Can You Please.... READ THE IEP!

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I think I am going to go into the T-shirt business - it’s such a great way to express myself and trust me, I need to express myself. The first one I am going to have made will go something like this: On the back the shirt will say: “I’ve just gotta know…” And on the front will be: “Before you called me… did you read her IEP?”

I think I will wear it every time I have to go to J’s school to go over, for the millionth time, the things they should be following as it’s stated in her IEP.

My baby has already started school and it’s been, um let’s call it challenging. I’ve talked to several parents and I am not the only mom having a bit of trouble.  Let me go down a quick list. The first day of school J didn’t use the bathroom at all. She’s in a new part of the school and wasn’t sure where to find the restroom.  Self-advocating is a skill she needs to work on (it’s in her IEP) and she should be sent to the nurse every 2 hours (that’s in the IEP too) so knowing where the bathrooms are should not have been an issue.

Then I got a call about her pants, in her IEP (see a theme forming here??) she is excused from the typical uniform pants. But they had a problem with the material the pants were made of.  They called her down to the office and scared the daylights out of her. She thought she was in trouble. What can she do about the pants I bought for her?

I had to send my mother to the school to find out about the restroom, meanwhile, I had to visit five or six stores to try and find a material that they liked better.

While my mom was at the school, an interesting thing happened. While the administrator talked with my mother, (who came up there about the bathroom issues) she asked about J’s hair.  When she is stressed or restless, she pulls at her hair so she has been given permission to wear a scarf to school. The administrator asked, and my mother indicated that she’s still tugging at it most days. The woman then asked my mother the question that really irks me… “Is there anything different or going on at home?”

… Are you for real?  Funny you can think to ask about her hair, but for some reason we can’t remember the restroom, self-advocacy assistance, or uniform provisions in the same IEP. And asking me if there is something going on at home?  Read the IEP! She has multiple diagnoses. She can get stressed out if I ask her to brush her teeth! And if we want to talk about stress, calling her down to the office on the first day about her pants didn’t build self-confidence. She was so proud of her outfit. She tried it on the night before and everything. And I might add, the pants were made of the same material she wore all through middle school.

For most of you, school starts this week – a word of advice. Take my experience as a reminder that no matter how long your child has been at a school and no matter how much information is in the IEP, get ready to advocate for your child and remind the school of its obligation. Remember, the IEP isn’t a suggestion; it is the law. You must comply with what is in the document, period.

And for anyone working with ESE students and you want to call home to speak with mom or dad, don’t ask parents if there is something going on at home.  Don’t get me wrong if there is an odd change in behavior I can perhaps understand the question, but really? She’s been pulling out her hair since she was in elementary school, this isn’t new. And… it’s in the IEP! I’ve learned that many don’t read it and they should.

Be sure to have a copy of the IEP handy, and be prepared to refer to it often. Don’t be afraid to repeat yourself, because trust me, you are going to have to.

And if you want a T-shirt, let me know. I’ll share the design when it’s done.

Remember to be Thankful

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I had my entire blog written and ready to post yesterday. This particular entry was just a vent for me, and the trouble I’ve had since my daughter has returned to school. But I will post that later this week. When I woke up yesterday, the story I have linked to below was leading the local news. Five people died in a horrible car crash and a 6-year-old boy is fighting for his life. He doesn’t know his mommy is among the five who were killed.

Three of the crash victims are siblings and their father is a local pastor, Ricardo Welch, at the Prayer Tower Church of God in Christ in St. Petersburg, FL. I know the family and they are very close to relatives of mine in the area. His daughters and a friend were returning from the church’s jurisdictional meeting in the Fort Pierce area. The roads were wet and the truck the little boy’s mother was driving began to hydroplane as she lost control and she hit the car the sisters were driving in. In an instant Pastor Welch lost three of his children, Lamour Welch, 29; India Welch, 24; and Tehira Welch, 18. Their friend, Antwayne Robinson, 25 was also killed. The driver of the pick up, Jennifer Zuniga, 30 was the final fatality. There was no alcohol involved, no texting while driving, it was just a horrible, tragic accident.

