Last year, I posted a video that showed little snippets of a day we spent at Harlow’s school, where she showed us some of the projects she had been working on throughout the year.
My daughter was also diagnosed with dyslexia in 1st or 2nd grade. Can't remember anymore as she is now a senior in high school. We did a number of things to help her, one of them being putting her into the Lindamood Bell program so that she could learn how to read in the way that her brain would find it easiest. She would describe that experience as being the worst weeks of her life, despite the fact that she now knows how to read because of it--I reminded her of this when she got a perfect score on the reading portion of the ACT recently. It is crazy to look back and see how far she has come. It really can become part of your child's identity and one that they can use to figure out how they learn best and then go from there. We were lucky in that she made great progress once we were able to identify what needed to happen to help her succeed. We were also fortunate in that she was already attending a very small private school that was good about being project based. She then went to a HUGE public high school and has done great, has learned how to advocate for herself and got into her first choice college early decision. I'm so proud of how far she has come.
I’m so exited for this series! As the K-5 counselor at a private school just like Harlow’s - exclusively for students with language-based learning differences - I know first-hand how exceptionally talented, empathetic and wise this population of kiddos is!
My question is this: What were some of the most impactful or valuable pieces of guidance you were given in this process? I work a lot with the parents of my students and would love to know from a parental perspective what you found to be most helpful.
I am so thankful we are raising kids in this time when there’s so much awareness, so many resources available, and a general destigmatization of “diagnoses” like these. I self-diagnosed ADHD Inattentive in my mid twenties after a lifetime of simultaneously struggling and thriving academically. There was zero awareness of it in the 80s/90s and I was just deemed a stubborn and lazy daydreamer that only paid attention what I wanted to. My almost 12 yr old daughter was just diagnosed ADHD inattentive and on the spectrum yet gifted and I am SWIMMING in information about how to help her thrive. What a time to be alive! I’m proud of you for recognizing the struggle and taking action for Harlow and getting her the tools to learn to be her best self.
Absolutely. I was diagnosed in my mid-30s and wouldn’t wish a late or missed diagnosis on anyone. Even apart from the lack of support or treatment, being made to feel like there’s something “wrong” with you and that you’re just not trying hard enough to fix it does a real number on the self esteem. I’m so glad this generation has better access to the support they need.
As someone who also has dyslexia and has a child who also has dyslexia thank you for sharing your story so publicly. It is so incredibly hard to share this with others. You are among friends and those who know the battle well!
Thank you for starting this series! My 15 yr old son needed speech therapy starting at 3, then was diagnosed with ADHD, dyslexia and several other learning differences at the end of 2nd grade. We switched schools so he could be in a smaller special day class at a public school. It wasn't perfect but was so much better. I'm sure many readers may know this, but just in case your family can't afford a private school, public schools are required to assess your child if you request it from the district and provide services as needed. But they won't provide an official diagnosis. We had to go to a psychologist specializing in educational assessments. It was well worth it. And once they have an IEP or 504, it's important to continuously advocate for your child. He's come a long way and is now in all general ed classes with resource help. He still has a lot of shame about his learning differences, so hoping to hear more about families and kids who have had success in building confidence. I've told him about famous, inspirational people who have ADHD or dyslexia but some days that doesn't help.
I am interested in what this school does differently than other schools. I’m a reading specialist (that specializes in Dyslexia) in a public school and I’m just interested in what programs and strategies this school uses. We have a picture book we give our students who are diagnosed called “I have Dyslexia” by Dr. Hurford, a psychologist that specializes in Dyslexia and how the brain learns to read. Thank you for helping to break the stigma, Harlow is so fun to watch. Love your platform and everything you showcase!
Likely small class sizes (LB class sizes are typically ~7-10 students). Cohorts matched by skill level. Hands on learning. Explicit instruction. Movement breaks. Options for students to partake in high interest electives.
My daughter was diagnosed with Dyslexia a couple of years ago. I had the great fortune that my mother is a teacher with a reading specialty so she could tell early on that something was "different." We live in very rural Missouri where the state had mandated that each school give a dyslexia "screening" but then there are very, very limited actual resources to turn to if that screening comes back with any concerns for dyslexia. After a lot of research on where to turn to even be able to get her an actual diagnosis we have been able to find some tutoring at the local university and (of course) tutoring from my mother. As I am sure you've learned dyslexia is a lot more common that what we first thought, and while my own child has now flourished, I sadly know that the area we're in does not have the resources to help all families. My daughter is very bright, as is common with kiddos with dyslexia, and with the right amount of tutoring and support is now reading on her grade level. I am so thankful for that. I am also reading your post and other comments about schools just for children with language learning differences and I am so jealous. ;) We are blessed with a fantastic small public school here and I can't say enough good things about how the teachers and staff have stepped up to the plate to really help my daughter, but a school specifically designed for the way her brain works? A dream!!
