The Cost of a Special Needs Child

This is why special needs parents laugh when you tell them to take time for themselves! And this is just what our family is supposed to be doing for Chelsea- it doesn’t include ABA for autistic kids, or wheelchairs, or other things.

Things not necessarily covered by insurance:

3-5 sessions of speech therapy weekly= $600/ month

1-2 sessions of occupational therapy weekly= $400/ month
Seizure medication= $125/ month
1 session physical therapy weekly= $325/ month
Adaptive Gymnastics= $50/ month
Allergy-free diet= $250/ month for just her
Vitamins, fish oil, supplements= $75/ month

Grand Total= $1,825 monthly (not including any extra doctor visits, specialist tests, EEGs, MRIs, genetic testing/ counseling, costs for therapy supplies, etc.)

Now add on rent, utilities, food for the rest of the family, gas, and all the rest of your monthly budget

Others Things to Do for Your SN child:

Read 30 minutes daily

Work on speech 30 minutes daily
Work on OT home practice 20 minutes daily
Work on PT home practice 20 minutes daily
Chauffering to therapy/ school is 45 minutes daily (averaged)
Play outside 30-45 minutes daily
Work on academic skills 20 minutes daily
Listen to classical music an hour daily
4 hours daily of eye patching to correct lazy
Work on functional skills 30 minutes daily (teaching to dress self, brush teeth, wash hands, etc)
Spend 30-60 minutes daily doing a fun 1:1 activity of the child’s choice
Have a 10 minute spiritual devotional
Do a sensory integration activity daily for 15-30 minutes
Write in your child’s journal daily to look back on all the good memories you had
Manage tantrums and meltdowns

Grand total in time conservatively needed daily for your child= 10 hours 30 minutes

 

Other Things for Your Family:

Work your full-time job (if not SAHM)
Cook organic, healthy, allergen free meals
Keep your house tidy and organized
Find time for YOU- hobbies? Taking a shower? Going to the bathroom alone?
Nurture your marriage! Find a babysitter (Insert hysterical laughter here) and go on a date
Keep yourself attractive by exercising daily
Keep up on laundry! Yes, this includes the 5 outfits a day your SN child goes through each day because they are a messy eater, drool excessively, throw up frequently, and smear poop every chance they get
Always be positive! Let nary a frown cross your lips

This, friends, is why SN parents are so tired. And emotionally drained. And spend money on almost nothing else. Please be kind. You never know what someone is going through, even if they put on a happy face every time people are around.

 

But, our SN kids also teach us so much. I am definitely a better person because of what I have learned from this experience. I love my little gal so, so, so much!

 

 

Potty Training: Preparation

I can't even begin to express how nervous I was starting potty training with Chelsea! She was almost 5 when we started, and her geneticist told us to not expect her to ever be potty trained. Challenge accepted!

I elected to use the RTT method of potty training, rather than the "go when you are ready" method that I used for my son. It worked for him, but I knew Chelsea would need something else. So... the preparation!

1. Ship off your other kids to family, in-laws, something for at least the first part of training. I knew I wouldn't want anything else to deal with during potty training, so I had my husband take off work and take my little guy on a little trip to see my in-laws. SO worth it!!!



2. Make an "Activities Box". I put together about 100 fun activities that we could do while sitting on the potty. If you need ideas, look up things like bed-rest activities for toddler, games for in the car for preschoolers, etc. I will list all mine later.



3. Put together a "Prize Box". I went to thrift shops, dollar stores, and searched clearance racks. I used the "1 M&M per potty success" for my little guy, but that won't cut it for Chelsea. We picked out glow sticks, necklaces, puzzles, stickers, candy bracelets, squishy balls, foam beads, and a flashlight. I also had some cute shirts with her favorite characters for poop prizes

4. Load up on salty snacks and your kiddo's favorite drinks. I wanted Chelsea to eat things to make her thirsty, then load her up with fluid! More success opportunities! I kept everything right in the bathroom or just outside of it so we wouldn't have to leave at all.

