ARE YOU BABYING YOUR SPECIAL NEEDS BABY (CHILD)?

BY LISA ACKERMAN
JULY 7TH, 2010

This article was hard for me to write. As I outlined the items below, I found myself guilty of many of the behaviors performed with my own child. But at the same time, writing this article gave me the strength to address more of my child’s needs in a proactive fashion and move him forward, because that is my job as a parent. My goal is that some day, Jeff won’t need me anymore.

First, I need to acknowledge that we all have thoughts and dreams for our children such as “Whose eye color will my baby have?”, “What will his personality be like?”, “What is she going to be when she’s grown up?”, and hundreds of other questions and curiosities. No parent plans on having a special needs child. I have found that once a child is diagnosed with a disability many parents, myself included, resort to “babying” that child out of extreme love, sadness regarding the disability, and continued hope for that child. In addition, many disabilities are so unique and complex that moving a child along developmentally to help them graduate to self-reliance is not always possible. This article is geared toward those families with a child who can developmentally move along and who has no physical or any other limitations from doing so. We, the parents, need to take that first important step, acknowledging that we need to move our child forward in ALL SKILLS, including self-help skills, just as we would for a typical child.

The chronic condition many parents suffer from with a child with high functioning autism, Asperger Syndrome or other learning disabilities is that we seem to fall into routines and ruts, which our child then relies on, and sometimes that can be a part of enabling their disability to persist.

These routines and ruts can include some of the following:
• Nighttime rituals including using a baby bottle well beyond the age of 2.
• Skipping toilet-training for either urination or bowel movements or both beyond the age of 4.
• Allowing children to play with toys or watch movies that many younger children would enjoy when the child’s age is well beyond what is chronologically appropriate.
• Speaking to a special needs child in a baby voice versus a natural voice well beyond the baby years.
• Allowing the special needs child to receive requests with minimal communication efforts (i.e., a child who speaks and is capable of additional speech asking for a cookie with the single word “cookie.” Or a child using PECS – allowing them to communicate without pictures but just with gestures, or the parent guessing the need before oral communication is attempted).
• Pacifiers used beyond the age of 2 or 3.
• Hundreds of toys micro-managed and the loss of one toy results in a major tantrum.
• Excluding food allergy issues – allowing the child to pick and choose baby foods or the same foods without expanding the food repertoire beyond the age of 4.
• “Owning” the television or computer and not developing healthy sharing habits with other family members or close relatives.
• Sleeping with the parents and refusing to sleep in their own bed or room.
• Completely dressing your child when they are 4 or older.
• Catering to the child’s needs by tying their shoes, or getting their snacks and drinks when the child is capable of serving himself.
• Interfering with therapy time (i.e., staying in the room or interrupting professionals).
• Allowing the special needs child to run your family life.
• Have your neurotypical children perform chores but not your child on the spectrum or with a disability
• Letting the diagnosis be the excuse for all bad behaviors.
• Fill in your favorite issue here…

As a parent of an autistic boy, these are all issues I have tackled and continue to keep in check every day. These issues can be complex, exceedingly difficult to manage or change, and often I hear other parents letting me know they “pick their battles wisely.” Besides picking the battles, many parents – of typical or special needs children – are exhausted just keeping their heads above water, day in and day out.

My suggestion to the parents who have children aging chronologically but not developmentally in life skills and stuck in habits or rituals is to break out of that mold and push their child to reach their true capabilities. Ask yourself: “How will I know if this child is not capable if I don’t try?” Know this – you can break the mold and set your child and your family up for success. Here are some suggestions and step-by-step instructions on identifying common behavior-based problems.

STEP ONE
A simple place to start is to keep a daily journal and look for those routines and habits that should be changed. It is important to identify them all accurately and honestly in a list. You can use your friends, therapists and family members to help identify these items based on experiences of typical children.

