Gillian Marchenko

March Home Staging, Jooniper Design, Author & Speaker

What to do with a severe and profound label for my daughter with Down syndrome?

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What to do with a severe and profound label for my daughter with Down syndrome?

I am immobile this morning.

It happens with me, what with my struggle with depression, parenthood in general, kids with special needs, pre-teens with attitudes, hang nails, you know, big stuff.

Sergei and I had a an eligibility meeting a few days ago with our daughter Evie’s (6 years old, Down syndrome, adopted from Ukraine) school regarding her services and placement. 2 hours 15 minutes later, we left with a promise to reconvene in two weeks, and somehow I feel like I got in a fist fight (usually do after IEPs).

Evie tested in the severe range of disability globally for her three-year re-evaluation. Her team at the school suggest we place her in a severe and profound classroom, so Sergei and I are researching here in Chicago with plans to visit schools. I don’t want her in a severe classroom, but I also don’t want her to get lost in a moderate classroom (where she’s been, and she does get lost a bit). The psychiatrist said it was difficult to test her because she wouldn’t do, well, anything.

I seriously don’t know what to do … And having the severity of her delay on paper is knocking the wind out of my sails, even though I knew it already.

Bad timing to feel like I am losing my voice when I need to speak on her behalf.

So, what should I do?

Well, I know there are a few things I MUST do:

1) Pray. I am a person of faith, so I should take this conundrum and all the emotion and questions wrapped up in it and place it at God’s doorstep.

2) Research the severe label and visit severe and profound classrooms in the city to see for myself if this setting would be a good fit for Evie.

3) Let myself grieve the news. You can’t get above, below, or around this kind of stuff. You have to go through it.

4) Spend time with Evangeline. At the end of the day, she is still the same little girl I know and love … so I’ll focus on her, and thank God for her, and put the papers away, at least for a little while.

What do you do when dealing with difficult news? Any of you have a child in the severe and profound disability range?

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42 comments found

  3. I have a son with DS, I dont know yet his disability level, i dont know if he will be able to talk or do things as the other kids, i was worry about my son, i cried, i got desperate but some day God spoke to me these words. Love your son, take care him, enjoy all he is …….. I will back soon. after that all my worries gone.

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  4. Wow, that sounds like a few of the posts I’ve written about my 6 year old son with Down Syndrome who needs motivators to do anything (makes sense, you’d think teachers of special Ed would identify these solutions for school psychiatrists) but after being in an inclusive environment since he was 9 months old, it seemed we were taking a backwards step towards the dark ages. As first grade approached, his IEP showed stagnant goals and an unmotivated team to meet his needs. Long story short, I’m doing something that I never thought I would until I can find a better alternative. Cover your mouth, you might scream when I mention Home School! Me, the Mom with crazy mismatched socks and lucky to get a swipe of lipgloss on before walking out the door. I prayed, this was his answer. These boxes, the ones that have to be checked and regulated to fit our child inside are becoming smaller. So is the word POSSIBILITY. Do you remember that Sunday School song, I Am A Promise, I am a Possibility? Well, I started humming that song to him when he snuggled into my chest all those 6 years ago. It’s not the only way out, we have sought out other respite choices that aren’t school related. I fight depression, and realize that it’s a season and so is a child’s potential. I see you, I’m in here too. I salute you Mommy Hero!

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  5. I have a severe and profound level child – though not with DS; my son has other chromosomal problems. I live in UK so the system is a bit different to US, but it is a hard thing to hear. But always remember, a label is just a label – it isn’t a child. Your child is still the same child that they were the hour before you were told that they were S&P; the label has changed – the child hasn’t. And maybe you can use that new label to get extra help and support. Hugs and prayers. Annie

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  6. You are right about the grieving–you just have to push through it. Then get a look at the schools–there may be more out there than you know.

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  7. Praying for peace and comfort as you grieve. Evie is so blessed to have you guys, and you are blessed to have her. God will make a way. “He Can Move the Mountains.” 😉 Love you!

