AzEIP – Advocating for your child! (for families who live in Arizona & my personal story)

If you live in Arizona and have a little one with special needs, you need to know about AzEIP and Raising Special Kids. If you have a good pediatrician, they should have already directed you to these programs. If you have not been directed, you may want to at least inform your pediatrician of these programs.  These are critical components to helping your child become the best person they can be from an early age.

secrets-to-raising-a-happy-babyAzEIP:

So, what is AzEIP? AzEIP stands for Arizona Early Intervention Program. From their website: AzEIP is a “statewide interagency system of services and supports for families of infants and toddlers, birth to three years of age, with disabilities or delays.” There are so many great things about this program, but the most prominent is that it’s FREE to families if your child qualifies.

So, what is considered a disability or delay? Well, areas of Fine Motor, Gross Motor, Speech, Feeding and Cognitive Development are just a few main ones. If you suspect or your child’s pediatrician suspects your little one has a delay in any of these areas, you can file for an evaluation.  You do NOT need your pediatrician to do this. This is important. You, as the parent or guardian, can request the evaluation, even if your pediatrician does not. You can advocate for your child! I love this.

The referral:

A pediatrician only sees your little one for a very short snip of time. You see and know that baby much more intimately. You’ve spent sleepless nights, been through exploding diapers, and spit-ups galore with your little one. You fill out an “Ages and Stages” form at the doctor’s starting around 9 months. This doesn’t encapsulate the whole picture. Depending on your working status and general care, you may not even be able to fill out the form as completely as you’d like. This is OKAY. This is just to give your pediatrician a snapshot in to your child’s development. But, if you feel that this is not catching the things you’re seeing, you need to do a couple things.  First, talk to the pediatrician. DO NOT wait for them to notice these things – more likely they will not. Let them know what you observe on a daily basis with your babe. It helps him or her get a better picture when you’re communicating (and advocating) for your child. Second, fill out the AzEIP referral form. Though your pediatrician may not be terribly concerned, if you still are, fill out this referral. The pediatrician should not be offended that you did this and should support your decision as a parent or guardian.

My kids have a great pediatrician. She has the mindset of “better safe than sorry”. She recommended I refer my daughter at 9 months and my son around when he was about the same age. She explained the process to me and the likely outcomes for both. She helped me find the website and start the application process (we did my daughter’s referral right in the exam room).

hi-doctor-baby-852-cp-is-8colThe outcomes:

  • My daughter did not qualify for AzEIP care. Though she wasn’t crawling well, she was moving. Because AzEIP has a threshold requirement, she did not meet that threshold. And, with a little more time and patience, she learned to walk (16 months old). She’s almost three and no one would even know that she was a little behind the curve in this area.
  • My son did qualify, in multiple areas. When he was evaluated, he was not sitting up on his own, he was doing this “inch worm” type crawl to move and they noticed – as his pediatrician did – the hypotonia. He qualified in his gross motor skills (PT/OT), fine motor skills (OT) and feeding (Feeding therapy).

What to expect at the evaluation:

Well, the best thing is that they come to you! They will come to your house to do the evaluation. They like to observe your little one in their own environment, but also try to make it as convenient as possible for the parent or guardian. Typically, there’s 2 rounds. The first round, the service coordinator will come and do a general evaluation of your child. They will also just talk to you about your observations and get your insurance information. The program is free to families, but they still do charge your insurance for their part. This means that AzEIP will absorb anything insurance does not pay so you pay nothing. If the service coordinator determines that a more in-depth evaluation should be performed, they will schedule a second visit with you.  This visit will usually include a therapist (or two) to evaluate your child more closely. Depending on what you tell the service coordinator, she’ll do her best to match you with the proper therapist so the evaluation is as efficient as possible. Due to their busy schedules, plan on a waiting period of about 2-3 weeks between evaluations. This is mainly due to linking all the correct people on the same day to meet with you and your child. At the second evaluation, the therapists will work with your child directly while you talk to them about your child’s overall development. This usually lasts anywhere from 30 mins to an hour, depending on what they need to check.  The have a chart they use to identify the markers of delayed development. There are 2 ways to qualify: below a certain threshold in one specific category (threshold depends on the category), or a combined score of 70 pts or less.

