CFPC Guest Chat Transcript - November 28, 2007

 

Topic:  “Family Survival” 

 

Guest Speaker: Mark Keith, Training Coordinator

Small and Rural Districts Outreach Program

 

 

Hi, I'm Mark Keith, I work in Outreach Services at Florida School for the Deaf and Blind

(FSDB).   I am the Training Coordinator for parents and families.  I do a lot of work with issues related to raising a child with disabilities and I'd be happy to try to answer any questions that anybody may have.  All questions will be submitted to a queue and then will be entered into the chat room one at a time. You can tell if I am typing by the icon next to my name (on the right).  We're running a bit behind today waiting to see if more folks come in.

 

Q:  Mark, I know that you do a lot of work with families, and that one of the things you talk about is the importance of BOTH parents participating in the IEP process.  Do you have a couple of tips that you can share about getting fathers involved?

 

Yes, that is a huge, huge topic right now in parent-related issues.  It's really hard to get dads involved a lot of times.  A lot of it deals with the make up of dads, the way guys are brought up to try to be strong, protective, don't want to show emotions a lot of the time.  Many times a father won't get involved because it creates those types of issues for them.  It's really really important to constantly encourage the dads to come to the meetings.  Don't beat on them!   Don't yell at them or chew them out, but explain to them.  Nicely say, "We need your input.  We need your involvement here."  Tell them that you understand that it's hard for them sometimes but that it's really important and that what they say matters.

 

Simply encourage them.  Over time, it will happen.  Unfortunately, though, it's not something you can rush, it just takes time and encouragement.

 

 

Q:  I've been told the my husband is in denial, well it's been three years, how can I get him to help and get involve more, it is very frustrating...how much longer?

 

Good question!

 

There's no game plan for this, there is no one answer fits all.  Every dad is different, every guy is different.  Dads are really bad with denial, it happens with a lot of us.  It's as much a protection mechanism for Dads as it is not really seeing the issues.  If I just pretend it's not there, the issue will go away. : Encourage Dad to do more with the child, like going to the store, going out for a little bit, taking time to spend with the child, going to the park, whatever the child would like to do.  The more time you can get them to spend time together it should help him to open his eyes.

 

And I know some dads are really uncomfortable with smaller kids, some dads interact better when a child gets older (they don't seem as fragile).   For dads, that honestly can make a difference.

 

Remember, we don't think the same way ladies do.

 

Another thought may be if there's somebody he can talk to that he trusts,

that sees your side of the issue, that can help him over that hump and get him moving.

 

 

Q:  I think it is important for families to have extended support groups. It is exhausting raising children and dealing with all the issues.  I think we, husband and wives, split roles and play tag team when needed.  But, we have to go and find other women to help us through some of this.  It is sometimes more than one or a pair can deal with all the issues and schedules!

 

I agree.  Find as many people who you can do things with, talk to, be involved with.  Parent groups are fantastic, if you can find one.  I say that because much of my work is done in small and rural areas throughout the state where support networks in many cases just do not exist.

 

One thing that my family does (I have a son with a disability) is to set time that each of us can have for themselves whether it's my wife going to exercise or out to dinner with her friends, or me going on Friday afternoons to play basketball with a couple of the guys, or to watch a football game on Sunday if I can, that's time we can have to decompress, to clear our heads, and we also try to build in some time for each other (my wife and I).

 

Comment from chat participant:  You might also try an online-only support group, like our-kids.org

 

 

Q:  What if you do not have supports, like someone to sit with your child?

 

That sometimes does happen yes.  Try to find someone you can trust, even if it's only for a half hour, a friend, a relative, a neighbor, someone from church.  Every situation is different.  I wish I could give you a better answer than that.  Try to take time, though, if nothing else, to sit down and think through what resources may be available where you live, where you can get help.  There may be, in your community, someone who offers respite of some type.

 

Again, unfortunately, in Florida as in many states, their services can be very patchwork for those families that don't have any kind of supports available.

 

 

Q:  Do you have ideas about families dealing with the stress of IEP meetings?  I know that's a pretty general questions, but we are always looking for tips!

 

IEP meetings are an animal unto themselves!  One of the big ways to reduce stress for an IEP meeting is to understand that an IEP meeting is not the whole part of the whole process of an IEP.  The IEP process really starts the minute you walk out of that IEP meeting until you meet again the following year.

