Intro, vent and ST questions

[Starbuck128]

Hello everyone. I've lurked periodically on SN (here and over there) for about 1.5 years. I think I'll have more of my own questions in the future, so I thought I'd intro. I don't have anyone IRL who really understands what we are going through, so I hope you'll indulge my intro. It will be nice to share with someone who won't respond with "He's fine, don't worry about it." or "I'm sure everything will be okay."

I'm a SAHM to DS, who turned 3 last week. We have another LO due at the end of April. DS started ST through ECI when he was about 18 months old. He started PK through our school district this week where he will continue his ST. His latest evaluation showed him delayed with his expressive speech and social/emotional, but the social/emotional delays were primarily because of his communication delays. He mostly uses one word phrases, and mostly to label objects. He has a few 2 and 3 words phrases. He also has articulation problems, and only I understand a vast majority of his words. He doesn't like to talk much, but in the last couple of weeks has started to overcome his shyness enough to respond to almost everything with a loud "NO!" Three years old is going to be a fun year.

His ARD meeting was overwhelming. I think I'm realistic about his delays, but it was hard to see them all laid out in so much detail. He qualified for part time PK in a special education class room, with reverse inclusion with part of another PK class for 45 minutes every day. He'll also have 30 minutes of ST a week.

I didn't have much to say about his IEP. I feel like I should have gone in better prepared and had more to say about his goals. I feel like this whole process was very rushed because I didn't even know he qualified for PK until 30 minutes into the ARD meeting, and oh, also he would be starting the next week! Who gets a weeks notice their child will be going to school the first time? I know this can be normal for our situation, but I'm envious of other parents who have months to prepare their child for such a big change. (Also, DS has severe food allergies so I'm also trusting someone else with his FA for the first time, and rushing through the process of setting up the right safety precautions in his classrooms and with the nurse. It's really, really scary.)

Thirty minutes a week of ST doesn't seem like enough. Is it enough? That's half what he had in ECI, and I don't think that helped him at all. Do people in this situation see a private ST? Is that something I would pursue on my own, or is that something that needs to be communicated with the school?

I'm still in the process of updating friends and family about DS starting PK. No one seems to understand that this isn't regular PK and that I didn't just signed him up to get him out of the house for a few hours once the new baby arrives. My mom thinks this is all overkill on my part and insists that because he recently learned to pronounce "mommy" in a way even she can understand that he's fine. My best friend won't stop talking about how lucky we are that we get free PK. None of this is exactly easy and sometimes I wish that someone who cared about us would say something supportive of either me or DS instead of minimizing the situation. It's lonely at the moment.

[cam]

I'm sorry you aren't getting the support you would like. It is hard. My concerns were certainly minimized at first too, as is unfortunately common in our world. I think a lot of it comes from people thinking they are being supportive - they think minimizing your concerns will help you feel less concerned (Lol, right?!?). They also aren't there to see some issues or to see the extent of some issues.

I can't tell you if 30 minutes of ST is enough. It sounds like perhaps your concerns are justified, so it won't hurt to look into private ST. There are many people who supplement therapies. Keep in mind too that now that LO is in the 3-22 program instead of birth-3, the focus of services is only to address educational needs, whereas EI typically addresses a broader platform (though EI is highly variable by state).

As for such short notice to start PK, I can see how it would be hard to wrap your head around and make you a bit more overwhelmed for a bit. My LO has FAs too, so I can see where that too adds a whole extra level of concern/things to address. I hope it is as smooth of a transition as possible. Good luck to you both.

We are always here for support, information, an understanding of this world we are all in, etc. Welcome!

[funchicken]

Welcome to the board!

My oldest DD, who will be 7 in April, has a severe peanut/tree nut allergy. She was diagnosed at age 3, and I remember how scary it was leaving her at preschool or with babysitters. I hope that the school staff has been reassuring. I just switched to Auvi-Q auto-injectors because we've started doing drop-off play dates and birthday parties. DD was terrified of the epipens, but she actually let me use the Auvi-Q trainer on her the other day. They're pretty slick.