(Between the time that it took from the first eval to the second eval, my daughter began to crawl. This was the main reason she did not qualify at the second eval. So sometimes it just takes patience for your child to develop at their own pace.)

What to expect after the evaluation:

If your child was declined services, it may still be prudent to follow up with therapies elsewhere. The only difference now is that you will have to pay your co-pay/deductible out of pocket.

If your child was offered services, the therapists and service coordinator will go over the services for your child. They will also set-up a plan of action for the next 3 to 6 months depending on need. At the end of the allotted time, they will most likely set-up a time to do a re-evaluation to determine new goals and services.

(A good example of this is with my son. He initially qualified for physical therapy only. After his first re-eval 6 months later, he qualified for physical therapy, occupational therapy and speech therapy.)

babiesonthemove-57Being present:

These in-home sessions require a parent or guardian to be there for the initial meeting. Depending on the actual service provider, they may allow you to sign off on another family member or sitter/nanny. Mine did not – they required me there each time. These sessions can work around your schedule, as needed. Because I worked part-time in the mornings, I could schedule my meetings in the afternoons. Once I became a SAHM, I had the freedom to schedule when therapy best suited my son.

It’s important you’re paying attention to what the therapist is doing, saying and coaching. They only see your child once a week, or possibly less.  You are the one that will need to do these therapies each day. It’s tedious and sometimes difficult, especially if you have a second (or third) child in the midst. It’s critical to their development to listen to these therapists. They have special training and coaching techniques to help you best help your child.

Your child will likely resist the therapy. He or she is used to doing things a certain way, and let’s face it: Therapy is hard! It’s building muscles and developing connections that weren’t there already. Your little one is used to the way they currently do things – it’s easy. Now he or she is being introduced to something that isn’t easy, possibly hurts a little and definitely is not comfortable. If your little one is not vocal or does not use speech, your baby will likely show you distress through: Crying, screaming, resisting, trying to get away, seeking comfort – either from you or a favorite binky. You need to know that this is normal and okay.

The best way to prepare your child is to make sure he or she is well rested.  The worst thing you can do is schedule an appointment right when you know it’s nap time! If you are not doing feeding therapy, then make sure your babe has eaten enough to not be hungry. Also, you should make sure he or she has a fresh, clean diaper before the therapist begins working. Eliminate your child’s excuses to cry – this way if little one does cry, it’s specifically due to the training. sad-baby-si-770x513Though he or she cries a little due to discomfort, it’s okay! It takes a lot to retrain poor habits: just imagine if that cannot be communicated well. Imagine the confusion, distress and down right frustration. Now imagine you couldn’t communicate back! Your only way to say you didn’t like what was happening was to cry. It does get better! After regular therapies, your child will begin to be used to what’s going on around him or her and not be so distressed.

Know our goals:

You will set goals with your service coordinator and therapists about what improvements you would “reasonably” like to see in the next few months. These items may not be huge milestones. I remember one for my son was just to, while standing, side-step along the couch. That was it! It seems so easy and little, but depending on your child’s need, it could be life-changing.

Baby crawling indoors smilingAlso, you need to set and know your own personal goals. Not with your child’s development, but your expectations as your child’s caregiver. You will not be perfect about following up on therapy every day. You will not be perfect about providing the perfect environment for your child to develop new skills. It’s not feasible to think you can do it all. And best part – NO ONE is expecting you to! You need to be the BEST caregiver you can be for your little one. You do not need to be the PERFECT caregiver – they don’t exist! Note the difference – do your best, not what’s considered perfect.