I can’t imagine the grief that all of the families are going through. And it will certainly be a test of faith for the Pastor who lost three of his children in seconds.  So I decided that for today it was better for me to be thankful and leave the venting for another day. I am thankful for the troubles I am having with J’s school because it means she is still here with me. Lately she’s been, a bit restless, walking in circles more while she reads and interrupting when I am talking with someone. Sunday afternoon I was at my wits end with it, but today I am thankful she is here to drive me crazy every now and then. My son is still a moody teen (although he is beginning to turn into a human being again), and as much as it irritates me to have to remind him to put his clothes away or work on his virtual class, he is alive, healthy and here for me to love, mold, and care for.

So today I ask that you all take a moment to read the article about these girls and to be thankful for every single moment you have with your children, even when they drive you insane. I am sure that when they got into the car to make their way home, their dad had no idea he would never see them again.

To all of the families involved in this crash and to others dealing with loss today, I pray for you, you are in my thoughts. I know comfort is a long ways off, but know that because of all of you, I am remembering the importance of thankfulness.

http://tinyurl.com/pb9slzy

Time To Figure Out What's Next

As my baby girl gets older, (she just had a birthday July 17) I am beginning to think about my options as she makes her way to 18. If you are the parent of a special needs child who is 13 and up, I encourage you to do begin thinking about it as well. 

There is so much to consider. Do you want to have full responsibility and guardianship over your son or daughter? If you do, it may be harder to accomplish that than you think. In many states you must almost have your child declared incompetent, which for most of us, will be near impossible to do. If you do have complete control, will you be on the hook for anything they may do (liability in a car accident, if they have an argument or altercation with a neighbor, etc). 

In Florida (and some other states) there is something called Guardianship Advocacy. This allows you to assist your child in making decisions after they become an adult and will restrict certain things they would be allowed to do without your consent, but you do not have complete legal control over your child.

Wading through these decisions will take the assistance of a lawyer very well versed in the field. I would also recommend talking with a lawyer regarding social security and disability benefits.  When your child turns 18, the law says he or she is an adult and can make their own decisions – no matter how ill prepared they may be. When my daughter turns 18, she may have the maturity level of 13-year-old. How is she ever going to be able to take care of her own business? Let’s say for example, she gets upset with me on the way to a doctor’s visit and innocently says, “I am upset with mommy and I don’t want her to come in with me.” I won’t be allowed to be a part of her visit or know what changes to meds may have been made. Well, with a child like mine, by the end of the visit, whatever she was upset about is over, but that won’t matter.

Raising a special needs child is a challenge and I have to say that the older she gets, the more complicated it becomes. Taking her into adulthood isn’t going to be easy but hopefully starting early will give me some piece of mind. 

As I start this new journey, I will be sure to keep you posted and share what I’ve learned. In the meantime, if you live in Florida, take a look at this website: http://flcourts18.org/PDF/gurardianship_rev1-07.pdf

It hasn’t been updated since 2007 but it will get you started.

...Cuz We Are All in this Together!

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This  coming weekend I am going to finally put my Twitter account to good use.  If you have read my blog regularly you know that as much as I love to blog, LIFE so gets in my way and I don’t always tweet or post as much as I should.

But this Friday I am attending a weekend conference that I am really excited about.  It’s called the Family Café and I mentioned it last year in my blog, but I didn’t get the chance to attend. If you live in Florida it’s a weekend of workshops, meetings, and information sessions about the various services available to families and persons with disabilities. 

There will be vendors with information on everything from transition services to setting up a trust for a family member with special needs.

The conference is free to all persons with disabilities and even their immediate family. While you do have to pay for your hotel room and food, you can request that your name be included to be randomly selected to have your room paid for by the conference. I applied and guess what, I was selected! So for me, attending is just the cost of gas and food. But even if I did have to pay for my room, it would be well worth it.

I encourage all of you raising children or caring for loved ones with special needs to network as much as possible and attend at least 2-4 major conferences or workshops every year. There are always changes in treatments, medication, services, etc. and the only way to keep up is to network regularly and get to know other families or experts with knowledge of your child’s disability.

Attending a conference in Pinellas County a few years ago is how I found out my daughter qualified for free medical supplies! If I hadn’t attended I never would have known. And during that same conference I met a guardian ad-litem at lunch who was like an angel. She gave me some information that really was a big help to me. She didn’t know me, but asked what brought me to the conference. I told her a little about my little girl and she took it from there! I don’t remember her name but I will forever be grateful to her.

