How ADHD in the Classroom Affects the Child

My friend, Mandie, is a mother to three boys (one of which has ADHD) and she is a teacher at a private Christian school. So not only is she able to see things from a mother’s perspective but she also understands what it means to teach a child with ADHD.

Here are her thoughts:

*This is a generalized statement about education in general, not one specific school. We have had some really great teachers for our kids. I’m commenting on things I have seen in my own life, my children’s lives, and the lives of other students I know personally and professionally. This morning my heart was just weighed down from the week and I had to share my thoughts on students with ADD and ADHD. It’s fitting as this is ADHD Awareness month.*

I just want to say that having ADD or ADHD sucks. And I’m so over people who see it as an excuse, and I’m so over people who count things against you that are part of a medical disability.

Especially students who are trying their very best to keep up with all the papers, assignments, and busy work at a school. These kids are not lazy.

They are not trying to disrupt your class by being impulsive. They aren’t purposefully forgetting things. Their lockers aren’t unorganized because they need to “get it together”. Their brains are broken and they are coping the best they can.

Don’t assume they “need to be on meds” or they aren’t trying. You don’t just get meds and are suddenly fixed. It takes a LONG time to find the right ones and even then THEY STILL HAVE ADHD. They will always have it. It is a medical condition that affects the way their brain develops and processes information.

And guess what? They hear teachers talk to other teachers about them, they see teachers roll their eyes when they are missing another worksheet, and they know they are going to lose more points for skills they struggle with.

They know that the education system is not built for kids like them. That they aren’t “the good kids” because they can’t perform to unrealistic school and teacher standards.

And you know what else? It hurts them.

They cry every dang night about how hard school is, how they got in trouble AGAIN, how they never get whatever reward the “good” kids are getting, and how they lose recess (which by the way negatively impacts their ADHD and classroom behavior so teachers are punishing themselves).

They HATE themselves and ask why God made them this way, and they ask why is it so hard and will it ever get any better. Eventually most of them DO give up and become lazy because when they were trying and struggling IT NEVER MATTERED.

Instead of taking things away and punishing these kids, why aren’t we more supportive?

Why don’t we help them? Not just “show them grace” but look at the root problem and help them?

Not just give them the grade, I’m not saying that. Be honest with grades, but if grades are reflecting an issue, why don’t we find out the reason?

Why don’t we MAKE SURE they get recess no matter what because it helps their brains and bodies? Why is recess only for the kids that have it together?

Why don’t we send home gold stars for the things they get RIGHT?

How ADHD in the Classroom Affects the Parents

You probably think I’m just a mom who wants her kids treated special. Or that I’m overprotective of my snowflakes. Well you are wrong.

I want my kids treated how they should be treated in order to learn to cope with a disability they will have their whole lives. I don’t care if they get A’s or if teachers “like” them.

But I want them to try their best without being punished for things outside of their control. And I want them to view school as a positive opportunity and not another way they have failed.

I’d love it if my kids (and others I know) weren’t depressed and in counseling because they don’t like who they are, they don’t fit in, and they can’t keep up.

And I was that child. I was a girl in the 80’s and 90’s in school with undiagnosed ADD because GIRLS DIDN’T HAVE IT THEN.

ADHD was for boys.

I was very intelligent but I hated school because my teachers labeled me as trouble, annoying, and a “bad kid”. I hated myself because I couldn’t figure out how to be a “good kid”, how to “get it together” or how to shut up.

I never got a “1” on my report card for behavior or citizenship and spent most recesses sitting on the curb for talking in class or missing work.

The worst part is I BELIEVED THESE PEOPLE. It took YEARS of therapy and medication before I was not severely depressed and I still don’t like myself and struggle to accept God loves me.

I’m so tired, but I can not give up on my kids. I will keep pouring into them regardless of what a broken education system says to them; they are not broken individuals.

I will continue to tell them that I don’t care about their grades if I know they are trying. If they quit trying, I will know that and we will talk because lazy isn’t an option.

I will keep saying that ADD and ADHD is NOT an excuse – it just means we have to work harder to do some things and they will have to learn ways to make life work for them and learn coping skills.

What ADHD Kids Need in a Teacher

And I will fight for your kids. The ones that are diagnosed and the ones that aren’t.

As another parent AND as an educator. I will find ways for my students to learn without punishing them for things outside of their control.

I will set them up for success in the real world. And I will celebrate their victories with them. When they struggle I will keep pushing them to work hard, and I will be there when they need someone to just listen.

I’m sorry. This school year has been TOUGH; for me, my kids, my friends’ kids, and students I’ve had in class. My heart is just so heavy and saddened by watching the struggle and seeing kids full of life be so drained.

I just want them to enjoy being kids without carrying the same weight I carried until I was 30 years old. If you made it this far, thanks for letting me rant. I’ll get it together someday – or maybe I won’t.

Share Your Knowledge!

I know there are many other mothers out there who feel the same way as my friend when it comes to the struggles your child has at school. To me this post is a great opportunity to bring awareness of the learning difficulties that all children have in a school setting.

Speaking of awareness, if you are looking for ways to spread awareness this month, this post will give you some ideas on how to celebrate the causes that are near and dear to your heart!

If you know of any simple ways to help ADHD children in the classroom, share them below! Or if you have some encouraging words for the parents of ADHD kiddos, feel free to add those too. Let’s be a blessing to others by leaving little nuggets of wisdom and inspiration. It could be just the thing that a desperate heart-broken momma needs to hear.

Mandie Lincoln is a mom to three rowdy boys. She has been married to her best friend for 15 years. She works full-time with high school students and she is in college full-time to finish her bachelor’s degree in Middle-School Education: Language Arts. In her free time she likes to be outdoors with her family, or reading a good book.

The post ADHD in the Classroom | From a Mother’s Point of View appeared first on Breaking the Confines.

The only thing I received was a small booklet about hydrocephalus. Within its pages was a one page list explaining what symptoms to be aware of for shunt malfunction laid out in a list format. The booklet talked about how sometimes a shunt malfunction can be very sudden and symptoms can occur quickly, sometimes in a matter of hours or days.

The booklet also explained how important it was for early treatment to avoid serious complications. As if I wasn’t worried enough already, reading this really caused me great concern. My thought was everyone who looks after my child needs this information!

So, I searched in the best place for a free printable on signs of shunt failure… Pinterest. And you know what? I did not find one printable! Then I searched Google for a printable. Nothing. I could not believe that no one had created a printable on the signs of shunt malfunction when this was such a serious topic.

