I asked God..

I asked God to make my handicapped child whole.

God said, No. His spirit is whole, his body is only temporary.

http://llerrah.com/godsaidno.htm 
 

It is amazing how appropriate the above verse is. As a mom of a special child, I tend to forget sometimes that Alex’s spirit is whole. She is his creation and he has made her whole, even if her body doesn’t show it. What does it matter that she is termed CP, DD, Seizures or Autistic. These are nothing more than labels created by man. Her body may face challenges but her spirit is free.

I have often been told that my little girl is a “very happy child”. I’ve also often wondered how she can continue to be so happy with all the medical issues that she has had to face and will continue to have in the future. It is verses like the one above that makes me believe that Alexandra’s happiness shines from within. It is God’s grace showing through her little face and bright eyes. It is his blessings bestowed upon her that makes her smile and laugh at the world as she keeps going on.

As a human being, I tend to get overwhelmed, frustrated and angry at my child’s situation. I must, however, stop and think and learn my lessons from her. Lessons that I can fall back on when times are tough.

It is God’s promising words that I must keep in mind whenever I ask: “why my child Lord?”

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Power Of Words..

Words are one of the most powerful tools that we can use. The power of the written word is phenomenal. It can touch many hearts and bring tears to the eyes of the most strong. The gift of words is so simple to give, yet holds intense love. It can describe true feelings that may prove hard to surface otherwise. What a wonderful legacy to leave for our special child.

With this in mind, please find below a very special poem that I found on Internet. It seemed as if its words were speaking to me as I read line by line. It is one of those poems that you cannot but share with others. Here it is:

My Special Child

By: Cindy Bartko

As I look at your face, my special child,

I see a gift from God, so meek and so mild.

Your accomplishments may seem few and far between,

But happier parents you have never seen.

With every move you make, my heart swells with pride.

My smile beams brightly from side to side.

You'll never know what it feels like to not be loved.

You are truly a gift sent from Heaven above.

As I look at you now I fully understand

That I won't be alone, God is holding my hand.

Life has a funny way of turning things around.

If we let Him take over, His love will abound.

I never knew true faith until you were born.

A special crown I have been given to adorn.

Only a few chosen parents will be able to say

"A special child has been sent to show me the way."

I'm so proud of you wherever we go.

I'll never be afraid to let my love show.

I thank God for you every day

that goes by,I'll never ask, "Why me, God, why?"

www.DSyndrome.com

©Copyright 2007.Najwa S. Hirn. All rights reserved.

My Hopes..

"Far away there in the sunshine are my highest aspirations

I may not reach them,

but I can look up and see their beauty,

believe in them, a

nd try to follow them."

-unknown

Not a day goes by without my hoping and praying for the best of things to happen to my daughter. Usually, that’s what every parent would do for his or her child. However, when you become a special mom, you tend to hope and pray just a little harder. Not just for your child’s well being but for yours also. Seeing your child going through difficult times whether it being medical, physical, emotional or behavioral is very tough. After all, our role as mothers is to ease up the suffering and make everything right. We feel immense guilt and frustrations when we are unable to do that. We are thrown to the sidelines and left to watch as our child progresses through life making the most of things. It’s a tough role. We sacrifice many aspects of our lives since we have been stripped of our control over the simple fact of just being a normal parent.

As a special mom, I have also suffered the guilt, anger and fear but I’ve also kept clinging on to all the hopes, faith and prayers. I believe that is what has been pulling me through all these years. It is without doubt that those were my anchors during the first eight months of Alex’s life that was spent at the NICU. I had to hang on to the hopes, and dreams as dim as they may have seemed at the time. My faith and prayers gave me the hope to go on and assured me that there would be light at the end of that long dark tunnel.

As each day goes by now, I still continue to hold on to higher hopes for my Alex and my self. I have to: otherwise, I will wither away. I know these positive thoughts are funneling unto her and thus making her stronger and better every day..

©Copyright 2007.Najwa S. Hirn. All rights reserved

Rating Toys for Special Needs..

In spite of my years of Internet surfing, I had not, until today, found a site that rates toys for special needs kids based on the disability. Therefore, I was very thrilled today when I came upon this site by pure chance. The search started by my trying to find material for today’s post. A YouTube special needs video led me to a website called: http://www.ableplay.org/. My curiosity took the most of me as I surfed the site and realized that, once certain toy criteria are entered, the site will provide a table for rating each item for a special needs category. I also include the YouTube link to the video that started this search: http://youtube.com/watch?v=pwWeW7PTB_w

Enjoy the information..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Priorities..

I've learned....That the Lord didn't do it all in one day what makes me think I can?