So, I always try to pay it forward.  Since I’ve been blessed to attend the conference for free, I think it’s only fair that I share as much of what I will learn as I can.

Take a look at the link attached. It will take you to the conference agenda and the vendors that are expected to be there. If there is a table you want me to visit to pick up information, send me an email and I will make sure I stop by and pick it up for you. If there is a session you want more information on let me know and if I can, I'll try to stop by to at least pick up handouts.

I will tweet regularly as I learn things that I think might be helpful to some. And when I return I will give a full report and share the information I bring back with me. I know that sometimes raising a child with special needs can leave you feeling helpless. But no matter how out of control it can sometimes make you feel, remember knowledge is power – the more you know, the more you can at least prepare yourself. And while the best plans can sometimes hit a snag, I figure having the information is always half the battle. Besides if you don't come away with anything else after reading this, know that you're not in it alone. I've got your back! Wish me luck and stay tuned for more info!

http://www.familycafe.net/images/stories/pdffiles/FamCafe2015WEB.pdf

Trust Your Gut!

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So I've been working with a mama who adopted a child born addicted to cocaine. He's now in elementary school and beginning to show some effects from his exposure to the drug. While he has been diagnosed with ADHD there is clearly more going on with him. His mother has taken him to a psychologist where she's been told that if she played with him more and spent more time with him it might improve his behavior. This statement was made after they asked him, a seven-year-old mind you, if his mom played with him and he responded, "mommy doesn't like to play."

Mom began to immediately feel guilty and try to explain that it isn't that she doesn't want to play with him but she's a single parent working full time. By the time she picks him up from aftercare and struggles for more than an hour  to help him understand his homework, then take a bath, eat, it's time for him to go to bed.

She says she often leaves his appointments feeling guilty and wondering what she needs to do better. Seriously?! I told her that she had every right to change her child's psychologist and or therapist- that she did have the right to get a second opinion and request additional tests to see what other ways he has been impacted by the drug. It was as if I had just opened up the windows of heaven! She never thought about getting a second opinion. She figured they were the experts and that if this is what they were telling her, it was what she needed to abide by.

Now, my suggestion to her is not to say that you should seek doctors that will automatically tell you what you may want to hear, but, it was to let her know that as a parent she should trust her gut. If this journey has taught me anything it's that mental health can often be very subjective. It isn't like looking at a scan of a clogged artery or reading blood levels that definitely say a person has high cholesterol - that stuff is pretty cut and dry. 

You can see several mental health experts and come away with more than one opinion. But you should almost never leave feeling guilty about making the best choices you can for your child. Do your own research, learn as much as you can about what ever diagnoses, issues, or challenges your child will face. And never let anyone make you feel guilty about seeking a second opinion or about realizing that the advice you are getting doesn't feel right for your child and your situation. The specialists that you see should feel like an ally.  It should feel like a team effort.  If you don't leave the appointment  feeling supported, it may be time to move on.

I'm no expert but I'm thinking that perhaps a better approach would have been for her child's therapist to give her some suggestions on how to make homework time easier or one how to make doing the homework fun so that they are playing and working at the same time. As parents of special needs children  we truly embody the phrase "on the job training." And yes we need the experts who have gone to school to learn about various disorders and diagnoses, but we need them for support not condemnation.

And so I've learned to trust my gut! If I feel I need a second opinion I get it. If I feel I'm not getting the support I need, I find somewhere else to go. It takes a lot of work but at the end of the day I know that it's what's best for me and ultimately for my child. I hope the mom I am working with takes my advice and tries to find another expert to consult with. In some cases seeking a second opinion may let you know that your first expert was right, or it may validate that you needed a different approach all along. I may not be an expert in all disorders but I sure am an expert in my child just as this mother is an expert on her son. Nobody knows your child the way that you do, no matter what anyone says, never doubt that.

Trust me, There is More Going on Than You Think

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So a couple of weeks ago, my husband and kids went to dinner after church. I stayed behind for a women's meeting. I got a text from my hubby saying my baby girl didn't want to cooperate and was refusing to eat. This isn't a new condition, sometimes she is just moody and doesn't want to cooperate, sometimes the medicine means her appetite isn't as strong during the day. I didn't give the text much thought and continued with my meeting.