That’s why today I have a gift for you! It’s a free printable listing the signs of shunt malfunction in infants, toddlers, and children. There are four pages; one for each appropriate age (infants, toddlers, and children) and one page that combines all of them together.

How Long Does a Shunt Last?

Here are some statistics on shunt malfunction:

• The average lifespan of a shunt for infants is 2 years (okay, that’s a scary thought!)
• The average lifespan of a shunt for children over the age of two is 8-10 years
• The average number of revisions is 1-2 every 10 years
• Up to 4 in 10 shunts malfunction in the first year after surgery (another disturbing fact!)

With those odds it seemed like a good idea to let all caregivers know what signs and symptoms to look for in shunt malfunction. That way I could have peace of mind when I had to leave my son with the grandparents, the babysitter, at daycare, in the church nursery, at preschool, or anywhere else that I was not.

What Complications Come from Having a Shunt?

I have researched that there are five common types of complications that arise from having a shunt.

• Obstruction – This is a partial or complete blockage in the shunt which causes shunt malfunction. The CSF fluid starts backing up in the brain causing signs of hydrocephalus. The blockage could be due to blood cells or bacteria.
• Infection –  Shunt infection is typically right after shunt surgery and is caused by contamination of the shunt. But infection can still be likely to occur even up to six months after the placement of a shunt. Treatment for these types of infections should be done immediately to avoid life-threatening illnesses or brain damage.
• Overdrainage – This occurs when the shunt allows the CSF to drain too quickly from the ventricles in the brain which could cause the ventricles to collapse, broken blood vessels, and hemorrhages. Symptoms of overdrainage are headaches.
• Underdrainage – This happens when the shunt is not draining CSF quickly enough and the fluid begins to build up in the ventricles and the symptoms of hydrocephalus recur.
• Other Complications – Although shunts are very durable, they do tend to break down eventually. Catheters can become calcified or broken off. Components of the shunt can become disengaged or fractured due to the child’s growth or the age of the shunt.

Overdrainage and underdrainage are typically addressed by adjusting the rate of the flow of the shunt valve. If your child has a programmable VP shunt, the neurosurgeon can adjust the pressure setting in his office with a magnetic programmable device.

What are the Signs of Shunt Malfunction?

For infants

The signs of shunt malfunction are:

• Enlargement of the baby’s head
• The soft spot (fontanel) is full and tense when the infant is upright and quiet
• Prominent scalp veins
• Swelling along the shunt tract
• Vomiting
• Irritability
• Sleepiness and/or hard to wake
• Downward deviation of the eyes
• Less interest in feeding
• Fever
• Redness along the shunt tract
• Seizures

For Toddlers

The signs of shunt malfunction are:

• Head enlargement
• Vomiting
• Headache
• Irritability
• Personality change
• Sleepiness and/or hard to wake
• Loss of previous abilities (sensory or motor functions)
• Loss of appetite
• Fever
• Redness or swelling along the shunt tract
• Loss of coordination or balance
• Seizures

For Children

The signs of shunt malfunction are:

• Vision problems
• Vomiting
• Headache
• Irritability and/or tiredness
• Personality change
• Loss of appetite
• Loss of coordination or balance
• Difficulty waking up or staying awake
• Decline in academic performance
• Fever
• Redness or swelling along the shunt tract
• Seizures

How Often Should a Shunt Be Checked?

Since every child’s situation is different, there is no hard and fast rule on this one. My son has a ventriculoperitoneal (VP) shunt. He was seen by his neurosurgeon every six months for the first two years and then moved to once a year after the age of two. He has had no complications with his shunt and no seizures so I assume that could be the reason why they scheduled it like that.

This question is one to discuss with your child’s neurosurgeon since he knows your child’s history.

What Precautions Should My Child Take with a Programmable VP Shunt?

Magnets and EMFs

It is a known fact that magnets can change the pressure valve setting on some VP shunts depending on the type of shunt it is. The effects could either be reversible or irreversible.

One study by NCIB proved that certain smart phones did have an effect on the programmable valves of two types of shunts. The effect was reversible on one type and irreversible on the second type.

It’s important to know the model of the programmable VP shunt your child has, and to read all guidelines before using a product with a magnet.

Here are a few guidelines for shunts:

• Use cell phones on the opposite side of the head from the shunt
• Be wary of your child using audio headsets until you have checked the manufacturer’s guidelines
• Be aware of strong magnets and keep them away from your child, especially in close proximity of the shunt
• Be alert for signs that the programmable valve has changes. Signs to watch for would be the same as those listed above.

MRIs

Each time your child has an MRI, the technician needs to know your child has a programmable shunt. After the MRI your child will need to be seen by the neurosurgeon to have the shunt checked and reprogrammed. This needs to be done within four hours after the MRI.

If there is no one available to reprogram the shunt, do not have the MRI done.

MedicAlert Jewelry

It a good idea for your child to wear a MedicAlert bracelet stating that he has hydrocephalus and the model of his programmable VP shunt.

These bracelets are affordable and a great way to let others know about your child’s condition in the event that you are not there to speak on his behalf.

For more information and to order online, visit MedicAlert’s site here.

Abdominal Surgery

If your child needs abdominal surgery, the surgeon needs to know your child has a VP shunt so that precautions can be taken with the tubing.

Physical Activities

It is not recommended to play in contact sports, martial arts, or ride rollercoasters that accelerate at a rapid pace. All of these activities should be done with extreme caution.

What Concerns Do You Have as a Parent?

Let me know what your concerns are about shunts and shunt malfunctions. And don’t forget to get your free printable so other caregivers know what signs to look for in the event that the shunt starts to malfunction.

Resources

Smartphones and Programmable Shunts

Programmable VP Shunts

Hydrocephalus and Shunts from BMJ Journals

4 in 10 Shunts Malfunction in the First Year

Lifespan for VP Shunt in Infants

VP Shunts

The post Shunt Malfunction – Know the Signs and Symptoms in Children (Free Printable Included!) appeared first on Breaking the Confines.

What is Hydrocephalus in Babies?

Hydrocephalus is the accumulation of too much cerebrospinal fluid (CSF) in the ventricles of the brain. You may have heard the term “water on the brain,” which is the same thing as hydrocephalus.

There are four ventricles in the brain that produce and house cerebrospinal fluid (CSF). When there is a normal flow of CSF, it circulates in the brain and up and down the spine. In some cases the flow is disrupted due to a blockage. The CSF starts to back up in the brain and overflow creating more and more pressure on the brain as the ventricles continue to expand due to the constant rate of CSF production.

