A Day in Special Needs Clinic 2016-11-16T08:38:23+00:00

A Day in Special Needs Clinic

by Tracy Felix

If you are one of the “lucky” ones who even knows what a “Special Needs Clinic” is, you know how our day went yesterday.

tracy1Basically, because my son has so many doctors who care for him, his doctors and therapists like to get together about every six months and evaluate where he is at now. They also share their goals for his care for the upcoming months. At our hospital, this is called Special Needs Clinic. Most hospitals have programs like this, sometimes only for NICU graduates, but sometimes for older children as well.

About Special Needs Clinic

There are some very good things about Special Needs Clinic. First of all, it allows for unity of care. Everyone is on the same page. It also gives the doctors a chance to see what the other doctors see, as they all only take care of their one area of expertise. They all know what the other doctors are looking to accomplish or their concerns. All the doctors get to see how your child is on the one day, good or bad. And the final report that we get is an interesting read.

It also makes things easier on us. We make one trip to the clinic and they come to our room to see us. This equals fewer trips in and less walking for us.

Special Needs Clinic can also be difficult. Our day starts very early and ends very late. If your child is like my son Noelie, he starts off good and strong, but gets very tired as the day goes on. They make him “show off” on the spot, and sometimes he doesn’t want to. It can be especially hard with siblings. This time we had to bring our youngest and every toy in the house to keep him occupied.

A Day at Special Needs Clinic

Here is a recap of our last visit to Special Needs Clinic, so you get an idea of what to expect if you ever have a clinic like this that you need to go to.

The night before put your kids to bed so you have a clear mind to remember everything. Get any toys, formula, snacks, braces, equipment and questions rounded up and put by the door. Most importantly, get a good night’s sleep! Leave plenty of time in the morning for getting ready so you don’t forget anything at the last minute.

Once you arrive at clinic and check in, they will most likely get vitals, including weight and height. You will then begin to see a parade of medical professionals. For example, last time we saw the following people:

  1. A Physical Therapist, who adjusted his special needs stroller and talked about getting a stander. My son also showed off new skills like picking up blocks, following a light, and turning his head to both sides.
  2. A Speech Therapist, to show off new eating skills (Noelie did REALLY well here).
  3. Met with a nutritionist about his feeding schedule.
  4. Another Physical Therapist, who measures range of motion and your kid’s functional age.
  5. A muscle doctor or physiatrist, who gave Botox to help loosen muscles.
  6. Orthopedics and orthotists who took casts of his feet for foot splints or AFOs for standing in the stander. We have to come back to make sure they fit once they are made
  7. A Neurologist, to talk about his hospital stay and dealing with seizures.
  8. The primary doctor, for follow up after his last hospitalization.

In case you lost track that was eight doctors or therapists. Noelie is always bringing joy to everyone he sees, and today was no different. The doctors said he was the star of the day. Everyone was so impressed with his progress and, of course, couldn’t believe how big he had gotten and his full head of hair. Our day at the clinic ended at 4pm! We ran some errands in town and were home by 5pm.

The Benefits

There really are more good things than bad things about Special Needs Clinic. I feel so blessed to have this opportunity for our son. I really love how all of his doctors are under the same roof and all want to be on the same page with his care. Having that unity is so important. It makes our lives so much better. It definitely cuts down on the amount of explaining I have to do. They also have access to the hospital records and the home therapists’ records, which is also convenient for us. They all know about recent hospital stays, and can weigh in about that. They can look at the therapists’ weekly notes and see how he is doing on a weekly basis.

I know a lot of people out there are not receiving the same level of coordinated care for their children. I hope that more hospitals will start having Special Needs Clinics, as they have helped us so much.

Author: Tracy Felix • Date: 7/22/2014

About the Author

Tracy is a mother of two, with the oldest having X-linked hydrocephalus. This is a rare genetic mutation that causes the fluid in the head to not drain properly. She knew while she was still pregnant with him that he was going to be a very complex and special kid. She had been searching for other kids like hers and in the process she started a blog and a Facebook page to try and use social media to connect with others. Along the way she has come across so many great people with disabilities or people who are caring for someone with disabilities.  She hopes to inspire and help others get through this crazy life through her writing and pictures, so they know they are not alone and that there is hope. Follow their story at http://xlinked1.blogspot.com, or on Facebook at http://www.facebook.com/xlinked1.

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