My eight year old is my onion boy. He's a smart, loving, hard-working boy who has significant challenges in just about every area. Sensory, visual, speech, etc.
So I take him in for various evaluations. And he's evaluated. And he comes back testing below the first percentile. Or at the 2nd percentile. Or something like that. And I have several conflicting emotional reactions:
Validation. No, this is not my imagination nor my parenting. He is really significantly impaired. I am a good parent for him and I am getting him the help he needs.
Pride and respect for him. He doesn't read well, but given the severity of his speech and language problems, it is astonishing he can read at all. Coordination is challenging for him, yet he's mastered a bike.
And.....sorrow? Embarrassment? Grief? Fear? Exhaustion? I'm not sure what to call it. It hurts to see my child testing so low. It hurts when there are so few areas in which he excels in a measurable way. It hurts that our educational plan for him consists largely of moving him past barriers that don't exist for most kids. It hurts that people who don't know how to look past those barriers judge him as stupid or lazy or careless or rude. It hurts that he has to work so very, very, very hard to achieve a level of functioning that comes easily to children four years younger than him. I'm not even sure how much I'm hurting for him and how much I'm hurting for me.
Anyone else have this experience? What are your thoughts? Thanks.
Thanks everybody. Fortunately, I was philosophically committed to homeschooling before he was born, so we've never had to go through the school system. Assessments and evaluations happen on my terms for areas that are a genuine problem for him, not areas where our family culture is just outside the norm.
For example, his earlier challenges with gender pronouns probably had less to do with his speech problems and more to do with the fact that no one in his life gets deeply offended if someone grabs the wrong pronoun. He had trouble with the question "why do we wear shoes?" because he usually doesn't. After some pondering, I think he came back with the answer "because we are getting on the bus," which actually makes perfect sense for anyone observing his life. These are family culture things I can explain to a independent evaluator much easier than a school administrator.
He does have areas of strength and I do honor them. His sense of direction is amazing and he loves maps. If I am lost, I ask him for directions. He can usually get us un-lost. His memory is terrific. He's a great bike rider. He has a level of common sense and practical problem-solving that exceeds that of many adults. Because he is homeschooling, he's never had to spend an extended time in an environment where everyone else can function and he can't. He knows there are things that are extra-hard for him compared to some other people, but he has no idea that he's 3-4 years behind the academic norms for his age. As a result, he's not discouraged and he's happily and cheerfully working at his own pace, delighted in learning. When there's a new skill he's trying to learn, he'll literally drill himself for hours to master it. It's working. His areas of skill are expanding. I do believe he will do well as an adult. Hurrah for homeschooling!
What we're doing is working. It's exhausting and expensive, but investing in him now is far more sensible than saving for college. I have the energy, I have the skills, I have the time, I have the financial resources, and I have the strength of character to blow off the judgemental people. He'll be okay.
I guess a lot of the grief and fear comes from my question of "what if none of those things were true?" I think about what would have happened to him in some other families, where all behavior challenges are assumed to be a disciplinary issue. Or families without the financial resources to get him the help he needs. Or families who would call him "broken" and make his life an endess series of drills in his area of greatest weakness. My youngest daughter would thrive in any basically adequate environment. My son would likely suffer and fail in many environments that would be considered excellent by any standard measure.
I listen to political debates on "holding teachers accountable for student performance" and I wonder what exactly that would mean for my son if he was in public schools. His test scores would bring down the rating for the school, dramatically so. This would leave a hard-working teacher to punished for something that is completely outside her control. How could a school *not* resent a child who is making them look so bad? And how could he *not* feel guilty for failing to support his school through academic success? And how could this combination of pressure and resentment and guilt possibly result in anything good for the child, the parents, the teacher, or wider society?
My son is not the only kid who struggles like this. I wouldn't trade him for any other kid. He's pretty awesome and I believe his strengths are will be vital to the community at large. Society needs kids like him who have gotten what they need and grow up to share all their strengths with the world. His challenges have given him a unique perspective that matters, not just to him but to everybody.
But mainstream society would label him defective and throw him out. I am able to protect my son and give him what he needs to thrive. But what about all the other kids like him? What are we losing every day?
Thanks again for your thoughts and support.
I don't have this experience. You sound like a strong, loving mom. Is there a support group you could join? Do you know any parents facing similar challenges that you can talk with? I hope someone on here can relate and help you sort through it all.
Here's the glory of it being "your fault":
If it's your fault, you can fix it. You stop doing something, or start doing something, or add or subtract or, or, or, or.
