How To Embrace The Truth of Being a Special Needs Mom

I’m a special needs mom to a beautiful young lady. Today Sunday, August 6th, my stunning daughter Alexia turns 23-years-old. I woke her up earlier than I usually do on a Sunday because we had so much to do.

 

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As I helped her to shower, which I often do, the thought hit me, “I am helping my 23-year-old daughter to take a shower.”

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Tears came to my eyes, because right there and then the truth about being a special needs mom engulfed me.

As I prepared to wash her hair, in the background I could hear one of my favorite praise and worship team.  I broke down crying at the sink. With hands raised to the Lord, my tears took control of my emotions.

Allowing myself to cry aloud, and accepting that Alexia will be with me forever.

Hugging her while I call her name out to the Lord, I told her how much I love and adore her. As her head laid on my shoulder, I embraced the truth of being a special needs mom.

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It’s as if reality finally kicked in.

She will be with me for the rest of her life, and I will need to help her daily. I will forever be her caretaker and forever a special needs mom.

The truth is my heart quietly breaks for her on a daily basis.

She won’t be going to college, moving out, and probably won’t be getting married. She won’t be living an independent life, she won’t be having her first apartment, or her first car.

But inspite of all of those things I celebrate her and who she is. Alexia is beautiful, kind, affectionate, loving, caring and kind.

Alexia loves the Lord and she hears from Him. She enjoys music, dancing, singing and sports.

She is anointed by God and she is gifted.

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She reads her Bible and prays daily. She is a joy to be around and it makes me proud to be her mom.

Yes, we still pray and believe God for a miracle, to manifest total healing for her.

In the meantime, the reality is that I have to take care of my big baby. The same way I take care of my little baby; Michael Jr.

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Alexia can do 75% of the self-care herself, but my heart still breaks for her.

Honestly, my heart breaks for me too.

When Truth Meets Reality

Over the last 23 years, I have given and assisted Lexi in many showers. So, Am I just realizing that I will be her caretaker for life?

Of course not! But for 23 years I have been busy trying to get her all of the help she needs. Always making sure she’s afforded every opportunity to do every thing her heart desires.

So yes, it finally hit me, “I have to take care of her for the rest of her and my life.”Sure there are group homes. I know many special need moms, who have had to put their children in group homes for different reasons.

No judgment here.

I know until you’re faced with a situation, you’re not able to say what you would do in that situation.

However, for me, as long as I’m  capable and able to take care of her, my baby will stay right here at home with me, and I will continue to be a special needs mom right from home.  Here, in this big beautiful home that I bought for her to enjoy.

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I’m determined to afford the best, happiest, most comfortable, and fulfilling life for her – at any cost.

I’m aware that I can get someone to come in and help, but there’s no need for that. While other children with special needs need constant help, Lexi is not at the stage where she needs me to do everything for her.

Plans For The Birthday Girl

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Alexia wanted to get her hair braided which I’d planned on doing yesterday. However, she went skating with friends instead. So at 5:45 a.m. I woke her up so I could wash her hair and give her a deep conditioned. So she could have it braided.

She had experienced Alopecia a few hairs back where she lost all of hair.

Therefore, I have been keeping it “all natural” without any chemicals – with the exception of her prom.

It took about 3 years for her hair to come back, but it finally did. Today, her hair is thicker than ever.

***EBook coming soon on how I was able to help her hair grow after Alopecia***

In addition to getting her hair braided, she wanted to get a manicure and pedicure. Usually, we would have done that on Saturday too, but she was busy with friends. lol

When Did It All Start?

My Journey as a special needs mom began when Alexia was not developing like other children her age when she was extremely young.

Her pediatrician referred us to a developmental doctor who determined that she was developmentally delayed.

Right away I was referred to a child study team. At that point, I was living in a smaller city. After we completed our interview with the Child Study Team, a lady followed me outside.

She said: “honey the best place to be for your daughter is the next city over.” So, I went home and we started to pack.

Early Intervention

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Alexia started early intervention at 2.5. Her bus picked her up early so that I could attend classes and go to work on time.