Mazzy and Harlow are about the same age as my kiddos so I found your Instagram a long time ago and been following ever since. I am excited about this series.
We just made the decision to move my daughter to a school for kids with dyslexia next year (for fourth grade). She's having very mixed emotions about it - mostly around not wanting to leave her friends. She is super social and I know she will happy once she acclimates into the new school (which will probably take all of 1 day!), I am trying to find things to do over the next several months to make her feel more comfortable. I'd love to hear any thoughts on things you or the school may have done to help with transition anxiety.
Have her visit the new school/do a visit day. Consider doing a meet up with classmates. Acknowledge her feelings are real because change can be hard for everyone. Organize an activity she can regularly do with peers from her former school so connections remain.
Thank you! She did 2 in school shadow days already and I was able to arrange meetups with a couple other girls who are also going. She's sticking to Girl Scouts at her old school so I'm hopeful all that makes the transition a bit easier.
My 2 children (Europe) have dyslexia. I’m interested to learn what the NYC diagnostic journey is like? Including how long does it take, and how much does it cost?
We just had a meeting with the school and the seven or so folks who are required to show up when you ask for your kid to be tested. Our kiddo is now 9 and in 3rd grade in a dual immersion school. They were slow to read. Last summer they were still at a kindergarten reading level. They had interventions in school in the form of tutors and small group but never were tested for anything further than grade level competency. Over summer we got him two fun reading tutors and really leaned into building stamina. My kid went from kindergarten reading level at the beginning of summer to a solid second grade by the beginning of their grade. Over the holiday break in December the teacher asked us to focus on writing. Writing comes hard to our kiddo. I noticed there are still so many b,d,p,q,6,9, and 3, confusion. There were even times with the last letter of their name would be turned around. That's an N. While I had been told that kids often grow out of this in later elementary years, I decided to write and ask for testing because their self confidence was taking a dive. I have explained that they have a fancy brain and they just look at the world differently. I've said they very much have an artistic brain, which they do, and that sometimes that requires understanding from the grown ups around them. When we met with the school we found out they have reached grade level in both English and Spanish reading and comprehension and their math understanding is a little above grade level. Because of all that, the school won't be offering support in the form of a tutor, but they said they were required to test if I wanted that done. I said I did. I figured it couldn't hurt, they were ready and interested in it, and the school offered it and it came with a promise of information. I was told because my kid isn't two years behind in reading or writing that this is the reason why interventions aside from what his teacher currently does won't be accessible. My struggle has been finding help - like a writing tutor or a Spanish reading tutor. Even our teachers don't have names of resources to pass along. All that to say, I'm looking forward to this series and also the comments.
The fact your child is getting unoffical services with no IEP is a red flag because there is no official progress monitoring without an IEP. Consider getting a private eval and/or consult with an advocate. You may also want the school to do additional measures around areas of concern as all are not created equal.
Who said my child was getting no unofficial services with no IEP? I said my kid was being tested. Until we have the results from the tests and observations- the same things every kid goes through when being evaluated for and IEP - we don’t know enough yet. I appreciate the concern but it’s too soon to jump to “red flag.” The school is doing what I asked and what’s required when I ask - having my kid tested and observed. Once we get those results back we will have a conversation about the findings and then I can advocate or have my child evaluated elsewhere.
Apologies. I must have misread. It's all so individual, even some of the process terminology state to state. If you do not know if it already, Wrightslaw is a great place to know about different testing measures. Some students can be at grade level in one skill (like decoding) but not in another (like fluency.) I'm still actively learning about all of these things. I'm a caregiver myself - not a professional paid advocate. I have had a long journey and have gathered a lot of resources with the hope of sharing them. Be well. https://www.readnaturally.com/research/5-components-of-reading.