When they returned from lunch, my son said a woman in the restaurant kept staring during their meal and it really aggravated him. He said they seemed bothered by the fact the Jalyn was simply sitting there and wasn't eating.

You see where this is going. When I asked my husband about it, he said they walked over to him and said: "We were just concerned, your daughter isn't eating." Way to state the obvious. We were just wondering if there was anything we could do to help.

Really? Um, I'm gonna go with no. He said they let it go at that, although they didn't seemed convinced.  And they totally freaked my son out. While he understood why they seemed so interested in what was going on at their table, he didn't like the staring.  He wanted to eat in peace.

While intellectually I understand the human need to interject oneself into a situation like this one,  it is still really aggravating. Do you really think we would bring her out in public and then refuse to feed her while everyone else is eating? Maybe she was just not feeling well, or she just wasn't hungry. And I don't feel I should have to explain it to you, because trust me, there is more going on than you think.

Having a special needs child has taught me not do jump to conclusions when I see certain things. A child yelling out in a movie or restaurant may not be the result of just bad manners. Or when you speak to a child and they refuse to make eye contact, maybe it isn't that they are being rude.

I know that people mean well, but from the perspective of a mom raising a special needs child, I wish people would think about it before diving in... cuz trust me, there is WAY more going on than you think.

Discipline vs. Disability

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So last weekend I had to grapple with discipline versus disability. Without going into a boatload of detail my baby girl got upset over something that seems trivial and as a result threw my iPod across the room, hard, denting my wall. She was going to the movies with my sister and wanted my husband to allow her to hold on to her money, something she has never been able to do. He told her he was going to give the money to my sister and... she lost it. 

I was at work and my husband was going to use the time that she was in the movies to get an oil change. We ended up having to send her to my mother and said that if she was able to calm down she could perhaps be allowed to go to the movie.

I was pretty torn by the decision, on the one hand if we didn't allow her to go to the movie once she settled down it would mean my mother would have to deal with her and her attitude about not being able to go. She'd already dented my wall and I certainly did not want to subject my mom to that. But at the same time we felt that she needed some sort of consequence for her actions, even though in her mind once the incident is over she has trouble understanding why the matter still needs to be discussed. 

But my little girl is almost 14, and as she grows into an adult, society won't care about her disability. If she breaks the law she will have consequences. If you can't hold it together at a job she will be fired. So if society expects that of her, isn't it my responsibility to try and teach her? We decided that she would not be allowed to play with any electronic device for the rest of the weekend. She accepted the punishment but of course that did not stop her from asking to play with my iPad. I tried discussing what happened with her and she immediately began to cry and insisted that she did not throw it very hard and that the dent was already in the wall ... uh-huh.  

I haven't recharged the iPod yet and part of me hopes it doesn't work. I know that sounds extreme but she also has to learn that when she destroys property it means she no longer has it to use and that mommy and daddy are not simply going to replace it. It was an old iPod, one that I allowed her to use because it gave me more control of her what she's doing.

I know that for my daughter things can be tough. She often has outbursts that she can't control and is generally sorry once it's done. But the world doesn't see it that way, and unless I find a way to get that through to her, adult life is really going to be tough. I think it's a bit sad that we allow adults with severe mental illness to make life altering decisions, but we do. And even though at 18 I'll be lucky if my daughter has the maturity level of a 12-year-old, she can decide that if she's angry with mommy I can't accompany her to doctors visits and won't have any control over whether or not she takes her meds. 

Our prison system is full of mentally ill patients who don't need a prison cell but therapy and serious rehabilitation. 

I try to refrain from being dramatic, and I'm certainly not saying that this incident means my daughter may one day end up in jail. But what I am saying is that when the world expects someone with a mental illness to be able to behave rationally and make rational decisions it's well, for lack of a better word, crazy! 

I don't know how much she understands about the punishment we gave her or if it will even stay with her. Her mind still works a lot like a five-year-old and as quickly as they are upset they are calm again and as far as they're concerned all is right with the world. But when she becomes an adult it won't be that simple and I'm hoping that I am still able to navigate her through what could be a difficult adulthood and help her find her way to success.