I had chosen to attend Essex County College which is the local community college. Essex County College had a daycare which was a huge need for me since I had a toddler.

I was able to make arrangements for Alexia to attend half days because the early intervention was only half days.

Whether it was a rainy, sunny, or snowy day –  I waited outside for Alexia’s bus to arrive. The bus usually comes between 11:45 and 12:15. That meant I had to schedule my classes and work-study schedule around Alexia’s bus arrival.

What Is The Best Thing You Can Do For Your Child As a Special Needs Mom?

As a special needs mom, the best thing you can do for your child is to get him/her all of the help they need.

Find a learning environment that’ll best meet their needs. A place where they can flourish and grow into the wonderful child that’s locked up inside.

Some special needs moms choose not to find a learning environment that can meet the need of their child for various reasons. But instead, allow their child to stay in a regular learning environment.

I often encourage special need moms to think of their child and what that child needs are.

Some of those reasons are:
1. Shamefulness
2. Stigma
3. Thinking the child is lazy
4. Not accepting the doctors or child study team findings
5. Believing God for healing (as a believer and a special needs mom, please listen to me).

I’m still believing and praying for the manifestation of total healing for Lexi.

However, in the mean time,  I’ll do everything in my power to help her.

So, I encourage you to do the same and get your child all of the help they need.

What Is the Next Step After Early Intervention?

Once Alexia completed the early intervention program, she also attended kindergarten at the same school.
I wasn’t happy with the kindergarten program at all. When I went to visit, I noticed the children were always coloring. From what I observed the teachers weren’t teaching them.

 I’m one of those moms that just showed up at school.

I felt that the teacher was pitying the students instead of giving them the opportunity to learn. So I frequently stopped by the classroom to check on my baby.

You see, special needs children ONLY need an opportunity to learn.

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Therefore, I transferred her out of that school, to a Christian School. The board of education would come to the private Christian school and give her the services she needed.

As a special needs mom, it’s important for you to know your rights.

You’re your child’s best advocate! His or her opportunity to learn is dependent on you. 

Thankfully, the teacher at the Christian school was certified in special education. She worked vigorously with Alexia to help her learn.

To this day, I credit that little school for taking the time to find a learning style that worked for Alexia which helped her to excel.

Unfortunately, the Christian Academy only went up to the 2nd grade.

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New School Nightmare

Once Lexi graduated from the Christian Academy, unfortunately, for special ed, she had to register in our neighborhood school.
I met with a new child study team that referred us to the school that would best meet her needs.

That took about three months. So for three months, Alexia sat in a class of 3rd graders lost because she wasn’t on a 3rd-grade level. However, I brought her other books to the school, and the teacher worked with her on her level.

Once the child study team made a determination, they gave us an option of two schools. I choose the one that I thought was the best option.

That was a nightmare!! Even though Alexia was in the third grade, she was in a class with kids of all ages and disabilities.

What Do You Do When Another Student Threatens to Kill Your Child?

Have you ever had another student threaten to hurt your child?

1. I was in the principal’s office EVERY morning complaining.

2. Unfortunately, Alexia was in a class of about 12 children with one teacher. Additionally, there were two teacher’s aids, plus I had requested that she got her own teacher’s aide.

3. So why did Alexia come home one day with her skirt in a bag because she cut half of it out? Did I mention there were four adults in the class?? How was she able to cut half of her skirt without anyone seeing her!?

4. Then another student ( a boy) threatened to throw her through the window. This child was in 7th-grade and looked like a football player. He could have easily grabbed my very tiny baby and threw her through the window.

New School Again?

After those incidents, I continued to complain to the principal. Additionally, I would complain to the school psychologist.

Finally, the psychologist shared a little secret with me. Apparently, there was a special needs school right around the corner from my house.

She explained that there was no guarantee, but it was worth a try. When we went for the interview, I wondered why Alexia wasn’t referred to that school from the beginning.

It was the perfect environment for her. They had everything any special needs child needed.

At that time, it cost about $8K to educate a child who didn’t have special needs. In comparison, it cost the board of education about $40K, to educate a special needs child.

At this perfect environment school, unfortunately, there were only six spaces available. And there were about 30 kids waiting to get in.

