My family faced an uphill battle getting my son Jimmy help to work on correcting a speech delay and other developmental issues.  There are several resources to look into to get help for your child; no trashing of doctor’s offices necessary.

• Begin with your pediatrician or family doctor. They can help evaluate if there is a problem and refer to necessary resources for assistance.  If your pediatrician or family doctor has brushed you and your concerns off, try another doctor in the practice or find a new doctor through mom referrals and your insurance directory, if you have insurance.
• If your pediatrician is not on the same page as your family, try an Early Intervention program. Early Intervention is available from birth to the day before age 3, usually on a sliding scale for fees based on income.  The program may have other names in different states, but begin under Health and Human Services for your state for contact numbers.  Or your pediatrician/family doctor may be able to give you the local contact number.
• If your child is over three, the jurisdiction falls to the local school district. Contact the department of Special Education for how and when to have your child evaluated.  You can also have your child attend a preschool screening to determine if further evaluation is needed.
• If your child has been given a specific diagnosis, you can contact an organization that is dedicated to the disability. Organizations such as Easter Seals, Autism Speaks or Little Friends can help find all types of resources for a child with a disability.  Google search can help you find specific organizations and locations in your area.
• Finally, a last point.  If  are planning to get help for your child therapy or equipment, make sure you know what insurance will and won’t pay for. As I discovered, since my son’s delay was characterized as developmental, no therapy would be paid for.  My husband’s insurance would not pay for any therapy unless it was needed due to an injury or stroke.  Some insurances are more generous and others are more restrictive, find out your coverages and out of pocket costs before anything is scheduled or ordered so there is no surprise over costs.  If you have an HMO or a restricted PPO, make sure all referrals are obtained before the appointment so there is no disputing of costs or who is to pay.

Do you have any other ideas or suggestions that got your child help? Were you able to find a grant to pay for care that insurance would not cover?

You can read more about Jennifer’s chaotic, daily life at Toast on the Ceiling.

There’s a myth that everyone with Tourette Syndrome walks around blurting out swear words (coprolalia). Movies like Deuce Bigelow have helped perpetrate this myth. In fact, coprolalia is a rare occurrence in those with Tourette Syndrome (TS).

In fact, fewer than 15% of those diagnosed with TS experience coprolalia. Coprolalia is just one of the types of involuntary vocal tics associated with TS.

What are tics?

Tics are involuntary vocalizations or movements.

What exactly is Tourette Syndrome (TS)?

TS is a neurobiological disorder, characterized by tics.

There are two main categories of tics associated with TS:

Motor Tics

• Simple motor tics: fast, darting and meaningless
• Complex motor tics: may be slower or may consist of stereotyped series of movements and may appear purposeful (includes copropraxia and echopraxia)

Vocal Tics

• Simple vocal tics: meaningless sounds and noises
• Complex vocal tics: linguistically meaningful utterances such as words and phrases (including coprolalia, echolalia and palilalia), interruptions in the flow of speech, sudden alterations in pitch or volume.

source: Tourette Syndrome Association

What does all of this mean for my son?

• It means that sometimes my son takes twice as long to cross the street because he has to stop and march three steps before he can continue walking.
• It means that sometimes he blurts out nonsensical phrases OVER and OVER and OVER…even though he doesn’t want to. Even though it’s annoying to everyone around him. Even though it’s annoying TO HIM.
• It means that sometimes his muscles get sore from the repetitive movements, his skin becomes raw from repeated rubbing or biting, and his voice becomes hoarse from the vocalizations.
• It means that at the end of a long day, when he’s fast asleep, sometimes his body is still twitching, despite medication, despite the sound sleep.
• It means that sometimes he gets frustrated with himself, gets irritable, and loses patience with the world and his body.
• It means that sometimes his tics are only a subtle movement or an inaudible gurgle, and he is the only person who knows what his body is involuntarily doing. He is the only person distracted by his tics.

Chores seem to be one hotly debated topic by moms; on the internet, at mom’s group, in magazine articles and real life. Do you expect kids to do chores? Do you pay them for everyday chores or ones above the norm? Is it part of running a household and they MUST pitch IN?

Now, how do you manage all that with a special needs child?