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  9. I would get an Independent Educational Evaluation before I made any further moves. It could be that the school team is underestimating your daughter’s abilities because they don’t know how to reach her. My daughter’s IQ tested at 35 at one point but I never gave up on her, included her with typical peers as much as possible, demanded robust IEP goals, and now at age 20 she is reading at a second grade level, holding full conversations, taking care of all her personal needs, and all the other things nobody with a 35 IQ could reasonably be doing. The measurements aren’t always right! I haven’t retested her IQ but she’s considered mild to moderate now. In terms of coping with the news, though, you are quite right – let yourself grieve, pray, and spend time with Evie so you can remember that she is still your own wonderful girl.

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  11. I feel like I’ve spent the last two years grieving things that I knew in my heart were true about Oksana, yet seeing them on paper was still hard. Whether it was medical, educational, or psychological, none of it has been a surprise and yet none of it has been easy. I’ll pray for wisdom for you as I’m praying it for myself as well.

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  12. Donna Marie goes to a school with severely disabled children and isn’t mainstreamed. I couldn’t be happier. She is happy and really shines. She gets such good care. She would be lost in our school district. Outside of school, she takes private Tae Kwon Do lessons and I am pleasantly surprised at how well she is doing with that. She also has a typical brother one year younger than herself and gets exposed to his friends, etc. Personally, I have followed what the “experts” recommend for her because I feel they truly have her best interests at heart. It would be great if she could be mainstreamed, but she would not do well. I KNOW this. This is my experience. Everybody is different. It’s all good. Listen to them with an open mind. Go with your gut.

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  13. HATE labels. HATE them. I always try to focus on the positive and those evals are the exact opposite. And, of course, all of these assessments re made for typical kids and our kids are anything but typical. Please do let yourself grieve–it’s an important part of the process.

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  14. I can only imagine how hard that must be to hear as a parent, but I also want to remind you that it’s not the end all be all. Sure, it MIGHT mean that Evie won’t be able to do as many things as “normal” people, but it also doesn’t mean she won’t be able to lead a happy and fulfilling life. Evie will be whoever God made her to be, and no matter what that means on paper, she is still his creation and is made in his image.
    Now I’ve never been on the parent’s side of things, so I’m only playing devil’s advocate here, but as a teacher who has been both a special educator and is currently a general educator, and has only taught in classrooms that have included children with special needs, don’t be quick to dismiss the idea of a serve-profound classroom as being a good fit for Evie simply because of the stigma attached. My classroom has been home to quite a few children with an IEP who, in all honesty, do not belong there, and suffer because their parents refuse to accept the idea that a self-contained special education classroom might be the best fit for them. So instead their child struggles, becomes discouraged, and sometimes shuts down. As hard as I try to serve them, there is only so much of me to go around and my heart breaks for them. I want them to be successful, but my classroom is just not a place where I can provide for them on the level they need. When you begin to look at severe classrooms, I would really recommend trying to remove your feelings from the equation and instead place yourself in Evie’s shoes. Would SHE feel more successful in that kind of classroom? If the answer is yes, then it just might be what she needs. I often find parents get so caught up in their own feelings and what THEY want, they forget to include their child’s feelings and needs into the equation.
    Thoughts and prayers during this pit stop on your journey. 🙂

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  15. My daughter, Caelia has the label severe to profound. She has Ds. She has apraxia, she tries but she still has trouble getting to the potty on time and did I mention the Ds? It hurt horribly when i was told. But here’s what I have learned 5 years later. Caelia hates tests, pretty much refuses to cooperate with anything she figures out is a test. She sat and told the teacher no to every question and refused to say anything else during her exam. She doesn’t give a rats butt what they want if it’s not her plan. Here’s what she can do with that dx: she can make snacks, use the microwave, read, add and subtract, reinact the entire movie the avengers. She is in a class with typical children for science and history and can answer questions about what they are studying if given multiple choices (she has to answer with pictures so that everyone can understand her but we can usually understand her at home). She really likes experiments. She makes her bed, can dress herself and escape just about any kind of lock or latch, none of which matches that label. Those tests are wretchedly inaccurate for most kids with Ds in my opinion. The bottom line is that your baby will amaze you and them if you believe in her. Check out the classrooms and decide if it’s a good fit but if you don’t agree, ask for more accommodations or other solutions to help her succeed. Sometimes it’s just a matter of finding the right teacher. Good luck.