5. Clean-up Station! I had a bucket with paper towels, air fresheners, cleaners, washcloths, towels, soap, and a couple changes of clothes for me and Chelsea. Have a big trash can close by, as well as a laundry hamper.

6. Freeze casseroles! I froze several casseroles  because I knew I would NOT want to cook anything after a long day of potty training. I also loaded up my fridge with ready to go salads, yogurt cups, baggies of veggies and fruit, etc., for me and Chelsea

7. Gather undies and pull-ups! We needed about 20 pairs of underwear, plus a big box of pull-ups (which we didn't use until Week #2).

That is the prep I did leading up to potty training! I didn't do anything with Chelsea other than saying occasionally, "I am so excited! You are going to learn to use the potty soon!!! You will love it!"

Common Features of SATB2

SATB2 Associated Syndrome involves a gene on chromosome 2 being deleted or mutated to the point that the gene is incapable of performing it's duty.

 

Common Features of Kids Who Have SATB2 Are:

Dental Abnormalities

These kids will most likely have some dental issues, ranging in severity. Commonly, they have large and widely spaced front teeth. You can see it on Chelsea here:

High/ cleft palate

These kids will most likely have a high or cleft palate. If you stick your tongue up to the roof of your mouth, that is it. Chelsea used to stash bread up there for HOURS and we had no idea, then would drool out this glob of slobbery bread up to half the size of my fist. Ready for the funny/ gross video?

 

Limited Speech or Non-verbal

Depending on the severity at which the child was affected, these kiddos often have limited (we are talking 3-10 words here) or no speech. Signing abilities may or may not be present. PLEASE don’t tell us that Einstein didn’t talk until he was 3 or 5 or 14 or whatever, because 1) it is historically inaccurate- he was actually speaking in complete sentences at 2 and 3, and 2) he didn’t have a genetic disorder. I know those who say this mean well, but there is a lot of grief that we feel because we may never hear our child say “I love you”, and that is hard, so we probably just need a friend to listen, and we love our kids for just who they are.

Motor Planning Difficulties

If you look up “global apraxia” you will find great info on this. Pretty much, the brain tries to send messages to the muscles all over your body, but they don’t go through, or else partially go through. Example: You want to pick up a pencil. Your brain has to gauge the distance between your fingers and the pencil, send messages for your core to stabilize, shoulder engage, arm reach out, fingers open then close around the pencil and then lift. (That is the VERY abbreviated version!)

There are hundreds of steps that go into every single action that your body engages in that we take for granted! If there is a disconnect between the brain and muscles, there will be problems with coordination. These kids may fall often, have difficulty with grasping, poor strength, low muscle tone, etc. Any kind of action is very, very difficult for them and requires great focus!

Seizures

The more of these awesome SATB2 kiddos I get to know, the more I realize how common seizures are. Not necessarily grand mal (shaking all over) seizures, but also subclinical ones, meaning their brains might “reboot” or “go to sleep”. Here is the blog on silent seizures

 

Intellectual impairment

I love and hate talking about this, because on one hand, I love being able to tell people that just because my kiddo was diagnosed a low IQ, she isn’t dumb. That doctor only saw her for a few hours, and you can’t judge anyone’s future on that little of time. She still learns lots of things, it just takes a little while longer, which is fine! I don’t mind and really don’t notice much anymore because she is just Chelsea to me and fun to be with. On the other hand, there are SO many stereotypes about people with low IQs, and it is hurtful to hear the R word tossed around in everyday speech. It also is painful to watch people make assumptions about these sweet kids who are so much MORE than a number on a page or a statistic.

 

Delayed or impossible potty training

This is probably one of the hottest topics for special needs parents! Every parent wants their kid to learn to use the potty, but if I had a dollar for every time I have heard someone tell me “Well, it isn’t like she will crawl off to kindergarten in a diaper and not talking!” I would be a rich woman. There ARE kids who can’t walk, talk, or use the toilet by kindergarten! You just don’t see them because they usually go to other schools, or are kept in small group classes away from “typical” kids partially so they don’t get made fun of.

