Down syndrome IEP - 8 years (second grade)

First grade was great and my son made a lot of progress. Having fought and resolve some of the important battles in the past years (para-professional support and extended school year), this IEP season was pretty straight forward.

We anticipated a smooth IEP meeting and had no outstanding concerns. Because of this, there is no pre-IEP letter. However, I encourage your to let your IEP team know before the meeting about your concerns and expectations for the meeting. It is a very useful and important practice. After meeting we wait for the first IEP draft, usually within two weeks. If we have any comments, we send them in writing and wait for a new draft. If not we accept and sign the IEP.

For details see:

• parental comments to the proposed IEP draft
• accepted IEP

I'm putting a lot of thought/effort/time into my communication with the team, especially during the IEP season. In fact, I think that spending time getting the plan right it's saving me a lot of time during the school year. There are a couple of books that I found particularly useful during this process.

• Wrightslaw: All About IEPs - pretty much the IEP bible; an incredible useful book, especially if you are just starting this journey. Good to have it as a reference too, because the issues and questions change every year.  
• Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide - one thing we need to understand as parents is that the special education process is driven by data and not by emotion. It is not about the perfect plan, it is not about the best outcome, it is not about reaching the maximum potential. It is about about fair and appropriate services. I think this book does a good job in helping parents understand the difference. 
• Getting to Yes: Negotiating Agreement Without Giving In - amazing book, that I've read several times. Related to how to negotiate without emotion. Putting yourself in the other person shoes and finding the best outcome for everybody. Works in every aspect of our lives. Gives you power and keeps the process  non confrontational. 

Down syndrom IEP - 7 years old (transition to first grade)

We are preparing transition from kindergarten to 1st grade. My son did very well in kindergarten, in big part because, thanks to years of sight reading instruction, he is already reading beyond grade level. This set us up for great expectations in school, so I really encourage you to start teaching sight reading as soon as possible. We started at 4 years old. See more about sight reading here and an update here. 

So back to the IEP. While the IEP meeting went well, the school offered direct services for summer, but refused to offer an inclusive placement for extended school year. In addition, as always, there were a multitude of small things that needed to be changed in the first IEP draft. I can not stress enough how important is to comment on the IEP and to put your comments in writing. The most important piece of advice I've got regarding IEP was "you can ask for anything, the worst it can happen is they will say no".

Before the IEP we sent the team our parental concerns. This is a practice we intend to keep. Letting the team know before the meeting what are our concerns and expectations. Usually two weeks after the meeting we receive the first IEP draft. If we have any comments, we send them in writing and wait for a new draft. If not we accept and sign the IEP.

For details see:

• parental input to 7 years IEP - sent prior to IEP meeting
• parental comments to the proposed IEP draft
• parental request for extended school year (ESY - aka summer services)
• accepted IEP

I'm putting a lot of thought/effort/time into my communication with the team, especially during the IEP season. In fact, I think that spending time getting the plan right it's saving me a lot of time during the school year. There are a couple of books that I found particularly useful during this process.

• Wrightslaw: All About IEPs - pretty much the IEP bible; an incredible useful book, especially if you are just starting this journey. Good to have it as a reference too, because the issues and questions change every year.  
• Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide - one thing we need to understand as parents is that the special education process is driven by data and not by emotion. It is not about the perfect plan, it is not about the best outcome, it is not about reaching the maximum potential. It is about about fair and appropriate services. I think this book does a good job in helping parents understand the difference. 
• Getting to Yes: Negotiating Agreement Without Giving In - amazing book, that I've read several times. Related to how to negotiate without emotion. Putting yourself in the other person shoes and finding the best outcome for everybody. Works in every aspect of our lives. Gives you power and keeps the process  non confrontational.

Down syndrome IEP - 6 years old (transition to kindergarten and public school)

Here we go again. I can't believe a year has passed! My son will repeat kindergarten, but he will move to public school in the fall.

So, here is the IEP process this year at a glance.

• the school did the 3 year evaluation. They proposed evaluating for Speech, OT, PT, Education, and Psychological. We rejected Psychological (it's no mandatory in our state), but asked for Observation of the classroom, Social Pragmatics, and Augmentative communication. 
• we've got the evaluation results which were all over the place: good reading skills, poor math, good receptive language, poor expressive language.
• a meeting was scheduled to discuss the evaluation. We did not expect this, but this meeting ended up being the actual IEP meeting. I'm not sure if this is how is supposed to happen. Because of this we did not get the chance to send our usual pre-IEP document. The meeting was good, except when we asked for extra support for my son in the classroom. The school proposed placement in an inclusion classroom with a teacher and a classroom paraprofessional. We also requested 1:1 support from a special education paraprofessional. The school said no. They did however offered 1:1 transition support outside classroom (lunch, specials, recess)
• we received the first IEP proposal. In terms of services my son will get 3x30 speech, 2x45 PT, 3x30 OT, 2x30 direct teaching math support, 1x30 direct teaching reading.
• we sent our comments to the IEP and again asked for special ed paraprofessional support. The school again said no. We partially rejected the IEP. At this point we really believed that our son needed at least 1:1 support during academics especially writing and math. We hired an advocate (for the first time) and scheduled a new meeting with the school. I think our requests were completely reasonable and supported by the evaluation reports, which really showed my son behind in the areas we asked for additional support. The school agreed to 1:1 during academic instruction, around 10-15 hours per week.

So, in September my son will start Kindergarten placed in an inclusion classroom with at most 20 kids (at most 5 on IEP). There will be a teacher, a part-time classroom paraprofessional (morning to noon) and a full-time special education paraprofessional which will offer 1:1 support during academic activities and transitions outside the classroom.

All in all, the process, which took 6 months from start to finish, was very stressful but I think we are in good shape for our first year in public school. 

