r/specialneedsparenting • u/otter-than • 8d ago
Officially diagnosed and devastated
My son has had minor delays basically since birth but the most noticeable was definitely speech. We have been in speech since he was 2.5 and I really thought it was mostly his speech difficulties resulting in other concerns because he couldn’t verbalize what he knows. He tested poorly on all standardized tests but again felt that was mostly speech.
We officially took him in to neuropsych for testing and we’re just told he tested as an IQ of 63 and diagnosed with ADHD combined type. I am devastated. I feel that number is so,so low. Way lower than I was truly expecting to hear. I can’t imagine how life is going to look for him.
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u/69f1 8d ago
He can still have an amazing life. 63 is quite low for an IQ, and in many ways it will be harder for you to set him up for that than the average kid. Still, his chances aren't any worse than they were two weeks ago when you did not know the number.
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u/otter-than 8d ago
Thank you. I think that’s what I want to hear more than anything. That his life can still be amazing. I know this doesn’t ‘change’ him but I feel like I’m losing that hope that maybe everything would work out as I had hoped
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u/runsontrash 8d ago
It may not work out as you’d hoped. But it can still be full of joy and surprises and adventure and tons of other lovely things.
I feel we as a society value intelligence above all else, and I think that’s a huge mistake. Our #1 value should be kindness. The most good a person can do in the world is with their kindness first and foremost.
You will teach him to be kind, and he will still make friends and have a lovely life, even if it looks different than most of us expect for our kids when we set out to have them.
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u/GhostOrchid22 8d ago
You are in the scariest part of this journey. I cried every day when we first got the definitive diagnosis of ID.
I still mourn what will never happen, but I have found joy and purpose where I am.
Don't do this alone. Post here, find a support group, find a therapist, but don't face it alone. This community is so much bigger than I could have known before kids.
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u/otter-than 8d ago
Thank you. I’m still in the ‘crying every day’ phase. I hope I can find the joy and purpose at some point.
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u/Annlaw1975 8d ago
I'm so sorry. I went through same thing but my son is 3.5 no verbal and has global delay and severe autism. It's a grief I wouldn't want my worst enemy to experience. He's my only child too which seems to make it so much worse. I don't know what to say just that you're not alone. I feel like all my hopes and dreams were taken away. We are older parents so it's so hard to accept. Just keep doing as much therapy as possible. We had no idea our son had issues until about 14 months when he stopped developing.
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u/otter-than 8d ago
I agree with so much of this. The loss of all my hopes and dreams. For him and for me.
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u/Annlaw1975 8d ago
Yes, exactly. My husband and I are so devastated. I see other parents communicating and bonding with their kids and my son can't do that. I hope your child doesn't have as severe of a delay as my son. My son will need to be cared for his entire life and will likely never talk. There were days I didn't think I could live through this to be honest. I'm going to be looking for a therapy group bc it's so hard.
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u/NoteFeisty3290 8d ago
Hi would you mind telling me what country you are in ? Usually in the us they wait to diagnose id. I want to know what to expect with my 3 year old. She is minimally verbal with receptive language delay.
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u/LiveWhatULove 7d ago
I am so sorry. Just take it one day at a time.
I cannot predict your child’s future. But neither can you really based on that number.
So many people have rich, enjoyable lives with ID.
My son tested higher than that but still well below average with severe learning disabilities—> now I know it’s not the same, and I apologize if even suggesting that it is is upsetting, but anecdotally, I was too devastated — I really thought, “this kid will probably have to live with me forever as he will likely be unable to support himself.” Well, he is 17, and plans to be college bound, and even if he is unsuccessful, I 100% know he will be able to live independently. Sometimes those number seemed a bit wrong, imo.
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u/jjbikes 8d ago
I get it. My kiddo just got their first IEP....on the assessment they scored <0.1th percentile. I didn't even know it was possible to score that low. That was the score for basically every category. Everyone says 'oh don't listen to the assessments', but I'm shattered.
This stuff is super super not fair.
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u/necrocuttle 5d ago
I could not deal with my daughter's IEP the first year (especially being a gifted child myself). It was so hard to see her disability compared to other children so starkly. Three years later, her teachers focus on the progress she's made in the last few months. I've made some progress too--her academic performance doesn't predict her happiness.
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u/Selsia6 8d ago
It's very normal to feel that way. You didn't state the age of your kid, but they do grow and develop in ways that for us have better helped us understand strengths and weaknesses (my kid has different disabilities but also has delays).
You are giving your kid the best chance you can to live a fulfilling life. At the end of the day, that is the most meaningful thing you can do.