But anyway- these kids can’t “feel” their bodies as well as most kids, so can’t tell when they are about to go, or let you know if they do need to go! I think out of the 30ish kids that I know of that have SATB2, I am aware of 2-3 that are potty trained. It CAN be done! But it is a loooooooooooong road and frequently impossible, again, depending on the severity.

How to sign "potty" in ASL

Sensory Issues

Another common one that I have discovered simply by talking to other parents is sensory issues. This might mean they aren’t aware of their bodies, so seek high pressure activities, like swinging, swimming, big hugs, tight clothes, hammocks, being squeezed, etc. This could also be seen orally- putting odd items in their mouths to get more sensory input, like how Chelsea will try to chew on pebbles or clothing or grind her teeth. (We give her pop rocks to fulfill that sensory need- works awesome!) There are so many different sensory things that I can’t list them all here!

 

Drooling

Because of the dental issues, poor body awareness, and motor control difficulties, there is lots of drool. These kids don’t realize they are doing it, it just happens.

Early Reading Games Part 2

These are some of the other games that my kids LOVE, and we will swap out pictures of speech target words for Chelsea or do other things to shake it up!

Flashlight Letter/ Word Finder

For this activity, you will need a flashlight for each child playing! Tape up your targets around the room (letters, numbers, words, pictures of speech target words) and turn off all the lights. Then call out what you want them to find! Kids love shining flashlights all around! You can say the name of the target, or give clues, sounds that it makes, etc.

 

Home Run

Best played outside! Put target words on the bases, and when your kiddo hits the ball off the tee, they have to run around the bases and say each word before you tag them out!

 

 

Musical Reading Chairs

I love my kids using their whole body when they learn, and this is so easy- musical chairs! We all know how to play musical chairs- sit on a chair when the music stops! Simply put words on the chairs, so the kids have to call out what word they are sitting on! We can also change it up to say the last letter, or second letter to work on order of numbers and understanding what “third” means.

 

Hidden Puzzle Words

My kids like this one as long as it is on a fairly simple puzzle. With harder puzzles, they don’t like distractions. I tape a little word on the bottom of puzzle pieces, and the child has to use that word in a sentence before they can put the puzzle piece in place. You can also hide the puzzle pieces in a sensory bin! (Not rice though- that causes issues because it isn't seen then the puzzle doesn't fit together) Dried beans work well!

 

 Cleaning the Room Words

I bribe my kids for this one! I will hide flashcards or similar under things in a messy room. When I say go, the kids have to pick up toys and put them away. If they touch it, they have to put it away, even if nothing is under it. If a word is under there and they correctly read the word, they get a penny to put in their banks. Reading lesson and clean house is totally worth 20 cents to me!!!

 

Who Can Find the Most ___

This is a fun car game or game while out on a walk. See who can find the most of a given letter. For little kids, it is easiest for the child to find “their” letter. Since my name is Mommy (or Mary, take your pick), I would look for Ms. Chelsea would look for Cs, etc. Kids take such great pride in being able to identify “their” letter!

 

Shadow Words

For this one, you can either hold up a letter cut-out (I like using my foam letters so I don’t have to do work) or a paper with letters cut out of them. Either way, you get a projection/ shadow of a letter on a wall. You can also hold up a letter and have the kids trace it outside with sidewalk chalk! I also have the kids put up their hands and tell me what animal/ shape/ whatever their hand shadow reminds them of. They are fascinated with their shadows right now!

 

Balloon Words

Get some of those balloon animal balloons, blow them up, and use them to form letters or words! Giant letters that the kids can kick around! Nothing more fun than that! You can also write words on regular balloons, and call out words. First kid to identify the correct balloon gets to pop it!

 

Clothespin Words

I use my alphabet clothespins to let the kids make words or spell their names. I don’t do big words, because they are working on spelling. We sing our name song while we spell it out, and pinching clothespins open is actually a big time workout for little hands!

 

Object to Word Matching

This is another really fun one for kids! Find some of the kids’ favorite toys/ objects, and write out the names on cards. Then have the objects on one side of the room and the names on the other. The kids have to match the words by sounding out the names of the objects and sounding out the words written on the cards!