Agreed upon Service Delivery

Speech Therapy - 3x30min/week

Physical Therapy - 2x45min/week

Occupational Therapy - 3x30min/week

Math Direct Teaching - 2x30min/week

Literacy Direct Teaching - 1x30min/week

Our usual IEP process - Before the IEP we sent the team our parental concerns. This is a practice we intend to keep. Letting the team know before the meeting what are our concerns and expectations. Usually two weeks after the meeting we receive the first IEP draft. We send our comments and requests for modifications in writing. If they can be addressed without a meeting, we receive a second IEP draft. This iteration receive draft/comment on draft continues until we accept the IEP.

See:

• parental input to 6 years/kindergarten IEP - sent prior to IEP meeting. We argue for para-professional support.
• accepted IEP
• parental comments to IEP draft - send after we received the first draft
• letter of partial rejection after the school refused to provide para-professional support

I'm putting a lot of thought/effort/time into my communication with the team, especially during the IEP season. In fact, I think that spending time getting the plan right it's saving me a lot of time during the school year. There are a couple of books that I found particularly useful during this process.

• Wrightslaw: All About IEPs - pretty much the IEP bible; an incredible useful book, especially if you are just starting this journey. Good to have it as a reference too, because the issues and questions change every year.  
• Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide - one thing we need to understand as parents is that the special education process is driven by data and not by emotion. It is not about the perfect plan, it is not about the best outcome, it is not about reaching the maximum potential. It is about about fair and appropriate services. I think this book does a good job in helping parents understand the difference. 
• Getting to Yes: Negotiating Agreement Without Giving In - amazing book, that I've read several times. Related to how to negotiate without emotion. Putting yourself in the other person shoes and finding the best outcome for everybody. Works in every aspect of our lives. Gives you power and keeps the process  non confrontational.

Sight reading update

My son is 6 years old. As I've mentioned a long time ago, we have been teaching my son sight reading. It was a very long journey since we started 2 years ago, but my son is doing amazingly well. He is currently (sight) reading level B books. So, please, know it works. It takes time and for the first year we have been practicing every single evening. Usually for no more than 5 to 10 minutes. These days we are aiming for one or two books every day.

We recently had our 3 year evaluation (part of the IEP process) and my son scored in 90 percentile for word recognition. How cool is that? The IEP team was truly impressed - the 6 year IEP coming soon! This couldn't have come at a better time as we are transitioning to public school kindergarten.

Check out Natalie Hale's book: Down Syndrome Parenting 101: Must-have advice for making your life easier. She does a really good job explaining why sight reading is important for our children. Teaching my son to read at a very young age was probably the best thing we did for his education so far. 

Here is what worked for us:

• the Down syndrome learning program strategies - match, name, select. The materials are free and they work!
• the "Special Words" app, based on the same match, name, select strategy. Many of the same words from the DS learning program materials.
• practice, practice, practice! Every day for almost two years.
• we graduated from the learning program materials to Scholastic leveled books: First little readers level A, First little readers level B, soon to start First little readers level C. 

Down syndrome IEP - 5 years old

We had a good IEP meeting. Our son made a lot of progress in all areas of development. We are really very proud of him. The main concern is his expressive language. He has definitely made progress, but expressive language is way behind receptive language, cognition, social skills, gross and fine motor skills. It breaks my heart to see him so eager to communicate and so frustrated with the results.  Mostly he uses a combination of spoken words and signs. At home he is more than able to let us know what he wants, to make comments about what’s going around, to negotiate more TV and extra ice cream, to be silly and funny. We understand about half of his speech. Strangers have a very hard time understanding him and communication with peers is hopeless. We probably made a mistake last year agreeing to pull out sessions for a big chunk of his speech therapy. He made progress in structured sessions, but progress did not translate to class skills. On top of that, even when he makes attempts to communicate in class he mostly whispers.

So, a couple of decisions: (1) he will start kindergarten in the fall, (2) he will spend two years in kindergarten (our decision, he barely makes the cutoff as it is and we want him to really improve his speech before school), (3) all speech service in class, (4) speech activities will involve peers on a rotation basis, (5) additional consultation between speech therapist and educators. 

For his receptive language goal it was decided to work on similar objectives like last year, but this time targeting spontaneous language rather than language in structured activities. If you look at the last year IEP, the expressive language goal explicitly states that language progress is targeted in structured activities. It annoys me that we did not catch this; it seems almost like a trap.  

There is no post IEP communication because we did not have a lot of comments. The IEP was very close to what was discussed during the meeting – we had some email communication and requested small changes which required the school to compile and send a new draft, but it was mostly straightforward. However, post IEP communication is very important, so take a look to the one from last year, when we had more serious issues with what was proposed. 

Again, there are no academic goals, still out-of-district placement. See a previous explanation here. However, you can get an idea of how academic goals might look like for a 5 years old by looking at our parental input to the IEP linked below.

Before the IEP we sent the team our parental concerns. This is a practice we intend to keep. Letting the team know before the meeting what are our concerns and expectations. Usually two weeks after the meeting we receive the first IEP draft. If we have any comments, we send them in writing and wait for a new draft. If not we accept and sign the IEP.

For details see:

• parental input to 5 years/kindergarten IEP - sent prior to IEP meeting
• accepted IEP

I'm putting a lot of thought/effort/time into my communication with the team, especially during the IEP season. In fact, I think that spending time getting the plan right it's saving me a lot of time during the school year. There are a couple of books that I found particularly useful during this process.

• Wrightslaw: All About IEPs - pretty much the IEP bible; an incredible useful book, especially if you are just starting this journey. Good to have it as a reference too, because the issues and questions change every year.  
• Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide - one thing we need to understand as parents is that the special education process is driven by data and not by emotion. It is not about the perfect plan, it is not about the best outcome, it is not about reaching the maximum potential. It is about about fair and appropriate services. I think this book does a good job in helping parents understand the difference. 
• Getting to Yes: Negotiating Agreement Without Giving In - amazing book, that I've read several times. Related to how to negotiate without emotion. Putting yourself in the other person shoes and finding the best outcome for everybody. Works in every aspect of our lives. Gives you power and keeps the process  non confrontational.