If there is too much pressure on the brain from the cerebrospinal fluid, it could damage brain tissue and cause a range of impairments. It can impair brain function, cause vision problems and developmental delays. If left untreated or not treated timely, it could cause severe brain damage or death.

What Are the Symptoms of Hydrocephalus in Babies?

Symptoms vary depending on the person and the age of the person. The following are the signs and symptoms of hydrocephalus in babies:

• For babies whose head has not fused together, yet, their head size will be quite larger than normal.
• The soft spot (fontanel) will be tense and bulging when sitting in an upright position
• Developmental delays
• A downward deviation of the eyes (also called sunsetting eyes)
• Vomiting
• Sleepiness
• Irritability
• Poor appetite
• Seizures

What is the Main Cause of Hydrocephalus in Babies?

Hydrocephalus in babies is often present even before the baby is born. This is called congenital hydrocephalus. The cause could be a variety of factors such as:

• A genetic defect
• Spina Bifida
• Aqueductal stenosis
• Arachnoid cysts
• An infection in the mother during pregnancy
• Dandy-Walker syndrome
• Chiari malformation
• Complications from premature birth

How is Hydrocephalus in Babies Diagnosed?

Congenital hydrocephalus is often diagnosed before the baby is born through routine ultrasounds. If it is not diagnosed during pregnancy, the most common way it is diagnosed is by measuring the size of the baby’s head. Abnormal enlargement of the head is an indicator that warrants further testing.

When I had my ultrasound at 20 weeks to confirm my son had Spina Bifida, they also diagnosed him with hydrocephalus. They were able to diagnose this by measuring the size of the ventricles in his brain.

As a side note, another indicator that he had Spina Bifida was the shape of his precious baby head. A lemon shaped head is a sign of Spina Bifida although it’s not exclusive to it.

Can Hydrocephalus Go Away?

Hydrocephalus is not curable but it is manageable with timely treatment. Since it is a chronic condition, it is essential to continually follow-up with your child’s neurosurgeon and neurologist. The neurosurgeon will want to have periodic MRI’s to make sure the hydrocephalus is being controlled. The neurologist will make sure your child is meeting his developmental milestones and monitor the signs and symptoms caused by hydrocephalus such as vision problems, possible seizure activity and developmental delays.

How is Hydrocephalus Treated?

The most common treatment for hydrocephalus is the placement of a shunt which acts as a drainage system for the cerebrospinal fluid. A long, flexible tubing is placed in one of the ventricles of the brain. A one-way valve attached to the tubing regulates the pressure of the CSF flow. The valve keeps it flowing in the right direction and at an acceptable rate. Sometimes the rate of the flow will need to be adjusted which can only be done by the neurosurgeon. The long, flexible tubing runs down the neck and into either the belly or a chamber of the heart. The CSF is then absorbed into the bloodstream.

Another way to treat hydrocephalus is by having a surgery called endoscopic third ventriculostomy (ETV). This is where the neurosurgeon uses an instrument called an endoscope to poke a hole in the bottom of the third ventricle in the brain. The purpose of the hole is to allow CSF to flow through the spaces of the brain where it was once blocked. This procedure is usually a recommended alternative to shunting if the neurosurgeon thinks your child is a candidate.

To find out more about ETV, click here to download Hydrocephalus Association’s fact sheet on ETV.

Neither of these treatments will cure hydrocephalus. It is important to follow up regularly with your child’s neurosurgeon for periodic evaluations to make sure the shunt or ETV is working properly.

It is also important to be aware of complications of an ETV and shunt failure, and to see your child’s doctor right away if these symptoms do appear.

What Other Treatments Are Offered?

As mentioned earlier, it is common for there to be physical and mental delays caused by the pressure of CSF on the brain. The kinds of therapies involved include:

• Early intervention services – Please take advantage of this parents! Find out who your local intervention program is through and contact them as soon as possible. The hospital where your baby is born will be able to help you find out this information. In the state I live in, the program provided is funded by the Department of Elementary and Secondary Education. They provide services to families who have children with disabilities and developmental delays. The age range is from birth up to three years. Because of this program, my son has received all the therapies he has needed to reach his milestones.
• Physical therapy – These therapists work with the gross motor functioning such as rolling over, sitting without support, crawling, walking, strength building, balance and coordination, and flexibility exercises.
• Occupational therapy – These therapists aid the physical therapist in crawling and walking but they also help with fine motor skills, sensory issues, hand-eye coordination, social skills, and various other life skills.
• Speech/language therapy – These therapists not only help with speech and language disorders but they also help with feeding disorders. Problems with this could be with chewing the food properly, swallowing, gagging, and sensory issues with foods.

At some point your child should be referred for a vision exam to rule out any vision problems due to the pressure of the CSF behind the eyes. It is not always an issue with children who have hydrocephalus, but it is common. If the child’s vision is normal, then your child will not need to be seen regularly by an ophthalmologist.

Can Babies with Hydrocephalus Lead Normal Lives?

Although hydrocephalus can cause mental and physical developmental problems/delays, most children will lead normal lives with some limitations. Most babies with hydrocephalus will have normal intelligence.

Just as it is with all children, babies with hydrocephalus will develop at their own pace. They may be slower in reaching certain developmental milestones. But that’s okay! As long as they are receiving adequate therapy and the love and support from their parents, they will surely surpass your expectations.

What Can Parents Do to Help?

To make sure your child lives a successful life with hydrocephalus, here is a brief summary of what you can do as a parent to help your child:

• Take your child to all scheduled doctor visits.
• Make sure your child is receiving the recommended therapy to reach critical milestones:
  • Early intervention services
  • Physical therapy
  • Occupational therapy
  • Speech/language therapy
• Be aware of the signs and symptoms of shunt failure.
• Educate anyone who will be responsible for the care of your child to recognize the signs of shunt failure.
• Don’t be afraid to call your child’s doctor if you have concerns about your child’s behavior or symptoms. If for some reason you are unable to reach the doctor, seek medical care immediately.

Learn as much as you can about the signs and symptoms of shunt failure and educate those who will be taking care of your child. To help with that, I have included a FREE printable that lists the signs of shunt failure for infants, toddlers, and children. You can hand these out to anyone that will be watching your child. I recommend putting these up everywhere your child will be when not in your care; places like Grandma and Grandpa’s house, the church nursery, on your fridge for the babysitter, childcare center, pre-school. You get the picture. Everyone needs to be aware at all times. These symptoms should not be considered typical in a child with a shunt and medical attention should be sought immediately.