I am my own worst enemy because I tend to overextend myself and fall into the trap of trying to complete seventeen tasks all in one day. At least I can say that I am good at multitasking. My type “A” personality may have contributed to why I was chosen to be a special mom since multitasking is the main job description for that role. Trust me, some days, I don’t know how I can fit it all in. For that reason, I truly appreciated the above words that were emailed to me by my cousin. The trick is to keep reminding myself that I can’t do everything in one day and some things will just have to wait until tomorrow.

As a special mom I am learning to prioritize the tasks. My daughter’s care and needs takes precedence, the rest just fall behind one at a time. The motto I need to go by will have to be: if it can wait until tomorrow, then leave it alone. I guess the clean house that I’ve been dreaming about will take a long time to become a reality..

©Copyright 2007.Najwa S. Hirn. All rights reserved

Staying Healthy..

The start of the school year is a blessing for special moms since it gives us a little break during the day. However, the start of a school year can also mean the start of more colds and infections such as: upper respiratory, staph, ear and gastrointestinal.

Our special kids are more at risk at developing more frequent infections because they usually have a weaker immune system than their peers. I know from experience since my daughter, Alexandra, will catch illnesses very easily. The years of antibiotics, steroids, decongestants, seizure meds and other meds that I can’t even pronounce that she has had in the hospitals has all contributed to her weaker immunity. With that in mind, I take extra precautions when she goes back to school to ensure that she remains healthy and happy.

Here are some tips to keep in mind that can help children and adults remain infection-free:

1. Wash your hands and your child’s hands well with soap and water as often as possible, especially after using the bathroom or coming in from outside.
2. Wash toys frequently especially if your child or others are prone to mouthing these objects.
3. Don’t allow your child to share towels, clothing or linen.
4. Wipe all surfaces clean.
5. Avoid interacting or be in close contact with a person who is infected to avoid catching that infection.
6. Make sure that your child has good nutrition as well as vitamins and minerals.
7. Keep your child clean with daily baths or showers.
8. Make sure that the child’s equipment, such as wheelchair surfaces or other devices are kept clean.
9. Dispose of dirty wash-clothes or tissues after wiping your child’s nose or mouth.

Four pediatricians who specialize in different aspects of children’s health wrote a book entitled: “Naturally Healthy Kids”. An image of this book can be viewed below. The pediatrician field of expertise span from special-needs issue, behavior management, allergy and asthma to Holistic approaches. They provide advice on traditional medicine as well as a natural approach to various children’s ailments.

The review on the book lists that it is an A to Z handbook of illnesses that can be useful for, not only parents, but also daycare providers, teachers are other caregivers.

If you are interested in receiving a copy of this book, feel free to use the Amazon.com search box that is included on the upper right hand corner of this page.

Naturally Healthy Kids: Integrating Conventional and Holistic Treatments for Common Illnesses of Children (Spiral-bound)by Jerry Rubin (Author), Dean, M.D. Prina (Author), Nancy, M.D. Lataitis (Author), Jordan R., M.D. Klein (Author)

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Drive..

As I discussed Alex’s communication needs over the phone yesterday, the therapist I was talking to me: “You are, first of all, a mom and then if you choose to be a therapist you can do that, but don’t forget that you are a mom. If you want to do therapy with your child then set limits to the time that you take on that role. Don’t let the guilt factor consume you because it will.”
For that I replied: “I’d rather not be a therapist but as you probably know, a special mom is driven. We never stop our quest.”

The above conversation left a big impact on me. I’ve been thinking about it so much that I mentioned it to a friend today who happens to also be a special mom. I guess we do lose our mom role when we have a special child. And, yes, we are still overwhelmed with guilt and hurt about our child’s situation. This may never go away but it can probably get easier if we let it. It shouldn’t really disappear completely because it is part of our life and our family’s life. It is already etched in stone and cannot be totally erased. It would be futile to expect it to.

What we must do is try to set limitations on our intense drive for solutions and perfection. If we truly examine everything, there is no real perfection in our world anyway so why should we seek it. We can continue to search and learn about new methods to help our kids but most of all we should just be mom. Sometimes, that’s just what our child needs more than anything else..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Financial Future..

When you become a mom of a special child, you start entering a new world and learning all there is to learn to help your child. The more tools you have, the better equipped you are to fight for what your child needs. Trust me, there is a lot to learn. It is a life long university that, usually, doesn’t graduate you with a degree. You do become certified and well versed in a variety of fields but you don’t ever get to the end. I am not saying this to discourage you, by no means, I mean this as an encouragement to let you know that the more you learn, the better special mom you become. The road may be bumpy but hang in there and keep on those Internet searches, phone calls, therapy visits and support groups.