We're here if you need to talk.

[junebug060609]

Welcome.

I also have a DS who is three and is in a free pre k program. He started last March. I totally bawled like a baby in my car before leaving the first day (I had to drop off). Oh and I was pg when he started school last year...dd is now almost 10 months.

My DS is in his program M-F, three hours per day. No speech in school (his iep meeting is Tuesday and it's something I'm going to push harder for), but he gets it outside school for 30 mins per week. He also gets aba therapy.

I actually didn't mind when people assumed it was a typical preschool. It was nice to feel "typical" for a minute. They sang a different tune when I explained the why a little more (in our case, an autism diagnosis with severe speech delays and global developmental delays).

[mrsbuttinski]

Feb 20, 2015 20:26:27 GMT -5 Starbuck128 said:

Hello everyone. I've lurked periodically on SN (here and over there) for about 1.5 years. I think I'll have more of my own questions in the future, so I thought I'd intro. I don't have anyone IRL who really understands what we are going through, so I hope you'll indulge my intro. It will be nice to share with someone who won't respond with "He's fine, don't worry about it." or "I'm sure everything will be okay."

Welcome. I think a lot of us have turned to the internet to find others who get it. My IRL people are better now, but we're 15 years post-dx.

I'm a SAHM to DS, who turned 3 last week. We have another LO due at the end of April. DS started ST through ECI when he was about 18 months old. He started PK through our school district this week where he will continue his ST. His latest evaluation showed him delayed with his expressive speech and social/emotional, but the social/emotional delays were primarily because of his communication delays. He mostly uses one word phrases, and mostly to label objects. He has a few 2 and 3 words phrases. He also has articulation problems, and only I understand a vast majority of his words. He doesn't like to talk much, but in the last couple of weeks has started to overcome his shyness enough to respond to almost everything with a loud "NO!" Three years old is going to be a fun year.

Why are they saying that his social and emotional delays are the result of his communication delays? How did they determine that? My son has Aspergers which is a kind of ASD where speech and adaptive skills are typical but social and emotional maturity are delays by about 1/3 of chronological age. DS was speaking in real sentences at 16 months; by the time he was around 18 months old there were differences in how he interacted with other kids.

His ARD meeting was overwhelming. I think I'm realistic about his delays, but it was hard to see them all laid out in so much detail.

I'm sorry. It's hard on your heart to see it in black & white even when you know it. I remember seeing the results of DS's 6th grade Vineland. He scored in the 1/10th of 0.01%tile for social communication. I knew he was challenged in that area, but dear God. This was a kid who was getting weekly therapy and social skills instruction for years. Who was mainstreamed, was active in band and scouts and still had the social IQ of a turnip. It was devastating.


He qualified for part time PK in a special education class room, with reverse inclusion with part of another PK class for 45 minutes every day. He'll also have 30 minutes of ST a week.


This is very good stuff. Most special education preschool classes are very language and social skills focused, so even though he'll only be getting SLT for 30 minutes, speech and communication will be pushed via the activities they do. And having peers will give him opportunities to practice his new skills in a natural setting.

I didn't have much to say about his IEP. I feel like I should have gone in better prepared and had more to say about his goals.


Maybe. It's hard the first time. Bottom line is that you still came away with what sounds like an ideal setting.


I feel like this whole process was very rushed because I didn't even know he qualified for PK until 30 minutes into the ARD meeting, and oh, also he would be starting the next week! Who gets a weeks notice their child will be going to school the first time? I know this can be normal for our situation, but I'm envious of other parents who have months to prepare their child for such a big change.


This isn't all that unusual. Sometimes the EI folks who start the transition process won't know if there's room in a preschool class midyear, so they play the cards close to their chests. 