Share With Me!

What other questions do you have about hydrocephalus? Comment below or send me a personal message. I’d love to hear from you!

References

National Institute of Neurological Disorders and Stroke – Hydrocephalus Fact Sheet

KidsHealth – Hydrocephalus

The post Hydrocephalus in Babies – Your Most Common Questions Answered appeared first on Breaking the Confines.

Along with that is a constant need for a little extra help in the money department. Actually, a lot of help!  And at some point most parents start looking for outside assistance.

You may have heard something about filing for SSI disability for your child. But what does that even mean?

Looking for answers from the government isn’t always the easiest or the fastest. And who has time to talk with an attorney?  

Let’s take a look at your options as a parent with a disabled child. Hopefully, with your new knowledge you can make an informed decision about whether you should start the process of getting your child on SSI disability. 

What’s the difference between Social Security Disability and SSI Disability?

You may not even realize that there are two programs for disability within Social Security. Social Security disability (SSDI) is the program that you pay into when you work. I’m sure you’ve noticed the Social Security tax deduction from your paycheck. It is the same program that your retirement benefit comes from. It is also the same program that pays survivor benefits after you pass away. 

To be eligible for Social Security disability, you have to have worked and paid into the program. Each year Congress sets the money amount required that you have to earn in order to receive “credit.” Once you have earned the required credit for the quarter, then you are considered insured for that time period. 

So, obviously, a child cannot qualify for Social Security disability since they cannot work. And despite what you may have heard, a child under the age of 18 cannot receive disability benefits from a parent’s record. 

If the parent is receiving benefits under their own record such as retirement or disability, and they have a minor child, then that child could receive what is called auxiliary benefits. This means the child would be receiving a benefit because they are a minor child of the parent, not because they are disabled.  

So, how does a minor child receive disability benefits? Supplemental Security Income (also known as SSI) is a needs-based program for disabled minor children, the blind, those age 65 and older, and for disabled adults who have not worked and earned enough credits to qualify for Social Security disability. 

SSI is not based on work credits. SSI is based on your monthly income and monthly resources. Most of the time a child will have neither income or resources. Some children do receive state assistance or child support which is counted as income for the child. A resource for a child would be a bank account (such as a savings account), or trust accounts.

SSI also looks at the parents’ income and resources when a minor child is applying for benefits. The parents’ income and resources have to be below a certain limit for the minor child to potential qualify for SSI.

What Are the SSI Eligibility Requirements for a Child?

First, your child has to meet the non-medical requirements. This means not exceeding the income and resource limits for the child and the parents. 

Note: The parents’ income and resources are counted if they are living with the child. If there is only one parent in the household, then only that parent’s income and resources would apply. A step-parent’s income and resources are counted if they are living with the child.

Resource Limits

The resource limit for a child is $2000. The resource limit for the parents is $3000. 

This means that if the child has a savings account with more than $2000, the child would not qualify for SSI until the bank account fell below the limit. 

Also, the total amount of the parents’ resources must be below $3000. This includes things like bank accounts, the value of all automobiles (one vehicle is excluded from the limit), property owned but not residing on, life insurance, and other items that could be converted to cash. 

Income Limits

As stated before, income for a child could be things like child support, state government assistance, and any other monies received on a monthly basis.

Income for parents include wages, self employment, money from Social Security benefits, unemployment, workers compensation, and money from friends or relatives. 

The income limits are a little more complicated than the resource limits. Just know that most income whether it’s earned or unearned, will be used in determining eligibility.

Medical Data

Once the non-medical factors have been met, a medical determination can then be made. 

After it is determined that your family is below the income and resource limits, then a Social Security representative will collect all the medical information about your child. They will want to know what the condition is, which doctors and hospitals your child has been to, daily limitations, and other organizations that have seen your child for their condition. 

Once the information is collected and you have authorized the release of the medical records, that information is sent to the State Disability Determinations office. Once your case is there, they will collect the medical information and make a decision on whether your child meets the criteria outlined under the disability rules and regulations set forth under the Social Security laws. 

Do I Need An Attorney to File for SSI Disability?

The short answer is no. When you first file for SSI disability for your child, you will receive an initial determination. Having an attorney does not speed up the initial decision process. In fact, it could actually slow the process down. But it is your right to be represented each step of the way. If having an attorney on your case makes you feel more confident with the process, then go for it. 

In my personal opinion though, having worked in this field for almost 13 years, it’s a waste of your time and money to have an attorney at the initial level. Only you know how to answer the questions about your child’s disability. Only you know what your income and resources are. It is best that you be the one to give that information to the Social Security representative so they have the right information the first time.

I’ve seen so many errors and omissions come through on an application because the attorney did not know the answer. I’ve also encountered numerous times where the attorney had the client talk to the representative to give them the needed information. At that point, you are paying the attorney while you do all the work. 

Again, this is just my opinion, looking at it from the inside of a Social Security office.

If the initial decision made by Disability Determinations is a denial, the next step would be to file an appeal. At that point it may be in your best interest to have an attorney on your case. 

What is Included in SSI Benefits?

SSI is a monthly benefit paid on behalf of the child to the person who has physical custody. That person, who is normally a parent, is called a representative payee. They are responsible for using the money for the child’s needs. They are also responsible for reporting any changes in resources or income that could affect the amount of SSI or eligibility.

The monthly benefit amount is set by Congress every year. For the year 2019, the full monthly benefit amount is $771. This amount could be reduced based on your living arrangements and household income. 

What About Medical Insurance?

Normally, a child that is eligible for SSI will also be eligible for Medicaid from their State. 

Even if the child does not qualify for SSI, the child could still be eligible for Medicaid since Medicaid is a State program and each State has their own rules. 

To find out more information about Medicaid contact your State Medicaid office.

Note: A minor disabled child will not be eligible for Medicare, which is a federal government program. 

Okay, My Child was Approved for SSI Disability, Now What?

Reporting Responsibilities

Once your child starts receiving monthly payments, it’s important to let your local Social Security office know if there are any changes in the family’s living arrangements, income or resources. 

Also, if you or your spouse are working, you will need to report that income on a monthly basis. 

My recommendation is that you have proof of when you report any changes to the Social Security office. Proof could be a copy of a dated letter that you mailed. Be sure to write down each time you visit the office with changes and what changes you reported on that date. 

