Special Needs Check-in 7/28

[Brie]

How is everyone doing?  Want to do a SN related yay and boo?

Yay: P grabbed his right foot with his right hand yesterday, more than once!  This is HUGE since that is the side affected by his stroke.  It activates all sorts of nerves and good sensory-inputty stuff and our PT really wanted him to work on it.  I was so excited I texted our PT a picture.

Boo: Met with genetics yesterday.  I was hoping for an unequivocal all-clear, but he did have one soft marker and they did recommend testing (a microarray and craniofacial panel).  It could just as easily be a completely benign, random thing, but better safe than sorry.  And apparently our insurance almost always refuses to cover genetic testing unless it's cancer-related, so it'll be a fight to get it done.

We are still way on the fence about therapeutic preschool and/or having C go as a peer model too.  I think having so much time to decide (he can't start until he's 1 anyway) is making me second guess everything.

laurenh @barefootbarista KaraOrNot @domerjen liveintheville VillainV GotWine NandaB jessnpaul chickenlittle puplove214 longtimenopost @kar MamaMaui24 auntie swank origami @awinter abs hopecounts

[hopecounts]

Yay: DD TOLD me with words that her head was hurting yesterday!

Boo: she had a hard drop off this morning which hasn't happened in a year or so. I think she's stressed because we are House/dog sitting for the ILs and WAY out of our norm. She was signing sad when I left.

[Deleted]

Yay: E took took about 5 independent steps at a time yesterday several times. She was so proud of herself and it was so great to watch.

Both girls are picking up new words quickly. This last week they have added Help, eye, bubble, go, mouth, and some others I can't remember.

Boo: K is still refusing to walk 99% of the time. I don't know what to do. All of the suggestions from the pt aren't working.

[matildasun]

A has always been behind with gross and fine motor skills. She receives services at school, but I just got a referral from my Dr. for outside physical therapy. I am relieved.

[longtimenopost]

Yay: DD is still very interested in standing up and cruising around the coffee table. She doesn't cry as much when she falls and I'm proud of how brave she is! She is tall so when she falls, it's far.

Boo: She really has no use of her left arm and it's hard to watch. When she focuses on cruising, her arm tucks in like a chicken wing and her wrist curls around. I wish she could use it to steady herself.

DH is taking her to get fitted for new orthotics today. I hope they come in quickly!

[jessnpaul]

Yay: He can climb steps really well now! He doesn't even need my help... as long as he has a wall to lean on or a railing to use, he can do it all by himself! He still can't walk up minus the crutch of a wall/rail, but we're getting there!

Boo: He talks, a lot! But I think his mind is faster than his mouth can actually say the words sometimes and he'll stutter... "I need need need (slight pause) Marshall's (Paw Patrol) firetruck!" Not sure if this is a normal 3 year old thing or more delays. This week is his first week without therapies so I'll talk to the preschool when he starts back in September about this.

[hopecounts]

Jul 28, 2015 9:36:01 GMT -5 jessnpaul said:

Yay: He can climb steps really well now! He doesn't even need my help... as long as he has a wall to lean on or a railing to use, he can do it all by himself! He still can't walk up minus the crutch of a wall/rail, but we're getting there!

Boo: He talks, a lot! But I think his mind is faster than his mouth can actually say the words sometimes and he'll stutter... "I need need need (slight pause) Marshall's (Paw Patrol) firetruck!" Not sure if this is a normal 3 year old thing or more delays. This week is his first week without therapies so I'll talk to the preschool when he starts back in September about this.

Stuttering at his age is not at all unusual, keep an eye on it of course but odds are it's just the fairly typical brain working faster then the mouth stage and will pass with no long term issue or needing intervention.

[NandaB]

Jul 28, 2015 9:36:01 GMT -5 jessnpaul said:

Yay: He can climb steps really well now! He doesn't even need my help... as long as he has a wall to lean on or a railing to use, he can do it all by himself! He still can't walk up minus the crutch of a wall/rail, but we're getting there!

Boo: He talks, a lot! But I think his mind is faster than his mouth can actually say the words sometimes and he'll stutter... "I need need need (slight pause) Marshall's (Paw Patrol) firetruck!" Not sure if this is a normal 3 year old thing or more delays. This week is his first week without therapies so I'll talk to the preschool when he starts back in September about this.

My older two typically developing kids both went through this phase a around 2.5 (well one of going through it now). It's totally like their brain and mouth are on two different speeds. For my oldest it was a short phase.

[NandaB]

Yay: Wesley has started solids and it's going really well. I was nervous because I've heard of many kids with Ds who have trouble tolerating anything but the thinnest purees, but he has had no issues with fork mashed banana and avocado!!!

