Posted in autism, family, parenting

The Cost of Autism

In January we finally got to do Camille’s autism evaluation.

Now, I could go on and on about the inner workings of the four hour appointment, but that is not going to be the meat of this blog, so let’s just go with an overview.

We started the eval process in about July 2019. We had to go to their regular pediatrician for an appt and to get a referral. We went on the waitlist for the developmental clinic and finally got our appointment in the middle of January 2020. The day comes, and we get to the pediatric specialty clinic and we spent about an hour with each specialty. One hour with a developmental pediatrician, one hour with speech therapy, and a shared hour with both an occupational therapist AND a physical therapist at the same time. The time with all three specialists were pretty much all the same: mostly asking me questions and having me fill out scantron-style forms, watching Camille, and trying to get her to do certain tasks. I would say about 75% of each session was spent mostly just talking with me.

The evaluation is not even finished. We still have to get Camille evaluated by a behavioral therapist, who’s waitlist is six months long. WHY we were not put on their waitlist back when we got on the waitlist for the developmental clinic is BEYOND ME. Now, by the time we get in with the behavioral therapist, Camille’s autism evaluation will have taken one year to complete. Although I could write a whole blog about that and my annoyance with it, this isn’t the topic of the blog either.

This week, about 6ish weeks after Camille’s appointment, we got a statement from the evaluation appointment, along with the bill for the remaining balance. YA’LL….. The total for this *partial* autism evaluation was $1,846.48. 

Let me break the bill down for you:
Clinic (developmental pediatrician): $773.65 <—for ONE HOUR
Occupational Therapy evaluation: $305.61
Physical Therapy evaluation: $342.28
Speech Pathology evaluation: $424.94

Total: $1,846.48
Tricare Insurance covered 98% of the total costs
My remaining balance: $33

…Thank GOD for decent insurance! Who could afford that otherwise? I don’t know much about Autism coverage with insurances (outside of my own experience), but I did read once that a lot of states now are requiring major insurance companies to now cover some autism services, as it is becoming much more common (or should I say, more diagnosed/recognized). 

We have been very blessed with our Tricare coverage when it comes to autism services. When my son was two years old and diagnosed with autism spectrum disorder, we became eligible for a supplemental coverage within Tricare called the ECHO program. This program covers additional medical supplies, therapy tools, and specialty therapies that are not available with the general Tricare plans: you must have a medical diagnosis of some type to qualify for this program.

After seeing the cost of this evaluation (especially being in a rural location in Michigan vs an Urban city like San Diego) it got me thinking…what is the average cost of Autism in the U.S.? Are other people struggling like me? What if people don’t have good insurance like my family does?

*Disclaimer, this information came from about an hour of web searches, so I cannot confirm the validity of this data. If you have knowledge of more accurate data PLEASE let me know!*

The total cost of Autism Spectrum Disorder in the United States is $126 billion. The average cost for providing care to one person with ASD throughout their lifetime is $2.3 million (compared to $1.4 million for a healthy average functioning person). So what is this cost for? Obviously a bunch of different things that can vary for each individual person… that was a boring answer, so here are some of the main factors:

  • Regular doctor appointments
  • Specialty / developmental doctor appointments
  • Speech therapy, occupational therapy, physical therapy
  • Applied Behavior Analysis therapy
  • Medication
  • Childcare (some children with more difficulties can require specially trained childcare)
  • Parent’s loss off income for taking time off for therapies, frequent appointments, IEP meetings, etc

It’s safe to say that life in general is just so much more expensive these days. Medical costs for EVERYONE are insane. We all know that pharmaceutical companies make so much money off their horribly overpriced medications, but don’t let that overshadow all the other overpriced medical treatments in the healthcare field. 

When we were in San Diego and my son started Applied Behavior Analysis therapy (ABA), we were blessed to never have to pay a cent for the service. I did however receive the monthly statements showing me the hours, costs, and confirmation of payment. All I can say is… HOT DAMN. It was around $5,000 a month for ABA therapy in San Diego. (Because we are in Michigan at the moment, I do not have the physical records with me to give you an exact cost of this therapy, but that amount of money is not easily forgotten.)