Down syndrome - articulation test 3

Articulation evaluation - 5 years.

In addition to the speech therapy offered by the public school, my son also gets private speech therapy once a week for 30 minutes. We started when he was 2 years old. These sessions focus exclusively on articulation and intelligibility.

Here is the third report. You may also want to see the previous two reports here and here.
 

The STUDENT was re-administered the Goldman Fristoe Test of Articulation-2nd Edition (GFTA-2) to assess his production of speech sounds in single words. Standard scores between 85-115 are considered within normal limits for age. The STUDENT's standard score of 82 (14%ile rank) indicates that his speech sound skills remain below normal limits in single words, but significant improvement was observed

Discussion of test and re-test comparison:

• The STUDENT continues to produce speech-sound patterns that are typical for his developmental age include gliding (W/R, Y/L), as well as, D for voiced TH and F for voiceless TH.
• He has improved in his ability to produce SH, CH and J, nearly resolving the patterns of palatal fronting and deaffrication.
• The STUDENT has made progress with consonant blend reduction as he mostly produces consonant blend simplification which is more typical for his age (W for R-blends); most of the L-blends are produced accurately except for FL ("plowers"/flowers), and W for L in GL and KL ("gwasses"/glasses and "kwown"/clown).
• He no longer uses fronting (N/NG) or stopping (D/S).
• The STUDENT no longer omits sounds (his previous omissions included- F (kni/knife), TH (umb/thumb).
• He used to produce sounds that were unusual as in M/GL (masses/glasses), S/DR (sum/drum), Z/SW(zimmin/swimming), and this was not observed today.
• Assimilation within words and across words had less of an influence on the variability of his sound production. A typical example of assimilation from last year was "guk"/duck and "giga"/finger. This year, the only example of assimilation was "shishing"/fishing.
• The STUDENT continues to distort S and Z and other tongue tip sounds due to exaggerated forward tongue movement.
• Testing today included story retelling included in the GFTA-2; The STUDENT spontaneously produced single words and some phrases to describe the pictures and actions.
• The STUDENT was able to name all items on this test accurately and immediately; overall, his mother reported that The STUDENT's vocabulary is impressive.

In summary, The STUDENT has made good progress over the past few months, and his speech progress has outpaced what would have been expected from developmental progression of sound system development. This is especially in evidence when considering that he made changes from atypical (disordered) sound production to more developmental (delayed) pattern.

It is recommended that The STUDENT continue therapy to address speech sound practice within expanding utterance length. Mother reported that The STUDENT may benefit from cueing from reading and sign language.

Down syndrome apnea - sleep study 3

Six months after tonsillectomy and adenoidectomy (T&A) my son was still having mild apnea (see second sleep study here). With our ENT doctor, we decided to wait and monitor apnea. Here we go again, third sleep study one year after the last study, and 18 months after the T&A.

We had our third sleep study in February 2013.

So, the results of our third sleep study. Not so mild anymore. Apnea-hypopnea index went up again from  2.7  to 6.3 per hour. The good news - normal REM, normal sleep pattern, baseline oxygenation above 90% at all times. We were told there is a good chance the adenoids have grown back - we have to go to the ENT to check for this. Meanwhile we need to do something about the apnea. Apparently we can still get away with refusing CPAP (the apnea is still considered mild), but we were offered either nasal steroids (Flonase) or some asthma medication (Singulair). None of the choices are great - Flonase may affect growth, Singulair may affect behaviour. I happen to take Flonase on a regular bases for my chronic rhinitis, so we were slightly more comfortable with using Flonase. We've been using Flonase for a month now. As I mentioned, my son's apnea is pretty asymptomatic so we don't see a lot of changes. But he sleeps well, definitely better than before the T&A.

Total Recording Time (TRT):   486.6min.

Total Sleep Time (TST):          426.0min.

Sleep Efficiency Index (TST/TRT): 87.6 %

Sleep Latency:     48.5min.

REM Latency:     195.5min

Wake after Sleep Onset: 11.0min

Total Arousals: 169

Arousal Index: 23.8/hour

Sleep Stages

Stage 1 Minutes   32.0 %TST    7.5     Normal %TST 5-10

Stage 2 Minutes 170.0 %TST 39.9     Normal %TST 45-55

Stage 3,4 Minutes   126.5     %TST    29.7     Normal %TST 10-15

Stage REM Minutes   97.5.0 %TST    22.9     Normal %TST 20-25

Respiratory Events

Obstructive Apnea number 1

Obstructive Hypopnea number 44

Mixed Apnea number 1

Central Apnea number 7

Apnea-Hypopnea Index : 6.3/hour

 

Down syndrome apnea - CPAP or no CPAP

At this point my son has mild apnea, with no symptoms. He sleeps well, has no behavioral issues, good developmental progress. Sleep apnea is a very serious condition that needs to be addressed aggressively, I totally believe that. For many CPAP is the best and only solution. However, we were offered CPAP and refused. Again I'm not a doctor (just a parent obsessing over issues), but I'm worried about long term use of CPAP in children (maybe even adults) with DS. The best I can explain it is this: my son has some degree of facial hypotonia. CPAP is a device fitted snugly on the face - basically pushing on the muscle, bones, etc. And, because of poor muscle tone, nothing pushes back. I'm afraid that long term this will have an impact on his teeth, on face bones, on skull.

And just to show you this is not a crazy idea.

Craniofacial changes after 2 years of nasal continuous positive airway pressure use in patients with obstructive sleep apnea.