A week is plenty of time for a kid to transition unless you're dealing with a kid who has ASD and/or tremendous anxiety who needed multiple visits and Social Stories to prepare. Are transitions difficult for him as a rule? It's harder on the mom, in most cases. He'll take his cues from you; if you act as if you expect this to be a positive thing, he'll believe it.

(Also, DS has severe food allergies so I'm also trusting someone else with his FA for the first time, and rushing through the process of setting up the right safety precautions in his classrooms and with the nurse. It's really, really scary.)

This is scary. You'll have to make sure the team understands his FA. Most public schools are very savvy about this. There's a thread we had a couple days ago about adding or attaching an Individual Health Plan to an IEP.

Thirty minutes a week of ST doesn't seem like enough. Is it enough? That's half what he had in ECI, and I don't think that helped him at all.

Maybe it is, maybe it isn't. Don't discount the positive influence of peers. The nice thing about an IEP is that it's a living document. If some part of it isn't working, the team can reopen it and add more services. It's interesting that he had twice weekly SLT in EI and yet you've seen no progress? Have you had him evaluated privately as well? In a situation like this, apraxia might be on the table. Apraxia is often resistant to most kinds of speech therapy. 


Do people in this situation see a private ST? Is that something I would pursue on my own, or is that something that needs to be communicated with the school?

Many people do a mix of private and school based services. If he's not responding to the services he's getting, a second opinion from a private speech therapist and perhaps a dev pedi makes sense. One of my friends has a son with apraxia who was silent until he started kindie. Socially and emotionally he was pretty typical- he had a best friend across the street even though he was wordless initially. He went to a private preschool with speech services pushed in and also saw a private SLP who specialized in PROMPT. He ceased private services around age 10, but did them in school until 10th grade. LOL, he's still got some lingering artic issues and is doing SLT as a grad student- and is seeing a lot of progress.

Whether you share is up to you. I always did. But I didn't replicate services- if your DS is working with 2 specialists on the same issue, it helps if they're on the same page or one supplements the other.

I'm still in the process of updating friends and family about DS starting PK. No one seems to understand that this isn't regular PK and that I didn't just signed him up to get him out of the house for a few hours once the new baby arrives.


So? Preschool is a wonderful thing for kids. IMHO, threes belong in preschool.  I'm kind of with junebug0611 on this; let all but the closest to you think whatever they think. His IEP is a confidential document you don't need to share. 


My mom thinks this is all overkill on my part and insists that because he recently learned to pronounce "mommy" in a way even she can understand that he's fine.

If your mom is judgemental around this, stop discussing it with her. My dad used to play devil's advocate with me about DS's dx and his special education services. At one point he accused me of making DS special ed. Just WTF? He was asked to back off and when he didn't/couldn't, I avoided him. FTR, I am my parents' only living child, taking a step back to surround myself only with those who were on TeamButtinski wasn't something I did lightly. DH and I never even shared DS's dx with his mom. His brothers know, but early on they also tried to talk me out of it.


My best friend won't stop talking about how lucky we are that we get free PK. None of this is exactly easy and sometimes I wish that someone who cared about us would say something supportive of either me or DS instead of minimizing the situation. It's lonely at the moment.

Ugh. Change the subject. There are a whole lot of reasons people are dismissive of your concerns. Often it comes from a misguided attempt to be supportive by pretending there's nothing wrong with your child. But it's frustrating as hell. If this is a truly BFF, sometimes honesty helps. Tell them to listen, explain that you're concerned and scared and that having this trivialized doesn't feel supportive to you. 

[mamaturtle]

Gosh that bring so much memories when DS was 2 1/2 years old and they had a 2 1/2 year old classroom for him at the district preschool. I went the first IEP alone, unprepared and I sat there in shock and went through the motions.

It wasn't until DS was in the third and final year of preschool that I started dragging DH and started writing down a list of things we wanted to address at IEP meetings. I even asked DH to look over the list and add his own concerns. DH was much better at delivering our wants in a civil way. I was too blunt, emotional and intimidated by an all female IEP team. We had 7 IEP's in one school year because we were not happy or in agreement of what they proposed or the way the teacher handled the ASD class.