You can also report your changes by phone, but it’s a good idea to make a note of the dates you called and what you reported on that date. 

Having good records of when you reported any changes will keep you from being liable for any overpayment as long as you reported the changes in a timely manner. 

Periodic Reviews

Social Security is required to do periodic updates of your living arrangements, income and resources. Make sure you follow-up with them in a timely manner to answer their questions. By not doing so, your child’s benefits could be suspended until you give them the information they need.

They also do medical reviews of your child. It is hard to say how often medical reviews will be done. It depends on the severity of your child’s condition as to when the review will take place. 

Before your child turns age 18, a medical review will need to be done. This review is to determine if the child meets the requirements for being disabled under the adult criteria.

At that point a Social Security representative will also determine if your child will still need a representative payee since your child will legally be an adult at 18. The representative will likely need to speak with your child in person to make that determination. 

At age 18, SSI considers your child an adult so the information about living arrangements, income and resources will change. SSI will no longer consider the parents’ income and resources. The program will only consider the income and resources of your child and their living arrangements. Living arrangements just means where your child resides, with whom, and who pays for your child’s food and shelter costs. 

Note: There is another program for children age 18 and older. This program is called Childhood Disability Benefits (CDB). There are a lot of factors to consider in determining the eligibility of these benefits but it may be another option to keep in mind. This is a benefit available to a child of a person that is receiving retirement or disability benefits, and the child is determined to be disabled under the adult criteria before the age of 22. If the parent is deceased, the child could still be potentially eligible.

In Conclusion

I can’t think of anything worse as a time suck than filling out paperwork. And when it involves the government, reading and understanding their forms can make your head spin. I hope this has cleared up the confusion around Social Security disability, SSI, and what SSI is all about. 

If you think you are ready to start the task of filing for SSI disability, you can go here to start the process. 

There is not a SSI application online that you can fill out for a disabled minor child. You will need to call the Social Security Administration to make an appointment. The application process can be done by phone or in person but you first have to make an appointment. 

You can complete the Child Disability Report form online which will help speed up the interview process. Again the link for that is found here.

To get even more detailed information about the SSI program, please refer to this publication. 

What are your thoughts/feelings about filing for SSI? Are you intimidated by the process? What other information do you feel you need in order to make the decision on whether to file for SSI or not? I would love to hear from you!

The post SSI Disability – Is There SSI for Children? appeared first on Breaking the Confines.

It’s the perfect way to say goodbye to summer and hello to my old friend, fall, whom I haven’t seen in a while. It’s like slipping on my favorite pair of slippers, warming myself with some hot apple cider and sitting down with a life long friend to reminisce and laugh about the good and sometimes the not so good times that we affectionately call this wonderful life. That’s how fall feels to me.

Which is why I think it’s the perfect time to remind ourselves and others the wonders of Spina Bifida. Before we head into the month of thanksgiving, October is a great month to celebrate our differences and bring awareness to the uniqueness in all of us. Not only is October Spina Bifida Awareness Month, but it’s also Down Syndrome Awareness Month and Disability Awareness Month.

So what are some ways that you can bring awareness to your community about Spina Bifida and cultivate a community of acceptance for those living with Spina Bifida?

Here are 10 ways to promote awareness in your community. Hopefully, this will spur some ideas of your own. Be sure to share them with us at the end of this post!

1. Share Facebook Memes from Spina Bifida Association

So, this is the easiest (and personally my favorite) way to promote Spina Bifida awareness. Share Facebook memes from the Spina Bifida Association’s page. Or maybe you follow another Spina Bifida group that you could share their memes on your own Facebook page. It’s a great way to reach a large number of people to share interesting facts about Spina Bifida. You could also make your own memes to show how Spina Bifida has affected your child.

2. Coordinate a School (or Workplace) Spina Bifida Awareness Day

Talk with your child’s school about having a special day to promote Spina Bifida. Have a pajama day, or wear two different types of shoes, or everyone wears teal or yellow. Spina Bifida’s ribbon color is yellow so you could also give out yellow ribbons for your child’s class. See if your child could talk to his or her class on that day to explain what Spina Bifida means and how it affects them. If your Spina Bifida child is too young for school, maybe big brother or sister would be excited to have a show and tell day. They could even read a book to the class to explain what Spina Bifida is.

3. Walk-N-Roll for Spina Bifida

Participate in a Walk-N-Roll in your area.This is Spina Bifida Associations biggest fundraiser for community programs and national research, education and support.* If you don’t have one nearby, you can create your own! You can register for My Walk-N-Roll for Spina Bifida and learn more about creating a special day in your community. Invite friends, family, and neighbors to join your team and have a fun time supporting a great cause.

4. Set Up a Display at Your Local Library

This doesn’t have to be anything fancy. It could be a printout of a picture of your child with some interesting facts about Spina Bifida and fun facts about your child’s likes and favorite things to do. This is a great way of making it personable and more interesting to others when learning about a condition they know nothing about.

5. Join Team Spina Bifida

If your passion is running, cycling, competing in marathons or other athletic events, consider joining Team Spina Bifida to raise awareness and funds for Spina Bifida. You can choose your own event and the minimum amount of money you want to fundraise. In return, they will provide you a Team Spina Bifida shirt and some other cool goodies to make your event a success.

6. Share Your Story!

Don’t forget the best way of promoting Spina Bifida awareness is by sharing YOUR story. Share on your choice of social media platform. You can also email Spina Bifida Association at communications@sbaa.org and you may find your story on their website or social platform.

7. Coordinate a Spina Bifida Awareness Fundraising Event

Have a bake sale or a lemonade stand. This would be a great opportunity to team up with another family who wants to promote the disability their family is experiencing as well. You could set up a booth outside of your favorite store to sell some baked goods and promote that all proceeds are going to your local Spina Bifida chapter. Make sure to include a small handout or card explaining what Spina Bifida is. Or if you want to start out small, start one in your own neighborhood! It would be a great way to meet your neighbors while enjoying the cooler temps!

8. Team Up with a Group that is Advocating Disability Awareness Month

In our little town, this time each year an insurance agent and his team puts on a Disability Awareness Day by providing a meal, a small pumpkin patch, pumpkin painting, and games. It’s open to everyone and it’s been growing the past three years. Find someone in your area that you could team up with and promote Spina Bifida Awareness Month.