Journal: Chest
Article published: 2010 Oct;138(4):870-4.

Tsuda H, Almeida FR, Tsuda T, Moritsuchi Y, Lowe AA

Abstract

BACKGROUND: Many patients with obstructive sleep apnea (OSA) use nasal continuous positive airway pressure (nCPAP) as a first-line therapy. Previous studies have reported midfacial hypoplasia in children using nCPAP. The aim of this study is to assess the craniofacial changes in adult subjects with OSA after nCPAP use.

METHODS: Forty-six Japanese subjects who used nCPAP for a minimum of 2 years had both a baseline and a follow-up cephalometric radiograph taken. These two radiographs were analyzed, and changes in craniofacial structures were assessed. The cephalometric measurements evaluated were related to face height, interarch relationship, and tooth position.

RESULTS: Most of the patients with OSA were men (89.1%), and the mean baseline values for age, BMI, and apnea-hypopnea index (AHI) were 56.3 ± 13.4 years, 26.8 ± 5.6 kg/m(2), and 42.0 ± 18.6/h. The average duration of nCPAP use was 35.0 ± 6.7 months. After nCPAP use, cephalometric variables demonstrated a significant retrusion of the anterior maxilla, a decrease in maxillary-mandibular discrepancy, a setback of the supramentale and chin positions, a retroclination of maxillary incisors, and a decrease of convexity. However, significant correlations between the craniofacial changes, demographic variables, or the duration of nCPAP use could not be identified. None of the patients self-reported any permanent change of occlusion or facial profile.

CONCLUSION: The use of an nCPAP machine for > 2 years may change craniofacial form by reducing maxillary and mandibular prominence and/or by altering the relationship between the dental arches.

Down syndrome apnea - sleep study 2

Six months after tonsillectomy and adenoidectomy my son was scheduled for a second sleep study. In children with DS is not uncommon for apnea to persist after T&A.

We had our second sleep study in February 2012.

So, the results of our second sleep study. Apnea-hypopnea index went down from 7 to 2.7 per hour. Good, but this is still apnea. The REM got way up. This is great. At this point we were given the option of waiting and monitoring the apnea, or considering CPAP (continuous positive airway pressure). We politely refused CPAP and are scheduled for the third sleep study soon.

Total Recording Time (TRT):   509.8min.

Total Sleep Time (TST):          404.5min.

Sleep Efficiency Index (TST/TRT): 79.5 %

Sleep Latency:     15.5min.

REM Latency:     198.5min.

Wake after Sleep Onset: 88.5min.

Total Arousals: 101

Arousal Index: 15.0/hour

Sleep Stages

Stage 1        Minutes   69.0     %TST    17.1     Normal %TST      5-10

Stage 2        Minutes   136.0   %TST    33.6     Normal %TST    45-55

Stage 3,4     Minutes   70.5     %TST    17.4     Normal %TST    10-15

Stage REM  Minutes   129.0   %TST    31.9     Normal %TST    20-25

Respiratory Events

Obstructive Apnea          number 0

Obstructive Hypopnea    number 17, average duration (sec) 10.6

Mixed Apnea                 number 0

Central Apnea                number 1

Apnea-Hypopnea Index : 2.7/hour

Respiratory Effort Related Arousals (RERA): 16

RespiratOry Disturbance Index «apneas+hypopneas+RERA)/TST): 5.0/hour

Oxygen saturation awake: 97%

Nadir oxygen saturation during sleep: 84%

End-Tidal C02 awake: 39.6

End-Tidal C02 asleep peak: 48.7

Percentage of time with End-Tidal C02> 52mmHg: 0.0

Periodic Leg Movements:

Periodic Limb Movements with arousals: 0

Periodic Limb Movements : 0

Electrocardiographic Monitoring: Average heartrateasleep: 87

Down syndrome apnea - tonsillectomy and adenoidectomy

Two weeks after our sleep study we were scheduled for a T&A (August 2011). In preparation for the surgery we had a cervical XRay to check the atlanto-dens interval. It was within normal limits. It is really important for the anesthesiologist to know if it's safe to extend the neck during the surgery and to be on alert for possible complications due to the muscle relaxing effects of anesthesia. Seriously, there was an article published about two weeks ago about a 7 years old boy (did not have DS) who had undiagnosticated  atlanto-axial instability and who developed quadriplegia after an elective surgery to remove his tonsils and adenoids. We were told by our ENT and the anesthesiologist that even with the normal results, they will still be very careful and will operate with the neck in neutral position.

Our surgery was short and painless. The recovery was everything but. We spend the night in the hospital, which is standard procedure for children with documented apnea - they have too much air all of the sudden and apparently that's not good either. The insurance did not want to approve the stay, but our ENT (which we love) send them a bunch of literature and convinced them.

So, about the recovery. The pain lasts 10 days. It's not like there is a lot of pain in the first days and then is gets better and better. No, the pain lasts 10 days. I highly recommend around the clock medication - we alternated ibuprofen and Tylenol every 3 hours. I know that some surgeons do not recommend ibuprofen for fear of bleeding, likely ours did - Tylenol alone just doesn't cut it. Don't worry if and what your child eats. He needs to drink. Ice cream was our friend. A really nice tip we got from the blog below was to use Tylenol suppositories during the night. It really helps if you do not have to wake the child. Remember, around the clock means around the clock - we set the alarm in the middle of the night.

After the recovery was over - sleep improved a lot. No more waking in the middle of the night. Tongue protrusion  which is an ongoing issue for us, got so much better, almost immediately after surgery.

This blog is the best source of mom advice post T&A. Great tips.