At the end of all of this, there is no gold star, participation ribbon or trophy to be won. There’s no crowd of people applauding at the accomplishments (well, maybe grandma and grandpa). There is just you, your child, and your family. Remember that this is why you started this whole process. You wanted to be the best advocate for your child! Don’t lose heart, don’t let set-backs be disappointments, and just do the best you can each day. You are rockin’ this parenting thing!

 

“Of Course” – Hearing this phrase from a 2 1/2 year old makes me laugh

20190330_081327 (2)Do your kids have cute phrases they use? REAL phrases that they use correctly, you would just never imagine this little human using it? I do! She’s a talker and has been since about 6 months old.

She picks up on words very quickly and understands their meaning just as quickly. She uses full sentences and can even verbalize “why” she was doing something. Granted, the “why” is, many times, a two-and-a-half year old reason, but it’s great to hear her use words this way.

She speaks in full sentences, but my husband and I are the only two people on the planet who can fully understand her.  She has some words that make no sense.  We have no clue where she even got the name she came up with other than she made it up! Our favorite by far is “crannits”. You heard me “crannits”. For about a week, we couldn’t figure out what she was talking about.  She would get so upset with us when she would ask for her crannits and we didn’t follow through.

Back story: The week prior to this, my husband and I had our guest bathroom fixed.  The floor had some water damage and we had some boards replaced. My husband then bought the click-lock flooring to use and installed the flooring himself. He used the tile spacers to help him from getting too close to the wall. He had to buy the hammer and other tools to get the job done. After the job was done, we cleaned up the tools and took them to the garage.  This is when the crannits requests began.

CrannitsSo, after about a week of hunting all over the house for these crannits, we figured out her request. She was asking for the tile spacers! She called them crannits. What a fantastic name! We now all call them crannits. We hope it catches on.

This is our little girl. If she doesn’t know the name of something, she’ll make one up. Many times, when she makes a request of me… OK, let’s admit it… a demand… I reply with, “Sure, baby” or “Of Course” or “Yes sweety”. She has related these phrases with an act of affirming love from me.

So when I ask her “Will you do blah blah blah?”, more often than not she responds with “Of course”. It’s a perky little reply with determination to help mommy with her request. Many times it’s things like, can you get the wipes for me (because your brother has a dirty diaper and I didn’t smell it)? Or could you put your plate in the sink? Nothing major, just little things.

Then there’s the half breath “Of course” after she’s crying and I ask her if she wants to do something. This could be from “Do you want to go to bed?” or “Do you want mommy to give you a hug?” or (my favorite) “Do you want mommy to hold you?”

20190304_122946 (2)Every time she says this, it makes my heart giggle – yes, even in the sad moments. I giggle at the fact that she uses it so well. I giggle at the fact that there may be better phrases or words for that particular situation, but she still goes to her old stand-by “Of course”. She says it so matter-of-fact. Many times she’s saying it before I finish my question.

I hope she never gives up on this phrase. I love how she uses it. I love all the words she knows and is continuing to learn. I’m amazed by her vocabulary and ability to put these words in to full sentences.

Sports – the costs of “doing business”

Our oldest (turned 14 this summer) has been involved in sports since she was 9. Why? Because all the experts out there tell us that if kids are involved in sports they become a more well-rounded individual. We wanted her to have an experience where she had to work with a team and not just for herself. However, she doesn’t really have that competitive spirit. She likes to win, but is not driven to do so. She likes making friends and socializing more.

We gave her some options for a sport she could try and she landed on soccer. I personally hate soccer and always have. I tried to steer her towards softball (I played at her age) or volleyball (I played in school), but no. Soccer was what she wanted to try.

Ok, so soccer. What the heck are the rules for soccer? Something about kicking the ball and not ever using your hands. I never understood this, like I think it was just a way to make kicking the ball around harder if one could not just bend over and pick it up. Then there’s all these rules about who goes where and does stuff. That was my experience. My husband’s was similar, so we were jumping in together.

