Special Needs Moms

EXPERIENCE CAN BE THE BEST TEACHER

If you are a special needs mom, then you know what it is like to have extraordinary experiences with your child. It can either be something miraculous that your child did, or something outrageous in public! We all love our kids, more than any human being can understand! Sometimes, however, there can be "those times."

Talking about these frustrating times is healthy. Venting to people who haven't experienced being a special needs mom is often futile because they just don't get it. Let me start off with an example from my life with Ian. For the record - Ian has moderate cerebral palsy with "autistic tendencies" and rather severe behavioral disorders. Our entire family had just been through a training program with the behavioral specialist with the county school system. We all learned the "basket hold," a restraint position used when dealing with behaviors.

Not long after our training session, his sister and I took him to see a movie that he had been very anxious to see. He seemed just fine and happy.....and was sitting in the seat next to me on the end of the row. All of a sudden, out of the blue, he reached over and grabbed my hair with both hands. Because of the CP his grip is extremely rigid, so I couldn't easily pry open his hands. He was screaming and squealing, and I was having my hair ripped out of my head. I got up to leave, and walked out of the theater with his hands still latched onto my head. Once we got into the hallway, he went wild and I had to carry him on my hip out into the parking lot, his hands still firmly embedded in my hair.

The behavioral rep for the school system had given me his business card. On the back of the card was a note advising that if anyone sees this parent doing an unusual restraint with a child, not to be alarmed. It is a basket hold, and the parent has been trained in using this restraint, and it causes the child no harm.

This just happened to be just about a week after some woman had been caught on a surveillance camera roughing up her child in the back seat of her car. While I was struggling to get to my van, my mind raced to those images on the TV screen - and I couldn't help but worry that I would be on surveillance video in the parking lot. How would I be able to explain my bizarre position? With my child screaming and squealing would I look like a kidnapper? or worse? By the time I got Ian to the car, I was a wreck. I managed to get his hands out of my hair, and put him into his seat.

He was fine. He had won the battle. All he really wanted was to go home - and that's exactly where I took him. But I wasn't fine. My scalp was throbbing, and I was mad at myself for not putting him in the wheelchair.

What did I learn from this episode? After going over everything from the time we sat down in the theater, I realized that something in the movie had frightened Ian. Just before his outburst, I had noticed that he was startled by a character suddenly popping into a scene. He jumped in his seat. Moments after that he reacted violently.
Ian does not like change (an autistic characteristic), and he doesn't like being afraid in the dark. I believe that both of these factors contributed to his outburst.

Learning to read your child can save hours of unnecessary rampages. Using distraction with a lot of wisdom can prevent a lot of trouble. Unfortunately, I can no longer take Ian to the movie theater because he remembers that first outburst, thinking it was funny. He will try to recreate the scene every time. So, I've had to ban him from going to the movies until he is able to behave properly.

COULD HAVE BEEN AN ANGEL!

Last year at Walmart we had another one of those experiences - and this time he was in a store wheelchair. He was bucking and kicking, spitting, screaming and pulling hair of anybody who walked by. Dozens of people just stood there watching as I struggled to calm him down. Both of my arms were bleeding from him digging in his fingernails, but still, nobody offered to help. FINALLY (and I do mean FINALLY) a nice young man came from out of nowhere and offered to help me. He began to talk to Ian, and got him calmed down. I think by the time we left that store I was hiding under my coat. Such a humiliating experience - but it is just amazing how no one will step forward and help.
It's like they are all afraid, or standing in judgment. And that man who helped - looking back on it - I think he might have been an angel. When I turned to thank him, he had vanished, literally. Couldn't find him anywhere!

WHERE DO YOU GET THE STRENGTH?

The Apostle Paul once said that "God's grace is sufficient." He was right - that is, if you believe that "He is, and that He is the rewarder of them that diligently seek Him."

In my case - I just so happen to have this horrible, nagging, chronic condition known as fibromyalgia. I also battle with chronic fatigue, which accompanies fibromyalgia. So, life with my special needs son can be extremely taxing on me physically. There have been times that it has taken every ounce of energy and will just to get him dressed and off to school - not to mention the rough times.