Boo: My previously awesome sleeper has been waking multiple times per night. Boo indeed

[justjen]

Jul 28, 2015 9:36:01 GMT -5 jessnpaul said:

Yay: He can climb steps really well now! He doesn't even need my help... as long as he has a wall to lean on or a railing to use, he can do it all by himself! He still can't walk up minus the crutch of a wall/rail, but we're getting there!

Boo: He talks, a lot! But I think his mind is faster than his mouth can actually say the words sometimes and he'll stutter... "I need need need (slight pause) Marshall's (Paw Patrol) firetruck!" Not sure if this is a normal 3 year old thing or more delays. This week is his first week without therapies so I'll talk to the preschool when he starts back in September about this.

Lucy does this too. Or she actually stutters. I vote normal

[NandaB]

Jul 28, 2015 9:50:33 GMT -5 @barefootbarista said:

Boo: she has this weird habit of asking people who bought their clothes. I'm trying to get her to cut it out because it's weird.

Im sorry,but this is kinda cracking me up. Kids are weird man. Could be worse? My 2 yr old asked a stranger if they needed to go potty once

[jessnpaul]

Thanks to all who told me the stutter is normal. I kinda thought it was but some days seem worse than others!

[chickenlittle]

Yay: DS is so much more active now that it's nice out. I love to see him running and jumping, even if it is clumsy.

Boo: after a second blood draw, results from his thyroid testing are still weird--first his TSH was almost nonexistent and now it's through the roof. Our pedi is sending us to another lab to rule out lab error, and then depending on the results, on to an endocrinologist. We started a gluten free diet with him this week to see if that will help even things out.

[liveintheville]

We're fighting our iep so we can get L into an inclusive kindergarten instead of integrated kindergarten.

[carolinagirl831]

We met with the pediatric Urologist last week for Mia's kidney reflux. He looked at her test results and said he gives her a 5% chance of growing out of it. She is going to be monitored every 3 months to monitor potential kidney damage and she will most likely have surgery around a year to correct it. I was hoping she would be a candidate for a less invasive procedure, but she isn't and this surgery involves a cut similar to a c-section. The DR kept reminding us kids are resilant and heal quickly, it's just more than I was expecting.
I'm grateful we know what the problem is and that it can be corrected

[longtimenopost]

I'm sorry you didn't get better news carolinagirl831. Here's hoping if she needs the surgery, they'll have developed a laproscopic option!

[mrsfarmer]

I finally got a call from the scheduler to get DD1 tested for her birth father's genetic disorder. This will be an initial evaluation but could help us so much in the future if we can find something now or at least lay the groundwork for any additional testing as she gets older.

[GotWine]

Yay- Ds started OT a couple of weeks ago. I really really like this OT. She is the best in our area and has been doing this for over 30 years. I'm starting to see a lot of improvement with his head and neck control. When I'm holding him he can hold his head up and look around for quite a long time before he needs to rest his head on my shoulder again.

He started solids and is doing really well with them. He was kind of iffy with pears, but he can't get enough of the squash. It's such a relief to see him eat with ease after seeing everything else be such a struggle.

He has been able to get onto hands and knees while being supported around his waist. He can hold it for almost a full minute before he face-plants onto the carpet. It's giving me high hopes for crawling.

Boo- His eyes turning in is getting a lot worse. He has appointment in a few weeks with the pediatric ophthalmologist. I'm sure he is going to need a patch and/or glasses. His PT and OT both also mentioned he may need surgery as well.

He still is not showing much interest in playing with toys. He will watch toys, smile as we show him things and babble at them, but he doesn't have much motivation to reach out and grab them. If I move his hand toward a toy he will grab it and bring it to his mouth, but he doesn't seem to be interested in doing that without me intervening. It has me really worried.

[auntie]

Yay!

DS survived a couple days on his own at home. Granted he did eat frozen pizza both nights. He managed to schedule an appointment and get his hair cut without my interfering prompting.

Boo!

Some evil bitch at the railroad where he works smarted off at him when he asked her and her friends to get off the tracks. She told him she didn't have to listen to him because she's autistic. Nice. He was really livid.

[auntie]

Jul 28, 2015 12:45:22 GMT -5 liveintheville said:

We're fighting our iep so we can get L into an inclusive kindergarten instead of integrated kindergarten.

What sort of educational classification does your child have and what services are to be delivered under the IEP?

What's the difference where you are? I find schools can be a little murky, sometimes, in their interpretations of what different classes look like.

DS was in an inclusion class for 6th grade. Our district has a policy that mandates that each student must spend at least 1 year as a peer model in an inclusion class between 1st and 6th.  DS had been mainstreamed in public elementary despite his ASD/ADHD/dyslexia dxs. He did a pull out 2x weekly for social skills/SLT and did his RELA and math with a resource teacher as per his IEP. Between that, the team approach for specials, science and social studies plus his time out of class for instrumental music, he became a guest in the classroom. His classroom teacher didn't get to know him and was not invested in his success. It was a very difficult year.