The time costs:Looking at watch

The time involved in carting her to practices, games, meets, etc. is daunting. I don’t know how some families do it. I tip my hat to the single moms and dads, the working families and all those that have so little time, but find time to do these things for their kids.

What I do know is that it takes a toll. I’m tired of the practices and going to and from to get her. I’m tired of all the games. My car is tired of all these things too! Time is magnified in our family because of having two littles under the age of 3. We have to work around nap schedules, bedtimes and meals. There’s so much to manage our time, it’s become insane.

The saying “time is money” may be true, but “time is sanity” I think works better in my family. Sports is a big part of that whole time thing.

The actual costs:

Soccer moneySo there are actual costs to this stuff. Yeah, I know, it’s like we can’t just let our kids play an organized sport for free and stuff. There’s usually a sign-up fee, then families have to purchase a ball, cleats, shin guards, socks and shorts. Sometimes, team shirts are included in the sign-up fee, how nice. With her growing body, each season she participates is costly. I know for other sports, this cost can be even higher!

20181101_192756 (2)

Receiving “Most Improved Swimmer” medal her first year of competitive swimming.

She also became interested in swimming last year. You would think a swimsuit, cap and goggles would be all she needs. NOPE! These items must be team suits and caps. Then there’s the pool fee and the fees to participate in the meets. Even with this being offered through the school, it still costs a pretty penny.

I’m truly grateful we can provide this to our daughter. She has gained so much life experience. I remember around her second or third season of soccer, she was just goofing off most of the season.  So much so that the other girls didn’t want to play with her anymore because she wasn’t trying when she played. This really got to her. She realized that it wasn’t all about being a goof and joking with her friends, there was real work that was involved.

This brings me to my next point…

The REAL costs:

Aside from all the time costs and the dollar costs, there’s something more that we’ve noticed with her. She’s learning about responsibility, integrity, teamwork and sportsmanship. She’s learning that it’s not all about her. The cost for her is that she has to give up her teen (and pre-teen) selfishness to work with the team. The cost for her is that she has to accept that she’ll make mistakes and the team may be mad at her, but it will eventually be okay. The cost for her is that she has to step outside her comfort zone and leads and guides many of the newer kids. The cost for us… sitting back and watching our little girl grow in to a well-rounded young lady.

20190812_203111 (2)And that is what she is growing in to with grace and dignity. Sure she has her teen moments: her angst, her eye-rolls, her pffs at our comments. But she also understands the importance of working towards a goal, failing and not giving up, and working with individuals to reach a common goal, even if they annoy her.

Think about it: this is exactly what us adults do every day. We have to work with people we don’t like and have no say in whether they stay or go. We all have to work for a common goal. And most importantly, we have times we make mistakes or just completely screw up, but we don’t give up and we learn. We have a team to back us up and know that this is just a moment in time.

So, bring on the new soccer cleats, balls, shin guards, socks and shorts. Bring on the new team swimsuits and caps. Bring on all the start-up fees. Bring on the trotting all over creation to get her where she needs to be. And bring on the early mornings and late nights. Because at the end of all this, she’s going to be how the experts say “well-rounded” and successful in this thing called life!

Isn’t that where we all would like to be?

Couch time makes my heart smile

My precious angel girl. She’s so perfect to me in every way. Though I know she’s hardly perfect, she just lights up my face with her personality. She’s feisty, independent yet also very empathetic and thoughtful.20190118_152408

One thing she is not is an early riser. Can I get an Amen?! This was absolutely wonderful for my night-owl husband and me. She would go to bed around 7 pm, and be in bed until at least 7 am. Yes! Twelve plus solid hours of sleeping.  No middle of the night wake-ups, no early morning “are you up yet”, our lives were golden.

Then we got the sledgehammer with my son. He thinks, “The sun might start coming up, so I’m just going to get up now.  Don’t want to waste that daylight!” He’s usually up by 5:30 am.

