SATB2 School Prep 1

The beginning of the school year is always nerve-racking for me. SATB2 Associated Syndrome is so rare that I can't ask what training the teachers have had in it, because specialized geneticists don't know what it is! 

Therefore, I try and do a training meeting for everyone on Chelsea's IEP team, and make each team member "Chelsea Folders"! Most team members have loved these!

Here is what I am doing to prepare for the start of school (part 1)!

1. Make an All About Me page!

I usually include things such as her likes, strengths, weaknesses, and a little information on her disorders. I also include pictures, because I like to hold meetings before the start of the school year, and the team hasn't met Chelsea yet. I write it as if Chelsea is speaking

Here is Chelsea's info page:

2. Make a page on SATB2 Associated Syndrome! (or for whichever syndrome/ disorder your child has)

For this, I have found that team members get overwhelmed with too much information (so won't read it), so I keep it very brief and to the point.

An example:

3. Make a page of your child's favorite words/ signs/ verbal approximations. Chelsea has more than 300 words now (yay!), so I separated her word list into categories, like "People" or "Animals" or "Places".

Doing this helps the team members to listen for specific words. One of Chelsea's favorite phrases is "Minnie Mouse happy!", and then the team members know to listen for an approximation of Minnie Mouse. Our kids want to be understood!

I stopped writing down all of her signs, because she has more than 700, and there is no way I am going to spend hours thinking of each and every signs and recording it

For example:

 

Did you get what she said? It is hard to understand when you don't know what to look for. This is Chelsea counting to 9!

 

Good luck preparing for the start of school! To be continued!

Speech Therapy: How Much? What Kind?

When I first started Chelsea in speech therapy, I assumed that all speech therapy was the same (you "go to speech"), and read in an article that 40 sessions of speech therapy "cures" most speech impediments.

Here is what I have found worked for Chelsea for speech therapy.

How MUCH therapy should we do?
My humble opinion is, the more the better! With apraxia, there is a direct correlation between number of hours in therapy and the outcome. Research states that 3-5 (30 minute) sessions a week are recommended. With that said, there are always limiting factors- money, time, energy, etc.

Try to use all the resources you can- this is your child's voice! Hire a grad student, advocate for more time at school, enlist a mother's helper to watch your other kids so you can focus on your special needs child, whatever it takes! BUT- this way is exhausting, and you will have days when you cry and think it is useless and wasted money. I had those times.

THERE IS HOPE!!!! Currently, Chelsea is 5  years old and has roughly 300 words that strangers can understand (if they listen close!). That is AWESOME for a kid with SATB2 Associated Syndrome! But it took 2-3 years of building the foundation and working on basic sounds over and over and over and over.

What KIND of speech therapy should we do?

Birth-2 years old

• At this time, I didn't know the extent of Chelsea's speech problems, but we did some sign language and PECs
• For sign language, we did hand over hand. Remember, it took Chelsea about 10,000 repetitions to get a single sound or movement, so patience is key!

• We laminated pictures of food, and put magnets on the back. At meal/ snack times, we would place options on the fridge, and she picked what she wanted. You can use PECs for any kind of activity!!!

• Talk non-stop! I would commentate everything I did "Now Mommy is chopping the carrots to put into the pot to make soup, see how the carrots are orange? Let's feel them!" All. Day. Long.
• When I got tired of talking, I would put on audio books. Language bombardment to the MAX!!!!

2 years old- 3 years old

• For about 2 years, we did PROMPT therapy. This is a method to treat Apraxia of speech, and is basically the speech therapist (SLP) cueing speech by touching spots on their mouth

• Chelsea did this with her early intervention SLP, her school SLP, and private SLP
• At the time, her private SLP wasn't trained, so I organized a PROMPT conference, and my SLP was allowed to be trained for free, which was awesome

4 years old- 5 years old (present)

• Since 2014, we have really hit Apraxia specific speech therapy hard, focusing on the K-SLP method, which combines ABA (behavior modification, usually used for autistic children) with speech therapy. It was developed by Nancy Kaufman
• We visited Nancy Kaufman at her clinic in Michigan, and it was incredible! I wrote all about the visit HERE

Chelsea working with Nancy

• I also attended 2 Apraxia conferences through CASANA, the national Apraxia organization. Those really helped me with knowing how to work with Chelsea at home and what to train her SLPs in
• We have an AMAZING SLP for Chelsea who is fluent in sign language, and is able to use ASL and Apraxia specific methods to work with her.