Remember, you can always bring someone with you whether it be an advocate, friend or spouse. An extra set of ears can take notes and see that everything is fair. Or you can record your meeting. Just be sure to let the IEP team know you are doing so.

[Starbuck128]

Wow! Thank you for the very informative and supportive responses. I'm going to learn so much here.

cam That is a very good point about how the school is only looking to address his educational needs. I am worried about that too, but also worried about him fitting in and making friends. My BIL is on the spectrum and has several mental health issues. He did not receive any therapy or counseling until he was a teenager. DH remembers BIL was always very aware of how he was different and he became very depressed over it. I thought about it all night, and I still don't know if he needs private ST, but I don't think we would regret pursuing it. I'm tired of questioning whether or not I should be doing more for him.

funchicken I grew up with a severe tree nut allergy, and I foolishly thought it would prepare me for handing DS's allergies when he was diagnosed. To me, navigating the world with FA was second nature and I thought with DS's diagnosis I would just add a couple of more foods to the list and we'd continue on our merry way. Reality hit me a few days later. Being a parent of a FA kid is a whole different ball game, but I take comfort in knowing when DS is grown up he will be able to manage his FA as easily as I manage my own.

junebug060609 I hope you are able to get in school ST for your son. Good luck!

mrsbuttinski I don't know what she meant by his social/emotional delays were a result of his communication delays. I should have asked. I've been trying to remember the questionnaire I filled out during his evaluation. I think there were questions about whether or not he could share stories about what happened that day, and how he expresses his needs and emotions. If he was able to do those things but didn't, it would reflect social and emotional immaturity, correct? But he doesn't do those things because he verbally isn't there yet. The confines of a "does he never/sometimes/always" questionnaire wouldn't take into account that he doesn't do it because he can't verbalize those things. 

You're right. A week was enough time for him, but not enough for me. He's now been in school for a week and I still don't have all his medical forms turned in. The school wants some forms signed by his allergist, but his allergist won't sign forms like that for liability reasons, but he has his own forms he'll send in lieu of the official school forms. The school forms are clearly written with an older child in mind and the check boxes leave no room to change the forms, but no one in their right mind would sign the forms as is. And until all of this is taken care of, DS's Epi Pens are stored on the other side of a huge campus, in a big Rubbermaid bin of other Epis. But he's in a classroom with people unfamiliar with recognizing his unique internal only anapylaxis signs, he's unable to verbalize any symptoms and unaware he shouldn't accept strange food, and some how his teachers will recognize, get his Epi Pens and treat him within 8 minutes of ingestion. No. That's impossible. I feel like the most irresponsible parent in the world sending off to school in this situation.

Thank you for your input on private ST. You've given me more to think about.

mamaturtle I'm definitely bring DH along next time for an extra set of ears. He hasn't been involved with any of this so I don't know how helpful he will be, but he should be involved.

[mrsbuttinski]

Feb 21, 2015 12:12:29 GMT -5 Starbuck128 said:

mrsbuttinski I don't know what she meant by his social/emotional delays were a result of his communication delays. I should have asked.


It can be hard to sort out. DS had great speech, but was iffy on communication. I know kids who are the other ay round. Kids who communicate via sign or by showing what they want/need.


A lot of kids with ASD who are otherwise articulate might have difficulty retelling a remote event for a lot of different reasons. Some kids struggle to understand and answer "wh" questions. Poor Theory of Mind might mean a child assumes you know what's in their head and offer you very little information as a result or they may not understand the context of what happened. Poor executive function might mean they get stuff out of order, poor central coherence could mean they offer random details but not the headline item. Sometimes DS needed a lot of time to process his day. I got better results asking just before bed.