With all that said, I must admit that it took me a few years to become familiar with the “Special Needs Trust” that can be set up to ensure that our special child’s financial future is taken care of. This kind of legal entity has to be completed by an attorney in conjunction with a financial planner. The document will list and spell out all the needs for the child so parents don’t have to worry if something happens to them. They may rest assured that all their child’s needs will be met since they had a role in listing their input and desires for their child’s comfort.

My husband and I were able to work with an attorney who completed the documents needed for my daughter’s Special Needs Trust and now she has one set up. We are more relieved that that aspect of being a special parent has been taken care off. All I needed to do is take the completed legal paperwork to the bank and complete the procedure.

During my recent search on the Internet, I was amazed to find many books written on the subject. I have included an image of one with this posting. This book, among others, can be found at Amazon.com. I have added a search box on this page to enable parents to have easy access to this book or others in this field.

Good luck on your search!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Full Moon..

I’ve often wondered if our special children’s behaviors can be linked to the effects of the Full moon. Why not? They are little people with emotions, hormones and stress levels just like all the rest of us, so if we can react to the Full moon syndrome, then so can they. I almost proved this theory this past few days when my daughter Alexandra has been exhibiting bad behaviors. Her anger and frustration was trickling onto me leaving me drained with exhaustion. By the time my husband arrived from work this evening, I just needed to get away.

While driving to the evening class that I take once a week, I noticed the glory of that moon up in the sky. It is so close to being full and so bright that it lit the evening sky. It was actually beautiful to watch. It dawned on me that its effects may have contributed to the commotion that we have been experiencing. I don’t care if the moon theory is true or false. All I know is that we sure have had a tough couple of day. Lets hope for better days to come..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Promise..

Each and everyone one of us are going through tough times right now, but God is getting ready to bless you in a way that only He can.
Keep the faith.

The above saying was forwarded to me by email. It has been in my inbox for a few days. Something told me to open that email today. Reading it gave me a lot of comfort, especially since our day today was rather rough. Alex had to go for her annual EEG exam, which had to be done under light sedation. She tolerated the drowsy part well but the side effects of cramping and stomach discomfort that followed was too much for her. Pain sends her into aggressive behavior and I am usually the target of her aggression. I felt so helpless since I failed the first mom job description of: making it all better!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Visit..

Special moms everywhere know that outings with our kids can be a challenge. We don’t know what to expect. Things can go either way and usually it is beyond our control to fix the situation. With that in mind, I prayed hard this weekend that Alex’s visit with her paternal grandmother and aunts will go ok. I must admit that, compared to previous years, the past few gatherings had not been bad so I was very hopeful.

It’s a shame that, since Alex’s birth, we have not had a lot of chances to visit grammie because she lives a little bit far. All you special moms probably understand what I mean when I say that a long car ride may wreck havoc on a special kid’s mood thus leaving them upset before the visit even starts.

This was a special week. It was grammie’s birthday week and aunties were visiting. We really wanted to enjoy seeing everyone. I crossed my fingers as we started the car ride!

My daughter must have sensed my desire for perfection for this afternoon. She enjoyed her favorite music playing from the car’s CD player and was very excited to see her grandmother and aunts. She made me proud during that visit as she made the rounds kissing all the adults as well as acting the cutest and best that she can be. She must have realized that grammie wasn’t feeling well for she never tried to climb on her lap or tire her in any way. She spent time watching her Disney shows humming and smiling with the songs on the TV. She had so much fun that she didn’t want to leave to go home later in the evening.

My heart swelled with love and admiration as we completed this visit. We were actually acting just like any other family visiting the grandparents. Alex was so good that we forgot all about special-needs and all its complications. The only special part about the whole thing was the special bond shared among all of us as we enjoyed Alex’s display of affection for her grammie and aunts..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

My Wish For You..

I enjoyed reading this poem that I am about to share. All moms will probably relate to it as we all wish the best for our kids whether they have special needs or not. Enjoy the poem.

These Are My Wishes For You
Sandra Sturtz Hauss

May you find serenity and tranquility in a world you may not always understand.

May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism.

Always know that there are those whose love and understanding will always be there, even when you feel most alone.

May a kind word, a reassuring touch, and a warm smile be yours every day of your life,

and may you give these gifts as well as receive them.

May the teachings of those you admire become part of you, so that you may call upon them. Remember, those whose lives you have touched and who have touched yours are always a part of you, even if the encounters were less than you would have wished.

It is the content of the encounter that is more important than its form.

May you not become too concerned with material matters, but instead place immeasurable value on the goodness in your heart.

Find time in each day to see beauty and love in the world around you.

Realize that what you feel you lack in one regard you may be more than compensated for in another.

What you feel you lack in the present may become one of your strengths in the future.