Eli had two separate therapists (rotated days) that came M-F 8am-12pm and a case manager that came maybe about once a month. One of his daily therapists told me that they didn’t need any certain degree for their job and only made around $12-$15 an hour (in southern California!) Meanwhile, the case manager that came once a month for an hour would drive up in a nice BMW… So why the insane costs??? What is all this money going to? The actual therapists who get screamed at, hit, kicked, and are the ones actually doing the work aren’t getting the money they deserve, so who is getting it? The supervisors who have never met my child?

I think it’s worth mentioning that more often than not, families with a child with some type of disability usually have one of the parents leaving the workforce to become a full time caregiver to the family member, thus leaving the entire family to rely on one income. This, if you’ve followed my blog or know me personally, is the case for my family. I have been a stay at home mom for pretty much 7 years. Between in-home speech therapy, in-home ABA therapy, 3 hour special education preschool days, in-office therapy sessions, I would either need to have a costly full time nanny that I trust to transport my kids around all day or we need to take the loss of an income. What is a solution for this?

 This blog isn’t going to end with my grand solution to this ridiculous high medical costs dilemma. Honestly, I don’t really have any solid ideas at all. Could the government step up and create a solution? Doubtful seeing as how far in debt we are already… What we need is someone or some powerful agency/group and get a control on overpriced healthcare costs. Insurance companies should cover more specialty services. There should be more free state and federal resources for families with disabilities. Until a solution comes to light, all we can do is spread awareness and bring more light to the struggles that SO MANY families are dealing with on a daily basis.

https://www.autismspeaks.org/press-release/new-research-finds-annual-cost-autism-has-more-tripled-126-billion-us-and-reached

Posted in autism, parenting, speech therapy

Unintentional Learning Tools

We watch a lot of tv for a family with no cable. We’re too broke to pay ridiculous monthly payments with Direct Tv. The first 12 months are great but when your incentive period is over BAM! Your bill goes from $75/ mo to $200/mo How? Why? More importantly..for what? I watch HGTV, ABC, and E! My kids watch Disney Junior and Nickelodeon. And you want me to pay how much for 5 channels? Hard Pass.

In the age of Wifi and Smart Tvs we’ve moved on to a trifecta of internet streaming: Netflix, Hulu, and Amazon Prime. There are always new things added each month and Hulu posts tv episodes the day after they premier on tv. (Disclaimer: this is not an ad for any of these services, I do not have nearly the amount of viewers to make that happen..) Anyway, most of the time we end up watching the same shows over and over and over and over and over again. But nobody complains because all of us parents know that children are creatures of habits. They LIKE to watch the same thing over again so it really works out, except when they take off one of your kid’s favorite movies (R.I.P. Trolls on Netflix) The magical thing about this (and the reason for this blog) is my daughter Camille watches the same shows over and over again..she is learning to talk.

I am talking ALL DAY LONG to my daughter. You want a DRINK? You want MORE? MAMA. HELP. EAT. UP. DOWN. PLAY. BALL. BED. —Nothing. Then we turn on Finding Nemo and this little girl has the audacity to yell out BRUCE during the sharks little AA meeting scene. I popped my head out from around the corner like…..wut.

After that, I started watching her watching shows. Then I started recording. She knows so many lines to her shows. She repeats the lines at the exact time at they’re said, she has the correct pitches, correct sound, knows what lines are coming next. Sure, she doesn’t actually say the correct words, but it’s amazing nonetheless. She even started singing the songs. SHE SINGS SONGS! 

There is no better learning tool than face to face interaction. However, let’s be honest.. if your plan A doesn’t work, what do you do? Move on to plan B. This doesn’t mean I’m throwing out all my other tactics. I’m fusing them together. Something I’m doing (which let’s be honest I’ve always done) is using lines from Disney movies in real life to see if she will still get the connection. I downloaded all the songs from her favorite movies onto my phone and play them in the car to see if she will sing along. I am making this house a round-the-clock Disney movie. If Disney is what gets this girl talking then damnit, just call me Rapunzel.  

