My Personal 20 Step Guide to Surviving the Kindergarten IEP

I was asked recently to provide my thoughts on preparing for and surviving Eliza's IEP as she transitioned from preschool to Kindergarten.  Much of relates to life in New York City, but may be helpful if you live outside of the city or state. 


And as always, your mileage may vary:

1. Get a neuro-psych evaluation early in the fall. It gave me a good sense of Eliza's strengths and weaknesses and helped me to evaluate schools with that knowledge in hand. Of course Eliza improved and changed in the ensuing months, but the report was a good guidepost for me.

2. Contact your local Community Board about upcoming zoning changes and the opening of new public schools. They can give you a sense of what is available in your district, although I would note that there is no guarantee that a child falling within CSE (New York's Committee on Special Ed) is necessarily placed in your zoned school.

3. In public schools tours are often given by a PTA member so asking about their child's experience can be helpful. If you can tour with another parent you are friends with or acquainted with, it can be helpful since you can compare notes and discuss your observations because there may be something you missed and the other parent noted.

4. Look at the physical structure of the school (not just the quality of the paint job) to see if it meets your child's needs (is the school barrier free, is there a play yard, is there a sensory gym, what does the PT gym look like, what level of technology does it employ in the classroom, is there an art program, etc.).

5. Ask about the experience of the therapists on staff, where did they train, previously work, etc.

6. Ask about after school programs at the school and if they are available, would they benefit your child or add something to you child's day that would be enjoyable (for example, Eliza's school has after school programs until 5:45 ranging from ballet, music and art to Tai Kwan Do)

7. If you are looking at public schools, ask about the historic ratios of children in the integrated classes and the experience level of the teachers. While this is no guarantee of what the next year's class size and make up would be, it is a bench mark to use as a guide.

8. Since public school tours are primarily geared toward typical children, ask to observe an integrated class. The tour guides are generally accommodating with this.

9. If you are looking at non-public state funded schools, ask if they have any current plans to drop their NPS status, since that may impact issues relating to financing tuition in upcoming school years.

10. Although I was most keen to see the kindergarten classes on the tours, ask to see the upper level classes as well. Although it is hard to envision what your child may need in 3 or 4 years, it is a good idea to see what the school is providing down the road and the general class structure and make up.

11. If you are looking at non-public state funded or private schools and your child is selected for an interview, don't be reticent about asking what the school is looking for in the class profile, how your child will fit into that class profile and why the school thinks it is a good fit for your child (as opposed to why they think your child fits their class profile).

12. If you are looking at non-public state funded schools or private schools, ask if they provide PT. Many do not and if your child needs PT, it would be an after school therapy you will need to coordinate and arrange.

13. Ask how many OTs, PTs and SLPs there are on staff and how many children they are servicing. Sometimes doing the quick math in your head will lead to the conclusion that not all children can get their full services at school and you would therefore get an RSA (in NY a Related Service Agreement) for after school therapy. If that is the case, you would have to factor that into your schedule and your child's daily schedule.

14. When you have settled on your preferred school choices meet with your child's current teacher/therapists/social worker to get a game plan for your IEP. Decide ahead of time what your wish list is, but also know what you are willing to negotiate. Your child's current teacher/therapists/social worker are great resources to help guide you on this for your child.

15. When thinking about therapies that you want to be provided during the school day, ask whether these are push-in or pull-out therapies. If they are all pull-out therapies you are seeking and it is a total of 12 hours a week for example, that means your child is missing 12 hours a week of class time with his or her peers. In my case, I initially was firm that I wanted only 1:1 speech and OT, but after discussion and reflection on how Eliza does in a small peer group, I decided that having some sessions of speech therapy and OT in a small group of 3 would work well for her. Also keep in mind your child's busing needs during the school year since that will be addressed at the IEP meeting.

16. If you are looking at public schools and think you child needs a 1:1 aide (whether for behavior, feeding, motor function issue, etc.) be prepared to support that need at your IEP meeting.

17. Prior to the IEP, make a checklist or outline of your child's strengths, weaknesses and needs and have the documents handy to refer to them during the IEP meeting. Although you may have submitted 100 pages of information to the IEP Team, so have another 100 families, so the IEP Team is not likely to know your child's history with any detail, and may be basing its assessment on a 30 minute observation of your child. If you can refute the observations and back that up with references to progress reports, the neuro-psych report, medical reports, your arguments for the services are more persuasive.

18. If two parents attend the IEP meeting, it might be helpful to designate one as the "advocate" and one as the "note taker," so you can more easily formulate follow up questions or review areas that may have been overlooked. If you are a single parent, it might be helpful to bring a friend or family member to be the "note taker."

19. www.wrightslaw.com has some excellent resources about IEPs, the IDEA and a "yellow pages" of advocates and attorneys by state.

20. As to selecting a neuro-psych, I would note a few things. Many do not take insurance and the cost can run up to $5,000. There are some who do take insurance and you should contact your insurer first to see what, if anything, they will reimburse you for the costs, or find out if they have any neuro-psychs in their network. Some hospitals have programs which offer free or discounted neuro-psych evaluations if you agree to allow them to anonymously use the data they collect during the evaluation, but these programs vary year to year. I opted to have Eliza's neuro-pysch testing spread out into 2 to 3 hour time blocks (with a break) over the course of 4 weeks since I felt any more testing in one or two days would be too much for Eliza and would not give a true reflection of her abilities.