I've been trying to remember the questionnaire I filled out during his evaluation. I think there were questions about whether or not he could share stories about what happened that day, and how he expresses his needs and emotions. If he was able to do those things but didn't, it would reflect social and emotional immaturity, correct? But he doesn't do those things because he verbally isn't there yet. The confines of a "does he never/sometimes/always" questionnaire wouldn't take into account that he doesn't do it because he can't verbalize those things. 


Sounds like maybe BASC or Vineland. 


It's hard to say. A lot of kids on spectrum who are verbal have difficulty retelling a remote event or answering "wh" questions. Sometimes it's a matter of needing more time to process the day and come up with an answer. Sometimes it's a function of poor Theory of Mind- the child doesn't understand that the adult doesn't have the same baseline information. Sometimes executive function can impact the ability to organize their thoughts. Sometimes poor central coherence means you get random details but miss the main point.


   You're right. A week was enough time for him, but not enough for me. He's now been in school for a week and I still don't have all his medical forms turned in. The school wants some forms signed by his allergist, but his allergist won't sign forms like that for liability reasons, but he has his own forms he'll send in lieu of the official school forms. The school forms are clearly written with an older child in mind and the check boxes leave no room to change the forms, but no one in their right mind would sign the forms as is. And until all of this is taken care of, DS's Epi Pens are stored on the other side of a huge campus, in a big Rubbermaid bin of other Epis. But he's in a classroom with people unfamiliar with recognizing his unique internal only anapylaxis signs, he's unable to verbalize any symptoms and unaware he shouldn't accept strange food, and some how his teachers will recognize, get his Epi Pens and treat him within 8 minutes of ingestion. No. That's impossible. I feel like the most irresponsible parent in the world sending off to school in this situation.

I can understand how you'd be terrified. How soon until you get the situation with the epis straightened out? how do you know when he's having a reaction to something? Could he be taught to use some sort of nonverbal communication like a PECS board? 

Thank you for your input on private ST. You've given me more to think about.

Great idea to bring your DH with you.

[funchicken]

Okay, I just saw your latest post. Nope, that's not okay. That stressed me out just reading it, and I wouldn't send DD to a school that handled FAs that way.

This is what our preschool does:
The lead teachers are all MAT certified, so they can administer epipens if necessary. They keep the epipens locked in the office, and the teachers pick them up before class begins. If they leave the classroom for something one of the teachers wears a backpack with the epipens in it. The medication always stays with the child. Why can't they do that?

No one should give him food without prior approval from you. Is this all day preschool? Half day? I can't remember what you said. Under normal circumstances will he just be eating a snack packed from home?

[dymphna]

Feb 21, 2015 12:12:29 GMT -5 Starbuck128 said:

Wow! Thank you for the very informative and supportive responses. I'm going to learn so much here.

cam That is a very good point about how the school is only looking to address his educational needs. I am worried about that too, but also worried about him fitting in and making friends. My BIL is on the spectrum and has several mental health issues. He did not receive any therapy or counseling until he was a teenager. DH remembers BIL was always very aware of how he was different and he became very depressed over it. I thought about it all night, and I still don't know if he needs private ST, but I don't think we would regret pursuing it. I'm tired of questioning whether or not I should be doing more for him.

funchicken I grew up with a severe tree nut allergy, and I foolishly thought it would prepare me for handing DS's allergies when he was diagnosed. To me, navigating the world with FA was second nature and I thought with DS's diagnosis I would just add a couple of more foods to the list and we'd continue on our merry way. Reality hit me a few days later. Being a parent of a FA kid is a whole different ball game, but I take comfort in knowing when DS is grown up he will be able to manage his FA as easily as I manage my own.

junebug060609 I hope you are able to get in school ST for your son. Good luck!