We’ve tried sign language, pecs picture cards, withholding things until she makes an effort to communicate. Everything we have tried so far hasn’t really had long lasting results. Then with no prompts, she recites and sings Disney movies and it’s honestly beautiful. Tonight as I crack open a Sunday night White Claw, I toast to you, Walt Disney.

“Word Party” on Netflix
Rapunzel- I see the Light
Word Party
Let it Go- Frozen
Posted in family, momlife, motherhood, parenting, Uncategorized

Dead Ends.

So I’ve discussed my struggles with my daughter Camille. One issue that has been confusing, is for a while is her inability to climb. It took her a while to climb anything (onto furniture, up the stairs, etc) even after she figured how to get up she could not get down. Even small things like a 12” tall toddler bed, or stepping off a 4” tall treadmill platform. Whenever she is at the top of something (bed, top of stairs, couch, etc) she would throw something off and watch it fall. Which to me, looked like she was dropping them off to see how long it took them to reach the floor. Until she got used to them, she was hesitant crossing different floor types. She wouldn’t walk from our kitchen to our living room because she wouldn’t step across the different floor types. She used to stand and cry in one room until someone picked her up and set her down in the next room. We were standing in our school gym once and she wouldn’t walk across the basketball lines. One day we were in a garage and she wanted to walk outside and there was maybe a two inch lip from the inside to the outside. She had to get on her hands and knees and crawl out; when she very easily could have walked out. Her team of therapists (and me) thought she had some sort of vision issues, specifically maybe depth perception. It made a lot of sense.

So i scheduled her an eye appt with a pediatric ophthalmologist. I was dreading the appt, but also excited at the same time. I was nervous because how in the hell were these people going to get her to sit for an eye appt?? she’s clearly not going to look into the lenses and say which number looks better. Is it better at 1…or better at 2? 2 or 3? Not to mention the whole eye blowing machine that makes even my buttcrack sweat waiting for it. 

Nonetheless, the day came and we walked into the office of the unknown. The staff was incredible!!! We got our own waiting room with a movie and toys! I strategically got some breakfast on our way so she could occupy her mind and stomach while we waited. The first thing up was dilating her eyes. We went into a room with a tech and I had to lay her down on my lap, face up. I basically had to pin her down while the tech opened her eyes and put a drop in each. As you can imagine there was a lot of wriggling and screaming but this process lasted about a min and we were sent back to the waiting room while her eyes dilated all the way. A little fun fact, children’s eyes take longer to dilate than adults. Additionally, brown eyes also take longer to dilate than other eye colors. So since Camille has both of those characteristics it took about 20-25 minute for her eyes to dilate completely. When she was finished we went in the room with the doctor.

This was probably the easiest eye appt I’ve ever seen. I sat in the chair with her on my lap. The doctor held up a spinny/light-up toy in front of Camille to keep her eyes focused. He looked in each eye with a handheld lens. He then took a flashlight and shined it in her eyes while also distracted. And That was that!

Despite the surprisingly easy appointment, the results were lackluster. The good news is, there is nothing wrong with her eyes. The back news is, we still don’t know why she’s doing her goofy little things! The ophthalmologist said her optic nerve is intact and her far vision looked perfect. I mentioned she was being observed for autism and he said it definitely could just be a little quirk of hers that could be related to autism. He basically told me to ignore it and it will go away. It’s always reassuring to know that your kids are healthy. But why do I feel disappointed? I think my mind set was on there being something wrong with her eyes. We’ll get her glasses and she will start blossoming! Maybe she’ll start playing with baby toys, walking better, signing better, climbing better. Now that the glasses are out of the picture, I’m back to square one trying to get her to reach new milestones. 

All I can do is help her the best I can and wait. Only time will tell. Next month Camille has her two year doctor appt and her official medical autism evaluation! So despite hitting a dead end on this, we have many more paths to take with my sweet sweet girl!!!

Posted in family, momlife, motherhood, parenting, Uncategorized

When to seek early intervention

Let me begin with a disclaimer. I am NOT an expert, I did not go to school for speech and language pathology, I am not working in the field in any way. I am simply a mother of two children with speech and language delays who has been through this and has done her research. I hope after reading this, if you feel concerns with the children in your life, that you will do your own research and seek the services available to you. I will attach links at the bottom where I got my information!