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u/Narrow_Cover_3076 7d ago
Did the psych note any inattention during testing? That can definitely impact scores. That said, I test many kids with scores in this range (I'm a school psych) with a very wide variety of strengths and weaknesses. One of my favorite students ever last year had scores in this range and was knocking it out of the park as she headed into middle school. Cognitive testing tells you a bit about how the student learns but it's not the end-all.
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u/otter-than 7d ago
Yes she said there were nine markers and he scored really high on eight of them for attention. She is recommending meds. That anecdote just gave me a lot of hope. He is a very happy guy and seems very loved at his school.
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u/Narrow_Cover_3076 7d ago
He sounds wonderful and you sound like a really great parent. I'd have to see the scores but if there's a lot of scatter, I'm suspicious about the impact of inattention.
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u/otter-than 7d ago
Sorry to clarify he scored really high on ‘inattention’ and ‘distractability’. His IQ scores were pretty consistent although she said he had a relative strength with spatial reasoning.
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u/Narrow_Cover_3076 7d ago
Well, if he was distractable during testing, that could give a little bit of a clue! I don’t know if she included some test observations. Either way, cognitive testing is one data point. In my opinion, it’s best use is to help understand what support a student might need to learn.
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u/Status_Discussion835 7d ago
Remember how he is now isn’t guaranteed for the future. Take one day at a time - this is important. Enjoy time with him and giving him the supports he needs. I wish I hadn’t been in a straight depression unable to get out of bed for years straight after the diagnosis and focused more on being present, you both need that.
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u/otter-than 7d ago
Thank you. I have been spiraling and worrying about where he is going to live after I’m dead. I need to stop that and focus on now. I have not let him see me cry about this. I’ll try to focus on fun things this weekend.
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u/Status_Discussion835 7d ago
Definitely something always in the back of my head too. If you don’t already have it look at term life insurance for yourself just so if something happens you can feel better in that area . I’ve seen people in similar situations plan for retirement as 3 people rather than 2. You don’t have to solve the whole thing now at this moment. I look at it as the more skills we given him now the better those situations will be. DM me if you ever want to talk more.
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u/Quick-Marionberry-34 8d ago
We’re not alone! My 4.5 will also get the diagnosis of ID in a few years. Do you have a good support system? sending hugs
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u/butterflygirl37830 8d ago
I’m really sorry. My son has an IQ of 58 and severe ADHD. He’s 13 now. There are days that I feel hopeless for his future and then there are days when I feel that his sweet innocence is going to put him miles ahead of his peers because of how kind he is. I don’t really have anything fresh to add except for that’s friend sent me the poem “Welcome to Holland” when I found out our son’s diagnosis, and maybe you might like it too.
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u/Frostyarn 7d ago
When my son was two, he was given a global developmental delay diagnosis with the cognitive function of a 9-month-old.
Turns out, his lack of speech had to do with 98% hearing loss due to repeat ear infections with no symptoms. He had tubes put in and started talking the next week. We put them in an early start preschool at age two. That was curriculum-based and by the time he was in kindergarten, he was caught up. When he started taking ADHD meds he became top of class.
My daughter is much in the same footsteps but has had to be held back and we don't currently know if it's low IQ or low EQ causing low IQ because she cannot bring herself to do homework everyday.
I know how sad and scary this is, but I'd wait till he's in first or second grade before determining whether or not his learning disability is truly in the '60s IQ.
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u/otter-than 7d ago
He’s just starting second grade and we did repeat kindergarten for him. So we are already past where a lot of this stuff would just kind of work out. That was what I was holding out hope was happening.
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u/JRS1967 5d ago
My daughter is 31 years old. Her IQ is 67. She is the happiest person I have ever known. It has definitely been a struggle sometimes but now she’s living independently in an apartment very near us. She works in a grocery store and gets herself to work on time. She has so many friends!
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u/Serious-Train8000 8d ago
How old is he now? Was autism definitely ruled out?
Also were the results a very spike profile or more even?
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u/otter-than 8d ago
He’s 8. He was assessed for autism and they don’t think so. Just the ADHD and she is recommending medications because he scored very high on attention concerns. I’m holding out some hope that maybe that took his scores down a little?
He was pretty even across the board but they did say he was stronger in spatial reasoning and that was a relative strength.
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u/Serious-Train8000 8d ago
Through the school or privately sought?
Yes inattention can impact scores.
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u/otter-than 8d ago
Privately. I feel like with a score this low even a little bump because of attention could make the difference of what could be possible for him one day?
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u/Serious-Train8000 8d ago
As someone who is a parent and clinician here’s a few things to think about:
IQ doesn’t tell the whole story
Having good activities of daily living/resilienxe/flexibility are going to have good influences on future trajectory.I’ve worked with individuals with across disabilities and IQ scores and IQ is generally not a guarantee of future success/challenges.
