1. Options for Equipment
When my daughter was 3 years old, I was told I had 2 choices for a wheelchair or stroller. I chose the stroller because I didn’t want a wheelchair for her. However, I had no idea that other types of equipment existed and I should research. My advice is to do your research. Search the internet for a variety of strollers and wheelchairs. Talk to a representative from a provider such as Numotion http://www.Numotion.com or National Seating Mobility https://www.nsm-seating.com/ Your child’s therapist will work with you and the representative to obtain the necessary equipment.
2. Have a Worry Free Mindset
During the early years of my daughter’s life, I was often worried she would not “catch up”, meaning develop normally. Every time she would make progress such as increasing the time she was able to sit, I would be hopeful. Then Savannah would struggle to meet her milestones. Therefore, I would be anxious all over again and wonder if she would ever develop physically.
In order to accept the fact my daughter would never develop normally, I had to go through the grieving process. It took a few years, but I finally realized I had to accept who she is, her disability and the reality that she will not be “normal”. However, she will always be normal to me.
During those early years, try not worry about whether or not your child will meet his or her milestones. Celebrate the times they make progress. Write down in a journal or a note in your phone or device (i.e. iPad) every time your special one improves in some way even if it’s small. For instance, I had documented when Savannah sat independently for 5 seconds. Then you can look back at your notes and see all the progress your child has made.
3. Numerous of Resources are Available
At the time Savannah was 3 years old or younger, I was not aware of all the resources available for special needs children. Over the years, I learned many programs exist for funding, medical care (i.e. nursing) and therapies.
You need to research by doing a search online and the best discoveries occur in your community. For instance, you can find many programs by talking to educators, other special needs parents at your child’s school and therapy programs, and medical providers and therapists.
4. Other Parents are going through a similar situation.
Knowing other parents are going through a similar situation as me actually makes me feel better. Talking with others that are living an equivalent life as me let’s me be aware that I am not alone. Additionally, learning about other parents’ experiences helps me to acquire information or tips to improve life with my daughter.
5. My child’s Condition Could Be Worse.
After learning about other children with special needs, I realized my daughter’s disability could be worse. Therefore, I am thankful for her current abilities and that her disability and medical condition isn’t tougher than it actual is.
6. My child would be an inspiration to me and others.
When I was going through the early years of a roller coaster ride of challenges, it didn’t occur to me that my daughter would be an inspiration. Then I came to the conclusion that my daughter’s experiences and story could help other parents and children with special needs.
7. Numerous of Assisted Devices are available
Since Savannah began attending therapy, I have discovered all of the devices that exist to help individuals with special needs to enhance their developmental skills. For example, arm immobilizers assist a child to weightbare through their arms and hands to improve their floor sitting skills. Leg immobilizers make it possible for your special one to stand up and participate in activities such as bowling or miniature golf.
8. Take Breaks/ Time for Me
Although you may often be busy being a parent and taking care of household duties, taking breaks and having personal time is essential. Perhaps, you can hire a babysitter or have a family member watch your child for a couple of hours while you go out. Day after day, you taking care of your child or children and other duties can be be stressful. After awhile, your emotions arise and you will feel overwhelmed.
9. Many Challenges would arise.
When my daughter was a baby, the challenges I would experience with her was not expected. Unfortunately, Savannah has had preemie issues, 12 hospital stays for respiratory difficulties, a couple of surgeries, muscle tone issues and struggles to develop.
10. Despite the Challenges, Hope & Joy Exist.
Even though, you may experience numerous of challenges when raising on special needs child, there is always hope for a better tomorrow. And joy needs to be found in every situation or circumstance.
11. I would Develop Meaningful Relationships
Since Savannah was in the Early Intervention Program, I have met and developed many meaningful relationships. As a special needs parent, you will meet other parents, therapists or medical professionals and may build new friendships.
12. Apply for SSI ASAP!
One major regret I have and wish I could go back and change is not applying for SSI when Savannah was a baby. At the time, Savannah was in the NICU, none of the medical staff had informed me that my daughter would automatically qualify for SSI. Social Security was applied for Savannah at age 1 or 2 and she was not approved due to our income being too high.
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