What is the difference between speech and language?

Language is the entire system of words and symbols (including written, spoken, or expressed through gestures and body language).
Speech is the actual sound of spoken language, including articulation of words/sounds. 

Since there is a clear difference between speech and language it is important to know that there is a difference between a speech delay and a language delay. 

[Examples]
Language delay Child may not be communicating (whether its via talking, sign language, gestures, etc) the way they should be at their age.
Speech delay Child may use words and phrases but is difficult to understand

All that being said, when should we start to notice if our child has a speech or language delay?

Before 12 months– Babies should begin cooing and babbling. By 9 months babies should be putting sounds together, using different tones, and say simple words like “mama” and “dada”. Lastly, before their first birthday, babies should pay attention to sounds and recognize the name to common objects (bottle, pacifier, mom, dad, etc).

12-15 months– Babbling at this age should have a range of speech sounds in their babbling (examples being P, B, M, D, N, etc), they should start imitating sounds and words, say one or more words, and follow one step directions (example- pick up the toy).

18-24 months– Most toddlers in this age group can say around 20 words by 18 months and at least 50 by 24 months. They should begin combining 2 or more words to make short sentences (Mama come, dad help, etc). Should be able to identify common objects and body parts when asked. By age two, children should start to follow two-step commands (pick it up and give it to mom.)

2-3 years– Over this year, most children have at least 200 words in their vocabulary (and as high as 1000 words!), begin to use 2-3 word sentences, say their name, use their personal pronouns (I, me, my, mine), and can be clearly understood by close family and friends. 

At this point it is important to know, (and I’ve said this before), EVERY CHILD IS DIFFERENT. The data above are of the average development for children in those age groups. Maybe your child hasn’t met one of the guidelines for his/her age group, that’s OK! It doesn’t necessarily mean that something is wrong. You may see that in a few more months they have caught themselves up and are blossoming! On the flipside, they are also made so you can know when your child is not blossoming. 

If your child is not meeting these developmental guidelines it is important to take action into your own hands rather than waiting for someone else to do something about it. I self-referred both my children to state programs. You don’t have to wait for a doctor to bring it up to you. Don’t be afraid to speak up. I know personally that it can be very scary when your child isn’t developing the way they should be and that it can be easy to overlook that there is an issue at all. However, it is our duty as parents to do everything we can to make sure out children grow and learn the way they should be. 

Each state has their own federally mandated, state funded early intervention program, including Puerto Rico, Guam, US Virgin Islands, Commonwealth of Northern Marianna Islands, and American Samoa. Follow this LINK to find the contact number for your state. These programs have been a lifesaver for my family. Now, I am not familiar with each specific state’s program, but they are all completely FREE and work with children from birth-3 years. After the age of 3, children receive free benefits from their local school systems. If your child is in school, they will receive services during the school day, if your child is between age 3-5 and not yet in school, they can still receive free services at the school or, in some places, they may receive school services at their daycare/head start (if enrolled). 

I hope that some of this helped someone out there! 

https://kidshealth.org/en/parents/not-talk.html

https://www.mayoclinic.org/healthy-lifestyle/infant-and-toddler-health/in-depth/language-development/art-20045163

Posted in family, motherhood, parenting, Uncategorized

Round 2

When Eli was Diagnosed with autism around 4 years ago the doctor told me there would be about a 20% chance of my next child also having autism. (Yes people, genetics, not the measles vaccine. So vaccinate your kids!) So, when Camille came around, I watched, listened, and observed everything she did. A rule of thumb of parenting is never compare your children to other kids (yeah, right.) It is a very important rule to follow though. Every child develops at their own pace. Just because little Timmy is walking at 9 months does NOT mean your child is behind because she is not doing it yet. If your nephew is speaking three word sentences at 12 months it does NOT mean your own son is behind because he can only say 5 words total. Our children hit their milestones at their own pace. They will deal with peer pressure in grade school so let’s not instill self-esteem issues yet!

All that being said, when DO you start to worry about where your child is developmentally? I don’t believe there is a real answer for that. I think, as a mother, you just know. 