The trick is, you need to look at your child as a whole and determine an answer based on the child.

First, look at your child’s abilities. Can they follow simple directions? Do they need written instructions, picture instructions or verbal prompting to get a task done? What is their age level, physically and mentally? What is the nature of their disability?

For example, a child with moderate to severe Cerebral Palsy should not be expect to vacuum or mop, but can help set a table or help bring items from one parent to another (for example, if mom needed a roll of paper towels in the bathroom).

I also have a friend of mine who was born with mild CP whose parents never expected her to do chores. As an adult, it hasn’t been hard on her to help out with what she can do at her parents‘ house, but I think that’s the exception rather than the norm.

Second, look at what motivates your child. Is it praise, stickers, Hot Wheels, money? What is the best reward for your child? Decide with your other half how and if to reward your child for their chores. This may be necessary at first for some children, but it does not need to be outlandish. A chart with checkboxes or stickers can work very effectively for cause and effect in some children. Others may not respond or care that their sticker chart is blank. You will need to determine the best motivator based on the disability.

Third, decide how your child will be assigned chores. Will it be the same method as other siblings or will they have their own set of chores every week? My son has five chores based on age: Use Potty, Pick up toys, Brush teeth, Get Dressed and Put Shoes Away. He does get asked to do other things on occasion, such as put a dish in the sink. And his chores are reviewed on a regular basis to make sure he is doing age and developmentally appropriate chores..

Finally, decide how the child will be reminded to do their chores. Will they be done one day a week or at the same time every day? Will there be directions where the chore needs to take place, being pictures or written in smaller steps? Will you remind the child the steps as he/she does the chore? Will they receive any rewards after the chore is complete or once a week like other siblings may receive?

Jennifer writes the blog, Toast on the Ceiling, to help her deal with day to day life of a mom with SPD, speech delays, low muscle tone, and other moms who think Jennifer is too hard on her SN kid.

Parenting children is hard enough. Throw in a couple of disabilities, and parenting can become even more stressful.

Most days, I do very well tending to my daughter, Little Miss Throwsafit, and her hypotonia and speech apraxia and all the doctors’ appointments, therapy, treatments, and other activities that come with it. 

Unfortunately, Wednesday wasn’t one of those days. I was frantically tried to get out the door to get my daughter to her speech therapy appointment on time and I failed miserably.

Instead of letting it roll off my back like I normally do, I kind of lost it. I cried the whole way to her therapy appointment, a 40-minute drive. Needless to day, the stress of parenting a special needs child hit me hard.

My reaction was actually quite normal. It’s common for moms of special needs kids, all moms really, to have bad days, so after my episode Wednesday I came up with other outlets for the stress so it didn’t build up and explode all over the place.

1. Go for a walk. My kids love to go for walks, but it seems like I just don’t do it enough, so I’m going to commit to taking walks more often.

2. Visualization. I know this may sound funny, but when stress begins to build up, I can go into the bedroom, lay down, close my eyes and picture myself allowing the stress to disappear.
3. Dance. I should to turn on the radio and dance around the house with great enthusiasm. My kids would love it.
4. Take a power nap. Power naps are some of the best naps to take. There are times when both my daughter and my youngest son are napping at the same time. There’s not reason why I can’t nap, too. My husband is around the house full time 5 days a week. Why don’t I take advantage of that more often?

So how do you relieve stress when you’re heading into overload? Click on over to the Blissfully Domestic Special Needs Kids group to discuss this and other topics.

Kim is a wife to Steve and a Mom to three kids. She writes all about her family and her life Up North at her blog Up North Mommy.

I normally write the tip/hint column at Blissfully Domestic.  This week, I am stepping out of that role to talk about my son and his speech delay. Please feel free to visit my blog, Toast on the Ceiling for more about my son’s challenges and achievements.

My son Jimmy spoke his first word one morning at 8 months old.  He said “hi” at eight months old one morning when I was walking down the stairs getting ready for work.  It made my day and I bragged to all my mommy co-workers and his Grandpa (he works with me).  I was ecstatic and proud mama that day.

