Parenting MHMR children/teens?

Question

DH & I may soon be 'houseparents'/caretakers for a 12 y/o MR boy - my search engines arent' working right; does anyone have any information or specific websites they could share with me that might help me in learning what to do/not do or etc? DH works for the company who will be putting this together but i have limited exp. with this and no experience raising boys, let alone almost teen boys. as far as we know his only issue is MR, nothing specific like down's or autism. not looking for any judgements in this just for helpful information, anything you can offer would be great, thanks!

Answer 1

I'm giving you some links to websites I often use to find articles and useful information related to behaviors and other things I encounter with students in my classroom.  I teach high-schoolers with severe/profound mental disabilities (ages 14ish to 22ish) and a lot of the kiddos don't have a particular disease (autism, Down's, etc.) that causes their MR, but for the most part, kiddos functioning at that level all demonstrate very similar tendencies, behaviors, and interests, no matter their "diagnosis."  There are quirks of each specific disease/disability, but no matter the disability or functioning level, they're all just kids.  

Teenagers with mental disabilities are challenging because they may function in the range of an infant to a toddler, but I try very hard to still treat them like teenagers.  I make an effort to not give them baby toys or treat them like babies (toys are fine, especially if they're developmentally appropriate, but there's no reason a teenager should be playing with a Barney (no predjudice against Barney; just making a point) toy or the like when most of those toys can be found in a toy designed similarly and with the same purpose as the baby toy, but without Barney or whoever on it).  Baby Einstein, Fisher Price, and Little Tikes are brands that have some toys that are brightly colored and developmentally appropriate while not screaming out "I'm a baby toy" with baby figures on them.  But, they also have babyish stuff, so you just have to choose wisely (or use Goo Gone to take off babyish stickers from plastic toys).  Melissa and Doug brand is a brand that makes very good developmental toys that I use a lot with my students.  The toys are well-made and last forever, match the same skill levels as many "baby" toys, but have a more grown-up look to them, as they are very plain without cartoony characters.  I find that my students will select these plain toys more often than toys that aren't age-appropriate, if given a choice between the two.  

My students seem to enjoy Legos (if your young man puts things in his mouth, go for the larger size Legos designed for toddlers - Duplo has good ones, but there are several generic legos-type toys that serve the same purpose).  I don't know if you live in the U.S. and have a Big Lots, but I am usually able to find great toys for my teens at Big Lots because they have cheapy toys that are knock-offs of the brand-name baby toys, but lack the babyish characters (you know.. Dora the Explorer, Barney, Big Bird) that all the little kids want.  So, they're perfect for teens with MR - all of the toy greatness with none of the toy babyness!!!!  The toys are also cheap, so you can buy several different kinds while you find things that motivate or excite your young man.  Granted, the toys aren't the highest quality and don't last forever, but they serve their purpose and they look more age-appropriate.  Watch some of the toys with lots of parts, though, if he puts things in his mouth, because the cheapy toys may fall apart easier, leaving small pieces to eat... Big Lots has a great selection of knock-off Legos (especially the larger sizes), blocks, educational games, and plastic trucks and other developmental toys.  I stock my classroom with Big Lots stuff constantly!!  Because I'm a stickler about age-appropriateness, I take Legos and other similar toys out of their packaged boxes or any containers that look childish and put them in brightly colored metal baskets, storage bins, or other things that teens typically use to store their "stuff" in their bedrooms or wherever.  Then, to just pass by the room or wherever, it appears age-appropriate and gives your young man a pride in his belongings.  It's also easier to put things away into large tubs, baskets, etc.. than to put them back into smaller boxes or packages, as many individuals with MR have poor fine and gross motor skills.  I find great storage-type bins and things for teens at Jo-Ann fabrics, especially their back-to-school gear for dorm rooms - they go on sale right after school has gone into session and they have great "teenager" decorating stuff!  Big Lots also has neat storage stuff for teen rooms, fairly cheap and Target and Walmart (and probably other similar stores) have pretty fun stuff, but it's usually pricier than Jo-Ann Fabrics' clearance prices, but at this time a year, everybody has good sales, so have fun finding teen stuff!!!

I've taught middle school boys (ages 11ish to 16ish) with moderate/severe mental disabilities for the past four years and those guys loved all things cars - matchbox cars, Little Tikes cars, Playskool cars and trucks, etc..., but I've found this year that most of my high-school students with severe/profound MR aren't interested in the cars because they don't have the cognitive skills to imagine or understand the concept of pretending they're driving, so you just have to try different things to see what he enjoys.  