9. Donate Books to Your Hospital for NICU or PICU Kiddos

Check with your local bookstore to see if they would be interested in donating some books to the sick children in your local hospital or the hospital where your child is treated for Spina Bifida. If you’re having a hard time finding a place that will donate books, you could donate a book or two to your child’s doctor’s office or dentist office. Make some sticker labels to stick to the inside and say something like “Spina Bifida Awareness Month is October. Spread kindness everywhere!” If you’re looking for a book to share, this one would be a good one.

10. Spread Kindness and Your Message

Pay for the meal behind you in the drive-through and leave a card about October being Spina Bifida Awareness Month. Who says you have to wait until Christmas to spread kindness to others? Leave a gift card (or some chocolate!) for the postman in your mailbox with a card about Spina Bifida Awareness Month. Give something small to your child’s bus driver like a bottle of water, a pack of gum, or even a hand drawn picture from your child. Tell them thank you for their service and mention that you are celebrating Spina Bifida Awareness Month.

What’s Next?

Hopefully, you have been inspired to take action to bring about Spina Bifida awareness even if it’s in a small way. This is a great month to celebrate our differences and by sharing may we all realize being unique is what makes life exciting and beautiful. Because how boring it would be if we were all the same?!

Don’t forget to share your ideas of promoting Spina Bifida Awareness Month. I’d love to hear them!

If you would like to leave a personal message, contact me and let’s chat!

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*Spina Bifida Association’s webpage

The post 10 Ways to Prepare for Spina Bifida Awareness Month appeared first on Breaking the Confines.

The option to have prenatal surgery is between 19 and 26 weeks gestation. You and your baby have to meet certain conditions and testing has to be done to make sure that both of you are the right fit for this kind of surgery. 

The Benefits of Prenatal Surgery

Let me share with you the information that we received about the fetal surgery. Once it was confirmed our baby did have spina bifida, we had two very L-O-N-G and intense days at the hospital meeting various doctors, nurses, and social workers. 

The first day was a series of tests. They did a fetal MRI, fetal echocardiogram, and an ultrasound. The MRI and ultrasound were to confirm the baby did have spina bifida and to determine where along the spine they thought the defect (or opening) was located. They predicted his defect was from L1 to S1, which is the lower part of the spine affecting his legs and feet movement, and bladder and bowels. The fetal echocardiogram was to make sure his heart was healthy enough to withstand surgery and did not have any defects. 

The second day we meet with various doctors and were given the pros and cons of the surgery. We were told it appeared the baby and I were good candidates for the surgery. If we wanted to proceed, an amniocentesis would need to be done. I believe that was to rule out any chromosomal defects.

According to the MOMS (Management of Myelomeningocele Study) Trial, this prenatal surgery would improve his chances of not having to need a shunt, “corrects” the hindbrain herniation (also known as Chiari II Malformation), and increases his chance of walking without crutches or other equipment at 30 months.* 

Doctors think that once the prenatal repair is done and the leakage of the cerebrospinal fluid (CSF) is stopped, it causes the brain to shift upwards to the correct position in the skull. This allows the CSF to flow freely and prevents the need for a shunt. The surgery also protects the spine and exposed nerves from any further damage while in the womb, giving him a better chance at walking. 

Postnatal surgery on the other hand does not correct the Chiari malformation which means there is a higher chance of needing a shunt. Also, any damage to the nerves while in the womb is permanent.

These were the possible benefits of having the surgery as long as the baby was able to stay in the womb long enough to mature to full term or make it to around 32 weeks.  According to the doctors, if the baby was born before 32 weeks, it did not give the surgery enough time to help the brain to rise back into the skull to improve the flow of CSF.

The Downside to Prenatal Surgery

There are several pretty heavy risks involved that you have to consider. 

First, the mother has to stay in the hospital for about five days after the surgery. Then she has to stay close to the hospital for about two weeks and have someone with her 24 hours a day. If she has no complications after three weeks, then she is able to return home until it is time to deliver. The delivery would have to be by cesarean birth as would any future deliveries due to the scar caused by the surgery on the uterus. 

In our situation, we lived an hour and a half away from the hospital with no family close by the hospital that could be there for me while I recovered from surgery. My husband still had to work so he couldn’t stay with me. 

Other factors we had to consider is that I did not have enough leave to do the surgery and have maternity leave. We also had a five year old that still needed her mommy and daddy to be present in her life. 

Another downside to the prenatal surgery is the possibility of an early delivery which would mean an even longer hospital stay which could be weeks or months depending on what complications the baby was having. Whereas, if the surgery was done postnatal, the baby would typically be in the hospital for two weeks to give the back time to heal while the baby was on his belly the whole time. 

One of the factors doctors consider when determining if the baby is a good fit for this surgery is the size of the ventricles in the brain. If the ventricles are already of a certain size, then that is an indicator that the baby will for sure need a shunt at birth. 

The ventricles in our son’s brain were already of significant size so there was already a big possibility that this surgery would not prevent a shunt. 

The most alarming consequence of the prenatal surgery was the possibility of an early delivery. We were told that the uterus is very tricky and a lot of times the water ends up breaking very easily causing a very early delivery. We were warned that if he was born before 30 weeks it was a lot higher of a chance that he might not survive. 

Ultimately, we were not willing to chance his life just so that he “might” not have to have a shunt. We decided we would rather have our son with his handicaps than to risk his life. 

I knew my body and my mother’s intuition was telling me my body could not take this type of surgery. My firstborn had to be delivered early and was a NICU baby. The year before this pregnancy we suffered a miscarriage. It seemed very risky to go into this type of surgery. 

This decision was one of the scariest and toughest decisions my husband and I have ever had to make. It felt as though we were determining not only the fate of our child’s future but his unborn life as well. We were not willing to take the chance that he might not survive because of this surgery so we prepared ourselves that he would have the surgery soon after he was born. 

The Final Decision for Prenatal Surgery is in Your Hands

Please don’t feel persuaded into thinking that prenatal surgery is the better option because it is not. There is a lot of pressure in making this kind of decision but just know that whichever way you decide, your decision is the right decision for you and your family. No one can tell you which way is the best nor should they try to tell you which is the better option. You are not limiting your child should you choose to not have the surgery. 

No one could have predicted my son’s outcome. Even though we were presented with this opportunity, we quickly were at peace with our decision. Four months later our son was born by a scheduled c-section at 38 weeks. He was born at one hospital and the transport team from the children’s hospital was there waiting to take him where he would have the surgery to repair his back. 

We were initially told the surgery would be done within 24 hours of birth, but this kid came out of the womb with skin covering his lesion. He was our miracle baby! So, instead of surgery, they decided to monitor his back for any signs of CSF leakage. Nine days later we were headed home! 