When it's NOT your fault... you're stuck with it. So it's validating to see you were right, but CRUSHING to realize you were right.
That is; if you were me.
Other people also want it to be your fault. If it's your fault, they it can't happen to them. They can not do what you did, or not eat what you ate, or not live where you live or, any of the millions of possibilities "your fault" can mean. If someone is to "blame" they feel safe. Because they can just NOT do it. They stay in control. They can larn from your mistake. If there's no one to blame, then it could happen to anyone. Which means them. In fact, the words out of most people's mouth with sudden news is "Why??? But I __________." Hurt. Love. Fear. Guilt. Love.
Big hugs.
You get a lot less sleep with special needs kids, and you get a whole lotta flack.
Hugs are mandatory.
absolutely. My older son was diagnosed with a degenerative hip disease at age 6. He's 24 now & just hitting his 1 year anniv of his 1st hip replacement.
He's had a long, hard haul & many people did not see the struggle. Instead, it was the other dads saying, "why aren't you out on that football field?"....& my smart-mouthed son saying, "my hip, did you forget about my hip?". OMG, his mouth & his chip on his shoulder were astounding!
But, I totally understood how he felt....I wanted to slap those dads! They all saw my son living on crutches, an orthotic hip brace, the wheelchair....the body cast. They all knew he'd been thru multiple surgeries. They all knew his history.....& yet, their macho egos made them stupid & insensitive. Yep, I still feel angst over how stupid they were! & how it impacted my son.
I hated that the other moms were afraid to be responsible for him. They didn't invite him to bd parties, to sleepovers....because of their own baseless fears. My son was able to participate in Scouts & many other activities.....& yet they were afraid of his disability. & here's the kicker: we had many parties, many sleepovers, many events.....& they'd send their kids to our house! They knew what he was capable of....& yet still allowed their fears to limit themselves. How sad.
So, when you ask about validation, pride, respect, sorrow, & the whole bucketload of emotions which go hand-in-hand with being a parent of a child with disabilities......ABSOLUTELY! IT'S OKAY TO FEEL ALL OF THIS! It's part of the territory, it's part of the big picture! Accept your mixed emotions, let them be a part of you....& rejoice in those good days & those achievements which were so hard for him! It's okay to feel conflicted....
& I do have one more recommendation. Forget about those test scores. If you're a Type A personality, this will be hard for you. But.....once you accept your son as he is.....life will be easier. Applaud the good. Find answers for the challenges. I truly, truly wish you Peace....& feel free to contact me.....
Oh, hun. I do so understand how you feel. Every year I meet with my son's team at school for the yearly IEP evaluations and testings results. It is very important to understand where he stands. He gets evaluated for speech,language, comprehension,recall, behavior,sensory,motor skills,etc. He has about 6 different teachers/specialist who work with him and evaluate him. It can be extremely overwhelming to sit in this room with 7 teachers, and just you. Especially as they read off there findings, and give his percentage, and his barriers/strengths to each one. He is behind about two years in some areas from what other kids are for his age.
However, having been at this school since preschool, I am more comfortable, and know his teachers well. It helps to have a good working relationship with them, and to also express your concerns, as well as what you can do at home to help with making progress in those barriers.
I can remember when my son was 5, and would only be able to speak a couple words, maybe a sentence to describe something. Other kids made fun, or asked him how old he was, especially when they played and asked him questions. My son would say something that wasn't near what the kid was asking him. Same with adults. However, I never let it show that it upset me. My son never noticed either. He just kept on smiling .
What helps me when I go through his IEP plan, is I read the strengths first. I as a parent, already know what his strengths are, and at times when in meetings, I inform the teachers of what they see as barriers at school, I don't see at home. For example : My son has a hard time communicating at school, especially if their is a problem or situation that happens. He just cries and isn't able to tell them what happened. When he gets home, he starts to cry, and informs me what happened. Usually it is a miscommunication, and I write the teacher and let them know what he told me.
Or this one ( for his 7 year evaluation) : During the evaluation, the psychologist told me that when they asked my son"-what would you do if a neighbor's house was on fire"? My son replied, " I would put the fire out ". They saw this as a wrong answer, stating that " most kids would say to call 911..Anyways, for my husband, he spoke up and said " that's my boy" he thought it was a great answer. He told them that our son wants to be a police officer/fire fighter when he grows up, so his response makes sense. The teachers all looked at him, no comments..