His level of functioning will be what makes the difference in how easy it is for you to find what motivates him to do things and what will work as positive reinforcement/rewards.  The higher the functioning level, the easier it is to use rewards.  Lower-functioning kiddos aren't always as aware of things around them and may not be obviously motivated by things we would consider rewards, so it's more of a trial-and-error type of guessing game with the lower-functioning kiddos.  Although not always the best way to get things done, but a no-fail reward nonetheless, food items work as a reinforcer with every single student I've ever worked with.  You obviously can't use it all the time in every setting or you'll have a pretty fat young man on your hands, but it's something I've never seen a student turn down and it works when you are desperate!  I use Cheerios (the new fruit Cheerios are colorful and the kids think they're candy because of the color and fruity flavor, but they like the plain Cheerios, too), Trix, Fruit Loops, anything with bite-size pieces... cereals as my food reinforcers in my classroom and only give 1-2 pieces of cereal at a time.  The kids will work for the food item and it's a healthy, low-fat alternative to candy rewards or other sugary items.  The speech therapist in my classroom uses Smarties and only gives one Smartie at a time for reinforcement.  I have a young man who will do anything for strawberry milk.  He gets one Dixie cup of fat-free strawberry milk at a time for a reward when he does work - by the end of the day, he's usually consumed equivalent to 1/2 a school carton of the milk, but he thinks he's had tons when it's spread out in small portions.  Whatever motivates!!!

All of my students enjoy Play-doh and I have them "help" me make it from scratch, so then it's a cooking activity and it's age-appropriate because they made it and it's not really the play-doh that little kids would play with (because teenagers don't play with baby play-doh!!).  Make a point to compliment your young man when he's dressed appropriately for his age - I hate the sweat pants thing that is so common for teens with disabilities - if he's willing to wear things besides sweats, I recommend dressing him like his peers.  I've found that other kids in the school interact more with my students who are dressed nicely and look "normal" than the kiddos in sweats, even if the ones who are dressed nice have more severe behaviors.  And, even if it's not obvious, he will probably get something from your praise of his outfit and may behave better, plus it's an age-appropriate thing to dress "cool" when you're a teenager and to be complimented on your choice of clothes.  

If he's not toilet-trained yet, I try not to refer to my students' diapers as diapers, but we call them adult protection briefs in my classroom.  And, even if they're going to have their diaper changed, I insist that my assistants ask them if they need to use the restroom, not get a diaper change.  Teenagers don't have "diaper changes" and until those changing tables in public restrooms are large enough for a teenager, I will not relent on my rule about the appropriateness of our speech and terminology in a high school/teenage environment.  We also have to be careful to catch ourselves so we don't tell a student to go to the potty or say we're potty-training, but that we're going to the toilet or restroom and toilet-training.  They're little details, but they are things that demonstrate respect for the individual.  Elderly individuals in nursing homes wear diapers, but no one tells them to go potty or "time for a diaper change," because they are respected as individuals!  (Okay, I'll climb off my soap box now... one of my pet peeves)!

Several of my students live in group homes, so I get them cool bedsheets and things as gifts or rewards and then they can have their room decorated like other teens.  Even if you don't think he's paying attention to the decorations in his bedroom, he probably notices somehow and hanging posters or other things "normal" teens would have in their rooms shows him that you respect him and think of him as a teenage boy, not a child - I find that my students behave more like adults when they're treated like adults and know that someone expects them to be well-behaved.  Obviously, that's not a miracle fix and behavior issues are still extremely common in this population and the behaviors can be severe, but remember that most behaviors occur because of a lack of communication skills and not because they are angry with you or anyone else.  

Teens with MR have had lots of years to develop their behaviors and the behaviors are difficult to change.  Try to keep in mind how frustrated you would be if you were trying to function in the world stuck in a teenager's body with teenage hormones (ugh...remember how awful that was?) with the cognitive skills of an infant or toddler and the communication/verbalization skills of an infant or toddler.  Babies communicate through behavior - they cry and scream and wave their arms and legs when they're unhappy; toddlers throw fits and scream and fling things or throw themselves on the ground when they're telling you they don't like something or want something you haven't given them - teens with MR are functioning at the same level, only the behaviors look a lot worse coming from a teenager.  It's just that the behaviors have always worked - they threw a fit when they were little and an adult figured out what they wanted; it worked, so they've continued to do that and that's been effective communication until they got big and the behaviors weren't so easy to deal with anymore.  Just keep in mind that this teenage boy with MR has had 12 years to develop his behaviors and communication and he learns slowly, so it could take 12 more years for him to learn more appropriate behaviors.  