May you see your future as one filled with promise and possibility.

Learn to view everything as a worthwhile experience.

May you find enough inner strength to determine your own worth by yourself, and not be dependent on another's judgment of your accomplishments.

May you always feel loved.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Legal Stuff..

What’s a special mom: A special mom is one who displays strong knowledge and experience in the in medical, educational and even legal areas regarding her special child.
It takes years to get well versed in all the aspects needed to help our kids but we keep learning a new thing every day. We tend to keep an agenda, notebook or file of all the important links, addresses, phone numbers and other information that we may need to pull out one day.

To help you in your mission of adding another link to your database, I am forwarding this link to non-profit special needs attorneys. I just found the article on the Internet and have already added it to my collection. You never know when we may need it!!

http://www.specialneedsalliance.com/about-sna.aspx

©Copyright 2007.Najwa S. Hirn. All rights reserved

Flying Saucers..

I still don’t understand my daughter’s behaviors or what triggers certain issues with her. After nine years, I thought that I could read her like a book. That works sometimes, but no such luck today!

Alex usually likes to go in the car, however, that did not happen this afternoon when I told her that we were leaving to meet our once-a-week library friends. She was so upset with that fact that our house turned into a sci-fi scene with flying saucers in the form of CD’s, DVD’s and other objects flying everywhere. The chairs weren’t spared either but they ended up down on the floor rather than up in the sky! What a relief for that! I can’t imagine what I’d do if chairs were flying around in my living room.

I should’ve realized that this outing was not destined to go well when I received a bad note from school today. It seems that the classroom was rather noisy and that bothered Alex to no end. She was a tad more sensitive and the noise was just a bit too much to handle. Once the scales are tipped, Alex’s day doesn’t go very well.

With all that in mind, I never should have suggested the outing. What was I thinking!! I don’t know anything; after all, I’m just the mom!!

All I can say is that tomorrow is just another day and it just has to be better than today!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

In My Daughter's Eyes..

In my daughter's eyes, I am a hero.

I am strong an' wise,

And I know no fear.

But the truth is plain to see:

She was sent to rescue me,

I see who I wanna be, in my daughter's eyes.

In my daughter's eyes, everyone is equal,

Darkness turns to light,

And the world is at peace.

This miracle God gave to me,

Gives me strength when I am weak.

I find reason to believe, in my daughter's eyes.

An' when she wraps her hand around my finger,

Oh, it puts a smile in my heart.

Everything becomes a little clearer.

I realize what life is all about.

It's hangin' on when your heart has had enough;

It's givin' more when you feel like givin' up.

I've seen the light: it's in my daughter's eyes.

In my daughter's eyes, I can see the future.

A reflection of who I am,

An' what will be.

An' though she'll grow an', some day, leave:

Maybe raise a family,

When I'm gone, I hope you'll see,

How happy she made me,

For I'll be there, in my daughter's eyes.

I came across the above Martina Mcbride song by chance. The words were so beautiful that I couldn’t help but remind me of my child. If you’d like to see the video go to:

http://www.youtube.com/watch?v=eLS0Y40WwlA

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Revelation..

I was evaluating my day this evening to determine why it was a hard one. The past few days of not sleeping, combined with running around all day long, and the fact that my angel was acting up today and throwing a tantrum didn’t go well. The spice of that mixture was just too strong for me to handle.

Special moms everywhere will tell you that when you have a special child, sleep ceases to exist. Most special children have difficulty sleeping through the night and therefore function on very little all their lives. I’ve tried to get adjusted to that way of life with no luck. I’ve always been a sleeper. Going on very little sleep for a few days just doesn’t do well with me.

It is during those times when I’m most vulnerable and thus little things bother me. The fact that my child was being a stubborn kid this afternoon really overwhelmed me. My Alex had decided to lay on the concrete in the hot Florida sun at lunchtime refusing to get in the car. We were finishing up a visit at a friend’s house when this incident took place. There was no reasoning with her. When I attributed this to her special needs, my friend said: “but that is just what other kids do! They act up sometimes and test the limits!”

What a shock!! I realized after hearing this phrase that during these past nine and a half years, I was not given the chance to be just Alex’s mom. I’ve been her: medical care giver/ nurse, medical supplier’s nightmare, advocate and fighter against all insurance denials, and a slew of other titles. I’ve been so engrossed in all the special-needs stuff that I had forgotten my utmost role of being a mom. I didn’t even recognizing that kids just act up and throw tantrums sometimes.! What a revelation..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Celebrating Special Needs..

