Reality Check: Life of a Special Needs Mom
Tuesday, May 14th at noon:
I’m sitting in the diner having lunch with my son just trying not to cry. Maybe I have had my head up my ass all these years. Did I overestimate what I thought my son would be able to do? Do I need a reality check?
Joe has Down Syndrome and is graduating from high school this year, and I am trying to find a transition program for him. I just left a possible program wondering if I have been wrong all these years. Perhaps it was the lack of enthusiasm from the teachers as they wrinkled their noses, tilted their heads and said;
“You know he does have to take an assessment test to get into this class.”
I knew what they were trying to tell me and I was mad, but I was also hurt. Did I think my son was more high functioning than he is?
Maybe I Need The Reality Check
I have been pushing for Joe to take the regents – not because I thought he would pass, but why not try and see what he can do? I want him to be able to get his HS diploma – is that silly? In order to do that he needs to take his regents. Am I doing that for him? Or am I doing that for me? The lines are a little skewed right now.
All these years, I would never project into the future because I wasn’t ready, and it was too scary. I wanted to enjoy the moments and live in the day. Well, I can’t do that anymore. Now is the time that I have to start making hard life decisions for him. I thought I was mentally prepared, but maybe not.
Please Don’t Underestimate My Son
My husband will tell you about the fight we had because he put an idea in Joey’s head to sell popcorn at the movies. It was an innocent comment while we were at the movies, but I didn’t take it well. Other family members have mentioned how they have seen an adult with Down Syndrome bagging groceries at a store or cleaning bathrooms at a rest stop.
Why would you mention that to me? I flip out whenever anyone says things like that and underestimate him. That is not how I raised any of my children! I wasn’t any different with Joe. Maybe those people need a reality check? Gosh, I would love to give them one …
Now here I am visiting schools and I feel like my bubble is being burst. It is so depressing. Did I really have it wrong all these years? Why can’t my son still work on his reading comprehension skills? After 18, there doesn’t seem to be much education except for life skills or functional education. Why does he have to start worrying about working and what he is going to do for a living? I just can’t get there.
Admittedly, one of the places I visited today was really discouraging. The people that run these programs meet Joe and think they have a good grasp on what he can do and they don’t. I want him to do early child care because I feel he would be so good with little ones. He wants to do a culinary program, however, I know he doesn’t use knives much at all, so this doesn’t seem realistic to me.
In my mind, that will be setting him up for work at McDonald’s, but not necessarily cooking, maybe cleaning tables. I hate the stereotype and can’t let that happen! I am sure that may sound mean because some people would be happy with that and to them, I apologize.
This Mom Wants More
But, I want MORE for my kid. I don’t want him being underestimated, but now people have me wondering if I was the one who needed the reality check. My dream has always been for him to live independently, either with a wife/girlfriend or a bunch of his friends with supports in place – I am not completely unrealistic.
I want to be upbeat, stay positive and fight, but sometimes, I get tired. I am very tired right now. Tired and discouraged. Making comments like “ he does have to take an assessment test to get into this class … with the emphasis on “does” didn’t make me feel good. I didn’t let on in front of them. I wanted to be a nasty bitch and say, “clearly you don’t think my son can do this,” but I didn’t. Maybe I will insist on the test and he will show them!
But really – why would I even want him to go where he obviously isn’t wanted? Or is it that I want so bad to prove it to them and stick it up their ass. They shouldn’t judge a book by its cover or a person by their disability. But I have to remember this is about him, not me wanting to give them a reality check.
There are millions of beautiful, heartwarming moments that he gives us, but there are also many times my heart silently breaks. I pray he doesn’t realize I am sad and doesn’t notice when he is being underestimated or stared at. God, I hope he isn’t aware when people talk down to him.
Joe isn’t pushed as much as I would like, and too many people will let him get away with things and do things like his artwork or write his homework instead of making him do it. Maybe I am too hard on him? But somebody has to be!
