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.
Disclaimer: This post may contain affiliate links. That means at no extra cost to you, if you purchase something through one of those links, I will receive a compensation. For more info please read my disclaimer.
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.”
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.
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.
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.
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.
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
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.
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:
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.
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.
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. 🙁
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).
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
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?
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♥♥
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)
8. Rock Climbing
9. Piano lessons
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.
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
3. Clothing (she is a fashionista as u can tell from her pictures)
7. Hanging out with friends for various activities
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.
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:
3. Fun Plex
5. Dining out
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?
- I did all of the basic things.
- We attended the special need college fair to see if there was any that met Alexia needs.
- 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.
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