mrsbuttinski I don't know what she meant by his social/emotional delays were a result of his communication delays. I should have asked. I've been trying to remember the questionnaire I filled out during his evaluation. I think there were questions about whether or not he could share stories about what happened that day, and how he expresses his needs and emotions. If he was able to do those things but didn't, it would reflect social and emotional immaturity, correct? But he doesn't do those things because he verbally isn't there yet. The confines of a "does he never/sometimes/always" questionnaire wouldn't take into account that he doesn't do it because he can't verbalize those things. My daughter is 3.5 with apraxia. This was the same for us. Her receptive language was advanced but she was nonverbal when she turned 3. She always scored low in the same areas for the same reason. DD is not on the spectrum and nobody has ever had any concerns that she was. DD would point and grunt to get her point across. We did not teach her to sign because for my DD she would only sign and not try  to verbalize what so ever, no matter what we did. I'm glad that we did not pursue signing because she's made so much progress very quickly. We get her private ST as well. She had a personality conflict with her school SLP and would not work very much for her. (She was a great SLP 40 years experience and I really liked her but she retired and the school is having a hard time retaining another SLP, lots of turn around) Our private SLP is brand new out of school and has never worked with apraxia. DD loves private SLP and works well for her, that has made all the difference.

You're right. A week was enough time for him, but not enough for me. He's now been in school for a week and I still don't have all his medical forms turned in. The school wants some forms signed by his allergist, but his allergist won't sign forms like that for liability reasons, but he has his own forms he'll send in lieu of the official school forms. The school forms are clearly written with an older child in mind and the check boxes leave no room to change the forms, but no one in their right mind would sign the forms as is. And until all of this is taken care of, DS's Epi Pens are stored on the other side of a huge campus, in a big Rubbermaid bin of other Epis. But he's in a classroom with people unfamiliar with recognizing his unique internal only anapylaxis signs, he's unable to verbalize any symptoms and unaware he shouldn't accept strange food, and some how his teachers will recognize, get his Epi Pens and treat him within 8 minutes of ingestion. No. That's impossible. I feel like the most irresponsible parent in the world sending off to school in this situation.That is unacceptable! My DS has emergency seizure meds that have to be administered within 2 minutes. All of his teachers and aides are trained and his meds go with him everywhere. We keep them in his book bag that goes to and from school with him as well. The teachers take his book bag to lunch, to the gym, to recess, and on fieldtrips. Have you talked to an administrator about this? Sometimes a teacher will say this is how we've always done it, but talking with the administrator with a doctor's letter would probably work. Same thing with the medical forms. I am a teacher and we have some children with epipens that stay in the office. Non of these children have life threatening allergies. I know if we have a student with severe allergies the epipen would go with him everywhere.

Thank you for your input on private ST. You've given me more to think about.

mamaturtle I'm definitely bring DH along next time for an extra set of ears. He hasn't been involved with any of this so I don't know how helpful he will be, but he should be involved.

[cam]

Feb 21, 2015 12:12:29 GMT -5 Starbuck128 said:

Wow! Thank you for the very informative and supportive responses. I'm going to learn so much here.

cam That is a very good point about how the school is only looking to address his educational needs. I am worried about that too, but also worried about him fitting in and making friends. My BIL is on the spectrum and has several mental health issues. He did not receive any therapy or counseling until he was a teenager. DH remembers BIL was always very aware of how he was different and he became very depressed over it. I thought about it all night, and I still don't know if he needs private ST, but I don't think we would regret pursuing it. I'm tired of questioning whether or not I should be doing more for him.

funchicken

On the plus side, social skills are important educationally for things like interacting in the classroom, navigating lunch and recess, working in groups, etc, so while "fitting in and making friends" isn't an educational need, spin it in a different way and social skills are an educational need, so don't hesitate to advocate for services to address it from that aspect.

As for the FA stuff, that would not sit well with me at all. I hope you can get that straightened out immediately.