Our morning routine usually looks like this (note, I am NOT a morning person, so this is just how I interpret the morning while wishing I was still asleep):

  • Get the hell-creature of early morning perkiness up and feed him before he wails his banshee cry of hunger.
  • Oops! Didn’t change that pee-faucet catcher early enough, so now it’s leaked on his freshly worn onesie. Guess he’s going topless.
  • *hears the start of the banshee wail* Oh yeah, chair, food! *makes coffee*
  • Shovels 10 tons of food in to this miniature daddy creature (I don’t know where he packs it all). *takes a sip of coffee – still too hot*
  • The creature is now starting to resemble a baby boy, though he’s not too cute yet.
  • He gets a wipe-down, and is now free to roam.
  • OH CRAP! Forgot to close the baby gate to the kitchen, this baby has now knocked over the dog’s water and is trying to eat the dog food. Eww!
  • Get the dog food out of baby’s mouth. Clean the baby, clean the floor. Change the diaper – yeah! that’s what it’s called – again.
  • He now smiles his wide mouth, ear-to-ear smile.  He’s starting to look like my cute baby boy now! I smile back.
  • Allow him to roam again, this time with the kitchen gated off.
  • Go to the kitchen and make my breakfast – oh no! where did I sit that coffee down?!
  • *gets coffee and takes sip – too cold* I dump the cold coffee and start over.
  • *takes sip of new coffee – too hot, but still chug it* I shovel my breakfast as my sweet-sweet boy stands up and tries to grab it from me. I literally have to eat with my plate above my head or in another room.
  • Thank the heavens! He’s almost ready for his morning nap. Oh crap – forgot about that toddler of mine.
  • I look on the viewer, and sure enough, she’s awake, just laying on her bed.
  • Get toddler up, change her diaper ASAP and get her breakfast ready.
  • Now it’s definitely time for baby to go down for morning nap (about 8:30 am).
  • Toddler pushes her food around, maybe takes 2 bites and insists she’s done.  She then sits in her chair another 30 mins, because I am busy getting baby ready for bed (and let’s just face it, she needs to eat more than 2 bites!).
  • Baby goes down! He’s out for at least 2 hours.
  • Go back down stairs and force feed my toddler. I bargain with this child, because her will is much stronger than mine this early in the morning.
  • She’s finally “finished”!
  • I set her free to roam and she heads straight to the couch. Gets a pillow and blanket and asks to watch something on the TV.

I give this all to you to get to this point in my day. This is my joy moment. I love when she just wants to lay on the couch, many times lay on me as well, and “wake up”. We usually watch some show on our Roku, or a movie, but it’s our time. It’s just her and me sitting together, cuddling, talking, and eventually playing.

It’s almost as if she knows I need a break. Our little guy, I love him so much, is such an early riser. He’s so energetic when he wakes, and I just can’t keep up in the morning. It’s as though she feels this and knows – or so I’d like to think that.

I really believe she’s just like her daddy. They take a while to really get revving in the morning. Usually, they like to lay in bed for a good 30 minutes. Then they’ll have a small breakfast and just do something relaxing for another 30 minutes.20190613_083807

I know these moments won’t last forever, though there is a part of me that wishes they would. I know it’s fleeting, and I soak it up. There will be a day she will hide in her room, listening to her music with ear buds and not want to be around us any more than humanly possible. So I hold on to this time. This is our calm time, our quiet time, our cuddle time. It’s my joy time!

One year of hypotonia. Learning and loving through it all.

Every mother loves to hold and snuggle with their new baby.  What a treat when that baby is easy-going, loves to sleep and eats as expected.

We had our first sweet bundle of joy and none of the above applied.  She was colic-y (is that a word, if not, it is now!).  She didn’t sleep, eat and certainly wasn’t easy going.  If she wasn’t crying, she was fussing.  If she wasn’t fussing, she was whimpering.  You get the picture.  She was (and still is) our “tough” baby.  I wouldn’t have her any other way.  She’s almost three and loves to talk to us, tell us her opinion and make demands.  Typical almost-three year old.