ANYTHING YOUR KID CAN DO, MINE CAN DO DIFFERENTLY

If you like a little humor as well as support and inspiration, check out the book I just found on the Internet. Yes! I’m surfing the Net again! Special moms everywhere can relate to that. It is our home away from home; a pastime and a safe haven that will allow us to have some control over our lives with our kids. By surfing every possible cure out there, we feel that we can fix what is broken. In most cases we convince ourselves that we can!

Back to the book, everything about it spells humor and joy. The title is: Shut Up about… your perfect Kid. The quote at the beginning of this post comes from the title to chapter 4.

The book celebrates special-needs parenting by providing humor as well as support and inspiration for parents raising special-needs kids. The authors are two sisters who are moms of special needs children and have been through it all. The stories in the book bring out the positive side of parenting a special child. I can’t wait to get my copy.

If you are interested in getting your copy, click on the link I provided on the right side of this posting and you can order it through Amazon.

Happy reading and lots of laughs!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Giving My Kid The World..

The look on Alex’s face this evening when I made her “Elmo” talk was priceless. It was a mix of awe and excitement all blended together and shone brightly in my child’s eye as she turned her head to witness this monumental event. She ran to grab the toy and continued to press his tummy to bring him back to life just as mommy has. Batteries are a wonderful invention, aren’t they!!

What a drastic change that is. You see, Alex used to fear toys that talked. Anything with a sound brought intense terror into her little face; she would cover her ears and run away from the offending object. I recall the first time we brought this same “Elmo” home several years ago. Her distress was so intense that I went on a mission that day to take the batteries out of each talking toy that she had in her toy box.

She has come a long way since that day. Intense therapies, nutrition, vitamins, growth and whatever else that has come our way have definitely been helping to tone down her auditory sensitivities. Days of exposing her to offending outdoor noises paid off as she begins to tolerate some of those same toys that bothered her so much before. She still struggles with children’s screams but overall the change in her is phenomenal.

Back to the “Elmo” story, she was so excited with his newly acquired verbal skill that she took him to bed with her. She fell asleep pushing his tummy and activating his voice. Seeing her so happy made me feel as if I had given my kid the world..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

I love you mom..

It is without doubt that my daughter, Alexandra, is a social butterfly as long as the community she is associating with consists of adults. She enjoys visitors to the house as well as interacting with adults during the various outings that we do.

I had mentioned in a previous posting that, aside from one little girlfriend at the library, Alex does not tolerate children very well. Their noise and fast activities bother her. It all stems from her Sensory Integration problems that developed as a result of her prematurity, as well as all that she has had to go through during the first crucial years of her life. Her sensitivities are getting better but we work on them daily with various therapies and exposures to different stimuli.

Her enjoyment for visitors was apparent this afternoon when we entertained two young ladies visiting from a University Communication center. The goal of their visit was to evaluate Alex’s communication skills in order to come up with ideas and possibly generate recommendations for methods that may help her progress in that area.
Alex had suffered a grade I brain bleed in the language area of her brain while she was in the NICU. This has left a huge deficit in her expressive skills.

One of the most frustrating issues for a special mom and child is the lack of verbal communication. Even thought I know what Alex needs and wants most of the time, it is still a difficult issue to handle. She gets very frustrated, especially when in pain since she can’t tell me where it hurts. In the community, her difficulties hinder her as she cannot convey to others what she is thinking or wanting. She can’t understand why her gestures out in the real world don’t work as well as they do on her mommy.

I cannot even begin to imagine not being able to verbalize what I need. My heart goes out to my child as I try to help her with all that I know how. I pray that the visit today will bring about a variety of options that may be available for her. She is a smart child and can understand everything. I hope that one day, with God’s help, and all the therapies and new technologies out there, I can hear her say: “I love you mom”.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Happiness..

I was driving my mom home this morning when she brought to my attention a very powerful comment. She said, “Alex is a very happy child. You can see that very clearly”.
That one comment sent me in a whirlwind of thoughts. What is happiness anyway? In our daily lives, happiness has become so commercial and materialistic. It is unfortunate that “things” make us happy. Children nowadays can’t be satisfied no matter how many toys or gadgets the parents bought. They are constantly bored and always needing more.

That is not the case with a special child. My daughter’s happiness stems from the fact that she is so loved and she knows it. A strong caring family surrounds her. We will do anything for her. The simple act of just cuddling her and watching TV or listening to music, is all that is needed to make her smile. To her, happiness is not the need for a new toy or clothes; it is a state of true love and togetherness. Her joy is seen daily in her smile and actions. It is that pure innocence that she exhibits that assures me that I have succeeded as her mom..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Good Morning Sunshine..