Today’s world makes it so easy for parents to get their children evaluated for FREE through the state. Each state has their own fully funded programs. In Michigan, we have the EarlyOn program. When we arrived to Michigan I didn’t waste any time getting Camille evaluated.

So what was it about Camille that made me get her evaluated?

-Her gross motor milestones were always met, but a little behind
-Babbling was very delayed. She didn’t start actively babbling until around 18mo.
-She doesn’t play with toys as expected- she prefers to just hold items and walk around with them. She chooses to play with household items (shoes, dusters, etc.) vs baby toys. For a while between 12-18mo, she would only open and close doors and cabinets for entertainment.
-She walks very cautiously. She does not walk on uneven ground (grass, sand), she is uncertain when stepping across different floor types or over lips/lines.
-Does not climb on/off furniture. She does not attempt to climb stairs. She cannot get down from very low furniture (example- her 12′ toddler bed.) She will drop an object to the floor to judge how high up she is.
since becoming diagnosed she has attempted the stairs and crawling on . some furniture.
-She does not like a lot of touches- face wipes, washing hair, diaper changes, etc.
-She does not respond to her name or react when spoken to.
-She does not recognize or interact with other children/adults. She will allow other to be in her general proximity but other than that she does not pay them any attention.
-Little eye contact
-No mimicking. She does not copy other’s actions, repeat sounds. She will not point to objects.
-She likes thin items on her lips and around her mouth. Hair, hair ties, shoe laces, strings, etc. I would like to clarify that she doesn’t eat or even chew these things. She just likes the feeling of them on her lips.


To someone who has no experience with any of this, the evaluation process can be very, very overwhelming. There are so many people involved, multiple evaluations, and lots of paperwork. With my first born, Eli, I remember feeling overwhelmed, scared, sad, so many emotions. I felt unorganized. With Camille when the people involved started over-explaining the process to help me understand I politely said “Listen, this isn’t my first rodeo. I’m good. Do ya thang girl.” Honestly the best advice I can give to someone going through this the first time- relax and take the backseat. The professionals with these programs know what they’re doing. They help you every step of the way. The best thing a parent can do is get out of your own way. Let them help you with everything. 

After Camille’s evaluation process, she was placed in the moderate-severe autism range. Because she was evaluated through the School system/ EarlyOn program, this is what’s called an educational diagnosis. In another blog I will get into the difference between an educational diasgnosis of autism vs a medical diagnosis. The important thing to know for now is an educational diagnosis determines if a child meets the qualifications needed to receive special education services through the school system and is not a “firm diagnosis”. A medical diagnosis is a true diagnosis and opens the door for insurance supported therapy services.

So now what? We start by making a list of goals to work towards. For example, one goal is to get her to make independent choices for meals by using picture cards (PECS). Another is to get Camille to play more with age appropriate toys vs household items. We focus on the areas that are most important to improve. Keep your expectations low! Sometimes they take a while, AND THAT’S FINE!

Additionally, Camille is receiving in-home speech therapy. We will also soon begin occupational therapy, and perhaps Applied Behavior Analysis (ABA) therapy. 

Getting an autism diagnosis for your child is a very overwhelming, scary thing. This, however, is one that I was waiting for. I knew the odds and I was prepared. If anyone can embrace this challenge for a second time, it’s me. I am ready for this next chapter in my parenting world. I look forward to sharing this journey with others and hope that by telling our story, we can help other parents out there who may be going through something similar!

Posted in family, parenting, Uncategorized

His Friendships Make Me Nervous

Eli has come so far in his social skills. His vocabulary is amazing and he is so smart. He’s more comfortable interacting with others at school and in our neighborhood. Although he’s had such amazing growth I am still very nervous about him making friends. Mainly because kids can be assholes.

Eli is still so very sensitive. The littlest things make him upset. Currently, our biggest issues with him is his crying. At school when he’s told to change tasks he often times gets upset and cries. If the toy he wanted to play with isn’t there, he cries. If I’m not standing on the sidewalk when he gets through the gate, he cries.

At home, if he’s not granted the snack he wants, he cries. If he’s told he has to turn off his iPad and go to bed, he cries. When we can’t go out and do the things he wants to do, he cries.