Down syndrome apnea - sleep study 1

We are very lucky that my son is very healthy and he doesn't have the problems associated with DS. Except for sleep apnea. It was always an issue. He had apnea of prematurity at birth. For the longest time every time we mentioned to our pediatrician that something is off with my son's sleep our worries were kind of brushed off. Finally, when my son was 3 years old, we had our first sleep study. It is not a pleasant experience - not for the child and not for the parent. It turned out that my son had moderate apnea. In terms of his symptoms - he did not snore, he was not tired during the day, he was sleeping in a weird position with the neck super-extended, and he was waking a lot during the night.

We had our first sleep study in August 2011.

So, the results of our first sleep study. I'm not a doctor, but apnea-hypopnea index 7/hour is not good (most doctors think 1 is too much in children). Also, the sleep pattern is completely off. He spends 4.5% of this sleep time in REM compared to 20-25% normal. This is the stage when he dreams, when his mind is supposed to really relax, when everything he learned gets stored in long term memory (or something like this) - it's really important. Conclusion - tonsillectomy and adenoidectomy, or T&A.

Total Recording Time (TRT):   518.8min.

Total Sleep Time (TST):          422.5min.

Sleep Efficiency Index (TST/TRT): 81.8 %

Sleep Latency:     7.5min.

REM Latency:     212.5min.

Wake after Sleep Onset: 86.5min.

Total Arousals: 88

Arousal Index: 12.5/hour

Sleep Stages

Stage 1        Minutes   54.5     %TST    12.9     Normal %TST      5-10

Stage 2        Minutes   246.0   %TST    58.2     Normal %TST    45-55

Stage 3,4     Minutes   103.0   %TST    24.4     Normal %TST    10-15

Stage REM  Minutes   19.0     %TST      4.5     Normal %TST    20-25

Respiratory Events

Obstructive Apnea          number 2, average duration (sec) 10.5

Obstructive Hypopnea    number 47, average duration (sec) 12.1

Mixed Apnea                 number 0

Central Apnea                number 0

Apnea-Hypopnea Index : 7.0/hour

Respiratory Effort Related Arousals (RERA): 19

RespiratOry Disturbance Index «apneas+hypopneas+RERA)/TST): 9.7/hour

Oxygen saturation awake: 93%

Nadir oxygen saturation during sleep: 83%

End-Tidal C02 awake: 33.0

End-Tidal C02 asleep peak: 50.1

Percentage of time with End-Tidal C02> 52mmHg: 0.0

Periodic Leg Movements:

Periodic Limb Movements with arousals: 0

Periodic Limb Movements : 0

Electrocardiographic Monitoring: Average heartrateasleep: 95

Down syndrome - articulation test 2

Articulation evaluation - 4 years and 6 months.

In addition to the speech therapy offered by the public school, my son also gets private speech therapy once a week for 30 minutes. We started when he was 2 years old. These sessions focus exclusively on articulation and intelligibility.

Here the second report. You may also want to see the previous articulation evaluation at 4 years.

The Goldman Fristoe Test of Articulation-2nd Edition (GFTA-2) was re-administered to assess the STUDENT's production of speech sounds in single words. He was initially administered the test in June 2012.

Standard scores between 85-115 are considered within normal limits for age. the STUDENT's standard score of 83 (previous score was 78), 14%ile rank (previous was 10%ile rank) indicates that his speech sound skills are below normal limits in single words, but that there has been improvement.

The STUDENT's speech intelligibility in single words and connected speech is reduced. This clinician understands him about 60% of the time when the context is shared. It was notable that many of his word approximations do not seem to vary as much as in the past with repeated attempts.

In general, the STUDENT's speech sound system has improved and matured; more of his speech-sound errors fall within typical and developmental errors versus atypical errors.

Some age typical differences speech-sound patterns include gliding (W/R, Y/L), palatal fronting (S for SH, TS/CH, D/J), deaffrication (TS/CH, D/J), consonant blend reduction (K/KW, T/ST, B/BR), fronting (N/NG), stopping (D/S) and D for voiced TH and F for voiceless TH.

The speech-sound differences that remain atypical are, N/V in vacuum (previous was M/V), H/F (initial and medial), and omitting syllables ("banna"/banana), but far fewer than the initial test.

Assimilation within words and across words appeared to be less of an influence on the variability of his sound production. He now says "duck" accurately and "hinger"/finger, as well as "pencil" which use to be "mencil".

Improvement seemed to be mostly within the consonant blend category, including, TL for SL (previous S/SL), KR (previous was K/KR), GR (previous was G/GR), PL/FL (previous was F/FL), F/FR (previous was W/FR), PL (previous was P/PL), SP (previous was P/SP), TL/TR (previous was T/TR), G/GL (previous was M/GL), D/DR (previous was S/DR), and SW (previous was Z/SW). The STUDENT now includes final F in "off" and "knife"; he now approximates initial TH with P (previously omitted TH).

The STUDENT's mother reported that he sometimes blocks when beginning sentences; this is intermittent and may be related to motor speech or language formulation issues.The STUDENT's utterance length has increased and his intelligibility is negatively impacted by impreciseness and poor pacing of talking in addition to multiple speech sound errors.The STUDENT's mother reported that he does not always generalize sounds from his speech practice to conversation. This will be monitored and addressed in therapy.

In summary, the STUDENT has made good progress over the last 6 months. It is recommended the STUDENT's speech and language therapy continue to address speech intelligibility difficulties. Therapy goals should use a cycles approach to remediate F, V, CH, SH, J, FR, and FL, in addition to pacing of sentences and spontaneous conversation.

Down syndrome - articulation test 1

Articulation evaluation - 4 years old.

In addition to the speech therapy offered by the public school, my son also gets private speech therapy once a week for 30 minutes. We started when he was 2 years old. These sessions focus exclusively on articulation and intelligibility.

Here is the first report. A six month follow-up is available here.

