believe it or not, the kid that stepped forward was this little guy.
And then this friend (she is quite the mentor) stepped up along with him, in support.
And thus John was in charge, and it all seemed to end OK.
Flash forward a month or two.
John was on the couch, under a blanket, still in his jammies.
Mom had been saying it was time for school for many minutes.
It was getting close to being the last kid to Choir.
I asked if he wanted any help.
More than once, I am reluctant to admit. (So that means I was nagging!)
Each answer was the same, “No. By myself.”
I finally said, “I hope you aren’t the last kid to Choir. I will wait for you in the car.”
And I walked out.
It was about 10 minutes later, when he was locking the front door on the way out.
A face full of smile, shiny eyes.
His shirt was upside down, and pants and socks needed a few adjustments.
Other than that, it all looked pretty much good enough.
(And, months later, this system still works. The sooner I step out, the more time he has to get his plan together and take action. He doesn’t need me telling him the same thing over and over.)
Because of a diagnosis or two. Maybe also some developmental delay, maybe some different behaviors. But no one is in danger. And the diagnosis isn’t “catching”, nor will it rub off on anyone else.
But still, #LetGo by those with whom we thought we had a connection.
By extended family who can’t understand nor offer help.
This may have happened to you, especially in the first days.
I was wrong to hope, to assume unaffected family could understand.
Dangit, I couldn’t even understand what was happening. So, realistically, why should I hope or expect extended family to help save the day?
How about being let go by friends – still very painful, and yet more easily understood, perhaps.
The Shame and Pain of Being Let Go
And how about when we are let go by others:
Schools, worship, neighbors, acquaintances, business, and others we thought were in our community.
At our house, we have recently been #LetGo by our piano lessons on-the-go, home-delivered.
Out of the blue, right after a public recital,
minutes after I gave the teacher her Christmas gift in cash.
It’s one thing to expect it, to see it coming.
Much worse when it comes out of the blue.
When you don’t see it coming.
And yet, rejection is a part of life.
Sometimes you know the reason;
sometimes you don’t.
If we think it is because of our kids with learning differences, because of their behaviors or someone’s bias, it hurts keenly.
Because it is less our kids’ “fault”.
And more the diagnosis and the struggles that accompany.
If it were just about us as adults or as parents and not about our kids, we could probably more easily process the #LettingGo.
Because we are supposed to be able to handle stuff like that.
The rejection becomes intertwined, us with our kids.
Do you recognize this in your child?