He did eventually have his back surgery but the doctors wanted to wait until he was a little older and stronger. They repaired his back at seven months old, six days before Christmas. And we were home before Christmas!   

He did have to have a shunt at almost five months old, but he has made leaps and bounds developmentally in all areas since then. He does wear orthotic braces for his feet and ankles, and he’s so close to walking on his own without any assistive devices.

So just remember that even the doctors don’t have it all figured out. Trust your instincts, Momma. God gave them to you for good reason! 

What are your thoughts about the prenatal surgery? Were you told anything different from what we experienced? Leave a comment below and let me know!

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*The MOMS trial is reported in the New England Journal of Medicine, March 17, 2011. The article is “A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele.” 

The post Why We Chose Not to Have Prenatal Surgery (And How It Turned Out) appeared first on Breaking the Confines.

But how do you prepare yourself for having a spina bifida child? What “things” are necessary to do beforehand? Do you start prepping your house for wheelchairs and medical equipment? Actually, I wouldn’t go that far. The best thing you can do is mentally prepare yourself for an unknown future. And learn as much as you can about spina bifida and the conditions caused by spina bifida.

That may not be the answer you were looking for, but if you can prepare your mind, you will be able to better handle what will happen next.  It’s good to know what conditions are commonly associated with spina bifida which vary in severity with each child. Your child may or may not struggle with all of these conditions but it’s best to be cognizant of the possibilities.

Let me just put this out there. No matter what the prognosis might be for your little one, he or she will amaze you with their accomplishments. So if you’ve been given news from the doctors on what they think your child will be like physically and mentally, take it with a grain of salt. This child is a gift from God and only He knows what amazing things lie ahead for little junior!

Before we get into those other conditions, let’s first talk about the different types of spina bifida and briefly touch on surgeries.

3 Types of Spina Bifida

It is likely that you are already aware of the different types of spina bifida if you are a soon-to-be parent of one of these awesome kiddos. But for the sake of being thorough, we will briefly touch on each of these.

• Spina Bifida Occulta – This is the mildest form of spina bifida as there is no opening on the back.  Most of the time it goes undetected until the symptoms of a tethered cord presents itself. 
• Meningocele – Part of the spinal cord is pushed out into a fluid-filled sac. For most individuals with this type of spina bifida, there is usually no nerve damage. 
• Myelomeningocele – This is the most severe form of spina bifida and the most common. This is where the nerves and spinal cord protrude through the open spine. Oftentimes, the nerves are exposed with no skin covering and surgery is performed within the first day or two of life to prevent infection and further nerve damage. 

For the purposes of this post and this blog for that matter, we are mostly referring to the kiddos with myelomeningocele. 

Surgeries Associated with Spina Bifida

Although it is impossible to tell you how many surgeries your child will need or when to expect the next one, that very first surgery could be before your little one is even born. The option to have prenatal surgery is before 26 weeks gestation. I have a separate post that goes more in depth about prenatal surgery and the decision we made about that surgery. You can read that post here.

Other types of surgeries that could be in your child’s future would be:

• Surgery to detether the spinal cord
• Treatment of hydrocephalus and recurrent shunt surgeries 
• Bladder and bowel problems
• Orthopedic problems – Foot/ankle deformities, hip issues, fractures, contracted muscles 

I wouldn’t let this list scare you because you still have not met your little one. Spina bifida and its complications are not predictable. That’s why it is often referred to as a snowflake condition. No two children will have the same issues, surgeries, or outcomes. With that being said, let’s now look at those other conditions caused by spina bifida.

4 Conditions Caused by Spina Bifida

Hydrocephalus and Chiari II Malformation

Hydrocephalus is the most common condition caused by spina bifida. This is also associated with Chiari malformation which is caused by the spine being pulled down into the brainstem. The flow of the cerebral spinal fluid gets “clogged” so to speak and starts to pool up in the ventricles of the brain. There are two ways the extra spinal fluid can be dealt with; a shunt or a procedure called endoscopic third ventriculostomy (ETV). If ETV is successful, this avoids the need for a shunt. Shunts come with their own set of worries that will continue for a lifetime so if ETV is a possibility for your little one, you should give it some serious thought. 

Neurologic Function and Progress

Since spina bifida directly affects the nerves, it is likely your child will see a neurologist. It is common for kids with hydrocephalus to be susceptible to having seizures. Your neurologist will want to follow up to make sure there have not been any changes with seizures. The doctor will also evaluate how well your child is progressing with his milestones and may suggest more therapy if there seems to be significant developmental delays. 

The neurologist will likely refer your child for a vision exam before the age of one to make sure there is no pressure behind the eyes and to determine if glasses are needed. This is a common result of hydrocephalus.  

Bladder and Bowel Control 

Bladder and bowel control is another common issue caused by spina bifida. Depending on where the defect is located on the spine, this will determine what possible nerve damage there will be and what other organs and limbs are affected. Things can go bad pretty quickly if the kidneys or bladder get infected so it’s essential to be aware of any changes in the urine. That’s why it’s important to follow-up with the urologist every six months for an ultrasound of the bladder and kidneys to make sure they are functioning properly. 

Muscle Weakness Above and Below the Defect

Muscle weakness occurs in the trunk and limbs above and below the defect on the spine. Most likely your child will need the use of some assistive devices for his or her legs and feet. Orthotic braces for the legs and feet are pretty common with spina bifida kids. At one growing phase or another, your child may need an assistive device like a stander, wheelchair, reverse walker, or walking sticks. 

Therapy, Therapy, and More Therapy

Although therapy is not a condition, it’s the result of a condition. Lots and LOTS of therapy will be in your child’s future! There are specialists that can help with developmental delays whether that’s due to physical or mental delays.

Speech, occupational, and physical therapy will help your child reach his or her milestones at just the right time for them. Check with your state to see what services are offered for early intervention services designed to help developmentally delayed children from ages zero to three years. 

It’s frustrating and heart-breaking to watch them struggle with just the simplest task such as sitting up on their own, but once it’s accomplished, you’ll never feel more proud of your little one! And it goes without saying that the most influential person in helping your child reach those milestones is YOU!

Never underestimate the power of your love, support, encouragement, and enthusiasm when your child is working so hard to do “normal” things and reach those milestones. Their little faces will beam with pride knowing you are cheering them on!