No problem, I prayed and claimed one of those spots for Lexi.

14 years later my baby graduated from that school and we wish she didn’t have to leave. 🙁

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How Do you Embrace Being A Special Needs Mom?

1. Know that Children are gifts from God.

Regardless if they’re  special needs or not. It’s important that you know that children are gifts from God.

♥♥Children Are Gifts From God♥♥

I’m NOT of the mindset that God gave us special needs children because he knows we can handle it.

I have heard many horror stories of children being abused by their parents.

So what about those children?

I do know that it’s NOT God’s will for any of us to be sick. But God’s perfect will is for all of us to be healty and well. God’s will for us is for nothing missing, nothing broken, and nothing lacking.

Why do we have special needs children? I don’t know, and we won’t know until we get to heaven.

Also, let’s remember that we live in the fallen world.

2. Praying For Our Children

I cannot stress how important it is for us not only as a special needs mom but moms period to pray for our Children.

There were a lot of hardships, trials and tribulations that Alexia and I faced very early in our lives. I was a teen mom at 16 and homeless. Then to add on top of all of that, a child with special needs was beyond stressful.

But, I found peace in praying and crying out to God.

No parent wants to have a child with special needs. However, we don’t get to choose what kind of children we get.

And as I often say “life happens.” But, Praying helps both you and your child.

So what I did was, I began to write out Bible verses and prayed them over Alexia. After a few years of doing this, it turned into my first published book Praying For Our Children (Reprint coming soon).

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3. To Mainstream Or Not?

There are quite a few meanings for mainstreaming. In this instance, it is when you allow your child to stay in a regular school and get pulled out of class for special education.

In Alexia’s case, she attended a special needs school.

Few times per year, a few students would visit with 2 other schools for music and painting. But, they go as a group, along with a teacher and aide.

Also, did you know that special needs children can stay in their school until they are 21? In Alexia’s case, she was able to stay an extra year because her birthday is in August. And the child has to turn 21 by graduation day.

As a special needs mom, you know what your child’s needs are.

Here is a short list to help you to decide if your child needs to be mainstreamed:

1. Be honest with yourself, can your child survive in a regular school?

2. Will it be better for your child to be in a learning environment where it’s strictly special education?

3. How will your child benefit from being mainstreamed?

4. How will your special needs child fit in with other children who aren’t special needs?

5. Do you have concerns about your child’s safety?

6. Can your child navigate school grounds by his/herself?

4. Allow Your Child To Live Life To The Fullest

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The notion that special needs children need just the basics in life is ridiculous.

I believe they need more opportunities to blossom and grow.

Therefore, it’s imperative as a special needs mom to ensure your children live their lives to the fullest.

Find out what your child wants to do.

Do they want to play basketball?

Swim?

Play football?

Are there any programs in your community that provide services to children with special needs?

Lexi has always lived a full, busy, active, and fulfilling life. Whatever she wanted to try, do or go, I made it happen for her. Therefore, every special needs mom out there, I encourage you to keep your child, busy, active and involved.

♥♥Remember, special needs children ONLY need the opportunity to learn♥♥

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Here are a few of Alexia’s activities and accomplishments:

1. Skating: She is an excellent skater
2. Dance Classes: Ballet, Jazz, Hip Hop, Zumba
3. Music Class-Chorus
4. Drums (She took lessons for about six years. She’s on the cover of my newest book In Christ I Am…playing the drums)
5. Bought her a drum set for her 16th birthday
6. Swimming (She is an excellent swimmer and diver)
7. Golfing
8. Rock Climbing
9. Piano lessons

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Finding a dance school that would work with her at her level was difficult.

We tried 3 different schools when she was younger. But she wasn’t able to keep up with the other children, so she wasn’t allowed to continue.

Years later, as I checked around, I found The Newark School of the Arts. And they work with Children with special needs. Alexia attended this awesome school for about eight years, taking various lessons.

5. Pick One Thing To Master At A Time

As a special needs mom, it’s essential to understand that your child learn differently.

Your responsibility is to find the best way they learn and then help them..