Making Decisions
I second guess decisions I have made, and now I wonder what would or could be different. Maybe I should have taken a reality check years ago. So many people have given me praise for my fight and demanding more, but today I wonder if I should have slowed it down or put him in a school that had a program already in place. I have plenty of times when I second guess myself, and this is one of them. I just don’t know what to think anymore.
My other kids have made decisions for themselves, but these kids can’t really do that. We may pretend and ask, but mostly, that is not the case. Or is it? He says he wants to do culinary and I want him to learn something that would give him a real job. Doesn’t a job in a preschool as a helper of some sort sound great? Is it my fear that a culinary program will end him up in a fast food restaurant? Or one of these programs will have him stocking shelves in a CVS? Every transition program that I have been to has told me they take the kids to CVS to learn this skill.
Stocking shelves is another thing that I think is beneath him. Is it my arrogance? Is it my confidence in him? Am I a mom wearing her reality blinders? I don’t know anymore … the lines are skewed. I am afraid to start this next chapter when I will find out if I do need that reality check, but I have to pick myself up and keep fighting. I will pray and trust in God that the right program is just around the corner. God give me strength!
The Reality Is
As a special needs mom, you have to make decisions for your child their whole life. How does one know when that decision is right or wrong? All of these decisions are shaping the course of their life, and this is a lot of responsibility. It’s one thing to make a wrong choice for ourselves, but for somebody else, it’s a whole different pressure.
Right now, every decision I have ever made is being rerun in my head. Maybe I didn’t do enough … maybe what I thought I was doing was good enough, but I could have done so much more. Did I get too tired?
This is just another page in the life of a special needs mom. Do you have any idea how hard this is? I am not even sure I do; I try not to dwell about it too much until reality smacks me in the face… like right now. This is a reality check that I don’t think I am ready for. Do you remember the story I wrote about the fight for special needs housing? That will be here before I know it.
I pray God gives me strength and the wisdom to make the correct decisions for my son’s future.
Read the follow-up to this story here.
Much Love and Prayers to all the parents out there who share different levels of these same fears with me – some easier and some harder – I feel you, I see you and sending you hugs.
Sandy
#enlighten #empower #inspire #educate with a reminder to always #BeKind and a desire to #keepitreal.
Hi Sandy, thank you for sharing your inner struggle with us. As I read your post, I realized that we moms all ask ourselves the same questions, forever, regardless of our children’s abilities. Our job is to encourage them to be their best selves; to motivate and inspire them, and to do what’s in our power to help them along the road to their dreams. But we all wonder sometimes, are we driving them too hard? Are we not pushing them hard enough? Are we setting unrealistic expectations? Are we crossing lines we shouldn’t? To me, the fact that we ask ourselves these questions, are never satisfied with our efforts, and continue to second guess every choice we make, means that we are just being the best moms we can be. No one can ask any more.
We need to try to accept that our best is good enough – and find peace with ourselves, for our children’s sake as well as our own. Easier said than done, for sure.
I love your posts. Thanks again for sharing this with us.
Joan Senio
My Best Friend Adeline
https://kindness-compassion-and-coaching.com
Thank you, Joan! I would have said the same thing, that if you are second guessing yourself, you are doing a great job! Sometimes we just need to listen to our own advice but we don’t – we have to hear it from somebody else. I am still second guess decisions about one of my adult children! xoxo
You are a wonderful Mom, if you need proof re-read your blog as it’s all there for anyone to see. I hope Joe gets to do whatever his heart desires, or at least a good proportion of it as I suppose that’s all any of us are likely to hope for in life.
Try not to worry about whether you are guiding him in the right or wrong direction, he can always turn around later and take a new route if things don’t work out because of the seeds of resilience and self-confidence you have already helped him to sow in himself, and they will grow each day.