I don’t usually like forwarded emails but I just couldn’t resist this one that I received today from a cousin of mine. Each word of this poem clearly spelled my daughter “ALEX” for me. The flow of the sentences brings out my true feelings for my child as I pray for her well being everyday. I truly believe that God has brought her to this point and will continue to hold her in the palm of his hand. He has definitely heard all my prayers for her so far. A level I (serious trauma) NICU room has a strange way to strengthening one’s faith. Alex remained in that level I for 8 months. While she was there, I couldn’t help but evaluate my life and where I was heading. I became as solid as a rock strengthened by my love for Alex and my need for God. Those were all I had. Control and choices were taken out of my hands and I had to learn to adjust. This prayer reminded me of those days and how far we’ve come. As a mom, I’ll always worry and fret over my girl, but I’ll also always know that God will be by my and her side..

This morning when I wakened And saw the sun above,

I softly said, ' Good morning , Lord , Bless everyone I love'

Right away I thought of you And said a loving prayer ,

That He would bless you specially , And keep you free from care.

I thought of all the happiness A day could hold in store,

I wished it all for you because No one deserves it more .

I felt so warm and good inside, My heart was all aglow .

I know God heard my prayers for you , He hears them all, you know.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

A Lighter Note..

We all need some humor in our lives. I am sure all you special moms out there can relate to this list. I know that I did. I also got a good laugh out of it too since I realize that I am not alone in this venture. It is amazing how our special world is so different than other parents. It is unique but it is ours and our children’s. This world joins us in an inseparable strong bond called special-needs. Enjoy this list that I found on the Internet and cherish your special child.

You know you have a child with special needs when...
by Carol AnCel

You compare ER's instead of grocery stores.
You compare your child's oxygen saturations.
You view toys as "therapy".
You don't take a new day for granted.
You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
The clothes your infant wore last fall still fit her this fall.
Everything is an educational opportunity instead of just having plain old fun.
You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
You also don't mind if your child goes through the house tooting a tin whistle.
You fired at least 3 pediatricians and can teach your family doctor a thing or two.
You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
You get irritated when friends with healthy kids complain about ONE sleepless night when their child is ill!
Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there!
Fighting and wrestling with siblings is considered PT.
Speech therapy occurs in the tub with a sibling.
When potty training is complete, you take out a full page public notice in the Washington Post.
When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
You keep a daily growth chart.
You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
You phone all your friends when your child sits up for the first time, at age two.
With a big smile on your face you tell a stranger that your four year old just started walking last week.
Her medical file is several inches thick and growing.
You have a new belief.....that angels live with us on earth.

Abilities..

It is sometimes difficult to realize that there are people out there who have situations that are so much worse than ours. The challenges we face with our kids blind our sight, thus keep us wallowing in self-pity. I’m as much to blame as anyone else of the “why me” or “why Alex” syndrome. As you have probably gathered, it has been a long day today filled with trials and tribulations. Alex was up and down with her behavior. I just couldn’t pinpoint what was wrong.

It is on days like today that I turn to the Internet in search of anything that may help. The young man featured in the video I am about to share is phenomenal. I will always remember how he described disabilities by saying: “It is not disabilities but abilities, God created me different but big deal!” How true!

We are each created different and possess unique abilities that make us who we are. We need to embrace those abilities and encourage rather than discourage them. The story of this young man in the video made me stop and think about my day. I realize that, in spite of her limitations, my Alex has wonderful abilities that I am thankful for. Abilities that allow her to walk, see, listen, laugh and love. What more can I ask for. Enjoy the video and be blessed today..

http://youtube.com/watch?v=-qTiYA1WiY8

©Copyright 2007.Najwa S. Hirn. All rights reserved.

My Gift To You..

I’ve finally found out where I’m heading with this blog. I eventually would like to print out all the articles and bind them together as a gift for my daughter. I’m not really sure why I want to do that but I know one thing she deserves it. She has gone through so much in her young life. I feel that this will be a legacy that I will leave for her. Even though I’m with her daily, I still feel that this is the only way that I know how that helps me pour out my true emotions.

In the past I had felt guilt and frustrations at what she has had to endure. The ups and downs I witnessed her undergo while she was in the NICU was very heart breaking and stressful. I wouldn’t want to wish that to happen to any mom who had desperately wanted a child, nor on an innocent baby who had no control over what was happening to them.

Initially, I had wanted to write a book for and about Alex. I seem to have given up the idea. Maybe I truly hadn’t and it is still in the back of my mind. That could very well be why this blog was born. It may be my first step towards that book that I have dreamed about all these years.

Alexandra has taught me so much in her own way. The lessons that I have had to, and continue to learn are shaping the new me. The stronger me is learning to let go and truly trust in God’s plan. My dear Alex, this is my Gift to you..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Grandparents' Love..

Grandparents and grandchildren,

Together they create a chain of love

Linking the past,With the future.