The STUDENT was administered the Goldman Fristoe Test of Articulation-2nd Edition (GFTA-2) to assess his production of speech sounds in single words. Standard scores between 85-115 are considered within normal limits for age. The STUDENT's standard score of 78 (10%ile rank) indicates that his speech sound skills are below normal limits in single words.

The STUDENT's speech intelligibility in single words and connected speech is reduced. This clinician understands him about 50% of the time when the context is shared. It was notable that many of his word approximations seemed to vary with his repeated attempts.

The STUDENT's speech-sound development reflects some age typical differences and some atypical differences. The STUDENT's speech-sound patterns that are typical for his developmental age include gliding (W/R, Y/L), palatal fronting (S for SH, TS/CH, D/J), deaffrication (TS/CH, D/J), consonant blend reduction (T/ST, S/SL, K/KR, G/GR, W/FR, B/BR, F/FL, T/TR, P/SP, P/PL), fronting (N/NG), stopping (D/S) and D for voiced TH and F for voiceless TH. Some of his speech-sound differences were atypical, such as, M/V in vacuum, H/F (telephone), omit F (kni/knife), omit TH (umb/thumb), M/GL (masses/glasses), S/DR (sum/drum), Z/SW(zimmin/swimming), omit syllables ("mena"/banana).

Assimilation within words and across words appeared to be an influence on the variability of his sound production. A typical example of assimilation is "guk"/duck and "giga"/finger. Yet, he said "macuum"/vacuum as an example of within-word atypical assimilation and "gis" for this and "mencil" for pencil, which might have been a between-words assimilation.

Imitation sometimes helped his accuracy of word production. He uses techniques learned in speech therapy sessions, such as some touch cues and exaggerated oral movements.
It is recommended The STUDENT's speech and language therapy continue to address speech intelligibility difficulties. In addition to working on F and V, therapy goals should address word production consistency, multisyllable words (include all syllables in 3 syllable words), and some early developing blends (KW, and L-blends).

Down syndrome IEP - 4 year old

Well, the big boy is 4 years old. He did great with his goals last year. Time for a new IEP. Again, there are no academic goals, still out-of-district placement. See a previous explanation here. However, you can get an idea of how academic goals might look like for a 4 years old by looking at our parental input to the IEP linked below.

Compared to last year, two more speech and language goals were added and the speech service was increased from 2x30min to 2x45min per week.

Agreed upon Service Delivery
Speech Therapy - 2x45min/week
Physical Therapy - 2x30min/week
Occupational Therapy - 2x45min/week

Before the IEP we sent the team our parental concerns. This is a practice we intend to keep. Letting the team know before the meeting what are our concerns and expectations. Usually two weeks after the meeting we receive the first IEP draft. We send our comments and requests for modifications in writing. If they can be addressed without a meeting, we receive a second IEP draft. This iteration receive draft/comment on draft continues until we accept the IEP.

See:

• parental input to 4 years IEP - sent prior to IEP meeting
• accepted IEP
• parental comments to IEP draft - these requests are usually reflected in the accepted IEP 

I'm putting a lot of thought/effort/time into my communication with the team, especially during the IEP season. In fact, I think that spending time getting the plan right it's saving me a lot of time during the school year. There are a couple of books that I found particularly useful during this process.

• Wrightslaw: All About IEPs - pretty much the IEP bible; an incredible useful book, especially if you are just starting this journey. Good to have it as a reference too, because the issues and questions change every year.  
• Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide - one thing we need to understand as parents is that the special education process is driven by data and not by emotion. It is not about the perfect plan, it is not about the best outcome, it is not about reaching the maximum potential. It is about about fair and appropriate services. I think this book does a good job in helping parents understand the difference. 
• Getting to Yes: Negotiating Agreement Without Giving In - amazing book, that I've read several times. Related to how to negotiate without emotion. Putting yourself in the other person shoes and finding the best outcome for everybody. Works in every aspect of our lives. Gives you power and keeps the process  non confrontational.

Down syndrome IEP - 3 years old

When my son was 3 years old and transitioned from early intervention to public school, I've searched the internet for some guidelines on how his first IEP should look like. I was lucky to see the IEP of a couple of friends (with children with DS) and get an idea. Obviously, as the name says, the IEP is a highly individualized document, each child has different needs. This is merely to give you an idea how it might look. The IEP is a long, detailed document - here are some selected sections. I have edited out my son's name and replaced it with "the student". Hopefully, that doesn't sound too weird...

You will notice there are no academic goals and normally there should be. However, my son has an out-of-district placement in a full time, fully inclusive private preschool, as opposed to the silly, 3 hours a day / 3 days a week program available in our district. Per our agreement, the public school is responsible for my son's therapy, but not for his academic development. However, you can get an idea of how academic goals might look like for a 3 years old by looking at our parental input to the IEP linked below.

Agreed upon Service Delivery
Speech Therapy - 2x30min/week
Physical Therapy - 2x30min/week
Occupational Therapy - 2x45min/week

Before the IEP we sent the team our parental concerns. This is a practice we intend to keep. Letting the team know before the meeting what are our concerns and expectations. Usually two weeks after the meeting we receive the first IEP draft. If we have any comments, we send them in writing and wait for a new draft. If not we accept and sign the IEP.

For details see:

• parental input to 3 years IEP - sent prior to IEP meeting
• accepted IEP

I'm putting a lot of thought/effort/time into my communication with the team, especially during the IEP season. In fact, I think that spending time getting the plan right it's saving me a lot of time during the school year. There are a couple of books that I found particularly useful during this process.

• Wrightslaw: All About IEPs - pretty much the IEP bible; an incredible useful book, especially if you are just starting this journey. Good to have it as a reference too, because the issues and questions change every year.  
• Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide - one thing we need to understand as parents is that the special education process is driven by data and not by emotion. It is not about the perfect plan, it is not about the best outcome, it is not about reaching the maximum potential. It is about about fair and appropriate services. I think this book does a good job in helping parents understand the difference. 
• Getting to Yes: Negotiating Agreement Without Giving In - amazing book, that I've read several times. Related to how to negotiate without emotion. Putting yourself in the other person shoes and finding the best outcome for everybody. Works in every aspect of our lives. Gives you power and keeps the process  non confrontational.