  Work at Home

• Ask your SLP for homework, then always always do the homework!
• Some is better than none! Don't set a goal of doing an hour of speech a day, then get overwhelmed and not do anything. 5-10 minutes is better than nothing! Try to get in at least a little every day!
• Look up ideas! We are blessed with the internet, so peruse pinterest, google ideas, or watch youtube videos to get ideas for speech that day!
• Make it fun! Your kiddo won't be into something unless you make it fun, and whatever works, roll with it!

The Power of To Do Lists

Having two kids keeps me crazy busy from before sun up to past sun down, every day. To prevent myself from going actually crazy, I have fully embraced to do lists!!!

I have used to do lists daily since college, but after having two kids, I have to live by them! I love checking off boxes, and feeling the peace of mind that comes with not forgetting appointments, and having a constant visual reminder to work on therapy, have fun, etc.

I change up how my to do lists look, what is on them, etc., about once or twice a year, just to keep things fresh and new. Whatever works for you is the one you should pick!!!

1. Make a "To Do" list EVERY DAY!!!!! For me, I write out 3 copies of my daily to do list on a piece of paper, then copy a bunch and cut them once a month. I fill out one every day with the appointments from my master calendar on the wall and little things I need to do (mail letter to Grandma, etc). On my Daily List are things like:

• Workout
• Journal, pray, read scriptures
• Read non-fiction 15 minutes

• "Be Gorgeous" (my husband wrote this on my list in place of shower and get ready, and it stuck)
• Personal Project for 15 minutes!
• File papers 10 minutes (SO MANY papers for special needs!!!)

 

• 2 loads laundry
• Load of dishes and plan dinner
• "Power Hour"- clean up to music for about 30-45 minutes before dinner. We rarely need a full hour

2. Make a list for things to do with the kids!!! It is hard to remember everything, so I list:

• Read aloud 30 minutes
• Have FUN!!!
• Speech practice

• OT practice
• Gross Motor activity
• Tidy up kids' room (they are learning to do it, and I supervise)
• Medication and vitamin tracker
• Sing 5 songs

• Listen to uplifting/ classical music
• Play outside 30+ minutes
• Learning Time (academics, practice circle time)

• Devotional
• 10 minutes 1:1 with each child
• Work on life skills

(I also keep lists of ideas for things like OT, speech, devotionals, songs... pretty much everything so I don't have to come up with things on the spot)

HAPPY PLANNING!!!!!

Time Management

Managing the doctor visits, therapy appointments, school meetings, and picking up medications for your special needs child feels like a full-time job by itself! But on top of that, parents of special needs kiddos are in charge on managing home therapy practice, helping learn life skills, spear-heading the behavior plans and staying consistent with it... The list goes on and on!

I already wrote in my blog The Cost of a Special Needs Child about the demands on our time, and now here are some ways that I have found to cram in as much therapy in as little time as possible so we have time left for fun things!

1. Combine, combine, combine!!! This is the most effective way I have found to get in everything we need to do. Instead of reading for half an hour then doing OT, I give the kids little stress balls to squish for hand strengthening, or do tummy time, while I read to them.

Or you can work speech into the books- Say "turn page please!" or ask questions about the books, have the child find objects receptively "Who on this page is jumping?" There are SO many options!

I also use this for myself during the kids' "quiet time" (1 hour every day when they look at books or do puzzles in their room so I can work on projects). I will do lunges while picking up around the house, or call out animal walks for the kids across the living room while I make dinner. 

2. Don't forget car time!!! There are so many fun Speech Car Games that you can do for receptive language, and we like to have "Vowel Contests" to see who can hold a sound like "oo" or "ah" the longest. This really helps with breath control, and getting in those reps so that the sound is more readily accessible for our kiddos who struggle motor planning!

