Tag Archives: support

It’s IEP Time… Put Our Dukes Down?

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It can be hard not to go into an IEP meeting with an attitude of “me vs. them”, ready to defend your child. Especially if you’ve been pelted with behavioral labels, accused of not disciplining enough, or relentlessly badgered about why you are not medicating. And believe me, I’ve been called some really inappropriate names during some IEP meetings by Special Ed district representatives that could have cost them their jobs.

No parent should be a doormat, but I encourage you to try a shift in your attitude before your next meeting. This hasn’t been an easy journey for me, especially during the two-year diagnosis process that seemed to be more about what category my child fell in than what he needed to help him be more successful in the classroom.

However, when I started coming from a place of appreciation, partnership, and resourceful ideas the IEP process really transformed into a positive experience. I’m not saying there aren’t any challenges or issues, or that all the resources I feel should be in place are. There are still budget constraints and understaffed schools; there are still many misunderstandings about what he can help and what he does to try and ease a sensory experience. But we are much closer these days, especially when I come into the process with honesty, willingness, and an open mind.

Appreciation. Instead of balking about what I see wrong straight out of the gate, I always start with comments of celebration and sincere thanks for what the teachers and staff ARE providing.  Remember, their job isn’t easy, either!

Keep moving forward. I like to keep a solution-oriented tone in the meetings, regardless of any disappointments or misunderstandings I may have experienced in prior sessions. By focusing on what I feel NEEDS to happen instead of all the things we tried that didn’t work out so great, it keeps the whole team in a forward momentum. This doesn’t mean I ignore things that went wrong, but fixating on them will not lend anything to the outcome of the meeting. Remember, we are ultimately there to find and ask for tools that will help our children succeed.

Bring some tools of your own. I am always researching scheduling ideas, resources, and routines to help us at home. I like to come into IEP meetings with a list of things that are currently working well for us, adjusting each for the classroom if I can. I also openly talk about some of the challenges I still experience and ask for input. It’s been my experience that these simple actions can be disarming and set the stage for working together.

Keep talking about the goal. Whenever we get hung up on a certain behavior or issue and I feel things may be getting tense or heated, I sometimes break the moment with a statement like, “My goal for him is to teach him to ask for xxxx appropriately, or self-correct if he is able,” or “I’m aiming for a decrease in the need for small-group time this quarter.” Sometimes we just need a small reminder of why we are there.

Aim high. Every so often, the team will suggest a support be put in place before we have experienced it. I have actually asked for the least amount of support at times to see what my son was capable of. By assuming he will have trouble in a certain situation without actually letting him try is setting him up to aim low in the future. Sometimes they really surprise you!

Overall, it is very easy to take things personally and experience frustration in the IEP process. You know your child best. However, I have personally seen the magic that happens when I have shifted the focus to taking the higher road and keeping my side of the street clean. There’s a strange ripple effect in your world when you stop expecting everyone to be against you : )

Parents: Who Supports Us?

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“Nobody told me there’d be days like these

Nobody told me there’d be days like these

Strange days indeed”

John Lennon

So you’re the parent of a child with Autism, Sensory Processing Disorder, Pervasive Developmental Disorder, or learning disability. When was the last time you gave yourself a break? Acknowledged your courage and persistence? Applauded your patience, kindness, and compassion? Admired your own strength?

If you’re anything like me, I can easily gravitate to the space in my head that flits between judgment and criticism for my parenting mistakes and frustration and exhaustion from all the energy and extra steps required to raise a child with special needs. Especially for a single parent with no family nearby! Oh, I also reside in gratitude and wonder with the gift I have been given; the charge of creating a supportive, loving environment that will allow my children to thrive.

It is good to be grateful and to focus on the positive. I do myself a great disservice, though,  if I don’t name and honor the spectrum of feelings surrounding my situation. (spectrum, did you catch that?) :)

To quote an eBook I recently devoured, The Happy Child Guide: “As parents, many of us are faced with conditions of exhaustion, loneliness and stress. We are
usually the first to be blamed for our child’s faults, and seldom acknowledged for the good.”