You have to take everything with a grain of salt. Sometimes it can be very scary to see the poor results, percentages. I keep telling myself that each year those percentages go up ( they do ) and each year he is making progress. It might be slower then most kids, but for my son -it works.
What helped me is to find a strength and run with it. Build with it, and use it to help the weaker areas. If you need any help, I would be happy to offer you some suggestions that have worked for me, both in helping my son, as well as helping myself.
It's grief. For many of the families I have worked with as both a psychologist and a special education administrator they experience a profound grief over the loss of the child they dreamed they would have. One of the most powerful lessons that I learned in graduate school is the value of allowing parents to safely feel this loss without feeling judged.
You will go through all of the stages of death and grieving... denial, anger, bargaining, depression and finally acceptance. It is normal and it is okay... just remember that you must get to "acceptance" so that you and your son can move forward.
Your son will achieve his own goals. Celebrate them and try to resist the urge to compare him to other children. Remember that statistically your son is part of less than 15% of the population. It's not fair to him or you to compare him to his chronological peers. Compare him to himself. Look at his individual rate of progress- become friendly with the school psychologist. He/She will be your best ally with respect to testing and score interpretation. Push him. Challenge him. Do not enable him and do not make excuses for him.
There are naive and small-minded people in this world who will think that your son is lazy or rude. When you encounter them, educate them and then move on.
I don't have similar experience, but I wanted to let you know that I think you are an extraordinary mom. I can tell you deeply love your child and that you are also very sad for the struggles that he has faced and will continue to face. I also think that is is very important for you to process all of your conflicting feelings about this. He sounds like a wonderful son.
I had tears in my eyes reading your post as I can relate. Our road started when my son wasn't talking - or understanding - and we started speech therapy, we saw other issues, started developmental therapy, other issues, occupational therapy. The one place I felt comfortable was in the waiting rooms of these therapies as it felt it was the only place I wasn't judged - that everyone in there actually understood and was going through the same thing. It hurts to know that what comes naturally to many children your child has to work extremely hard just to try do.
When we go for annual evaluations I've found extreme happiness and pride in seeing where my son has progressed in one year and I try to focus on that.
I've started developing a thick skin as well for those who don't understand and judge me as a parent or, as you said, your child being lazy/careless/rude.........
Hugs to you!!
I don't have any advice, but just wanted to say that I'm sorry that you have to face these challenges, and I think you sound like a pretty fantastic mother to your son! And he sure sounds like a great kid! You are doing something right if he can keep going and not become discouraged after experiencing setbacks. THAT is pretty advanced and a very unusual trait for a boy his age. I have an almost-9 year old girl who is extremely coordinated, and just learned to ride a bike last week. Yes, really. Mostly because she would become discouraged and give up! You know what they say - nine tenths of the battle is showing up every morning. Your son is doing that, and you are teaching him the skills he'll need to keep on doing it. It might take him longer, but he will reach his goals.
Think of all the great figures in history who have had significant challenges developmentally. Bill Gates is on the autism spectrum and built one of the biggest tech companies on earth, Alexander Graham Bell was dyslexic and invented the telephone. What helped set them on a path of greatness was the ability to keep trying even when they were frustrated. Most kids don't have that. Your son does. Mama, you are doing a GREAT job in helping him shine in this way. Maybe people don't recognize it yet, but someday your and his hard work will pay off.
My second child did not see the world through the sexist eyes of the test and so she scored low. I did not worry or childe her I went to school and showed them what was wrong with the test. As an educated mother I knew test scores are culturally based.
My daughter did not communicate well and so when she did not read in 5th grade I found a summer school with a wonderful reading teacher. She read within six weeks. She also learned to speak her mind that same summer. Yes she had learning problems which she overcame and is a university graduate.
Just keep going and get him an instrument to learn music on. Pick one he likes and let him develop as he can. The ability to learn music improves all other scholastic skills from math to reading. He will develop he's just slower than other kids.
Hi Karen-
BIG HUGS to you!!
I hate HATE standardized tests of ANY kind...And I hated them long before I had children! lol
I have a boatload of kids...practically a 'normal distribution' of my very own...and they score all over the 'bell curve'!
I try to 'meet my children' where THEY are...no matter what a particular test says.
Shannon is my most 'challenged' child (at least according to the tests...LOL). If one were to 'judge' her soley based on this type of evaluation...it would paint a very sad picture indeed. BUT she 'does' so many things that a 'test' cannot measure accurately (or at all!).