The most important thing you can do is to accept him for who he is, be patient with the things he does that aren't so great and try to keep in mind why he might be doing those things, and to always remember he's just a 12-year-old boy who needs what every 12-year-old needs: love, love, lots of attention and praise, and more love.

Okay, enough blabbering from me!  Here's the web links I promised:

http://www.iidc.indiana.edu/irca/IRCAart...

http://www.allthedaze.com/sensorymenu.ht... (play-doh recipes)

http://www.do2learn.com/

http://www.angelfire.com/pa5/as/index.ht... (this site is geared toward autism, but has an incredible list of links gearing toward all different areas and a lot of the stuff applies to all areas of special needs)

http://trainland.tripod.com/links.htm

http://letsplay.buffalo.edu/

http://www.ataccess.org/resources/wcp/en...

http://www.palaestra.com/featurestory.ht...

http://www.ncbi.nlm.nih.gov/sites/entrez...

(this site is very researchy, but if you have time to dig through and find stuff you might be able to use, it has some good information - bookmark it for later, when you might have a specific behavior or issue you need info on)

I also recommend visiting the following sites and ordering their catalogs.  They have lots of stuff available, but I find I can come up with fun ideas for items or activities from things I already have or that use cheaper toys/materials just from looking at the catalogs of stuff for individuals with disabilities.  

http://trainland.tripod.com/catalogs.htm (this is a link to a list of catalog links related to children with disabilities - great resource)

http://www.abilitations.com/

http://enablingdevices.com/catalog

http://www.flaghouse.com/Cat_Req.asp

http://www.specialneedstoys.com/usa/cata...

Some other good links:

http://specialneedsparenting.suite101.co...

http://www.familyvillage.wisc.edu/at/ada...

http://www.nichcy.org/pubs/newsdig/nd20t...

http://www.eparent.com/

http://www.nichcy.org/pubs/factshe/fs8tx...

http://www.massgeneral.org/children/adol...

Also, if you're going to be responsible for making educational decisions regarding this young man, you'll soon learn about IEPs and other special education terms.  I highly, highly, highly recommend you purchase the book:

Negotiating the Special Education Maze: A Guide for Parents and Teachers by Winifred Anderson, Stephen Chitwood, and Deidre Hayden; ISBN:0-933149-72-7

No matter what you can find online or from any other references, this book is wonderful and it's good to have something right in front of you to guide you through the process.  I have actually purchased this book as a gift for the guardians of students I've had who were foster children or who were just placed with guardians who have never done the "special ed process" before.  I've also purchased it for other parents who I thought might benefit from the additional info about the process of special education.  

Other good websites with info about the IEP process are:

http://www.ed.gov/parents/needs/speced/i...

http://www.nichcy.org/pubs/parent/pa12tx...

http://www.specialed.us/Parents/plieppro...

http://www.ncld.org/content/view/1026/38... (good list of IEP-related info links at the bottom of the page, as well)

http://www.education-world.com/special_e...

http://www.bellaonline.com/articles/art3... (this is a site that comes at the IEP from a humorous angle - which will be funnier after you've sat through an IEP conference, but it also has some wonderful links at the bottom of the page)

I've given you more information than you probably ever wanted, but I hope some of it can help you.  You are undertaking a huge responsibility and I respect and admire your tenacity and willingness to do so and your eagerness to learn about things you can do for him before you've even met the young man!  You have already started off on the right foot and I'm sure this will be a wonderful experience for you and for this young man who will bring so much joy, wonder, happiness, and excitement (and a bit of other things that aren't always spectacular, too, but those things get so outweighed by the wonderful stuff - trust me!!) into your life.  

Please do not hesitate to email me if I can answer any questions for you or if you just want to bounce ideas off someone who works with teenage boys with MR!  I'm more than happy to share anything I can with you!  Best wishes and happy web-surfing!

Answer 2

Within the boys limitation, you treat him like any other kid. If he messes up he gets reprimanded, if he does something good he gets rewarded. He needs chores, he may need some help, like a star chart, completing the chores though. A kid with MR is like any other kid, just a bit slower. So, a boy who is 10 or 12 may function on a 5 or 7 year old level. It sounds like you will do just fine since you are already thinking ahead and try to get information prior to the boy comming to your house. Relax, one thing they all need is love and attention.

Answer 3

A teen with MR is really just like any other teen.  Mental Retardation is figured on two scales-one is the general intelligence and the other is the level of ability in daily living skills.  Depending on where his strengths are will be your first objective, and then you go from there.  

People who are MR can and do learn and may in fact do very well.  They may just need more time and nurturing and may need to have things explained that seem obvious to others.

Accept him as he is and he should be able to go as far as he can.