I’m excited for this series! We went through an ADHD diagnosis in winter 2019 for my then-first grader and had just started meds when everything shut down in spring of 2020 so we also got to see his struggle with virtual school in real time. I know it’s a different experience but I found so few resources out there for me and it’s honestly been my biggest challenge as a parent to try and set him up for success in a world made for brains that are different than his (and also without neglecting his older brother). So I’m always excited to read about others’ experiences navigating school and life and what people have found helpful or not.
My little one has struggled with language since he was baby. He had delayed speech and through early intervention he has been in school/preschool since he was 4. He is in first grade now in a special education class and still struggles so much with reading and recognizing words. His speech has improved a ton though. Only this year he has been able to consistently recognize letters. His school IEP team says he is behind but don't seem overly concerned as he already is in speech and special ed. But what if I am not doing enough? Should I push for a private official diagnosis? There is a chance that he is on the Spectrum, undiagnosed. His older brother is diagnosed Autistic but shows it more in his behavior, he hasn't had as many speech/language issues.
THANK YOU for giving dyslexia a forum for discussion!! - except for putting things behind the paid wall. Consider keeping non personal information out for free subscribers. Far too many do not have resources yet are paying a heavy “Parent Tax.” This is an enormous burden that I’ve written about it. But wanted to share on the thread help navigating THE DIAGNOSIS. State to state so much varies as far as law interpretation. In MA, a private evaluation (too) often is the path for getting any services because there are no state mandatories, rather “guidance.” Yet there is a lot to consider at every step. https://open.substack.com/pub/dyslexianowwhat/p/some-ins-and-outs-to-neuropsychs?r=1nv0oe&utm_medium=ios
I am only answering questions from a personal perspective because I have no expertise on the subject otherwise. But happy you are here to point readers to more research based resources!
That makes sense! I'm a caregiver myself (and a copywriter). Not a paid advocate or educational professional of any kind. I have gathered resources more related to caregiver journey and perspective -- because my family's journey has been a long and layered one. I do not provide direct recommendations/referrals because it's all so individual. But I do know, as a communicator, that resources and documentation are KEY. As is destigmatization. Be well!
My daughter was also diagnosed with dyslexia in 1st or 2nd grade. Can't remember anymore as she is now a senior in high school. We did a number of things to help her, one of them being putting her into the Lindamood Bell program so that she could learn how to read in the way that her brain would find it easiest. She would describe that experience as being the worst weeks of her life, despite the fact that she now knows how to read because of it--I reminded her of this when she got a perfect score on the reading portion of the ACT recently. It is crazy to look back and see how far she has come. It really can become part of your child's identity and one that they can use to figure out how they learn best and then go from there. We were lucky in that she made great progress once we were able to identify what needed to happen to help her succeed. We were also fortunate in that she was already attending a very small private school that was good about being project based. She then went to a HUGE public high school and has done great, has learned how to advocate for herself and got into her first choice college early decision. I'm so proud of how far she has come.
I’m so exited for this series! As the K-5 counselor at a private school just like Harlow’s - exclusively for students with language-based learning differences - I know first-hand how exceptionally talented, empathetic and wise this population of kiddos is!
My question is this: What were some of the most impactful or valuable pieces of guidance you were given in this process? I work a lot with the parents of my students and would love to know from a parental perspective what you found to be most helpful.
I am so thankful we are raising kids in this time when there’s so much awareness, so many resources available, and a general destigmatization of “diagnoses” like these. I self-diagnosed ADHD Inattentive in my mid twenties after a lifetime of simultaneously struggling and thriving academically. There was zero awareness of it in the 80s/90s and I was just deemed a stubborn and lazy daydreamer that only paid attention what I wanted to. My almost 12 yr old daughter was just diagnosed ADHD inattentive and on the spectrum yet gifted and I am SWIMMING in information about how to help her thrive. What a time to be alive! I’m proud of you for recognizing the struggle and taking action for Harlow and getting her the tools to learn to be her best self.
Absolutely. I was diagnosed in my mid-30s and wouldn’t wish a late or missed diagnosis on anyone. Even apart from the lack of support or treatment, being made to feel like there’s something “wrong” with you and that you’re just not trying hard enough to fix it does a real number on the self esteem. I’m so glad this generation has better access to the support they need.
As someone who also has dyslexia and has a child who also has dyslexia thank you for sharing your story so publicly. It is so incredibly hard to share this with others. You are among friends and those who know the battle well!