The chain may lengthen,

But it will never part.
-Author Unkown-

My daughter, Alexandra, and I had a wonderful weekend. We spent it with my parents who live about 40 minutes away. We tend to do that often. As a matter of fact, after Alex came home from NICU back in 1999, we were forced to move in with my parents for a few months in order than they can help me with the baby.

During those early days, it was very tough to take care of a child who, for 24 hours was hooked to an Oxygen tank, feeding pump and an apnea monitor. The equipment and wires were all that you could view since Alex was still very small at that time. You see, at 10 months of age, my baby was still only 4 pounds; she couldn’t sit up or hold her head up to support herself and sole existence depended on those attachments. The Oxygen tank weighed more than her at that time.

It became obvious that I had needed my parents help to take care of my child and they never failed me. They had always been there for the past nine years. I couldn’t have done it without mainly God’s help and then my parents..

Things have changed so much since those early days of Alex’s homecoming. I am very glad that those days are long gone in our past. We now concentrate on our future. My daughter gets so excited as soon as I drive into the town were my parents live. She claps her hands and laughs as we enter the road leading to their house. Alexandra, who once couldn’t sit her self up until she was nearly two, now gets out of the car and skips along their driveway to get to the door and knocks. The child who was once buried by wires and tubes, now pushes their door and makes sure that she is receiving that first hug and kiss from grandma and grandpa. She shines under their care.

It is true what the above poem says about the strong bond between grandparents and grandchildren. It is a special bond that cannot be replaced or created; it is just born out of love and affection. It was unfortunate for me that I missed out on my grandparent’s love. I want to make sure that my daughter doesn’t miss an opportunity with hers..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

A Special Mom..

Certain articles, essays or poems leave such an impact on the reader that it becomes impossible to ignore them. This article by Erma Bombeck has done just that. My eyes tear every time I read it. I feel blessed that my daughter, Alexandra, picked me to be her special mom. I don’t know why it happened but it is not for me to question but to accept. It’s by no means an easy road, but a road filled with harshness and challenges. As moms of special kids, we have become worriers as we overcome the difficulties. We are a unique breed and a league of our own. Enjoy this posting my sisters in the special world:

The Special Mother

by Erma BombeckMost

Women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructsHis angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew.
"Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter,I can fix that. This one is perfect - she has just enough selfishness." The angel gasps -
"selfishness? is that a virtue?"God nods.
"If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word' ". She will consider a step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them.
She will never be alone.I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

©Copyright 2007.Najwa S. Hirn. All rights reserved.

You and Me..

The past few years I have come to really relate to, and appreciate Helen’s Reddy’s song “You and Me against the World”. The song is very powerful. The title alone describes what life is like for a special mom who cares about her child. Everything happens for a reason and I’m beginning to understand the reasons behind my Alex being here.

Two verses of this song hit home and I wanted to share them with you.

You and me against the world,

Sometimes it seems like you and me against the world,

When all the others turn their backs and walk away,

You can count on me to stay
By Helen Reddy

I began to realize along time ago that if I wanted anything done for Alex then I just have to ask for it and stand my grounds. I had never been a very exuberant person before Alex was born. I can’t believe how much I’ve changed and grown since then. Everyday I see how our kids are getting left in the shuffle when their needs are ignored or sidetracked. I make sure that my daughter’s needs are met.

Here is the other verse from that song:

You and me against the world,

Sometimes it seems like you and me against the world

And for all the times we've cried,

I always felt thatGod was on our side.

By Helen Reddy

It is without doubt that the new strength I’ve found comes from God. No matter how tough life can get, things will be OK as long as we trust in his plan. It is ultimately God who will always take care of things.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Play With Me...

I tried to teach my child with books.

He gave me only puzzled looks.

I tried to teach my child with words.

They passed him by often unheard.

Despairingly, I turned aside.

"How shall I teach this child?" I cried.

Into my hand he put the key

"Come," he said, "play with me."

-auther unknown-

My daughter Alexandra continues to amaze and surprise me on many occasions. She keeps me grounded and reminds me that: after all, she is just another kid. She takes her child duties very seriously as she exercises her right of demanding my attention on numerous occasions. Whenever I get caught up with the medical confusion of it all, she will give me the “we need to play now mommy”. She is so right! As special moms we tend to want to push our kids and strive for more. Our entire daily structure revolves around wanting to teach them one thing or another, forgetting the most basic motherly duty of just playing with them. We set such rigid schedules for them and ourselves that things get overwhelming on many occasions. We must never forget that the most effective learning comes from spending time with your child and just playing.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

What I do..