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  16. My Jillian is functioning at a severe level of delay. I went through ALL the stages of grief, fought all the IEP battles, argued labels, blamed the professionals, and struggled with the depression, denial,etc.. Jill was included in a regular kindergarten class for 3 years, an autistic support class for 2 years, a multiple disabilities support class for 1 year and finally when she was 10, we placed her in a private Catholic special education day school, in their moderate/severe class. Jillian has never been happier and continues to make progress. She loves school! She nolonger sturggles as the ‘lowest functining child’ trying to learn in an environment that was teaching ‘above’ her.She is being taught what SHE needs to learn! She is accepted for who she is and her goals have been appropriate to improve the quality of her life and her ability to actively participate at her level in all activities. She goes bowling, swimming, school dances, a teen cafe, THE PROM, received the Sacraments and participates in a Christmas pagent every year, all at her level. She’s accepted for what she can do NOT what she can’t. She is so happy! And at age 20 she has finally been diagnosed with a syndrome, Mowat-Wilson and I now have answers to her complex issues. And it’s all finally okay. And it will eventually be for you too. You did an awesome thing by adopting little Miss Evie, don’t ever forget that. My advice is to accept a program placement where she can be accepted,have success and be happy. Constantly struggling in a program/class that is beyond her ability, would be frustrating. You will be surprised in what Evie will do once in a supportive environment with activities planned approrpiately for her level of skills! I saw it in Jill and you will see it in Evie too!

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  17. I’ve been a teacher of “moderate to profound” kids. It was always painful for me to deliver such a label to parents and hated doing it. Sadly, it isn’t painful for others. Your daughter is so young, it is difficult an to get an accurate diagnosis. You know your daughter better than anyone. Trust your instincts. Find an advocate for you to attend IEP meetings with you. You have no idea how much an advocate will help you. Seek out services in your local county or nearby University. If you feel she needs to be placed in a higher functioning classroom, request a personal para. They may refuse but it is worth requesting. This would help your daughter immensely. You HAVE to be assertive to get what is needed sometimes (sad but true). Please don’t be downhearted, ignore the label, trust your instincts and find a support group of other parents who also have special needs kids. —-Just some thoughts. Sending prayers.

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  18. You and Sergei did a tremendous thing when you took Evie from the orphanage and made her your family! She is yours’ and you are hers’ and that is the most important thing! School will fall into place. Evie has you and her sisters, love and a place in your family. That will never change. Am praying for you!
    Ellie

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  19. For me, I guess it’s important to realize that school isn’t the only thing in my daughter’s life. I think about kids who are homeschooled and do amazing things, and try to supplement my daughter’s special education with things that interest and motivate her. She doesn’t have a social studies class or English class at school because obviously she’s not going to be going to college so why would she need those things?! I was upset about this at first, but then I decided that she could learn about the world – and learn some English – in other ways. I hired a tutor who knows sign language to come once a week. They go over articles in the kids’ section of the newspaper together. I keep my daughter supplied with books. I remind myself that the future is not set in stone, and try to provide opportunities for her and keep my mind open. It’s hard, I know. But there is no one person who can predict what our daughters will become.