 

Do not wait to deal with issues on the IEP until the IEP meeting.  Do it during the year.  Build the relationships with the school, with the teachers, with the staff.  Be involved.  When we have IEP meetings for our son, it's very rare that I walk into an IEP meeting that there's an issue on the table that we haven't already discussed and in many cases already worked through, even before the meeting.

 

The IEP meeting really should be more of a formality for you than a high-stakes decision-making one-time meeting.

 

Remember the IEP process is designed around the concept of parent involvement, parent knowledge of what's happening for their child in the school.

It really encourages good communication between you and the school and to do that it really helps if you have good relations with the folks at the school.  I would much rather informally begin to discuss an issue that comes up six months in advance of an IEP meeting and try and work it through with the teacher and therapists and principal and ESE staff and have it worked through before we get to the IEP meeting, so when we get to the IEP meeting we already have an agreement on how to handle the issue.

 

I don't believe the IEP meeting is really the place for an issue to be discussed for the first time with an expectation of a resolution on the spot.  Please remember that the issues that these kids deal with are not simple ones and solutions for them are often not simple either.

 

 

Q:  We're just starting down this road :).  Our son is only 8 months old.  Any tips from you all who've been there, done that as to help us with issues you think might come up?

 

Take a deep breath and let it out.  Remember always keep in your mind that this is not a sprint, it's a marathon.: You're trying to get your child to adulthood so that he or she will be as productive an adult as possible  You don't have to resolve everything right away, some issues take time.

 

I remember when my son was a baby, wanting all the answers right now.  And we discovered over time that there are some answers that come in their own time.  For instance, we were told that our son would probably never walk, but nobody knew for sure.  He walked for the first time when he was seven, and he now runs on the track team at school.

 

Do not give up hope and always remember to laugh... to find things to laugh about!

 

There is a quote from a song by Jimmy Buffet that says "If we weren't all crazy, we'd all go insane.”  Just keep that in mind.  :) 

 

It's a long road and so just don't get lost in the negative... find the good things.

 

 

Q:  When I hit the brick wall, being very tired, I had to look at all the things I was involved with and let go of as many things as I could - from meetings, to tracking everyone's calendar, to how neat my house was going to be.  I just needed the time to get back on my feet.   I never did pick everything back up.

 

All of us are that way, we can't do everything!  And we really have to set priorities and make decisions about what's really important.  It's a hard thing but you've got to break the clock .and realize that you can't live by time schedules all the time.  It's hard when there are demands all the time from others.  That's why you've got to build in some down time. 

 

I am a horrendous schedule-maker, list-maker.  My wife will look at me, look at my list, and just laugh and shake her head, and then I just pull the pen out and start crossing things off to get down to what's really important.

 

But one thing we always try to leave in is that decompression time.

 

 

Q:  Maybe making lists with dad will help get him involved?

 

It can!  Giving dad a sense of duty, a sense of having responsibility for the family; being in charge of something for the family, it can help!  It depends on the dad.

 

It can give him a sense of purpose and helps express their importance, that the family needs him there.

 

 

Moderator:  It is now 1:55.  We would like to offer Mark the last ten minutes of the chat to share final thoughts with us.  We thank all of you for participating today.  Please remember to fill out the chat evaluation by clicking on the link below this chat window.  :-)

 

I hope that some of these answers have been helpful for you all out there today.  It really is important to take a long look at what you have to do and what you think you have to do, what you need to do, should do, and what you don't need to do, and make choices. 

 

Remember that there are only so many hours in a day, and it will help to have parents on hand who are still relatively sane at the end of the week.  It's a hard thing to do but it's really important to try.

 

Remember to think outside of the box.  You don't have to keep up with the Joneses.  You just have to do what's right for your child and for your family.

It's really important to keep perspective - again, it's very hard to do, and as a dad I understand that fully!   But just try to find good things in life with your family.  They're there.  You're not necessarily going to find the same things that your neighbor will find, but there are things that are good in your life.

 

Just remember, sanity is important.  :)

 

Thank you everyone for your participation, for coming today and I appreciate all the questions.  I often do workshops around the state, so keep an eye out, I'd love to meet you all, please feel free to come and meet me in person.

 

To find that information go to www.fsdb.k12.fl.us/outreach, and then go to the training section.  I try to keep a fairly accurate list of where I'm doing workshops and what the topics are.

 

Thanks again!  Goodbye!

 

 

Thank you so much, Mark!

 

 

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