My one thing was reading

I’m an avid reader, and I tried my hardest to teach her how to read. I even paid for tutoring classes to help her learn to read.

When Alexia was younger, I didn’t allow her to watch T.V. on school nights. She also didn’t  have a T.V. in her room until she was 12.

We spent our evenings reading and learning to write her name, address, and phone number.

My thinking was; God forbid she gets lost, she can tell someone where she is.

6. Independence

You know your child.

You know what he/she is capable of doing. Someone said to me recently that I needed to let my daughter get on the bus and go to the mall.

I was shocked, to say the least.

But in her defense, she doesn’t know us very well. Because anyone who knows us knows how busy and active I keep Alexia.

My question was for what?

From my house to get to the nearest mall, she would have to take four buses. There’s no need for my daughter to get on 4 buses for her to have some independence. There are plenty of other ways she gets to explore her independence, in a safe way.

And more importantly, I asked her how does she know that my daughter had the capability to navigate four buses to get to the nearest mall?

So I find ways to give her some independence such as:

1. Community center for her weekly activities
2. Skating
3. Clothing (she is a fashionista as u can tell from her pictures)
4. Room
5. Food
6. Entertainment
7. Hanging out with friends for various activities

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Alexia is at her favorite Boy Band Concert . 

7. Special Needs Mom –  You Must Have A Support System

My support system consists of other special needs mom. I don’t do activities with moms who are not special needs moms. It’s too stressful, and I have to explain too much.

Parents who don’t have special needs children don’t understand.

My support system is a group of about 5-6 parents and a tighter knit of 3 parents.

When any of the kids from the school need help or needs to go to an activity, etc., we are always available.

So, for example, they called to see if Lexi was having a party today for her birthday. This year she wants to have a sleepover, so i’m planning a day sleep over party. Last year, I had a huge party for her birthday and graduation.

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With my support system, we take turns doing activities with the children. They are all friends and keep each other updated on different activities.

Here are a few activities:
1. Skating,
2. Bowling
3. Fun Plex
4. Shopping
5. Dining out
6. Movies

8. What Do You Tell Your Child?

If you have not had to tell your child that she is not able to attend college, because there isn’t a college that can meet her special needs, you don’t know the feeling.

From the time my daughter was a little girl, I was in college. So she knows that after high school the next step is college.
However, there is not a college that can meet her needs.

Do you even know how sad that is? Has your heart ever broke for your child?

How Did I Handle This?

  1. I did all of the basic things.
  2. We attended the special need college fair to see if there was any that met Alexia needs.
  3. Continued to do research and talk to her about her future.

Unfortunately, there isn’t a college that would meet Alexia’s needs.

But if you think about it, college is all about independence. My baby gurl is not able to navigate a college campus alone. Neither is she able to test to get in.

And neither can she read and understand the driving manual to get a license. Ok, I’m starting to cry again. More to come about this soon.

9. THE #1 MOST IMPORTANT THING YOU NEED TO DO AS A SPECIAL NEEDS MOM.

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Mommy, the best thing you can do for your you and your child is to take care of yourself

1. You need some “me time.”

2. You need to go and get your hair done alone.

3. Spend time alone or with friends.

4. Have lunch alone.

5. Unwind alone.

I know it’s hard to have some alone time. But I encourage you to try and find the time to do so.

I kept  Alexia with me all of the time. We did everything together. But some days, while she was in school, I would take a day off of work and rest or “do me.”

And as I mentioned earlier, I have a support system. So if one mom took the kids skating last week, then another mom will take them to the mall, or dinner, etc. the following week.

This way, you have some time for yourself.

FINALLY, MAKE SURE YOUR SUPPORT SYSTEM ARE MOMS THAT YOU CAN TRUST.

Thank you so much for allowing me to share my heart with you about being a special needs mom.

I know I’m suppose to do a conclusion but how about you help me to write my conclusion? My heart is really heavy. Thx much

***ONE LAST THING BEFORE YOU GO***

Do You Know A Special Needs Mom That Would Be Encouraged By Our Story? Please Share.