Most significantly, he cries a lot during interactions with his friends. Whenever there is the smallest disturbance with his friends, he usually ends up crying and running inside. No kidding, as I type this the boys were outside playing tag and Eli just came in crying because he was it (which he’s usually it) and he couldn’t tag the other boys and was getting frustrated so he started crying. Lately when he’s upset he tells his friend he doesn’t love him anymore, and they look at him a little funny. I’ve explained that love is for family and like is for friends. I get very nervous for him because he’s 5 now and kids that age start to judge.

One thing I would LOVE to fix Is the interactions with friends that make him upset. Sometimes Eli is justified for being upset with his friends. Often times when they play tag he is always it, he will finally tag someone and they immediately tag him back. The other kids are a little older and a lot more fast than him, it’s almost an impossible game. Sometimes, though, Eli’s fits are unjustified. One time some of the kids were getting ready to play four square. Eli didn’t want to play and continued playing with his cars. His friend told him to move over so he didn’t get hit- Eli took that as go away we don’t want you here.

So how exactly do you get your child to stop crying for non-crying situations? You can’t just tell someone to stop crying. He feels these emotions and runs with them. I love the fact that he’s so passionate; he generally enjoys life. The problem is that even though his highs are high, his lows get extremely low. The only good thing about his behavior is the blow outs never last long. When he’s upset about a situation he is usually over it within a couple minutes. For the time being, his friends seem to forget about it almost instantly, too. As soon as he’s calmed down and wants to go back outside, they welcome him.

Another issue my husband and I are noticing is that Eli isn’t standing up for himself. He is new to socialization so he just kind of rolls with whatever the other kids too. When his friend comes over here he runs the show. They do whatever he wants to do. Which is usually play with Elis Ipad or Wii. Which are both one player so Eli either watches or plays something else. All we can do for that is regulate or tell them to do something together.

Really I think my nerves are normal and to be expected. Any parent probably feels like this sometimes (right?). All I can do is guide him, give him advice, and let him learn on his own. Friendships can be hard, especially new ones. But there’s not a doubt in my mind that Eli will find some great friends that are a perfect match for him and he will be just fine.

Posted in family, parenting, Uncategorized

How to survive Spring Break

 

Spring break season is upon us. On the last day of school when Eli’s teacher said “See you in a week Eli!” I went into a mini panic mode. The realization hit me that I was going to be stuck in the house all day with two kids for 9 days straight. I immediately went into planning all the fun things we’d do to pass the time: go to the zoo, automotive museum, picnic at the park, splash pad. It’s now Thursday of spring break and guess how many of those we have done? ONE! The picnic at the park is the only thing we’ve accomplished so far; and I’m really not sure if eating Panda Express at a playground is necessarily considered a picnic.

Obviously I am in no position to give advice about what to do for spring break. But….who cares? I’m going to make a list of good ways to pass the time during your Childs spring break that I actually did do.

  1. Continue with education- Just because they’re on a break from real school doesn’t mean their learning should take a break too! As a parent YOU are your child’s biggest teacher!

IMG_5679

2. Find them new friends- what better way to pass the days than to make new friends, right? They will spend the day getting to know each other and having fun!

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3. Household chores- Oh, you’re bored? Well I’m doing 5 loads of laundry, vacuuming 4 rooms, doing the dishes, and cleaning the bathrooms. TAKE YOUR PICK!

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4. Wear them out- personally this is the most important one. If you want your little shits to pass out at the end of the day then you need to get them outside and active. Nothing knocks a kid out better than long exposure to fresh air. 60% of the time, it works every time!

 

5. When they’ve done chores, played with friends, and ran around aimlessly for hours outside, it’s time for some more inside diversions. Popcorn movie party is the go to in our house. Here’s your apple juice, bowl of popcorn, and the remote; I’m going to go hide in my room until you come find me asking for a second bowl of popcorn.

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6. When you’ve done all these and your kids finally pass out. It’s time to reward yourself. Whatever your vice is, indulge; you’ve earned it. For me, the answer is obviously wine.

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Hopefully after doing all these steps your child should look like this and spring break should pass quickly. Before you know it your monster will be back in school.