One game that my son loves to play with his sister is just "Say _____". He likes to play because he is the boss and tells her to say words like "wolf" or "Minnie Mouse", and she likes it because he usually picks words she likes, and he isn't a parent or therapist.

3. Budget Extra Time for Life Skills!!! I usually try to save time in the mornings to let the kids practice making their own breakfast, washing their own face, getting dressed, or packing snacks, by themselves. I have to remember to take extra time, because Chelsea still needs a LOT of hand over hand help.

While I never want to skimp in any area, life skills are one thing I worry that if we don't work on now, Chelsea will struggle to pick up later, having been accustomed to me doing it all for her. (Plus, it is SO hard to dress a hypotonic kid, and I am concerned I will not be physically able to later when she is bigger and I am old)

4. Use a Visual Schedule! This isn't so much to help me, it is for Chelsea. I use this board so that she knows what to expect and doesn't get overwhelmed or panicked when it is time for a transition- she knows what is coming! I put all the card options on the back so they don't get lost.

 

Special Ed Laws to Know

First of all, I am not a lawyer. I feel like with the effort I've put in, I should have a degree, but I don't. Anyway, these are the 3 laws that I have found most helpful as I have advocated for Chelsea. Easy answer: Go to wrightslaw.com Pete Wright lives and breathes special ed law as a successful lawyer, and answers every question a special ed parent could possibly ask.

Typically, Chelsea has had good IEP team members (SLP, OT, teacher, APE, etc) who want to help her and I can tell care about her. However, my problem comes when I ask about issues with my daughter's education, and am basically told that I am a parent, not a professional, so leave it to them. Not okay with me.  Also not okay when the district feels like their district policies trump federal law.

1. IDEA Section 1414(d).

This is what you will live by- it lays out all the info you need to know about IEPs. What IEPs are supposed to contain, who is on the team (parents are #1!), the protocol for development of the IEP, attendance, and just about every circumstance that may arise (parent in prison, homeless or foster child, kids transferring school districts, etc)

Here is a link for a pdf of Section 1414 Happy reading!

2. Prior Written Notice!

Do you know that little greyish booklet that looks tedious that your team gives you (or should be giving you) at every IEP meeting? Flip over to Written Prior Notice "330.503" (page 9 of mine). Look at #2.

This means that if you say "I want 90 minutes weekly of 1:1 speech therapy for my child with a K-SLP trained SLP", and they refuse, ask for Prior Written Notice. (My team in the past didn't even know what this was, despite handing me the booklet every meeting!) The team then has to type up a document giving:

a. An explanation of what the LEA proposed or refused to take action

b. A description of each evaluation procedure, assessment, record, or report the LEA used as a basis for refusing/ proposing action

c. A statement that the parent of the disabled student has protection under procedural safeguards in IDEA (they can't come after you for advocating)

d. A description of other options considered by the IEP team

e. A description of other factors that are relevant to the LEA's proposal or refusal

f. Information on how parents can gain more information about understanding the law, resources, etc.

3. Reusch vs. Fountain!!!
 
This was a case in Maryland in 1994 that specified the criteria that qualify a child for ESY (Extended School Year). Wrightslaw has the full case here. In my experience, 100% of the time, district employees will say that the only way to qualify a child for ESY is if they regress over a school break. FALSE!!!! You can actually qualify under any of the following:

a. Regression/ Recoupment (have they regressed?)

b. Degree of Progress (have they made little progress on their IEP this year?)

c. Emerging Skills (if critical life skills are at a breakthrough point, this can qualify your child)

d. Interfering Behaviors (does your child have behaviors that interfered with learning during the school year?)

e. Severity of disability (is your child's disability severe enough to prevent adequate progress during the typical school year? For SATB2 kids, the answer here is yes)

f. Special Circumstances (if your IEP team decides for any reason to qualify your child, then they qualify!)

Also, ESY is supposed to be designed for your child personally, not a one-size-fits-all program (ie- 5 weeks this summer, 3 days a week, 20 minutes group speech, 20 minutes OT, 20 minutes APE, take it or leave it). 

Also, my district kept telling me that Chelsea would only be able to pick two goals to maintain, not even make progress on. Utterly useless. For me, I usually make them write down that Chelsea qualifies to keep for her records, but then only accept 1:1 speech, OT, and PT, then drive her myself.

