Tuesday, May 9, 2017

IEP (Individual Encouraging Positivity)

When your child has special needs, it's easy to feel like you're not doing enough for him. This can be especially true when it's time to update your child's Individual Education Plan. 

Maybe there are goals from the previous IEP that he hasn't yet met. You might think, Why didn't I work harder on that goal with him at home?

Maybe you get the new IEP and feel overwhelmed with the sheer number of goals there are to work on. You might think, I can't possibly help him with all of these things at home. You wish you could, but there are just so many things to do: work, laundry, grocery shopping, cooking, cleaning, and the list goes on.

I fell into this trap of negative thinking with regards to my son's IEP meeting tomorrow. The negativity was draining me of energy yesterday evening, and I spent a longer time than I care to admit on the couch, watching Netflix and aimlessly browsing the internet. 

This was not the best use of my time.*

So today, I'm working on adjusting my attitude. Below are some actions that are helping me. I hope they'll help you, too, if you find yourself falling into a similar trap of negative thinking about the IEP.

Think of all of the things that your child can do now that he couldn't do a year ago. My son can now (receptively) identify pictures in books. He can now share objects of interest with others. He can now more effectively communicate some of his desires. He is now using his left hand more than he used to. And the biggie: He can now walk independently. 

Think of all of the things that you have done to help your child make that progress. I've read to him. I've modeled communication skills, such as signing, for him. I've taken him on walks. I've encouraged him to use his left hand. I've loved him.

Remember that the school staff are there to help your child. No one expects you to single-handedly help your child meet all of his IEP goals. That would be unrealistic. Thankfully, you have a whole team of qualified teachers and therapists who, together with you, can help him make progress.

Cultivate feelings of gratitude toward the school staff. My son's teacher does one-on-one work with him to help him master pre-academic skills. His therapists identify ways in which therapy can be incorporated into the classroom and then communicate those ideas to his teacher, teaching assistants, and aides. I am so grateful that they do these things.

Be kind to yourself. For me, this means allowing myself time to read, write, and watch inspiring YouTube videos, and treating myself to M&Ms (preferably in my Best. Mommy. Ever. mug, courtesy of my hubby and kiddo). It also means reminding myself that parenting a child with special needs is a challenging job and, although I'm not perfect, there are certainly things that I'm doing right.

*I'm completely fine with watching Netflix and aimlessly browsing the internet in moderation.

Tuesday, May 2, 2017

In Search of a Special-Needs "Utopia"

© Jersan98115 | Dreamstime.com
If you could pack up and move to a place where your family would have everything it needs to thrive, where would you go?

It's a question I've been trying to answer for myself.

My family currently lives in the Netherlands, and when my husband's work contract ends in 2018, we plan on moving back to the United States, where we're originally from.

The next place we move to we'd like to settle down inpurchase a home, stay for many years, and help form a solid local support system for our son with cerebral palsyso it's important that we make a good decision.

After much discussion and online research, my husband and I have identified a metropolitan area in the U.S. where we'd particularly like to live. For privacy reasons, I won't mention the name, but I will say that we've chosen it because:
  • My husband's field of work is narrow, but in this particular area of the U.S., there are multiple companies that he is interested in possibly working for. If he finds a job in the area but later decides he wants to switch to a different company, there's a decent chance that he'd be able to do so without us having to move. (My work doesn't factor into where we move since as a freelance medical writer/editor, I can work from anywhere with a good internet connection.)
  • There's a children's hospital in the area with a strong neuro department, which would be good for my kiddo, who has epilepsy.
  • It's in a state with one of the better health insurance systems in the country, which would also be good for my kiddo since he needs physical, occupational, and speech and language therapies, and relatively frequent visits to various doctors.
  • It's a highly populated area, which translates to more opportunitiesto make friends, find doctors and therapists that we like, etc.and more options in terms of schools.
Having identified this metropolitan area, I've been researching specific towns that we might want to live in. Living near good schools is a top priority, as is minimizing my husband's commute time.

There's a private special-education school in the area that seems quite good. My hope is that my son wouldn't need it (and that a free public education would more than suffice), but to live within easy driving distance of it, just in case, would be reassuring.

So, I've been looking into towns between the town where that school is located and towns containing businesses where my husband is potentially interested in working, and researching their public elementary schools. In doing so, I've clarified some of my educational priorities for my son, who will enter pre-kindergarten or kindergarten after we move. Specifically, I'd like for him to attend a school that:
  • Has lots of support staff already in placespecial-education teachers, occupational therapists, and speech and language pathologists, at a minimum. Bonus points if there's a physical therapist, adaptive PE teacher, social worker, and/or special-education case manager.
  • Values inclusion. I want him to feel welcome at school, and respected. As I've been researching schools, I've noticed that I'm drawn to the ones that specifically mention inclusion on their websites.
  • Has strict food-allergy policies. My son is allergic to nuts, peanuts, and sesame, and due to communication issues, if he were to accidentally get exposed to one of these foods, he would have a difficult time communicating that he was having an allergic reaction. For my peace of mind, I'd prefer to have him in a nut-free, peanut-free school. In my research, I've been surprised to find that many elementary schools not only allow peanuts but actually serve peanut butter in the cafeteria on a daily basis. The thought of another little kid offering some of their peanut-butter sandwich to my son when an adult isn't looking, or even messily eating a peanut-butter sandwich in his vicinity and then him accidentally ingesting some of it, is quite scary. That's something I'm not willing to risk.
  • Is in a town that is reasonably affordable to live in. This is especially important as I think about my son's future. I'm uncertain what he'll need: Adaptive equipment and/or therapies that won't be covered by our health insurance? A private special education, if the public schools have difficulty meeting his needs? I want to make sure that our house payments are not so high that we can't afford to save for all of the unexpected future expenses.
Happily, I've found a school district that appears to meet all of my criteria. Of course, it's too early to register for a school, or even to visit schools, considering that my husband hasn't yet applied for jobs in the area.

In fact, I feel slightly crazy for having done all of this research on schools already, when it's not even certain that we'll be moving to the area. It's just that there's so much about my son's future that I can't controlWill he talk? Will he be able to live independently?that working on this one thing that I can control, relieves some of my anxiety.

I'm sure that wherever we end up won't actually be utopian. But as long as I have my family with me and access to good health care and a good education for my son (plus a good internet connection ;-) ), it will be "utopian enough" for me.