Thank you for starting this series! My 15 yr old son needed speech therapy starting at 3, then was diagnosed with ADHD, dyslexia and several other learning differences at the end of 2nd grade. We switched schools so he could be in a smaller special day class at a public school. It wasn't perfect but was so much better. I'm sure many readers may know this, but just in case your family can't afford a private school, public schools are required to assess your child if you request it from the district and provide services as needed. But they won't provide an official diagnosis. We had to go to a psychologist specializing in educational assessments. It was well worth it. And once they have an IEP or 504, it's important to continuously advocate for your child. He's come a long way and is now in all general ed classes with resource help. He still has a lot of shame about his learning differences, so hoping to hear more about families and kids who have had success in building confidence. I've told him about famous, inspirational people who have ADHD or dyslexia but some days that doesn't help.
Advocating for the right services delivered with fidelity is a HUGE piece. Enormous in fact.
Absolutely. I've had to push myself out of my people pleasing comfort zone many times.
I am interested in what this school does differently than other schools. I’m a reading specialist (that specializes in Dyslexia) in a public school and I’m just interested in what programs and strategies this school uses. We have a picture book we give our students who are diagnosed called “I have Dyslexia” by Dr. Hurford, a psychologist that specializes in Dyslexia and how the brain learns to read. Thank you for helping to break the stigma, Harlow is so fun to watch. Love your platform and everything you showcase!
Likely small class sizes (LB class sizes are typically ~7-10 students). Cohorts matched by skill level. Hands on learning. Explicit instruction. Movement breaks. Options for students to partake in high interest electives.
I’m looking forward to this! I’d love to know what types of books end up working well for your kiddos.
My daughter was diagnosed with Dyslexia a couple of years ago. I had the great fortune that my mother is a teacher with a reading specialty so she could tell early on that something was "different." We live in very rural Missouri where the state had mandated that each school give a dyslexia "screening" but then there are very, very limited actual resources to turn to if that screening comes back with any concerns for dyslexia. After a lot of research on where to turn to even be able to get her an actual diagnosis we have been able to find some tutoring at the local university and (of course) tutoring from my mother. As I am sure you've learned dyslexia is a lot more common that what we first thought, and while my own child has now flourished, I sadly know that the area we're in does not have the resources to help all families. My daughter is very bright, as is common with kiddos with dyslexia, and with the right amount of tutoring and support is now reading on her grade level. I am so thankful for that. I am also reading your post and other comments about schools just for children with language learning differences and I am so jealous. ;) We are blessed with a fantastic small public school here and I can't say enough good things about how the teachers and staff have stepped up to the plate to really help my daughter, but a school specifically designed for the way her brain works? A dream!!
Mazzy and Harlow are about the same age as my kiddos so I found your Instagram a long time ago and been following ever since. I am excited about this series.
We just made the decision to move my daughter to a school for kids with dyslexia next year (for fourth grade). She's having very mixed emotions about it - mostly around not wanting to leave her friends. She is super social and I know she will happy once she acclimates into the new school (which will probably take all of 1 day!), I am trying to find things to do over the next several months to make her feel more comfortable. I'd love to hear any thoughts on things you or the school may have done to help with transition anxiety.
Have her visit the new school/do a visit day. Consider doing a meet up with classmates. Acknowledge her feelings are real because change can be hard for everyone. Organize an activity she can regularly do with peers from her former school so connections remain.
Thank you! She did 2 in school shadow days already and I was able to arrange meetups with a couple other girls who are also going. She's sticking to Girl Scouts at her old school so I'm hopeful all that makes the transition a bit easier.
My 2 children (Europe) have dyslexia. I’m interested to learn what the NYC diagnostic journey is like? Including how long does it take, and how much does it cost?