    

Abuse Prevention

One of the things that scares me more than anything else is that a predator would target my sweet girl and make her a victim of abuse. I attended an amazing workshop that helped to train parents on what to watch for and preventative measures we can take to lower the risk of abuse happening.

Let's think for just a minute- people with special needs are very high risk for abuse:

1. They are easy to assault, easy to overpower, and often can't walk away

2. These kids (or adults) often are not mentally aware of what is happening. It may be hard to know the difference between a cleaning after a stinky diaper and inappropriate touching.

3. They may not be able to report or tell anyone what happened, or call for help

4. If they frequently make things up, they may not be believed

5. These people have lots of 1:1 time alone with a variety of people- caregivers, therapists, teachers, bus drivers, etc. (They are trying to make it so that more than 1 adult is always present with special needs kids, but still a work in progress)

6. Finally, abuse is often not reported because the person may be afraid of being placed in an institution.

That is scary!!! Knowing that my sweet daughter is a prime target for a predator scares me to death! I don't want anything to happen to her!

Reduce Risk

• Reduce isolation- Insist on the 2+ adults with my child at all times- in school, during diaper changes, on the bus, during school therapy, etc. Write it into their IEP!

• Get abuse training for yourself and the staff that works with the child. This is for several reasons- this lets the staff know that you are watching for signs and will step in at the slightest sign of abuse, and will make them feel more comfortable when you ask for their records, so-

• Ask for the background checks of all persons working with your child- bus driver, classroom aides, teachers, therapist, principal, everyone!!! Background checks for bus drivers and aides are (unfortunately) not very thorough, and you have the right by law to request that information

• KNOW the people working with your child. 97-99% of abuse happening to people with special needs is done by a person that is known to the special needs child and trusted.

• Listen to the butterflies in your stomach! If something seems off, follow up. I care way more about my daughter's safety than the possibility of offending grown person.

• Drop in unexpectedly at school (you can let the school know at the beginning of the school year that you may do this occasionally throughout the school year). You may walk in at any time, any day. This isn't spying, it is seeing how your child is at school! Are they happy and learning?

Educate Your Child

• Teach proper terminology! If it comes to it, police need to know where you were touched, and "Down there" doesn't cut it. Yes, there will be embarrassing "Girls don't have penises!" moments in public, but a little embarrassment now is nothing in comparison to abuse happening and your child can't (or won't) tell you about it

• Have conversations about sex and boundaries (you can say no to anything you aren't comfortable with), since abusers sometimes go for the shock factor

• Talk often about safety and role-play calling 911 (depending on communication abilities), and visit the police station so your child is comfortable with police and knows to go to them (it is criminal justice, not victim justice)

• Monitor internet use- never give out phone, address, email, and avoid pornography like the plague it is! Do NOT desensitize your special needs child to porn- it makes experimentation and abuse more likely

• Always tell your child, "You can tell me anything, and I will not be mad at you!" Victims often feel ashamed or like it is their fault

• Teach the difference between secrets, surprises, and private. Surprises are the "happy secrets" like planning Daddy a special surprise party that he will know about soon. Private things are things that people don't need to see, but isn't a bad secret, like going to the restroom or a diaper change. Secrets are the things people tell you not to tell that are bad.

Signs to Watch For

• Change in Emotions! This is the most common, so if your child was happy-go-lucky before, but now is moody and withdrawn, something is up (it may be bullying, isolation, neglect, sexual abuse...) Or if your child was challenging before, but is now super compliant, that may also be an indicator.

• Physical/ Medical Signs- these are easy to spot, like bruises, pregnancy, STDs, etc.

• Social Behavior- nightmares, tummy aches, and difficulty eating. Anything sexual abuse tends to affect the entire abdominal region

• Living Skills- a change in living skills, like a current lack of hygiene where it wasn't a problem before (the victim thinking, "Maybe if I smell and look bad, it won't happen anymore")

• Indicators of Incest- Such as a parent who refuses to let anyone else spend time with the child to the extreme (because they are worried someone will figure out what is going on).