Any mom will know how important it is to learn that her child is progressing. A special mom is no exception. Actually, it may be more crucial for a special mom since every little step her child takes is a big leap. Small achievements are celebrated highly. Everything is a lengthy learning and repeated process and nothing can be taken for granted. Encouraging remarks, no matter how insignificant they may sound, provide a special mom with a great sense of satisfaction and accomplishment. All the hard work and heartache is paying off.

On that note, I wanted to share a very encouraging comment that I received today from my daughter’s teacher and classroom assistant. They both told me “Alex is showing good learning potential. Even though she is not verbal, she understands and has a high level of cognitive skill. She knows a lot more than she lets us be aware of”. That made my day! I had believed in my child for a long time but it was nice to realize that other people acknowledged her skills and abilities too.

Now if you ask me how can a child who was born weighing 12 oz. and measuring 8 inches come thus far? Even though she continues to face medical challenges daily, I have always taken daily and even minute-by-minute steps to ensure that she functions up to her full potential. It is those steps that I share with you today that have gotten her to where she is today. Here’s what I do:

1. A lot of prayer.
2. A lot of TLC.
3. I encouraged the use of Mozart music in her incubator when she was still in NICU. I
continued to use the music with her at home.
4. I kept up with all the necessary medical appointments that she has needed and will need.
5. I’ve monitored her feedings very rigorously to ensure that she is received enough caloric
intake daily.
6. I ensure that she is receiving enough water daily.
7. I’ve been giving her multivitamin mixed in with her formula daily.
8. I’ve mixed Probiotics in with her formula daily to help her G.I function.
9. I’ve mixed Flaxseed Oil with her formula to enhance her Omega-3 intake.
10. I’ve mixed Olive Oil with her formula for caloric increase as well as its known other benefits
as mentioned in: Better Health Channel.
11. I mix blenderized baby food and other food with her formula as she tolerates them.
12. I have just started giving her Benefiber in her formula. The powder I use contains B-
vitamins as well as Folic acid.
13. For the past four years, I’ve taken her to undergo Hyperbaric Oxygen Therapy at different
times of the year. This is for brain function enhancement as well as a whole body wellness.
14. I’ve arranged for her to receive massage and CranioSacral Therapy twice per week for the
past five years.
15. She has received OT and PT to assist with her movements
16. She continues to receive Behavior therapy, which concentrates on using an ABA approach,
combined with the ABLLS program. She has progressed with this by leaps and bounds.
17. I read to her when she shown interest.
18. We incorporate a lot of music in her day. She loves music and will enjoy watching a jazz
video as well as listen to international music on her player.
19. She learns from watching her Disney TV shows.

Future goals:
20. I am hoping to start giving her PhosphetidylSerine for additional Brain function
enhancement.
21. I am researching the use of Homeopathy with special needs and hope to start her with a
Homeopath to help her ADHD, seizures and other ailments.

Alex is my gift and I will continue to provide her with all opportunities for success..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The True Me..

http://njministries.org/njm/ecards.html

Several years ago a neighbor told me that I was very strong. I was attending college at the time and sharing an apartment with my sister. It always seemed like my sister would be the strong one, after all, she was more outgoing, assertive and exuberant. My neighbor would insist that I had an inner strength that will one day surface. I didn’t believe her at the time even though she held a Ph.D. in psychology, what does academics know about my personality any way, I knew me and that’s that..

Since my daughter’s birth, my neighbor’s words come back to me constantly. One of the biggest lessons that Alex has taught me is how to allow my strong side to emerge. I never believed that I’d have it in me to be assertive and aggressive on many occasions as I fight for her needs. As a special mom we are our child’s only advocate in this harsh environment we call our world. Even the most timid of our species transforms into a Lioness when the need calls and it is always calling. Never a day goes by without some sort of a medical, educational or other service suffers cuts that affect our kids with special needs. Never a day goes by without our exercising our strength as we continue our journey to help our kids. Thank you Alex for bringing out the true me..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

A Strong Back..

Don't ask for a light load, but rather ask for a strong back.

- Anonymous

Many times I seem to catch myself saying phrases like: “God please give me strength to be able to carry out your plan”. I have already accepted and embraced the constant challenges that come as part of being a special mom but I do need the physical strength to keep going. I am almost positive that you face similar situations constantly. Situations that involve lifting, bending, carrying, moving or dragging something during your day. If it is not your child you are transporting then it will be medical equipment, cases of medical formula or other necessary supplies. I am beginning to think that the best weight-loss program out there is being a parent of a special needs child. It’s free and you are constantly walking vigorously while under the influence of the heavy load that you are carrying. You just pray that your back and muscles will hold this strenuous kind of exercise..

©Copyright 2007.Najwa S. Hirn. All rights reserved.