Back in September, I wrote “What Will Rachel Do Next Year?” Seemed like a smart way to communicate to everyone because it is THE question. I outlined her preferences and some of our options. I said we wanted to enjoy the year and trust that God has a plan. Everyone at our house has worked hard to get to this point.
I am a planner. I like things to be organized. While I trust God with Rachel’s future, I would prefer a balloon message to be dropped sooner than later. A stone tablet would also do. One of my dear friends, who is at this same point and situation in this journey, has the same philosophy. In January I said to her, “Is it time to panic yet?” The last month has been a roller coast of emotions for me personally. I kind of felt like it might be time to panic. Let’s review.
First, we don’t have a solid plan yet. Some of Rachel’s options for next year have become more limited by application deadlines and financial limitations. Adult services are a complex myriad of agencies with multiple points of contact. The Medicaid Waiver feels like a noose around my neck. At times, I feel I may suffocate. There appears to be no organized checklist. It’s every man, woman, boy and girl for him or herself. We do have the benefit of others who have or are navigating the system to give us some direction. Every phone call seems to be met with another acronym to call or email. Every question you pose is met with a different answer from people within the same agency. I feel more overwhelmed than I ever have before. Some conversations, and one in particular that seemed to be closing a door to our dreams, left me feeling like I was getting the diagnosis all over again. I was left saying, “Why does it have to be so complicated? Why do we have to continually be proving our kids’ worth?” That is exactly how and what I was feeling. Some days I actually just sat on the couch and cried as I looked into the fireplace.
In fact, I found myself feeling discouraged and sad to the point that I started to question some of our decisions. For example, we, and the we does include Rachel, decided a while back that the school district’s 18-21 year-old program was not a fit for her. There are always pros and cons to “programs.” One of the most significant factors for us in our decision-making process is Rachel. Rachel knows that it is time to graduate. One of her former teachers said, “Rachel has always embraced being included. It makes sense that she would move on to the next chapter.” This could not be more true. While she loves her high school and school, she knows it is time to go. Her friends are graduating and starting the next chapter. She has been talking about graduating for several years. Remember, she’s the one who told me she could do whatever she wanted when she turned 18. She turned 18 and she hasn’t said much about that since. She does, however, talk about going to college next year and her dream of attending the University of Arkansas. She also knows that life will be very different. Rachel does a lot of self-talk and when she is anxious or overwhelmed, she does more. We have heard her talking and saying, “It won’t be long until everyone goes their own way.”
Another factor is that we don’t believe “the program” our school district offers is appropriate for Rachel. It seems to be a “cookie cutter” program with two options neither of which are a fit for Rachel. We have stated all along that we are moving on. However, my recent discouragement led me to re-open this public school transition to adulthood conversation. One part of the local district program is supposedly not available because Rachel didn’t participate in it in high school. We have a difference of opinion about the individualized part of the program and the program outcomes. No one has provided us with data that the program actually leads to competitive employment. I might have told them that under IDEA they were supposed to provide Rachel with an individualized transition plan , that I am exhausted and too tired to fight them on it, so we are “done, done, done.” I need to focus all of my energy on the best potential future outcomes.
Somewhere along the way, I had a discussion with my friend and one of the giants in the Down syndrome community, Ricki Sabia. God used that conversation to remind me that my gut feelings had always been right for Rachel. My own discouragement, sadness and feeling overwhelmed had led me to question that gut feeling and feel panicked. When they said Rachel couldn’t function in a gen ed classroom as a kindergarten child, I trusted my gut. When the speech therapist assaulted my child in 4th grade, I trusted my gut. When they said she would not get to have an elective in middle school, I trusted my gut. When we went through four case managers in the first nine weeks of high school, I trusted my gut. Now is not the time to panic. It is the time to trust my gut and for me that is trusting that God has a plan for Rachel. It is time to enjoy and celebrate this momentous achievement.
I am still overwhelmed, I am still ready for that balloon to land, but panicked I am not. The Class of 2018 graduates in 82 days but who’s counting?
Here we are 3 months from the end of Project Search, the transition program. Last week a total failure and I’m questioning every decision. She should be excelling in this program, but she isn’t. Having micromanaged her school career and activities I feel like I can’t trust the people I have now let take the lead. What will happen in May? I have no idea, I too rely on God’s direction and I sure would like a sign!
Breathe and remember my life verse Jeremiah 29:11. God knows the plans He has for all of us. And a friend reminded me the other day as she often does, God loves Rachel even more than I do. same for you. Your comment about not trusting the ppl you let take the lead is one of the very reasons I am trusting my instincts and moving on. It’s time for us to fly – to the next stage!
Loved this genuine post that perfectly described the struggles of navigating very challenging systems for our dear children. There are times when I, too, would prefer a stone tablet to drop into my hands. Letting go of the programs that don’t fit for our children allows other opportunities to come into sight….. but it may be a less “typical” path because you aren’t coloring within the lines that the “systems” have established. You are a Great Mama. Keep trusting that gut. 2 Timothy 1:7
Thank you for reading, commenting and clearly understanding. I love 2 Timothy 1:7. Believe it or not, I argue with God about that verse a lot.