Are you a special needs mom, or just a mom who needs a safe space to talk and unwind? I Invite you stop by my Super Mom FB Group here. Thx

Are you looking for safe haven for women to sit back and talk? Then please join my The Naked Wife-Women Healing Women Group for a place to connect and get support.

Did you know I have another Blog called Janice Hylton Blog?

THANK YOU AGAIN FOR STOPPING BY

XOXOXOX

 

♥Janice♥

62 thoughts on “How To Embrace The Truth of Being a Special Needs Mom

  1. Great piece Janice. So much for people to learn from your story about those with special needs and those who love them, advocate for them and enrich their lives.

  2. Stay blessed, stay happy dear. <3 <3 You are an extremely strong and devoted mom.
    God knew you could do this. Not everybody can. Your daughter is beautiful and your article is full of love.

  3. Thank you for sharing your journey. I, too, have a son who is special needs and I understand the daily struggle. He has Ausberger’s, which means he seems brilliant at times, but still is like a child in his decision making. We have struggled with daily living, not knowing what he truly understands and what he is simply nodding his head to say he understands. The good news is that he is 18, is driving, and is attending a local college. However, he still lives at home and does not seem to have any goals for his own life, nor any real friends. I worry that he will never find a career path, or a wife, and maybe never have a family of his own. We pray and ask God for guidance on how to help him live a life of purpose and fulfillment. Thanks for advancing the decision on how to care for a special needs child. Tell Alexia “Happy Birthday!”

    1. Ohhhh, you just made me cry. That’s wonderful that he is driving and attending college. That’s a goal many of our children have and I am so happy for you and for him. He’s only 18, he has lots of time to decide on those other things. Congrats and hope you SUBSCRIBED for updates. Thx much.

  4. It must’ve been so difficult to relive all these difficult experiences to write this powerful post, but you’re giving other moms so much hope! Your daughter is beautiful and absolutely looks like she’s living her best life with your help! You’re doing such a great job.

    1. AAAwww, I cried most of the way through the post. lol. But it was really therapeutic for me. It was as if a light came on for me. It hit me while I was helping her to wash. I just wanted to share so other moms know that they are not alone. Thanks so much for stopping by. Hope you SUBSCRIBED for updates. Thx much.

  5. Omgoodness, I don’t do long Blogs..
    But your story watching and really Heartfelt..
    In short.. I’m sure this will encourage anyone with special needs. My Aunt has 2 special needs children.
    But I definitely see what she has endure, reading your blog. Great job my Mom.
    Be Encourage. Blessings

    1. LOL @ long blogs. lol!! I had to get it all out. lol. Yes, I hope this post will encourage other moms with kids with special needs. AAwww hopey your aunt has a support system. 2 kids with special needs is a lot. Thx for commenting and hope you subscribed for updates. thx much.

  6. That’s such a powerful piece. I wish you and your Lexi continuing happiness. I am glad you have that good support system in place to replenish you.

  7. What a beautiful article, I am not a special needs mom but sounds like you are doing an amazing job at it and giving your daughter the best footing she will need. Keep it up!

  8. I have tears in my eyes! What a beautiful mum you are to a beautiful daughter! I cant imagine how hard life can be! My daughter is only two and I am with her 24/24 and I am exhausted. I will pin your post and I hope many parents out there get to read your post and get inspired!

  9. You and Alexia are an inspiration. I have a little boy with autism and we have to advocate for him hard to make sure that he’s not mistreated and that he gets a solid education like everyone else. It was an uphill battle and we were lucky to give therapy and the medication he needs to function in society.

    1. AAAwww Thx much. Oh yes, we have to advocate for our babies. Its so sad that we have to fight so
      hard for what they need. Simple stuff like transportation, a good education and medicine? So sad!! I pray
      that you get all of the services you need for your baby. Thx for commenting and hope you subscribed for
      updates.

  10. You have made me cry but also, you have given me hope. I’m Jessie’s. I have lived anD experienced your same heartaches. I do give thanks to God everyday. I give my Jessie his and I say “thank you Lord for my Jessie!”. God bless you!