STEP TWO
The next step would be to review them with your spouse or partner to identify the habits that are the most blatantly “too young” for your child. Then prioritize which ones you would like to see your child eliminate or graduate from the next step. (Yes, this could be the hardest step!)

STEP THREE
Finally, review and set goals with your service providers. Have them work with you on a plan during therapy and the critical at-home-with-parent hours in graduating your child to the next step or eliminating a routine. An important note, I find that many service providers have children with whom they have worked and can offer a variety of strategies. As a parent, it may be extremely annoying to receive advice on childrearing (especially from an expert who does not have a child and does not live with yours), but any advice can help to unlock and solve that issue. Be open to hearing the advice and utilizing suggestions that can help your child graduate. Now that you have your list and are ready to move your child forward, here are some samples for graduating your child to next steps. I provide these as solid examples of changing routines and habits because I have done these with my special needs child.

SOME EXAMPLES

1. MOVING A CHILD FROM A BOTTLE TO A SIPPY CUP, THEN FROM A SIPPY CUP TO A CUP.
Bottle to sippy cup:
• First purchase bottles, sippy cups and regular cups that have a similar color and style.
• Go “cold turkey” and throw out all old bottles and start with the newly purchased items and bottles.
• Once the child is used to the new bottles, change the nipples and make the hole so large the liquid pours out too quickly and makes a mess. (Note: Parents must be willing to make a big mess in this step. Changing the child’s clothes because they frequently get wet is good during this step. It may solve another issue as well!)
• Then move to the sippy cups. Start first by modifying the sippy cup by drilling a hole that is just large enough to fit the straw thru the sippy part of the cup. Gently poke the straw through the cup to be out only 1 millimeter. Reward the child often for drinking out of the cup.
• Move the straw out one millimeter at a time. Over 1-2 weeks, the straw should be completely out.
• Move completely towards a regular straw out of a regular sippy cup. Sippy cup to typical cup:
• Cut the sippy cup straws so it is very difficult in getting the liquid out through the straw.
• Give your child their favorite drinks in the bath tub or out in the back yard naked on a hot day. This way, they won’t be angry about the liquid making them wet. (Often, it is a sensory issue of feeling the liquid on their clothes, or them spilling once which limits their desire to try again.)
• Reward them often for drinking from cups.
• Remove the sippy cup lid and use only a regular straw.
• Remove the sippy cup lid and use no straw.

2. GETTING YOUR ALREADY-SLEEPING-THROUGH-THE-NIGHT CHILD INTO THEIR OWN BED
• First, move the child’s bed into your bedroom immediately next to your bed. Tell yourself this is going to take a month and loss of sleep during that time will occur. Set up their bed to have the same type of pillows, sheets and similar comforter and colors as your bed.
• You sleep in the child’s bed next to them sleeping in your bed for 1-3 nights.
• Move your child into their bed and you sleep with them in their bed for one night.
• The next night, you sleep in your bed and the child sleeps in their bed next to you. Use your hand to reassure the child that you are there.
• After they can sleep in their bed next to your bed for several nights, move their bed 1 foot away from your bed.
• Over a period of 1-2 weeks, move their bed further and further away from your bed down into the hallway and out into their room. Important — if the child awakes at night, reassure them that you are there and love them. It is OKAY for them to sleep on their own. Note: An important element to sleep for your child may be waking at night several times, which can be a medical issue. It is important to remember that if your child sleeps the night with you, it is possible for them to sleep on their own. If your child awakes at night crying or screaming, seek the advice of a good doctor willing to listen and to help solve the problem.