If anyone else has any suggestions to add the list, feel free to do so in the comments.

"Sustenance"

A friend recently forwarded an article entitled Sustenance written by Kerry Cohen, in the July 29, 2011 edition of Literary Mama.  It is a beautiful, and painfully true, article about raising a child with a feeding disorder and who simply refuses to eat.  While the origins of feeding disorders vary, and can often be the result of basic mis-wiring of some unidentifiable neural connection, Ms. Cohen's description of life with a child who has little to no interest in food, the never ending and changing theories and treatments for the disorder presented to the parents and the deeply held hope that one day this will end and your child will eat macaroni and cheese, resonates with all parents who are facing this challenge.

Thank you Andrea for sharing this article.

Wave Runner

Eliza is a bit spoiled when it comes to sun and surf, since most of it has been in the Caribbean,  Even though Saba's beach is rocky (but we now have a nice white sand beach!  WooHoo!), the water is 85 degrees, instead of the 65 degrees that we have in New York.  But since the weather was almost 100 degrees, off to the beach we headed.

We got up early and were some of the first on the beach. The main benefit of this was getting a parking spot near the beach, thereby cutting down on the time one must act like a Sherpa.  It is amazing what 4 kids and 4 adults need just to hang out at the beach for a few hours.

Eliza was not daunted by the surf (nor was her dino) and she enjoyed running into (and away from) the waves.

And she was quite stylish in her one-shouldered one-piece:

This was one of the first beaches at which my Dad taught me to swim and I am sure he would have been delighted to see Eliza do her "shark dives" into the waves :)

Only 18 more days to the 85 degree water!

"Single" and "Special"

Of late there has been another crop of articles and discussions in parenting magazines, parenting websites and blogs discussing the difficulty of working and raising a child.  It seems to be an annual tradition.  Many of the magazine articles and the comments quickly degrade to a competition of which mom is better, the one who stays at home or the one who pursues a career.

The discussions and articles often are replete with comments to the effect that "I am a better mother than you because I quit my job and stayed home with my child" or "my husband doesn't help with the child so I am practically a single mother" or "I work part time and that's practically as hard as working full time."

What is lost in these arguments is that (a) most single mothers cannot quit their jobs since there would be no income for food, housing, health insurance and other basic needs of the child, (b) having a husband who doesn't participate in day to day childcare may stink, but that husband does provide (in most circumstances) financial assistance for the food, housing, health insurance and basic needs that require money and (c)  well, no matter how you cut it, working 2 or 3 days a week and being a stay at home mom the other 4 or 5 days a week is not the same as working 40 to 50 hours a week and knowing there is no second income to make up the difference (whether that second income be in the form of a partner's/spouse's paycheck or a child support check).

Add in the fact that you are the single mother to a child with special needs and you have entered a whole new realm of why you have to work.

I belong to a number of parenting groups for parents of special needs children.  Some families are fortunate to live in countries that have generous paid maternity leaves (a year or more), but most live in the US where employers and the government expect you to be back at work 6 weeks after giving birth.  Assuming you have a typical child, this would suck anyway.  Most mothers don't want to put their infants into day care at 6 or even 12 weeks old.  Some families are lucky and have an endless parade of grandparents, aunts, uncles and neighbors to watch the baby at little or no cost.  Other single moms, like myself, would be lucky to be able to rely on the building superintendent, or hell, even UPS guy with spare time to watch Eliza between deliveries.

Child care becomes more difficult when you have a special needs child since daycare is often not an option because either (a) daycare centers won't take children with medical or special needs and (b) your child cannot medically withstand the germs in daycare centers.  Finding a nanny is not so easy either since not every nanny would actually be able to operate an oxygen concentrator, read a pulse oximeter, administer a half dozen medications day, work with three or four therapists each week or frankly, and simply not be afraid of your baby.

As a single mom in the US, having to work provides for the basic needs of the mom and the child:  food, home, insurance, clothing and if you are lucky, cable TV.  In addition, the single parent of a special needs child has to work since there are the additional costs of the endless co-pays for hundreds of doctor appointments (yes, hundreds in 5 years), medication co-pays (no generics for these kids), durable medical equipment, co-pays for thousands of hours of therapies, the endless list of things your insurer thinks are uncovered or unnecessary (like special formula, or compounded medications) and a nanny since daycare is not an option (see scary baby scenario above).

So perhaps before voicing your opinion and denigrating a working single mother, think about what you know (even in its most basic form) about the family unit before you spew off some invective about how the mother should be home with the child. I have been told over the years, and very recently,  that "I asked for motherhood" (by spending years and an ungodly sum of of money on fertility treatments) so I had therefore abdicated my right to occasionally complain about the realities of life.  It is an interesting position for people to take, since last time I checked, the married women I know who are mothers also actively sought out motherhood.  The more disturbing thing is that most of these comments come from married women, or women who are at least receiving a child support check.  Rarely have I ever heard any of my male friends or acquaintances make such comments, but then again I've never heard any of the men I know criticize another dad for working to support his family.

So come on ladies, can't we all just try to get along and not make this a competition?  And before you criticize a woman's decision to work, realize that this decision may not have been a choice, but the only option to be able to provide for her child.

Getting off my soapbox now.