Research article - effect of low dose curcumin

Low dose of bio-available curcumin (80mg curcumin, equivalent of 1 Longvida® Optimized Curcumin pill) has statistically significant effect on blood and saliva markers. This is great news for mothers like me - I was never comfortable with giving my son high doses of curcumin, but I also wondered if low doses have any effect. Apparently they have. This is not to say that low dose of curcumin is guaranteed to have positive effect on neurodegenerative disorders, but still this study is a good start.

We stopped curcumin about 6 months ago because of drooling issues. I am tempted to start again. This is the curcumin we used.

Diverse effects of a low dose supplement of lipidated curcumin in healthy middle
aged people

Journal: Nutrition
Article first published online: 26 SEPT 2012 (doi: 10.1186/1475-2891-11-79) 

Robert A DiSilvestro, Elizabeth Joseph, Shi Zhao, Bomser Joshua

Abstract

Background - Curcumin extracts of turmeric are proposed to produce health benefits. To date, human
intervention studies have focused mainly on people with existing health problems given high
doses of poorly absorbed curcumin. The purpose of the current study was to check whether in
healthy people, a low dose of a lipidated curcumin extract could alter wellness-related
measures.

Methods - The present study was conducted in healthy middle aged people (40–60 years old) with a low
dose of curcumin (80 mg/day) in a lipidated form expected to have good absorption. Subjects
were given either curcumin (N = 19) or placebo (N = 19) for 4 wk. Blood and saliva samples
were taken before and after the 4 weeks and analyzed for a variety of blood and saliva
measures relevant to health promotion.

Results - Curcumin, but not placebo, produced the following statistically significant changes: lowering
of plasma triglyceride values, lowering of salivary amylase levels, raising of salivary radical
scavenging capacities, raising of plasma catalase activities, lowering of plasma beta amyloid
protein concentrations, lowering of plasma sICAM readings, increased plasma
myeloperoxidase without increased c-reactive protein levels, increased plasma nitric oxide,
and decreased plasma alanine amino transferase activities.

Massage therapy benefits

After too long a pause, we restarted giving my son massages. There is so much research showing the benefits of massage therapy for children.

Children with Down syndrome improved in motor functioning and muscle tone following massage therapy
Journal: Early Child Development and Care
Available online 25 Jun 2007 (doi: 10.1080/03004430500105233)
Maria Hernandez-Reif et al.

Abstract
Twenty‐one moderate to high functioning young children (mean age, two years) with Down syndrome receiving early intervention (physical therapy, occupational therapy and speech therapy) were randomly assigned to additionally receive two 0.5‐hour massage therapy or reading sessions (control group) per week for two months. On the first and last day of the study, the children’s functioning levels were assessed using the Developmental Programming for Infants and Young Children scale, and muscle tone was assessed using a new preliminary scale (the Arms, Legs and Trunk Muscle Tone Score). Children in the massage therapy group revealed greater gains in fine and gross motor functioning and less severe limb hypotonicity when compared with the children in the reading/control group. These findings suggest that the addition of massage therapy to an early intervention program may enhance motor functioning and increase muscle tone for children with Down syndrome.

Massage therapy by parents improves early growth and development
Journal: Infant Behavior and Development
Available online 11 September 2004 (http://dx.doi.org/10.1016/j.dr.2005.12.002)
Tiffany Field et al.

Abstract
This study assessed the effects of moderate and light pressuremassage on the growth and development of young infants. A recent study by Diego, Field, Sanders, and Hernandez-Reif (2004) showed that persons who were given moderate pressuremassage, as compared with persons who received light massage or vibratory stimulation, experienced a decrease in heart rate, EEG changes associated with a relaxation response and positive affect, and the greatest decrease in stress. In the present study, mothers were instructed to massage their newborn infants once per day using either light or moderate pressure. The infants’ growth (i.e., weight, length, head circumference), sleep behavior, and performance on the Brazelton scale were assessed soon after birth and at one month of age. As compared to infants who received a light pressuremassage, infants in the moderate pressure group gained more weight, were greater length, performed better on the orientation scale of the Brazelton, had lower Brazelton excitability and depression scores, and exhibited less agitated behavior during sleep.

Preschool children's sleep and wake behavior: effects of massage therapy
Journal: Early Child Development and Care

Available online 7 Jul 2006 (doi: 10.1080/0300443961200104)
Tiffany Field et al.

Abstract
Preschool children received 20‐minute massages twice a week for five weeks. The massaged children as compared to children in the wait‐list control group had better behavior ratings on state, vocalization, activity and cooperation after the massage sessions on the first and last days of the study. Their behavior was also rated more optimally by their teachers by the end of the study. Also, at the end of the 5 week period parents of the massaged children rated their children as having less touch aversion and being more extraverted. Finally, the massaged children had a shorter latency to naptime sleep by the end of the study.

Research articles - parent experience

I am doing a periodic Scholar Google search for new research articles about Down Syndrome. Here are some about reported parent experience.

“It’s not what you were expecting, but it’s still a beautiful journey”: the experience of mothers of children with Down syndrome

Journal: Disability and Rehabilitation
Posted online on February 11, 2012. (doi:10.3109/09638288.2011.650313)

Divia Pillay, Sonya Girdler, Marie Collins, Helen Leonard

Abstract 
The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome and to explore what if any was the role of spirituality and organized religion in this experience.