[Starbuck128]

Feb 21, 2015 14:30:33 GMT -5 mrsbuttinski said:

Feb 21, 2015 12:12:29 GMT -5 Starbuck128 said:

mrsbuttinski During our ARD meeting we did add an accommodation that DS needs to be given extra time to respond. During his evaluation the speech pathologist noticed that he would often times take 8-9 seconds to respond to her. We've noticed the same thing at home, and so has his gymnastics teacher. You can almost see the wheels in his head turning, and then a few seconds later he will respond. People who aren't familiar with him think he's ignoring them and won't give him the time he needs to respond. Is this similar to what you mean about your son needing extra time to process the day or possibly a sign of a social delay?

DS only has skin reactions to a food if the food has touched his skin. In my experience, most people think skin reactions (hives, redness, swelling) are preliminary signs of an allergic reaction, and without those signs, don't realize a reaction is occurring. Both of us only have internal reactions to ingesting food, like the throat swelling, the quick drop in blood pressure, upset stomach, and sometimes, but not always, vomiting. Because he can't verbalize those reactions, I can tell by the look in his eyes. He starts to look a little out of it first, and then it gets worse. I'm meeting with the school nurse this afternoon and I hope we can get this sorted out. I'm not familiar with a PECS board, but I will look into it. Thanks!

funchicken It's half day preschool and I pack his snack every day. I'm not feeling confident in how the nurse and the overall school district policy handle food allergies, but luckily his teacher and the teacher's aide seem to get it. The teacher wants to Epis in her classroom, and they understand we are trying to teach DS to only accept food from home. I think as long as I get the Epis in the classroom, we may be fine for this year. Next year will probably be a different story, but I'm talking to his allergist about how to handle this. 

dymphna Thank you for sharing your experience with your daughter. DS had 4 different therapists in ECI, and there were two of them he definitely did not respond to and did not learn from. The other two got really quick results from him. It was amazing.

I'm just trying to get his Epis in his classroom right now. His allergist won't sign the school's self carry form for liability reasons, and from what I've heard from other parents is it isn't typical for a child to self carry Epis until 5 or 6 years old. Before then the teachers carry them. Because that's what seems to be the norm in other schools, that's what I am pushing for here. I think a big part of our problem is our allergist is several hours away and not familiar with our school district. Our local pediatric allergist is terrible! It's no wonder the school policies are wonky if most of the parents take their kids to see the local allergist.

cam I like how you think! I'll remember that for the next meeting. Thank you!

[mrsbuttinski]

Starbuck128 Avatar
Feb 21, 2015 at 12:12pm Starbuck128 said:
Is this similar to what you mean about your son needing extra time to process the day or possibly a sign of a social delay?

Very similar. It could be the result a glitch in processing auditory information- DS had a friend with APD and an expressive language delay- she appeared very dull relative to other kids who processed more quickly. Ironically, she's a bright kid who is thriving at Bryn Mawr. When she transferred to private high school after shadowing another student in 8th, the only school that would consider her for enrollment insisted she be part of their "Learning Support Track" because she doesn't seem that bright until you give her some time and space to express herself.

For DS, processing words was no issue, but translating the nonverbal context of the message took longer because of his social delays.



DS only has skin reactions to a food if the food has touched his skin. In my experience, most people think skin reactions (hives, redness, swelling) are preliminary signs of an allergic reaction, and without those signs, don't realize a reaction is occurring. Both of us only have internal reactions to ingesting food, like the throat swelling, the quick drop in blood pressure, upset stomach, and sometimes, but not always, vomiting. Because he can't verbalize those reactions, I can tell by the look in his eyes. He starts to look a little out of it first, and then it gets worse. I'm meeting with the school nurse this afternoon and I hope we can get this sorted out. I'm not familiar with a PECS board, but I will look into it. Thanks!

I react to a couple of foods with anaphylaxis. That's some scary shit.

[funchicken]

Starbuck128, I'm glad the teachers are on your side. With good classroom management they should be able to keep him safe. Snack time at our preschool is very organized, and the kids aren't allowed to share food. I felt better about things once I saw the way they handled it, and the other kids are usually really great, too. Once they know one of their friends has an allergy, they try to be extra careful, too.