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  20. I have a 13 year old son with Down syndrome (we live in the northwest suburbs of Chicago). I really don’t like the testing and IEP’s because they are focused on what our kids can’t do and all the areas they fall short. I know that our kids always look worse on paper, and that is so hard to see. But we know better! They are so much more than the tests. A test doesn’t measure their value and their true potential. Josh doesn’t like those tests either and we all know that the only thing consistent about kids with Ds is their inconsistency. Joshua amazes me everyday as I’m sure Evie amazes you. When Joshua was little, I desperately wanted someone to tell me if he will be low or high functioning as he grows up, but I realize that what matters is that he is happy and learning new things each day. He won’t be a Rocket Scientist, but neither will my other kids!
    The grieving is a continual process and I too battle depression. But I am confident that God has given me a very special gift named Joshua. He has touched so many lives in his short 13 years.
    Evie is blessed to have you as her loving mother! Remember through your grief process that it is only a piece of paper and you know the real Evie.
    Teri

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  21. Hi Gillian it’s Jenna. I happened across this and just wanted to tell you to keep fighting! You are protected under your parental rights so read over that paper work and research the placement options. I agree with the woman above who said to look into an independent evaluation. Let me know if you need any help with anything. Since I don’t work for CPS I don’t know much about their programs but do know about IEPs and how to properly place students. Remember by law they have to place in the LEAST RESTRICTIVE ENVIRONMENT.

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  22. This is so hard to hear I know. I hope that when they test her they are factoring in her adoption/birth journey since certainly if she lacked EI and other stimulation for the first 3 years than she would be expected to be on a different growth and development curve anyway, even if she did not have DS. Remember all of the positive opportunities she has now that she did not have if you had not found her…. I know that you are religious but my gut response is f… em, those scales do not measure happiness.

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  24. Great reminder to just spend time with your child. It is so easy to get focused on what we think is best for the child that we forget how much they need our time, attention, and love.

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  25. Gillian, I was told to read your blog by a friend of mine (who just so happens to be a very close friend of yours). I have a seven year old son with Autism. We just got our second diagnosis due to a an IEE as a result of his being denied special education in Kindergarten. I had to pull him six months into Kindergarten last year because of they way they treated him and the denial of his disability – it caused him severe anxiety and behavior issues. Almost a year later of attempting to home school, hiring an attorney to guide us through fighting to get the special education our son needs and dealing with him with little to no professional help, I am exhausted. Our new diagnosis is still Autism. However, the news is not as simple (is a diagnosis of a disability ever?) this time; a requirement of intensive ABA therapy, Occupational Therapy and then a possible eventual return to an emotionally impaired or Autism classroom has slapped me across the face so forcefully that I have yet to get up. All this for a child we were told was mild and would function in a general ed classroom with minimal assistance. The depression has hit and I am overwhelmed with emotions that I am trying to sort through and overcome every day – and yes, I am mourning – for what I am not sure. Please know that you are not alone. There are many of us out here advocating for our children and suffering through the same emotions and setbacks that your are. We may not all be parents of Downs Syndrome children, but disability is disability and it is hard – whatever form it takes. You are an inspiration to me. God bless you and your family.

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  26. I am a Severe Profound teacher and blessed to be in my class. Do not let a label worry you. She has to have a disability ruling to access special education. That does not define who she is or what she will do. And she WILL do. My students go to art,library,music, and PE with higher functioning students. We eat and learn in the class. We go on field trips and all school functions. My students are the most severely disabled in the district, both physically and cognitively. There are other “self-contained” classes in my school that have higher functioning students, including a DS child. In fact, we have several leveled SC classes, each more involved in reg. ed than the one below. Make sure that your daughter is in a class that meets her needs. All SPED decisions are a TEAM decision. You have a voice. Make sure her teacher contacts you frequently. I talk to all my parents several times a week. You have the right to get copies of all of her evaluations and IEP, but it may cost. A daily parent-teacher log, that both write in, is a good communication tool. Communication is most important. If something helps her at home, let the teacher know. And the other way around. Make sure the teacher is working daily on academic and functional skills. Never stop believing and praying.

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