When she was about 19 months, I had my son.  This was a night and day difference between her and my son.  His first night in the hospital and he slept almost eight hours!  Of course, when the nurse realized he slept so long, she immediately woke him up and we tried feeding. Sigh… so much for sleeping through the night!  With our other experience being quite the opposite, we were happy to have a little sleep!

We noticed early on though, he wasn’t feeding well.  He would constantly latch on and off, then on and off again.  He was struggling to suck and had a very noticeable tongue tie.  So, like our daughter, we had the tongue tie revised.  No improvement.  You could imagine our frustration and doubt.  We couldn’t figure out why he struggled so much.  He wanted to feed, he just couldn’t.  We went through IBCLC’s and even had a feeding consult.  He was not just struggling with me, he was struggling with bottles too.  We were lost and desperate.

At three months old, our pediatrician noticed it… hypotonia.  She was hesitant to diagnose this, since it is typically a condition of something else, not the cause.  She told us what to watch for, suggested therapy (physical and feeding) and gave us some resources.  We got him in to physical therapy, feeding was more of a challenge to work with.  He went to PT once a week and mainly worked on strengthening his core.  The therapist would give me things I could do to work with him at home.  Then the new year hit.  And the much higher bills of therapy hit.  We continued to go, knowing this was best, but at a much higher price.  Then the therapist that was working at this company (a contracted therapist) was not renewing her contract, thus we had no PT.  We were discouraged to say the least.

Fast forward to his 9 month appointment.  Doc comes in, evaluates him as usual and tells us he definitely has hypotonia.  She wants to continue on the PT route and start looking in to neurology.  Neurology!?  Seriously?!  I was overwhelmed with the “what ifs” and couldn’t believe my adorable, sweet-smiling, easy-going boy was going to need more evaluations.

We worked through the state run early intervention program to continue his physical therapy and feeding therapy.  This was extremely nice as it was free to us and the PT was in our house – no running to an appointment!20190424_181852

He made strides! At nine months he could sit up and eleven months he was crawling!  He wasn’t just doing his “inch worm” crawl (we called it this because he would push up on his hands and knees, then lunge forward, flopping his chest on the ground and doing it all over again).

We worked on getting him in to neurology asap.  His pediatrician wanted to run the standard one year tests, but also a chromosomal micro array work-up.  This was something she knew neurology would want anyway, and since he had to get blood work done, why not?!  I thought it logical, as did she.  Apparently our insurance did not!  With any chromosomal test, it has to be approved prior to the appointment.  I didn’t know this!  I had my first crash course in learning the insurance company nuances… it wouldn’t be my last.  They declined the test, saying there’s no medical need at this time.  What?!  Did they have a doctor magically evaluate my son to determine need?  I explained to our case worker that we were going to neurology in a month and knew they would also be requesting this test.  We were trying to avoid the delay and provide neurology with a better picture of my son’s health so they can make a more informed decision on what to do next.  She seemed genuinely sorry (my hands are tied kind of thing) and gave us some suggestions.

After talking with the pediatrician, we decided to just wait until the neurology appointment.

Here we are, on the precipice of knowing, but not knowing all at once.  As a fairly logical minded person, this is a struggle for me.  I struggle wanting to know what’s specifically wrong, so we know how to best treat it.  I also know that we may never know what is the cause of his hypotonia and will only be able to do our best to treat this.  Leg braces, 20190604_171527which I have learned are called SMO or AFO, are a high probability. Back and hip braces as well.  More fights with insurance about their rules and procedures are expected for all of this.

In the mean-time, I have an adorable little boy.  A boy who knows nothing different than what he currently has.  He does his best with what he’s been given and always with a smile on his face.  He’s our easy-going, loving kid.  He loves to be held and snuggled.  He loves to laugh.  And seeing this in him, seeing all his love of these simple things, helps me stay joyful through it all.