[KaraOrNot]

Ollie got his G-tube button and it is so nice not to have a huge tube sticking out of his stomach and getting in the way of everything. I do keep forgetting to clamp it and spilling stomach contents everywhere (nasty), so I need to come up w/ a way to remember this.

He is still not eating much, but he loves feeding himself, both with a spoon and with his hands. It is so messy!

We have a birth to three appointment, w/ speech therapy on Friday and then Monday we see an endocrinologist about his thyroid. I think he will be put on meds, but I am hoping it isn't anything too serious.

[VillainV]

Yay: Colin is recovering great from his surgery, and is doing great at cruising and pulling up, and even started crawling up the stairs on his own (yikes!).

Boo: We want to change his PCM to the same group of doctors that will be handling his oncology monitoring as well as his PT and ST, but the military system is giving us a lot of resistance....which means we will be taking it up with the base's patient advocate to see what kind of traction we can get. But so far nothing but the run-around....

[liveintheville]

Jul 28, 2015 14:40:45 GMT -5 @barefootbarista said:

Jul 28, 2015 12:45:22 GMT -5 liveintheville said:

We're fighting our iep so we can get L into an inclusive kindergarten instead of integrated kindergarten.

What is the difference? We don't have integrated as a level of service in Nc.

Integrated is 1/2 special ed and 1/2 non special ed.

[liveintheville]

Jul 28, 2015 18:17:40 GMT -5 auntie said:

Jul 28, 2015 12:45:22 GMT -5 liveintheville said:

We're fighting our iep so we can get L into an inclusive kindergarten instead of integrated kindergarten.

What sort of educational classification does your child have and what services are to be delivered under the IEP?

What's the difference where you are? I find schools can be a little murky, sometimes, in their interpretations of what different classes look like.

DS was in an inclusion class for 6th grade. Our district has a policy that mandates that each student must spend at least 1 year as a peer model in an inclusion class between 1st and 6th.  DS had been mainstreamed in public elementary despite his ASD/ADHD/dyslexia dxs. He did a pull out 2x weekly for social skills/SLT and did his RELA and math with a resource teacher as per his IEP. Between that, the team approach for specials, science and social studies plus his time out of class for instrumental music, he became a guest in the classroom. His classroom teacher didn't get to know him and was not invested in his success. It was a very difficult year.

IEP has 90 minutes speech, 30 minutes OT, 30 minutes PT, and 30 minutes Social Skills. Educational classification is special ed but I'm trying to get it changed to inclusive. That's what the specialist suggested.

[liveintheville]

Jul 29, 2015 10:02:06 GMT -5 @barefootbarista said:

Jul 29, 2015 9:49:01 GMT -5 liveintheville said:

IEP has 90 minutes speech, 30 minutes OT, 30 minutes PT, and 30 minutes Social Skills. Educational classification is special ed but I'm trying to get it changed to inclusive. That's what the specialist suggested.

Daily? Man, northern states do such a better job of providing services. Integrated sounds like a good option to me if he is getting that level of support. 180 min of special Ed and/or related services per day would likely require a more restrictive setting.

Sorry that's all weekly. The speech with be MWF but everything else will be once a week. I can't complain about the services though. Everyone has been very helpful.

[liveintheville]

Jul 29, 2015 10:09:26 GMT -5 @barefootbarista said:

Jul 29, 2015 10:04:39 GMT -5 liveintheville said:

Sorry that's all weekly. The speech with be MWF but everything else will be once a week. I can't complain about the services though. Everyone has been very helpful.

Okay. You know, I think both options are good. What about starting the year in integrated and then moving to inclusive at the midway point if he is doing well? He could probably slide right in to the reg Ed teacher's class.

That's very worth considering. We're headed into August with integrated so far.

[auntie]

Jul 29, 2015 9:49:01 GMT -5 liveintheville said:

Jul 28, 2015 18:17:40 GMT -5 auntie said:

What sort of educational classification does your child have and what services are to be delivered under the IEP?

What's the difference where you are? I find schools can be a little murky, sometimes, in their interpretations of what different classes look like.

DS was in an inclusion class for 6th grade. Our district has a policy that mandates that each student must spend at least 1 year as a peer model in an inclusion class between 1st and 6th.  DS had been mainstreamed in public elementary despite his ASD/ADHD/dyslexia dxs. He did a pull out 2x weekly for social skills/SLT and did his RELA and math with a resource teacher as per his IEP. Between that, the team approach for specials, science and social studies plus his time out of class for instrumental music, he became a guest in the classroom. His classroom teacher didn't get to know him and was not invested in his success. It was a very difficult year.

