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:

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 - Reading (alphabet) and Math (number recognition)

My son is a strong visual learner, so colorful pictures and videos work well for him.

Reading: as mentioned in a previous post we are teaching my son whole words reading (sight words). However, at the same time we are working on letter recognition to get him ready for phonics and phonetic reading. We are focusing on letter sounds, rather than letter names, as the sounds will be way more useful for reading.




By far, for us, the best DVD for teaching letters was Leap Frog "Letter Factory" which we initially got from our local library, but worked so well that we decided to buy it. Another good one is Signing time "ABC" episode, especially if your kid already knows and loves Signing Time series. BTW, Leap Frog "Let's go to school" is a great video to get your kids ready of their first day of kindergarten.

Math: Teaching numbers from 1 to 20: Sesame Street "The great numbers game". Teaching numbers from 1 to 100: Scholastic Emily's first 100 days of school. We are now working on number recognition from 1 to 100, so we've posted on our fridge this numbers chart. Cheap and it does the job.

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).