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!