IEP has 90 minutes speech, 30 minutes OT, 30 minutes PT, and 30 minutes Social Skills. Educational classification is special ed but I'm trying to get it changed to inclusive. That's what the specialist suggested.

Classification would be his educational dx. Autism, Developmental Delay, Speech and Language Impaired, etc.

That level of service delivery could make it hard for him to be truly included. It's frustrating. If this is a half day program, he might not be with typical peers enough to be able to take advantage of them as models. In a situation like this, sometimes a hybrid day is put together with services and a self contained classroom in the AM and a mainstream experience for the PM. 

It sounds like you've done a terrific job of getting IEP services in place. 90 minutes of speech? I'm in a fabulous district and I know kids with apraxia who are practically non-verbal who don't get that plus social skills. Plus OT and PT- wow. That's great. 

Is the specialist making the educational suggestion an educator or is it a developmental physician? I adore DS's old dev pedi and think the world of him. But I try to remember that he is not intimately familiar with DS as a student or with the schools we have available to us. There were a lot of times when his medical opinion was not translatable to the real world or was counter to what DS's psychologist (who is familiar with the local schools and has actually observed DS in several school settings) or myself thought best.

Good luck with your IEP meeting.

[auntie]

Jul 29, 2015 10:09:26 GMT -5 @barefootbarista said:

Jul 29, 2015 10:04:39 GMT -5 liveintheville said:

Sorry that's all weekly. The speech with be MWF but everything else will be once a week. I can't complain about the services though. Everyone has been very helpful.

Okay. You know, I think both options are good. What about starting the year in integrated and then moving to inclusive at the midway point if he is doing well? He could probably slide right in to the reg Ed teacher's class.

Good point.

Another benefit to a special education setting is that the teachers will be more experienced and trained around special needs. Sometimes it makes sense to front-load services in a self contained setting until the child needs less supports and transition them. Another option is for the child going to a fully mainstreamed setting for one or two subjects (reading, art, science, etc) where they do well by virtue of talent or interest.

By middle school it can be hard to guess which 8th graders started kindie in a self contained setting and which have always been mainstreamed. It's not like a child is relegated to one track or another forever by virtue of some permanent record. 

[liveintheville]

Jul 29, 2015 10:14:31 GMT -5 auntie said:

Jul 29, 2015 9:49:01 GMT -5 liveintheville said:

IEP has 90 minutes speech, 30 minutes OT, 30 minutes PT, and 30 minutes Social Skills. Educational classification is special ed but I'm trying to get it changed to inclusive. That's what the specialist suggested.

Classification would be his educational dx. Autism, Developmental Delay, Speech and Language Impaired, etc.

That level of service delivery could make it hard for him to be truly included. It's frustrating. If this is a half day program, he might not be with typical peers enough to be able to take advantage of them as models. In a situation like this, sometimes a hybrid day is put together with services and a self contained classroom in the AM and a mainstream experience for the PM. 

It sounds like you've done a terrific job of getting IEP services in place. 90 minutes of speech? I'm in a fabulous district and I know kids with apraxia who are practically non-verbal who don't get that plus social skills. Plus OT and PT- wow. That's great. 

Is the specialist making the educational suggestion an educator or is it a developmental physician? I adore DS's old dev pedi and think the world of him. But I try to remember that he is not intimately familiar with DS as a student or with the schools we have available to us. There were a lot of times when his medical opinion was not translatable to the real world or was counter to what DS's psychologist (who is familiar with the local schools and has actually observed DS in several school settings) or myself thought best.

Good luck with your IEP meeting.

Oh they only offer integrated classrooms for Kindergarten. So they all get mainstreamed in first grade. I fear I won;t get him in the first grade I want if I wait a year. I'm also unsure how much he'll get out of it for just one year. In theory I have nothing against integrated classes I just didn't get a good vibe from the one he'll be going to. Can't explain just a gut feeling.

[laurenh]

I'm late, oops!

Yay: MRI from last week was wonderful - no signs of tumor regrowth, ventricles are much smaller, and some fluffy brain matter has filled in. Neurosurgeon was very pleased with everything. She is writing a book chapter with Reese's case because of its rarity. She also wrote a journal article advocating for not using ultrasound imaging alone for hydrocephalus because that is how the tumor was missed by Neurosurgeon 1. I hope it makes a difference for someone. We also weaned off 1 daily dose of her seizure med and will hopefully be off by the end of September if all goes well.

Boo: We're still working on physical strength and she is starting to get really frustrated that she can't roll on her own. She will start trying to twist but can't get there yet and it is so hard to watch because it is usually when she is watching Quinn do something. I know it will come, but I just feel a little sad for her right now.