Where to Go From Here

I would highly recommend finding a local spina bifida group to connect with. You can search for groups on Facebook or you can visit the Spina Bifida Association’s website to find a local chapter or online community. These groups and communities are a valuable resource for your family as you navigate through this new world. 

Hopefully, you feel more prepared and less in the dark about this other side of what will be the new normal for your family. It’s definitely not the easy path but you will learn and grow so much along the way. Your child will inspire you in ways you’ve never imagined. Your new normal will make you see things in a different light and might I dare say, your world more precious and beautiful!

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Photo credit to:

Shitota Yuri

The post Know the 4 Conditions Caused by Spina Bifida Before Bringing Home Your Baby appeared first on Breaking the Confines.

I so badly wanted to be a part of the Huxtable family as a child. Do you remember “The Cosby Show?” Dad was a doctor and mom was a lawyer. They always had the best ways of teaching life lessons to their kids. They were always making each other laugh and spending quality time together.

I was convinced they were a real family and even after I knew the truth I continued to believe they were real. I wanted to wholeheartedly believe that a family like that existed. And I wanted to be that family someday.

As children and teenagers full of hope and big ideas, we dream of what our own families will be like. We dream of what our occupation will be, who we will marry, and how many kids we will have. We even think about what kinds of pets we will have and how many.

What we usually don’t dream about is having a child with spina bifida (or any kind of disability for that matter). We don’t dream about raising a child that will never be like his siblings. We don’t plan for the difficulties that lie ahead for our little one and for our family as a whole.

And once we get the diagnosis that our child will never be “normal,” we don’t dwell on the blessings of having a child with spina bifida. At least not at first.

Give Yourself Permission to Grieve

We are told that when we lose a loved one to death the path to healing is by going through a grieving process. In the same way, as new parents to a disabled child, there is a path to the new way of life for your family. It is a way of recognizing that your life and your family’s life will have a new normal.

1. There Must Be A Mistake (Denial)

You have just received news that this precious baby will face many difficult and heart-breaking challenges in life. And it’s not fair.  “Why did this happen? Could there be a mistake in the test? What could I have done to prevent this?”

I remember the day we were told our son appeared to have spina bifida and that we needed to be referred to a different hospital for another opinion. We were already on pins and needles the day of the appointment. My OB had personally called me a couple of weeks beforehand to give me the blood test results for a protein produced by the baby. Abnormally high levels indicate spina bifida. I remember her telling me the range that it should be in and although the levels were considered high, it was at the lower end of the high range. So, it was a good possibility the test was not accurate.

Although we knew there could be this potentially bad news, we wanted big sis to meet her baby brother. She had waited a long time to be a big sister. And maybe in the back of my mind I thought if she was there, it would bring us good news. The ultrasound took f-o-r-e-v-e-r. Then the high-risk doctor told us that it appeared our baby did have spina bifida. He had the lemon-shaped head and a tiny sac on his lower lumbar.

We sat there in shock and disbelief of this realization. At that point, it felt like we were in a bad dream and nothing seemed real. Before being referred to a more qualified hospital, we were asked if we wanted to terminate the pregnancy. I was taken aback by this question. I’m sure it’s just protocol but the OB clinic was housed in a Catholic hospital. How ironic that it’s protocol for abortion to be considered right away after being given devastating news inside a religiously run hospital. I mean we hadn’t even had time to process this information and here we were being asked if we wanted to terminate this precious life.

As I look at my son now and think back on that day, I cannot imagine giving up all hope for him just because he’s physically a little different. To see how he has beat so many odds already is amazing. He continues to astound me every day.

2. My Baby Doesn’t Deserve This (Anger)

It’s a guarantee you will feel quite enraged about this new reality. The unfairness of it all. Why is this happening to your family? Hasn’t there been enough chaos and torment already? First a miscarriage, then your father gets diagnosed with brain cancer. And now this. All within one year. Enough is enough.

A lot of things are unknown during a pregnancy with a spina bifida child. And the doctors can’t predict the future for your child nor should they want to. In the meantime, you have to mentally prepare for a lot of scary things that could happen. Will the baby have any feeling in his legs and feet? Will he have to be catheterized? Will he need a trach or a shunt?

It’s scary to think about the future and normal to feel anger and disappointment that this is affecting your baby.

3. If Only I Had … (Bargaining)

This is where guilt can set in but you have to remember it’s not your fault. You did not willingly cause this to happen. You will have a million “what if’s” and you will blame yourself every time. Don’t allow yourself to stay in this place for long. It’s not healthy for you or your baby.

The best thing you can do besides lots of prayer is have positive thoughts. Say these things out loud and speak them to your child. I used to stand in the shower and rub my belly as I spoke positive words about my son. I know it sounds a little cuckoo and it will feel very uncomfortable at first. But it’s allowing yourself to realize you are not to blame. You are speaking into existence a positive future for your child.

4. What Good Can Come From This (Depression)

You notice other kids riding their bikes and running. And you realize your child may be paralyzed from the waist down. Your baby may never be able to run or ride a bike. At least not like normal kids. The truth hits you hard. Almost knocks the wind out of you and leaves you with tear-filled eyes as you drive down your neighborhood street on a beautiful sunny day.

“This is not fair! Life is so cruel.” With this darkness looming over you, how can you find the good in this situation? It may seem like this dark cloud will last forever as your child will continually face new challenges, surgeries, and countless doctor’s appointments, but I promise the dark cloud will dissipate.

5. This Baby is Perfect (Acceptance)

One thing is for certain. You will love this baby unconditionally and you will realize what a miracle she actually is. She will remind you of this every day as she strives to meet her milestones. You will eventually find peace and acceptance with the fact your child is especially unique. And you will rejoice with even greater joy at the smallest of accomplishments. That milestone of rolling over? It might take six months but boy when it happens, sheer joy!

Your New Normal, Your New Family

Once you have come through to the other side of the grieving process, you start to find the new normal for your life and your family’s way of living. Eventually, you start to see the beauty this new way of life holds. And my how beautiful the view is.

I leave you with an essay so lovingly written by Emily Perl Kingsley. It is called “Welcome to Holland.”

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

One Last Thing

I would like to say along with all the other moms and dads of special needs kids, “Welcome to the family!” You are now a part of a special community that understands your pain, your grief, and your joys that families without special needs kiddos do not understand.

To learn more about spina bifida check out Spina Bifida Association’s website for a ton of resources and information.

What have you learned so far from your journey?

The post How to Deal with the Diagnosis of Having a Child with Spina Bifida appeared first on Breaking the Confines.