Take 'sense of humour' for example...a higher order skill that one would not suspect she would possess...yet she does...and it's a 'wicked' one...lol
In reality, my 'most' challenged child is my extraordinarily 'gifted' child...
I think my best advice...for parents of ANY kids...is to LOVE them. Celebrate what they CAN do...get assistance for what they struggle with...and love them as they ARE!
HUGE HUGS AGAIN!
michele/cat
What a wonderful post. You wrote so beautifully about your emotions that I actually felt them as my own. I'm crying a little now. Bless you and your sweet boy.
Remember that all of us with "normal" children never know what's in store for our children either. The brightest kids can get involved in drugs and their lives go down the tubes. An accident happens that changes everything. A perfectionist child develops an eating disorder. A regular kid goes through some tough emotional times, sinks into a depression and tries to committ suicide. Maybe nothing big happens but a "normal" child just isn't a happy teen or adult. Your son may turn out happier than lots of other kids and that's the ultimate goal - for our kids to be happy. Stay close to him and focus both of you on being happy with what he can accomplish. There's a security guard where I work who likely doesn't have a particularly high IQ. He's is SO cheerful and happy and friendly all the time that if he were my son, I'd be very proud. He likely is a lot happier than some of the cranky executives...
I do not have this experience, just want to validate you. I can only imagine the heartbreak and pride. Stay strong. What a beautiful heart all of you mamas have that have to go the extra mile. And what courageous and amazing spirits your little ones have!
Yes I have experienced this. My son is autistic and I remember going through the tests and being told my son is not good at this, and he has that behavior and on and on. There was a mourning process I had to go through because as a mother I have certain ideas of what my son's life is going to be like and then I had to realize it is going to be different. But I can honestly say now I would not change my son for all of the money in the world. I love him just the way he is. I think you are a great mom for seeing the great qualities your son has. You are doing a good job for getting him help where he needs it. He may have barriers other kids don't but he has great things about him that other kids don't have. You are a great mom for him and you should feel very proud. I know I do.
Do not ever let your child know your thoughts. He would be devastated to hear you have no hope. Let your child be himself. Stop pushing him and let him reach his own levels of achievement. It may change over time and throughout the years, but when you have ideas in your head of where he should be and he doesn't achieve those, you make yourself feel bad and your perceptions of your son and his abilities decrease. This is not good. Have no expectations, and when he has a milestone crossed you will be thrilled.
I find this society revolves around this mentality. Push your kids to the point of no return. In school the kids are not taught to learn - they are taught to pass the tests and in turn make the teacher look good and the school have 'the highest rated students, in our district.' Evident in the Atlanta scandal where teachers (many) fabricated tests scores, tampered with and changed kids grades so they could all look good. It disgusts me. That's why our country scores so low in comparison to the world's scores/students - our kids don't learn anything, its all about passing the test....
Don't have this mindset. Let your boy achieve on his terms, and be proud of him, always be supportive and let him know how happy you are not just about his achievements, but about what a great son he is. Think of all the other children out there in this world who do not have the opportunities your son will ever have. They are living in countries where they cannot gain an education, drink from puddles of bacteria filled water, have no food to eat, have nothing. Be happy for what you have.
You have stated this so eloquently. Yes on the validation, yes on the pride, yes on the negative feelings (grief). My son's learning disabilities are not of the same degree or scope of your son's challenges (he's just below 25th percentile in a few areas - low enough to keep his IEP but he's not functionally disabled) but yes, it still pains me years after his diagnosis to know that he puts in so much effort to yield so little by way of results.
Allow yourself some private time and space to grieve but also keep focusing on the positives. And for him to be scoring so low and be tested so late is a sign that you've been doing something right and he's one determined, gritty child. Both of those will help him to beat the odds of his diagnosis and achieve beyond the expectations of the typical person with similar test scores. Big hugs to you!
First you have the guilt, then the anger, and now you have to put on your "big girl" pants and be an advocate for your son. You are his coach, his person who is going to make sure he gets what he needs in school. Get an iep done, make sure it is followed, (they are suppose to, it's the law, but they don't), and make sure your son is having a happy positive life. Yes I know what you are going through, I have sons with add and adhd. You can't tell by looking at them, and their behavior sometimes looks like they are being a brat. But it is a disability, and it is not an easy road. Find the positives in your son and relish and take joy in them. Find other parents online or in your community that have children similar to yours. That way you can get ideas on what to do for your son, and not feel like you are the only one with a kid like this. And also, take breaks and give yourself some me time now and again.