I can speak to Massachusetts: because medical coverage is not great and our state only has “guidelines,” costs can be enormous! https://open.substack.com/pub/dyslexianowwhat/p/the-unbearable-weight-of-the-parent?utm_campaign=post&utm_medium=web
We just had a meeting with the school and the seven or so folks who are required to show up when you ask for your kid to be tested. Our kiddo is now 9 and in 3rd grade in a dual immersion school. They were slow to read. Last summer they were still at a kindergarten reading level. They had interventions in school in the form of tutors and small group but never were tested for anything further than grade level competency. Over summer we got him two fun reading tutors and really leaned into building stamina. My kid went from kindergarten reading level at the beginning of summer to a solid second grade by the beginning of their grade. Over the holiday break in December the teacher asked us to focus on writing. Writing comes hard to our kiddo. I noticed there are still so many b,d,p,q,6,9, and 3, confusion. There were even times with the last letter of their name would be turned around. That's an N. While I had been told that kids often grow out of this in later elementary years, I decided to write and ask for testing because their self confidence was taking a dive. I have explained that they have a fancy brain and they just look at the world differently. I've said they very much have an artistic brain, which they do, and that sometimes that requires understanding from the grown ups around them. When we met with the school we found out they have reached grade level in both English and Spanish reading and comprehension and their math understanding is a little above grade level. Because of all that, the school won't be offering support in the form of a tutor, but they said they were required to test if I wanted that done. I said I did. I figured it couldn't hurt, they were ready and interested in it, and the school offered it and it came with a promise of information. I was told because my kid isn't two years behind in reading or writing that this is the reason why interventions aside from what his teacher currently does won't be accessible. My struggle has been finding help - like a writing tutor or a Spanish reading tutor. Even our teachers don't have names of resources to pass along. All that to say, I'm looking forward to this series and also the comments.
The fact your child is getting unoffical services with no IEP is a red flag because there is no official progress monitoring without an IEP. Consider getting a private eval and/or consult with an advocate. You may also want the school to do additional measures around areas of concern as all are not created equal.
Who said my child was getting no unofficial services with no IEP? I said my kid was being tested. Until we have the results from the tests and observations- the same things every kid goes through when being evaluated for and IEP - we don’t know enough yet. I appreciate the concern but it’s too soon to jump to “red flag.” The school is doing what I asked and what’s required when I ask - having my kid tested and observed. Once we get those results back we will have a conversation about the findings and then I can advocate or have my child evaluated elsewhere.
Apologies. I must have misread. It's all so individual, even some of the process terminology state to state. If you do not know if it already, Wrightslaw is a great place to know about different testing measures. Some students can be at grade level in one skill (like decoding) but not in another (like fluency.) I'm still actively learning about all of these things. I'm a caregiver myself - not a professional paid advocate. I have had a long journey and have gathered a lot of resources with the hope of sharing them. Be well. https://www.readnaturally.com/research/5-components-of-reading.
I’m excited for this series! We went through an ADHD diagnosis in winter 2019 for my then-first grader and had just started meds when everything shut down in spring of 2020 so we also got to see his struggle with virtual school in real time. I know it’s a different experience but I found so few resources out there for me and it’s honestly been my biggest challenge as a parent to try and set him up for success in a world made for brains that are different than his (and also without neglecting his older brother). So I’m always excited to read about others’ experiences navigating school and life and what people have found helpful or not.
My little one has struggled with language since he was baby. He had delayed speech and through early intervention he has been in school/preschool since he was 4. He is in first grade now in a special education class and still struggles so much with reading and recognizing words. His speech has improved a ton though. Only this year he has been able to consistently recognize letters. His school IEP team says he is behind but don't seem overly concerned as he already is in speech and special ed. But what if I am not doing enough? Should I push for a private official diagnosis? There is a chance that he is on the Spectrum, undiagnosed. His older brother is diagnosed Autistic but shows it more in his behavior, he hasn't had as many speech/language issues.
THANK YOU for giving dyslexia a forum for discussion!! - except for putting things behind the paid wall. Consider keeping non personal information out for free subscribers. Far too many do not have resources yet are paying a heavy “Parent Tax.” This is an enormous burden that I’ve written about it. But wanted to share on the thread help navigating THE DIAGNOSIS. State to state so much varies as far as law interpretation. In MA, a private evaluation (too) often is the path for getting any services because there are no state mandatories, rather “guidance.” Yet there is a lot to consider at every step. https://open.substack.com/pub/dyslexianowwhat/p/some-ins-and-outs-to-neuropsychs?r=1nv0oe&utm_medium=ios
I am only answering questions from a personal perspective because I have no expertise on the subject otherwise. But happy you are here to point readers to more research based resources!
That makes sense! I'm a caregiver myself (and a copywriter). Not a paid advocate or educational professional of any kind. I have gathered resources more related to caregiver journey and perspective -- because my family's journey has been a long and layered one. I do not provide direct recommendations/referrals because it's all so individual. But I do know, as a communicator, that resources and documentation are KEY. As is destigmatization. Be well!