Dan is at same stage and so far two of the systems that are supposed to help have done very poor assesments and then decided they know him far beter than we do and that he is capable of far less than he can do. This is the time to trust ourselves and to trust our kids, I am getting ready for more person centered planning for more assett based thinking . I like the sound of the discovery process and I am listening hard to Dan. There is a disability industry complex and there is opression and often low expecations. Your daughter has such spirit and so many skills and is blessed to be in a famiy that may not have a lot of wealth but who are open connected and have community.I cried the other day after reading the most ridiculous assesment of Dan from the group paid to train people with DD to ride the bus. They listed several areas where they said Dan had no skills at all and basicly said he could not be trained until we build beginning skills. It was profoundly insulting and so off base. Everyone that knows him was appaled, He had been interviewed for an hour at the end of a day with a poor process and by someone he had no interest in impressing. Community and relationships and joy along with supports will create the best answer and all those values that burn so bright in your heart. Wise adults with disabilities and advocates before us helped chart those North star values. We have the hard navigating to do and it is a more hostile climate for dreams of community but it will be what I hope you see as you stare into that fire !
Angela- It means a lot to me that you read and posted. I really respect all you do. I know that you get it. I know that you understand I am just exhausted right not and we’ve had it better than many others. My heart truly hurts for those that do not have the options we have. Thank you again for reading and commenting.
I’m so sorry that you all are having to deal with all this uncertainty!! Just remember that you will figure it out!! You & Jonathan are the GREATEST of parents & the GREATEST advocate voice for Rachel. I know it’s hard to know why we have to face such tremendous setbacks in life. Remember there’s a purpose & continue full throttle ahead. Jawanda, you have, & will continue to Change things for the better. I have total confidence in you my friend. You, Jonathan, Rachel & the Lord will figure it out. Try to enjoy this last 82 days of Rachel’s senior year. This is a one time deal!! You & Jonathan deserve to celebrate your great accomplishments as well as Rachel!! You are AMAZING, you are BLESSED & you have The GREATEST ONE on your side!!!!! Love you my special friend!
You’ve got this!!!
Gosh, you’ve been with us for a long time now! Before Rachel and you have been my dear and loving friend. I wish we lived closer. Thank you for always being our cheerleaders. I hope to see you at Rachel’s grad party!
This transition is the most stressful and the moment you think you might get some sort of semblance of your life back you realize you need to be more involved than ever before.
Seek out scholarships. They exist and aren’t always advertised! I counted out UCLA’s program—then two of the most financially challenged families I know accessed scholarships (not because of income so we could have accessed them too) and their kids went there almost free!
As for the MediCaid waiver—find out if there’s a WIPA representative in your area. They won’t work for Social Security—they will work for the school district, for a jobs support agency or some place like that. They have training in disability related servieces over and above the folks who are supposed to be the go-to.
(((Hugs))) there’s always community college for one year til you get the 4-year program figured out too.
Sandra – I appreciate your reading and your comments. We do have options which is a great thing. And we have God who loves Rachel more than we do and that’s an even greater thing! You know how overwhelming and exhausting it is. We pseudo have an idea of what she’s going to be doing next year. We have a top community college here. We had some unexpected obstacles land in our path recently. But I’ve regained my strength and onward we go. Isaiah 40:31 seems appropriate.
I’m with you Jawanda! PS Stop noting the countdown! Arghhh….
My countdown makes me giddy Roxane! Thanks for reading and glad we are in this together girl.
Keep trusting your gut. It works and when one door closes, another one opens….what type of jobs would fit Rachel? Then find internships for her to explore during the summer . It will all work out
Kathleen- thank you for your comments and for reading. I appreciate. We have a pseudo plan. Watch for more on that and it involves all of the above. This summer we don’t want her to work because she has a lot of last church activities with her class she has been with since 3rd grade. I want her to enjoy that time. Jeremiah 29:11 is my life verse. Thanks again.
Oh dear, yes. Yes and also, hugs. I have faith in you all. You’re much better at the endless lines of paper trails and bureaucratic navigation than I ever have been (or will be) The path will come to you. Love to you all.
What a great description. Endless lines of paper trails. So appreciate you Mardra and so glad we have connected. I gain great strength from you and all you do. Thanks for reading.
1 Corinthians 13:13 (msg) Trust steadily in God, hope unswervingly, love extravagantly. My window sill verse these days, as I count down the days to change. Thinking of you as you take the next right step you know to do.
My dear friend, a cup of coffee with you would go a long way. I love your window sill verse and think I’m going to camp on that one for awhile too. Love the Page family. Thanks for reading and sharing Mickie.
Hugs and prayers for you all on this difficult journey. Keep trusting God and your gut!
Appreciate your Rebecca. Thank you.
A little late on the read…I know you know this but it’s good to hear it again, you have a really big “family”. There are so many who love you and Rachel. As the speed bumps surface, and they will, we will be right beside you. Jump in our cars and just ride for a bit. Restore your souls and then get back behind the wheel. We were created to live in community. You have made ours so much richer! We are in this together. You are not alone. We love all 3 of you dearly! ❤️
Kris-
I know it but I do need to hear it again. We are so blessed to have a big family and a family that loves us so well. We are blessed, so blessed. We are most grateful for the family of friends God has given us to support and love us!