Of course once I got comfortable with the preschool it was time to move on to kindergarten. Our school is awesome, but I was a total stress case the summer before kindy started. DD's peanut allergy is a class 6, so I understand how scary it is.

[Starbuck128]

Feb 23, 2015 15:29:47 GMT -5 mrsbuttinski said:

Very similar. It could be the result a glitch in processing auditory information- DS had a friend with APD and an expressive language delay- she appeared very dull relative to other kids who processed more quickly. Ironically, she's a bright kid who is thriving at Bryn Mawr. When she transferred to private high school after shadowing another student in 8th, the only school that would consider her for enrollment insisted she be part of their "Learning Support Track" because she doesn't seem that bright until you give her some time and space to express herself.

For DS, processing words was no issue, but translating the nonverbal context of the message took longer because of his social delays.

I just did some reading on APD and it sounds a lot like DS. With every evaluation and every therapist he has worked with, even if they do give him time to respond, no one is patient enough. They only see a little of what he can do, and he is a very, very smart little guy. It's frustrating when the therapist comes to me and says well he can identify letters S, W, T, N, A and I, and he can count to 10. No, he knows all of his letters, upper and lower case, and he has for a year now, and he can count to 40, and he'd show you if you gave him time instead of rushing him. Every single time, every single therapist!

It looks like APD is diagnosed with slightly older kids, but that's something I'll keep in mind and bring up if it is still a problem in a few years. Thank you for helping put a name to this.

[namastebiotches]

When we were doing private ST, it was half hour sessions. I really didn't feel like it was doing much because by the time he'd come around & cooperate, it was almost over.
But apparently it's the norm here. We stopped going once he entered preschool. He sees a ST there so with that + the settings, he's been making decent progress.

[numbbears]

Welcome. DS is in private therapy for 30 minute sessions and EI for hour sessions. Hope it goes well for him and you get the medication situation settled with the school. That's pretty scary.

[kmc2]

Starbuck128 I know I'm late in responding to this, but just want you to know I understand feeling lonely and overwhelmed by everything, but you are so not alone. It just sucks when you don't have a solid or even decent support system IRL. As well meaning as it may or may not be, it just gets annoying to have to hear time and time again how nothing is wrong with your child and you're blowing it out of proportion. This has been great for me so far here in terms of support, advice, encouragement, information, etc. I hope the same for you! I also hope they have been able to get a better handle on the FA for you guys.

[KC thepouchh8r]

Feb 23, 2015 22:03:56 GMT -5 Starbuck128 said:

Feb 23, 2015 15:29:47 GMT -5 mrsbuttinski said:

Very similar. It could be the result a glitch in processing auditory information- DS had a friend with APD and an expressive language delay- she appeared very dull relative to other kids who processed more quickly. Ironically, she's a bright kid who is thriving at Bryn Mawr. When she transferred to private high school after shadowing another student in 8th, the only school that would consider her for enrollment insisted she be part of their "Learning Support Track" because she doesn't seem that bright until you give her some time and space to express herself.

For DS, processing words was no issue, but translating the nonverbal context of the message took longer because of his social delays.

I just did some reading on APD and it sounds a lot like DS. With every evaluation and every therapist he has worked with, even if they do give him time to respond, no one is patient enough. They only see a little of what he can do, and he is a very, very smart little guy. It's frustrating when the therapist comes to me and says well he can identify letters S, W, T, N, A and I, and he can count to 10. No, he knows all of his letters, upper and lower case, and he has for a year now, and he can count to 40, and he'd show you if you gave him time instead of rushing him. Every single time, every single therapist!

It looks like APD is diagnosed with slightly older kids, but that's something I'll keep in mind and bring up if it is still a problem in a few years. Thank you for helping put a name to this.

At three I could have sworn up and down that dd would eventually be dx with APD. She's made massive gains around this skill in the past year. While I wouldn't say she answer questions 100% of the time she has gotten a million times better.