Turning 18 is a milestone, not the end of a journey. He has his whole life to flourish, and with your unwavering advocacy, and love, I have no doubt he absolutely will. xx
Thank you for all those kind words! I know I am a good mom and realize after so many messages, that I lost sight of my faith and the things I preach about. I needed a reminder. I don’t usually let people get to me like that anymore, but it has been a long year! Just this past week, I found a program that he was accepted to and will be writing about it. A lot of response came out of it with recommendations that I can now forward on to other people who need help. I miss you – You are one of my favorite bloggers! I hope you write something soon. I even went looking a couple of weeks ago! xoxo
It really is so hard. My stepson finished up job training/life skills via a free gov’t program here in our state back in March. It’s a long story, but the folks supposed to be helping him with job placement are not and him trying on his own isn’t going well. Interviewers don’t understand his disability or his abilities from an online test that he struggles to comprehend. Doesn’t mean he can’t do the job.
Anyway, I feel your pain. It’s hard to know what the right thing is for someone else. But I also don’t think there is anything wrong with some of the jobs you mentioned stereotypical of those with Downs. Someone has to do it, and it could be a stepping stone for him.
Pray and keep.an open mind. The right thing will come along for both of our boys in God’s perfect timing.
Hi Nicole! It has been a few months of this but I did find a program this week that I am hoping will be it! It’s one of a kind and I am hoping it will work. I want education and tech skills/job search and found on a local community college that is a well-kept secret. I lost my focus for a bit knowing that God has a plan and the answers would come but lots of people reminded me – this weeks blog. Do they have Project Search out there? They have then all over and seem to be a great place. Can’t wait to read your new blog! heading there right now. xoxo
What does God want to do with Joey’s life?
I know … I have to keep it in perspective. I have to be patient and see. I got the message from some of the responses but also see that others have it so much worse.
No one else felt their first heartbeat. Our heart & theirs beating in one body, our’s. Listen to your heart Sandy. Wish I knew the magic words to say to you. My problems seem so small compared to what you are feeling. Please keep strong. In my prayers with love.
Lorraine
Your problems are huge compared to mine – Thank you for that perspective. My son will be happy no matter what as that is his nature. It’s me that needs to think about that. It’s me being a mama bear. YOU are in my prayers. xo
Stop doubting yourself. Your a strong woman & want nothing less then the best for your children. They don’t come with instructions, we use our hearts to guide us, we’re moms. I have two son’s. One is 52 & the other 44. They both have never married. Their love is drugs. The oldest was in Federal Prison (last time) for 10 yrs. They have both on & off had their own places, but always wind up back home eventually. The oldest got a Union job when he got out & accumulated a beautiful home & all the toys he loves, Jet Ski’s etc. After he slipped up again he lost it all & was in the street. They are both with me now. It’s not easy being around them when they are both in denial. Can’t even hint it to them, one gets violent. To keep peace, I live with my heart breaking every day. They are also a help to me since my husband has Dementia. Can’t luve with or without both of them at this point in my life. We are just mom’s is what I’m trying to say Sandy. Am I enabling them? Sure I am. Do I feel wrong & beat myself up? Yes. What I know for sure is how much I love them. The tough love sent them to the people they shouldn’t be with & to jail. Did they learn? No. So what is right? Follow your heart Sandy with God’s plan & in God’s time, everything will be good. Keep your strength, faith, & love in your family. If anyone can do it, I believe tou can. Your words have helped me, I hope maybe mine will help you in some way. We are mom’s!! Mom upside down spells what???
Love ya girl,
Lorraine 🙏💖🙏💖
WOW! oh gosh, Lorraine. I don’t even know what to say. I am so sorry for all your pain. Being a mom never ends and you are right, who knows what the right answer is. I do keep believing God has a plan and maybe it isn’t mine but on the other hand, I keep thinking every one of these programs, is the one because he is sending me there. Or maybe he is sending me there so I can help facilitate change. I do have to be patient and see. So yes – your words did help! I knew you had a lot going on but I didn’t know about all that – I want to talk about you so I am going to email you. Love you too! xoxo
This is so very hard, Sandy. I read this very early this morning. I didn’t know what to say then, and I still do not know what to say now. I do not think you should rerun every decision. You have always been making the decisions with confidence in him and him being his best. That is what you needed to do. Don’t rerun them or doubt them.