And Jimmy didn’t speak another word until he was almost 12 months old.
I asked the doctor at his nine month checkup about this. He wasn’t even using Hi and didn‘t babble. He would cry and smile, but did not try to get attention or show us what he wanted, other than trying to take stuff from his older sister. This was totally opposite of my daughter. The doctor was absolutely unconcerned about that or other issues we saw. I thought, maybe I was being neurotic and left it alone. 

We went along with out daily life.  Jimmy wasn’t vocalizing at all.  He turned one and spoke about two words. No babbling or vocalizing. I asked the doctor again about that and other issues we were seeing.  I was told, “He’s a boy.  He’s slow and that’s how God made him.”  End of discussion and walked out of the exam room.  I was FURIOUS.  I wanted to trash the office.  I went home with Jimmy and cried to my husband.

We went to Disneyland two months later.  He was having asthma attacks the entire time we were there.  He was kind of babbling, something an infant should be doing and not a toddler.  He didn’t point to show us what he wanted. We had to ask and guess what he wanted and needed.  When we got back to Illinois, we took him to the doc and at that point, the doc refused to diagnose him with anything. 

I was even angrier than before after we saw a specialist and she said it was clear he and his older sister had asthma and probably since birth.  I took him to a new pediatrician for the next scheduled check up, something I should have done a lot sooner. 

At 20 months, Jimmy saw our new pediatrician.  She asked me questions about his development.  I went into all of the things I saw in him compared to our older daughter.  She listened to me and took notes.  She was asking more questions that the old pediatrician group had asked in a year.  The new pediatrician believed there was an issue, but wanted to wait until age two for evaluations.  If he hadn’t caught up developmentally at that point, we would take him for an evaluation.

At two, Jimmy spoke about 10-15 words and mostly babbled.  He could sing better than he could talk.  He didn’t point or take us to what he wanted.  He threw numerous temper tantrums during the day.  Some mornings, we had up to ten temper tantrums before 9am.  We were teaching him ASL to try and alleviate the frustrations.  It didn’t work. 

I took him back to the new pediatrician for his checkup.  We went over what had happened and where Jimmy was since the last visit.  She played with him and asked him to do simple things that a normal two year old should do.  She did not like the outcome.  She wrote a referral for Speech, Occupations and Physical therapy evaluations and told us to get him in as soon as possible. 

We took him for his speech evaluation at 25 months.  The evaluation was at a local hospital that actually could get us to perform the evaluation.  Another pediatric therapy center had a six week waiting list just for an evaluation.  These were the only two rehabilitation centers that took our insurance in the area.

The therapist definitely noticed the issues immediately and recommended therapy once a week for him.  I was relieved someone else agreed with me. It had to be pre-approved by insurance before we could schedule it, since it was not linked to an injury.  We submitted all paperwork to insurance and waited a month for a decision.  We thought we would be approved since I had the good insurance in the family.  We were denied because it was developmental in the speech therapist’s opinion. So I was back to square one.  I called the new pediatrician frustrated.  We were losing time getting him help.  She recommended I call Early Intervention.

I called Early Intervention in early March.  I got a call back about a day later from our caseworker.  We had a meeting a week later to complete the paperwork where I begged for someone to finally help us.  I was almost in tears talking about Jimmy.  I was so frustrated and angry at that point.  I show the letters that insurance had denied us.  I just wanted Jimmy to get the help he desperately needed. 

We arranged a team evaluation with the Speech, Occupational, Physical and Developmental therapists on March 25th.  At this point, he spoke about 30-40 words and should have had 200 or more.   He was not making two and three word phrases and he still didn’t point to what he wanted.  My suspicions were confirmed again.  Jimmy had a 9 month speech delay, he was over 50% behind for his age group. I felt relieved, but frustrated.  Why had no one else wanted to do something sooner?  Why had it taken this long for him to get help?

Jimmy is now 3 ½ and attends an Early Childhood program in our district.  Insurance still refuses to pay for any additional speech on the grounds its Developmental in nature. He aged out of Early Intervention the day before his third birthday.  He was able to receive speech and occupational therapy for 9 months at a reduced rate we could afford.  He still is not fully where he should be.  If I put him with one my friend’s typical three year olds, you can see where his speech still needs work.  As of now, the hope is he will be at age level by kindergarten.