Method: A homogenous sample of eight mothers of children between 7 and 12 years of age with Down syndrome was recruited through a population-based source of families of children with Down syndrome in Western Australia. In-depth interviews were used to explore the mother’s experience of parenting and to examine the role of spirituality and organized religion in their personal experience of mothering.

Results: In this study, stressful life events recounted by the mothers included initial acceptance, developmental behaviour of the child, functionality of the child, health conditions and financial stress. Overall spirituality was described as a stronger and more dynamic source of support than organized religion in coping with stressors and life’s challenges associated with raising a child with Down syndrome.

Conclusion: Findings from this study revealed that being a mother to a child with Down syndrome can best be described as a mosaic of experiences, emotions and a journey of self growth. Both spirituality and organized religion to a greater or lesser extent were useful in mediating stress and supporting mothers particularly during challenging life events in the course of their journey with their child with Down syndrome.

Implications for Rehabilitation

• Being a mother to a child with Down syndrome has been described as a mosaic of experiences and emotions including a journey of self growth.
• The birth and diagnosis of a child with Down syndrome are most difficult and stressful experience for a mother.
• Supports such as family, friends, spirituality and religion can play a key role in helping mothers of children with Down syndrome cope.
• Health care providers need to understand the significance of holistic support systems for families with a child with Down syndrome.
  
  

Psychological Well-being in Fathers of Adolescents and Young Adults With Down Syndrome, Fragile X Syndrome, and Autism
Journal: Family Relations 
Sigan L. Hartley, Marsha Mailick Seltzer, Lara Head, Leonard Abbeduto

Article first published online: 13 MAR 2012 (doi: 10.1111/j.1741-3729.2011.00693.x)

  

Abstract
The psychological well-being of fathers of children with developmental disabilities remains poorly understood. The present study examined depressive symptoms, pessimism, and coping in fathers of adolescents and young adults with Down syndrome (DS;n = 59), autism spectrum disorders (ASDs;n = 135), and Fragile X syndrome (n = 46). Fathers of sons or daughters with ASDs reported a higher level of depressive symptoms than the other groups of fathers. Fathers of sons or daughters with DS reported a lower level of pessimism than the other groups of fathers. There were no group differences in paternal coping style. Group differences in paternal depressive symptoms and pessimism were, in part, related to differences in paternal age, the child's behavior problems, risk of having additional children with a disability, and maternal depressive symptoms. Findings from this study can be used to educate providers and design services for fathers during the later parenting years.

Balance Disc

I've just found this article yesterday.

Balance exercises in Children with Down's Syndrome:A Randomised Controlled Trial

Sharma A, Ganesan S, Tedla JS (2012) Balance exercises in Children with Down's Syndrome:A Randomised Controlled Trial. International Journal of Current Research and Review , 4 (1). pp. 130-134.

Abstract

Objectives: To compare the effect of balance exercises and standardized exercises in children with Down‟s syndrome. Methods: 30 children with Down syndrome aged 5-15 years were assigned to the experimental and control group using block randomization. Children in the experimental group underwent balance exercise program whereas children in the control group underwent standardised exercise program, twice per week for a total of 6 weeks. Results: There was significant improvement in both the groups on the Pediatric Balance scale and the gross motor function measure scores. However the experimental group showed a greater improvement than the control group. Conclusion: Balance exercises are better than standardised exercises in improving the dynamic balance and gross motor function in children with Down syndrome.

This team is from, don't laugh, Department of physiotherapy, Kasturba Medical College, Mangalore. So, the credentials are not that amazing. I actually had to Google "Mangalore" (it's an Indian city). This being said, the findings resonated with me. My son is very active and is doing a fair amount of physical therapy since forever. Still, I am worried about his posture and it has to do with his core musculature not being stimulated in an efficient way. Somehow, all this therapy is not enough. 

Anyway, for a while now I was considering buying a balance disc, both for me and for my son. They are supposed to improve posture and work all sort of muscles. This article gave me the excuse to finally do it, so I just order two discs (green and purple) today. We'll see if my son likes it. I'm thinking about getting another one for my office - they are supposed to relieve back stress from spending too much time in a chair.

Update: We are using these discs.They both work great. In our house, everything works better if we take turns, so we have 2 balancing discs (or stability discs).

Sight reading

My son is 4 years old. There is plenty of evidence that teaching sight reading to children with DS is not only possible, but a really great idea. The Down Syndrome Ed website provides all the research on the subject (plus tutorials and materials for their See and Learn method). Bottom line, we really wanted to do this. We first tried using cards, but my son didn't have the patience and I wasn't determined enough (it was at least a year ago). We also tried "Your baby can read" videos. We used the videos for about a year on and off, and he started to recognize some words, but it wasn't clear how to move from words to sentences. We also bought the See and Learn app for iPad and, although I liked it, we only used it sporadically. Basically, we were interested, but couldn't apply ourselves.

Last month, I was reading Down Syndrome Parenting 101: Must-have advice for making your life easier, by Natalie Hale. I've been reading so many parenting and DS books during the last 3 years that they all kind of blend together in my head. But I'm still looking for the ultimate advice, so I keep on reading. I'm usually happy if, after I finish a book, I still remember one good idea.  What stuck with me from this book was the idea that children with DS entering kindergarten knowing to read are less likely to be underestimated by the school, more likely to receive an inclusive placement, and in general perceived as more capable learners. Obviously, this is incredible unfair, but I completely believe it to be true.

Well, now I have my deadline. I love deadlines!!! 

So, we got serious about sight reading. I mentioned before that both my son and I are addicted to the iPad, so using the See and Learn app seemed the most natural choice. We've been doing "homework" every day for the past two weeks. It is not the most exciting thing one can do with the iPad, and my son knows that very well. It is also kind of boring, looking at the same words over and over again. But it works!! My son now recognizes at least 8 words. I'm going to start putting together small books using these words to make it more interesting for him. We'll definitely continue with this!