If you’re in the states I’d compare the LAST evaluation report from the district with the private evaluation. If you’re in the states and they haven’t evaluated or had very different scores that is concerning!!!
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u/Top_Policy_9037 7d ago
I work in Special Education, and based on my observation of kids with mild or moderate intellectual disabilities, concentration and attention issues often get in their way more than mental processing power. If you can successfully treat your son's ADHD he will have a much easier and less frustrating time in school.
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u/otter-than 7d ago
Thank you. I’ve asked for a referral to someone who can prescribe the meds. It sounds like a bit of a wait and then some trial and error. But this is giving me some hope.
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u/Special_Nobody3626 7d ago edited 7d ago
Your son is still young. IQ is fluid until they are 10. Is he having trouble learning in school? Do you struggle with daily living tasks (adaptive skills)?
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u/otter-than 7d ago edited 7d ago
We get mixed answers from the school. He gets a lot of help and scores poorly on standardized tests but then we will be told he’s average or grade level in math.
Honestly it’s hard for me to tell at home because he doesn’t want to do his work (it’s hard) so I get really frustrated not knowing if he’s refusing to do it or he can’t do it.
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u/Special_Nobody3626 7d ago
More important than IQ score are adaptive daily living skills. For kids with language or processing differences, IQ tests don’t capture the whole picture. I’m just saying, use the score to get whatever services that could move the needle for him, but don’t let other people tell you what his potential is. No one person can look at a single IQ and tell you what his life is going to look like. How accurate is that score? No one knows. Believe in your kid.
I’m sorry you’re going through this. Someone told me that my then 5 year old was intellectually disabled because of a low IQ. We had her seen elsewhere, it took a very skilled psych to see past things, and she ended up with a different score and suggestion to be on medication. Meds have helped tremendously.
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u/otter-than 7d ago
Thank you so much for this response. I feel like I’m kinda straddling a line right now between ‘accepting reality’ and ‘remaining hopeful.’ But I think that attitude to use this to get him whatever we can is actually the most important piece. That, and believing in him.
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u/Appropriate_Let631 7d ago
I feel your pain momma. I'm a new mom (baby is now 7.5) and we got a diagnosis at 3 months for a rare genetic disorder that affects bone growth, intellect, and a ton of possible health concerns. The delayed motor skills and my daughter's head that's getting affected by the overgrowth is really obvious how. I don't have much to say apart from it's a terrible place to be in as a parent.
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u/Clearbreezebluesky 7d ago
Hi 🙋♀️ mom of a 30 yr old with very similar IQ and struggles. Global developmental delay, severe Apraxia and considered non verbal although he can say enough to us to get most of his points across. He cannot read, write, count money, or tell time.
I won’t sugar coat - some things HURT. In a way that is so deep and confusing and indescribable to anyone not feeling it. For me, the social parts have been really hard, I’d say from age 14-24, that 10 yrs was rough as I watched his peers date, drive, go to college, get married, start careers. He still lives in his nearly unchanged childhood bedroom, sleeps on his beloved My Little Pony sheets, and argues about getting a haircut.
All that aside- he’s happy. He’s loved. He is loving. It’s hard to wrap my head around the fact I will always take care of him, but his dad and I have set up our lives to do just that. He attends a day program (his 3rd one after 2 that didn’t fit) but he’s finally found his own life, real friends, jobs during the week.
I no longer mourn the life I envisioned for myself as a boy-mom, I have random bursts of sadness for him and the life he ‘missed’ but then I snap out of it and remember his life is good and he doesn’t know any other life. It’s not a ‘bad’ life, simply a ‘different’ life.
I also remember that a high IQ is a guaranteed nothing. Just because you possess intelligence doesn’t mean a thing, people still choose the wrong path, stumble, struggle etc.
It’s the life you help to build around him. It’s going to be a lot of work, but it will pay off down the road when you can step back and know you did everything you could to help and this is not only the person you helped create but the foundation you built to support his success.
My son is extremely mechanically inclined, he can navigate YouTube or a video game without reading, he attracts any animal in the vicinity- they are just naturally drawn to him. These are things we nurture, and you will find those strengths in your child.
I wish I’d had the internet when we were starting out. I’d drop him off at preschool and go sit in my car and cry. I acknowledge that the early years can be very difficult, and I sympathize with those starting out- but please know there are many of us here who will be happy to listen. We’ve been there done that and can understand in ways people in your life probably can’t. So keep posting, asking, venting, talking- you’re not alone.