I replay the many times I’ve disciplined my son when he was only trying to ease sensory issues within his body and I cringe. I think about all the times I lost my patience with his failure to follow directions when he truly didn’t understand what was being asked of him. Or the times I (sometimes still) am simply exhausted from trying to do it all and I yell. I yell.

We are doing the best we can. Parents, it is OK. Don’t put those scenes on repeat playback. Don’t cringe. Forgive yourself and move forward.

What about the guilt? Do you ever grieve? Do you ever wish the road wasn’t this rocky? Do you ever look at children behaving in a restaurant and suddenly find yourself beating down that little green monster, thinking, “why can’t I have that?” What about vacations? Flying? Going to the movies? Festivals? Do you ever feel deprived or robbed of experiences that at the moment seem impossible for your family? How about the frustration of all the IEP meetings and discussions with the schools?

Honor and release ALL your emotions

It’s OK. It doesn’t mean you love your child any less. It doesn’t mean

you are not grateful. It doesn’t mean you are selfish. It doesn’t even mean you wish things were different. We’re human. If we don’t allow these emotions to come to the surface and honor them, we cannot release them. They will fester.

I spend a great deal of time researching and talking about the right kinds of support for our children. Tools, resources, therapies… and I am glad to be able to bring you these things. But I forget perhaps the most important piece of the puzzle. If our bank is empty we having nothing left to give to them. We need support, too.

I would love to hear some of the things you do to honor, celebrate, and support yourself as a parent. And I would personally like to applaud you in your journey. Congratulations. Thank you for being you.

It’s Summer Camp Time Again… HELP!

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I won’t lie, this time of year typically throws me into a panic.  Memories of being burned repeatedly and having my poor son bounced from program to program each summer makes me dread the search for a summer camp solution that is within a single parent’s budget yet offers my child the support he needs.

I always assume that providing all pertinent information, tips, schedule samples, copies of the IEP, challenges, typical behaviors, and dietary restrictions up front will be sufficient and ensure success for all parties involved. Then, usually a week in, I get a call from the director who acts blatantly surprised and shocked that my son is having problems in large, loud groups and is acting out.

My all-time favorite exchange with a camp director was when my child was expelled from the Recreation Center program for the fact that he had to be watched. Devastated, I reminded him that I interviewed with him personally about my son’s situation, filled out all the appropriate support forms, and even provided extra sensory items. “You assured me you were equipped for special needs children.”

“Main stream special needs,” he replied.

“Main stream special needs? What does that mean?” I asked.

“Kids that act like everyone else.”

Ouch. Ignorance at its finest. I didn’t fight him, because I no longer wanted my son there anyway! Trust me, we never let the door hit us on the way out :)

Anyway… I think this list of questions for prospective summer camps for your child with Autism may help. I don’t want anyone to go through what I have these past few years!

Questions for Prospective Summer Camps for My Child

  1. What is the teacher/child ratio?
  2. Does the staff have experience or background in Autism and Sensory Integration issues?
  3. How are disruptive, sensory-seeking behaviors handled?
  4. Is anyone qualified to dispense medications (if applicable)? What is the procedure?
  5. Is there ample staff to watch my child at all times (who may be prone to wandering)?
  6. How many breaks will be provided?
  7. Are there other special needs children enrolled in the program (if it is not a special needs camp)?
  8. Are there alternative plans for field trip days if my child does not go? If he/she does attend and has a meltdown at the venue, how is it handled?
  9. What behaviors are absolutely not tolerated, and what warning system is in place for parents?
  10. How do you communicate best with parents regarding day to day progress?
  11. Can my child bring food from home due to a restrictive diet?
  12. How are behavior issues handled in general? (not sensory related)
  13. Are toys or comfort items from home allowed?

Hopefully this gets you started down the right road in finding a great fit for your child. The answers to these questions should provide a good indicator of the facility’s willingness to put your child’s success before their convenience or fulfillment numbers!

Some good resources to Special Needs camps can be found at Aspires,  My Summer Camps or Your Little Professor.