  11. You are an amazing woman! your children are so lucky to have you! I will be praying for you all tonight! It is never easy to be a parent and special needs parents have so many extra challenges. It is wonderful to see how much you love both your babies! So refreshing! Congratulations on being an amazing mother!

    1. AAAwww tears… thx so much. Yes, I have a 2.5 little boy and he is very busy and in everything and
      wants to go outside all of the time lol. Special needs mommas have so much more stuff to
      deal with. But through prayers and the Lord, we can do all things though Christ.
      Thx for commenting and hope you subscribed for updates. thx.

  12. Reading this just a melts my heart . You are a wonderful special needs mom ❤️. Keep up the good work . Your daughter is beautiful may GOD be with you and continue to Bless your family .

  13. You’re an amazing and such a strong women god bless you & Alexia she’s beautiful and seem to have a wonderful spirit you guys will inspire so many moms who has children that has special needs & you’re such a sweet spirited woman god bless you & your kids ❤️

  14. Children are such joy no matter what the challenge that may present itself. She is a gorgeous young lady and it is so great to see how she has grown. All of the best Momma and many more blessed birthdays for her.

  15. This was a very uplifting blog! I couldnt take my eyes off it until i finished it all…what a great mom you are , as a mother my self this Blog makes me motivated to do more…looking foward to read more of your blogs

  16. Are the schools you would recommend in Newark? My son is having his first round of early intervention assessments (not quite 2 years right now), but I’d like to start doing some research into the special needs schools and services near us. We’re new to NJ so I’m rather at a loss as to where to look first

  17. Thank you so much for sharing your experiences. You are such a strong woman, and wonderful mother. I found myself heartbroken at times, inspired and hopeful at others by you and your daughter. What a blessing! Thank you!

  18. You’re a hero for me. I have three children and it’s already tired enough for everyday life. To take care of a child with special needs, your whole life is truly a heroic work. But love is stronger than anything. Thank you very much for this post and that you opened your heart for all of us.

    1. AAAwww thx so much. You know as I was typing this article up, I was nervous about making myself
      so vulnerable about being a special needs mom. I don’t think I have ever shared like that before.
      I am so glad I did. I was truly therapeutic for me. Thx so much!!

  19. You are indeed blessed and so are your children. Your post was lovely to read and very inspirational. God is faithful and He has given your children a multitude of blessings with you as their mom.

  20. Alexia is a beautiful young lady. And you are a strong, remarkable woman, mother, and advocate for your daughter, as well as, others with special needs. Thank you for sharing your story…truly inspirational!

  21. I worked with kids with special needs and I know how hard it is for you. You are really strong woman and I think that every mom should read this and realize how important it is to support your kids no matter what.

  22. Thank you so much for sharing your journey and advice. I learned so much, got ready eyed at some points and encouraged by your strength and faith in the Lord. Lewis faith also inspires me.

    This post is a gift to people who “think” they know things they don’t. I am one of those poeple. Your post taught me so much.

    Your family is beautiful and you are a sweet and generous soul for writing this. Thank you again.

  23. This is my first time visiting your site, therefore, the first post of yours I have read… I’m looking forward to coming back and reading more! I’m not sure what “special needs” your daughter has, but your heart for her is incredibly touching- I cried reading it! My son has a diagnosed trauma disorder, which isn’t special needs, but so much of what you wrote here resonates with me. Because the trauma happened during his developmental years, his brain was programmed differently. Public school was a nightmare for him, but he doesn’t fit the special education areas either, so I pulled him out of school after kindergarten and have been homeschooling him ever since. It isn’t easy AT ALL, but I feel it’s better for him than getting lost in the shuffle at the school where he didn’t receive much help because he “looks so normal”… thank-you for sharing your heart and your story…and your beautiful daughter with us! Blessings!

    1. AAAwwww Lindsey thank you so much. Your comment brought tears to my and I wish you blessings with your son.
      I am so glad that you pulled him out to give him a better experience. I’s so sorry about the trauma. Our babies go through
      so much and I am so glad that they have moms like you and I and many others who will advocate for them.
      Thanks so much for stopping by and please lets connect on SM so that we can support each other. Thx again for stopping by.

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