When I worked in schools, I always had a hard time with our special education system. There was definitely and underestimation of some of the students with special needs. There is also a lot of pressure on the special education department with little support. So many students slip by and many others slip through. The line is terribly hard to see how to guide and make decisions for students like Joey.
When would he have to take the test by? Do you have time to give him preparation for it? The thing I know about assessments are they mostly tend to be a game. Some students know how to do the assessment game. Most special needs students do not know this game.
Anyway, I am so sorry about the emphasis on “does” you received. I can just see that happening. I wish I had an answer for you how to decide. I too will join in praying with you for guidance and opportunity to see what is next for Joey.
Hi Erin! You know when you are a Mom, you are more emotionally invested, so it’s hard not to second guess yourself. He has gotten a good education so far with a lot of fight, but now the floor drops out from under. He is the first and only kid with DS to stay in district. The whole IEP thing is silly because there isn’t enough support in the programs for the kids to get the individual help they need. When we do our school budgets, very little actually goes towards education and the system needs an overhaul. This has been going on for a few months, but this week was particularly hard. Many people have been lovely, but Joe would be going from least restrictive back to self-contained. It doesn’t make sense. I could prepare him and I have no doubt he would be ok taking the test, but they don’t want him there. I could have written 10 pages on this process as I was not prepared through my school for this either, but that can be a whole other blog about the process itself. I am seeing a couple more this week – I want to be hopeful! Thanks, Erin – I will be reporting back. xoxo
Oh gosh Sandy I’m so sorry. This must be so hard for you! Shit I stress wondering what my kids are going to do after high school so I can only imagine how tough this is. All I know is you will eventually figure it out whether or not the outcome is exactly what you’ve expected. I truly feel all that matters is if Joey is happy and is fulfilled in life. And I truly believe things happen for a reason so who knows what’s ahead for him! Things always work out one way or another! Love you guys so much xoxo
So ridiculous – you know me, I have a hard time settling for second best. I demand and expect a lot from my kids because it’s not easy to survive out there, but you have to. It’s even harder for him – these kids deserve more. Love you, Annie!
I think you are doing exactly what every parent does for their child. You have hopes and dreams for Joe.
I don’t have a child with special needs, so I can’t speak directly to what you are going through, but I would say that any job that provides an income for Joe is a good first step.
Sending you love and light. ❤️
Hi Susan! These kids are so underestimated and I want he and all his friends to have more opportunities to learn and continue being educated to broaden their opportunities. I want so much!!! Miss you, Susan. xoxo
OMG Sandy, I am sitting here with tears rolling down my face!!! I can’t imagine how difficult this is. Please don’t second guess your decisions thus far, you are incredible!!!! You are THE BEST Mom for Joey! He is so blessed to have his beautiful family, especially YOU! Joey is an incredible young man and it’s impossible for these people to know that after just meeting him for a brief time. Have you read this on the NDSS site… “NDSS believes in the importance of expanding high-quality transition and postsecondary opportunities for people with Down syndrome and other intellectual disabilities. All students should have access to postsecondary education, and the resulting employment and independent living opportunities. Studies have shown that students with intellectual disabilities (including Down syndrome) who participate in postsecondary education are more likely to excel in academics and employment and achieve greater levels of independence.” Have you already tried contacting NDSS for help or suggestions? What about WCC’s Disability services? Have you had an opportunity to look into that? https://www.sunywcc.edu/student-services/disability-services/ If you need help, suggestions or just a sympathetic ear, please don’t hesitate to reach out to me! I MIGHT have access to some resources you have not encountered… let me know if you need my help! xoxoxoxoxoxoxoxo
Hi Angela! I believe the same things. These kids are so underestimated with what they can do. I will look at NDSS, but the bottom line is that they have to be programs that are state approved. I am going to WCC to look at a program this week, but it’s not the one you have here. That is not something appropriate for Joe. The one I am seeing sounds great, but there are a few monkey wrenches. Too much to write here, but I will let you know after I see it. Thanks so much for all this info, Angela! This will also be so helpful to anyone else reading this!! I love the responses and why I do this – for enlightenment and awareness! THANK YOU!! xoxo