3. GETTING RID OF A NON-AGE-APPROPRIATE TOY OR SERIES OF TOYS.
Does Barney or a similar character live in your house? Is it a beloved toy and is your child over the age of 5? Then, it is time for Barney or that similar character to retire!
• If the child has an inordinate amount of Barney (or other non-age-appropriate) toys and videos, start by removing one toy a week to a box in the garage. (It is important to have this box stored in a place where the child cannot reach it or climb to it, and to not allow them see you put the items in that box. If they see you, it is time for a new hiding place.)
• When the child starts looking for those particular toys, distract them with a new age-appropriate toy (i.e., from Barney to Sponge Bob). Remember–it is important to move up in age–don’t go laterally as in from Barney to Blue’s Clues.
• During week 3, start removing four Barney toys a week. Be sure to introduce new age-appropriate toys as you take the older toys away.
• During week 5, accelerate the loss of toys as fast as possible until you have removed them all.

IMPORTANT NOTES:
1. You must avoid Barney (or other non-age-appropriate designated characters) at all costs during this process from stores to friends’ houses, and with other siblings’ play things!

2. While introducing a new series of toys that move up one, two or more years of age, you must be willing to do the same exit strategy with that series of toys to the next age range of toys. For my son, removing the next group of toys was much simpler and more easily accepted. And finally, the last thing any parent wants is Barney the dinosaur in their 20-year-old’s hands–let alone that dinosaur in their house after the age of 3!!!

4. CHORES: The First Job a Child Ever Has In my childhood, I remember being tasked with chores starting at an early age. My siblings and I have a myriad of requirements in maintaining the home including attending school and completing homework. We were only exempt when sick and besides this excuse there was no excuse acceptable to my parents. With my typical daughter she began chores at age 3 by cleaning up her toys after playing with them or before going to bed. With my son on the spectrum, his chore life did not begin until after 5 years of age after over 2 years of therapy. We were able to teach basic chores including: cleaning up toys, folding clothes, setting the table, emptying the clean silverwear from the dishwasher, taking out small bags of trash and other tasks. With proper motivation I found the only hurtle to getting my son to do his chores was to motivate him with a small reward when done. Now, he completes chores with less proding then his sister. We also participate In beach or park clean up days with no complaints.

SOME THOUGHTS ON REINFORCING NEW BEHAVIORS
I have found that proper reinforcement can tackle almost any issue. This, combined with the strong will of both parents / partners to be successful in this transition process, can be extremely effective and rewarding. Tackling each item methodically, consistently and one at a time can be an easier, less overwhelming way to be successful and is less stressful on everyone. Some reinforcement suggestions include:
• Immediate rewards of a favorite toy, food, TV program, or play activity.
• Be sure to sample various rewards – make sure the rewards are what the child wants and are not “tired” or overused.
• Be sure to reward each phase or step. Your child has to see the “forest through the trees” and know rewards will happen frequently. These frequent rewards will motivate each step and help your child be successful.
• Use motivating friends or relatives AND therapists to help the process by sharing your plans with them and educating them about reinforcing your child the same way you do. Parent to parent, I encourage you to address any self-help or routine issues as early as possible. Please know that it can be done. If you need assistance, a behaviorist or occupational therapist can introduce a skill and help you transition the newly acquired skill at home.

Early on, Jeff’s life skills and play skills only graduated as I pushed him along. What I see today is that now Jeff is noticing his friends and is understanding socially what is acceptable and what is not. With the consistent efforts of our family, Jeff is moving forward independently, developing his own ideas about new likes, dislikes, toys, and habits every day! All the hard work of dealing with the tantrums and breaking out of the mold and old ruts is paying off. More importantly, new ruts are not being established.

RESOURCES AND RELATED ARTICLE:
Getting Picky Kids to Eat!

BOOK SOURCES:
•Toilet Training for Individuals with Autism and Related Disorders, by Maria Wheeler
•A Treasure Chest of Behavioral Strategies for Individuals With Autism, by Beth Fouse, Maria Wheeler
•The Out-Of-Sync Child: Recognizing and Coping With Sensory Integration Dysfunction, by Carol Stock Kranowitz
•The Out-Of-Sync Child Has Fun: Activities for Kids With Sensory Integration Dysfunction, by Carol Stock Kranowitz

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