However, I have learned one big lesson after 13 years of this. If you will stop, breathe deeply and ask God to give you the strength, He will. Just let go of your frustrations and pain, and allow the Holy Spirit to exchange your weakness for His strength. You will be amazed at the difference.

Now, I have to admit that I haven't always practiced this. The circumstances sometimes don't allow much time to breathe. But, when I have taken the time, it has been well worth it. God's grace is alway available. We just sometimes have a problem receiving it!!!!!

IT'S THE TERRIBLE TEENS!

I don't know about you, but if you have a teen with pretty extreme behavioral issues and OCD, it can be like running around after a 130 pound two year old. Same dangers, same destruction. In our case Ian has moderate cerebral palsy and has no bladder or bowel control - so when you add this to the equation, there is never a dull moment. He started puberty at age 10, but still has no clue what it is all about. That is something we have to hold off on because Ian tends to find humor in everything - and he will take anything you tell him, and find a way to make it funny, even if it means repeating inappropriate things at school or in the middle of a store. He has finally stopped watching "baby shows" like Barney and Blues Clues in favor of Sponge Bob and Back At The Barnyard. An example of Ian's humor - after watching Back At The Barnyard, he went into our room to his dad, who was still asleep. Ian took both hands and put them on his dad's side, and started opening and closing his fists. This, of course, woke his dad from a sound sleep, and shocked, he asked Ian what he was doing. Ian proceeded to tell him that he was milking him - like a cow!

Well, this was absolutely hysterical at the time. The male "cow" in Back At The Barnyard has udders, which is wrong. Bulls don't have udders. However, I am just terrified that Ian will say the same thing to his female teachers or students at school - and there I will be, in an emergency IEP meeting, trying to explain why my son is suddenly asking to milk his friends and teachers. Not exactly a good thing.

He has done a whole lot of outrageous things at school, similar to the milking incident. The older he gets, the bolder he gets, especially when he thinks that something is funny. I'll share more as we go along!

WHY ME, LORD?

How many times have we asked the Lord this question? I go through periods when I stop asking, but then there are times (usually the tough times) when I find myself crying out to the Lord, "What have I done?" or "Why hasn't he received his healing after so, so many have prayed for him?" As for me, I cut my teeth on Word of Faith teachings, so I know about believing the word, confessing the word, and praying the word. For seasons of my life I have walked in divine health. I have seen many, many of God's miracles performed in front of my eyes. But, all of that does not necessarily prepare you for the challenge of raising a special needs child.

Two weeks before Ian's birth the Lord spoke clearly to me, "The greatest attack is at the birth, but do not be afraid." Now, in my state of oblivion (which usually happens in the ninth month of pregnancy) I just happily received the word, but thought it must have to do with the spiritual birth of a ministry I was preparing at the time. Honestly, it never dawned on me that it could be about child birth!

Long story short (for now) - I went into the hospital to have labor induced. When it didn't work, the doctor broke my water - and Ian must not have been ready to be born. He went into distress, but it was undetected by the nurse because the monitor belt had slipped. So, he had been in distress for a while before the nurse checked me. By the time the doctor got there, his heart rate was dropping drastically. They did an emergency C-Section on me, and the doctor reported that he was limp (lifeless), and the respiratory team went to work on him. At three minutes his apgar score was 0.

Now, I was oblivious to all of it. While the doctor was calling my son "dead," I found myself quoting Psalm 118:17, "He (I) shall not die, but live, and declare the works of the LORD." I continued praying, telling the Lord that this was not supposed to be happening, and asking Him if He was going to raise him from the dead. At that moment (exactly) the technicians declared that they got a pulse! Ian was alive.

For three days he had constant seizures. Rob (my husband) was on the phone calling ministry associates all over the world, asking for prayer. Then, on that Sunday, the seizures were controlled. We all knew that it was done. We were full of thanksgiving and great faith for the future of our son.

From a clinical perspective: Ian was diagnosed with moderate cerebral palsy, and later diagnosed with autistic tendencies (Obsessive Compulsive Disorder, among others). He can walk (although he wobbles and tends to lose his balance), but he has limited fine motor skills. (He cannot write, but he can use a computer.) He is very verbal, and tends to squeal and scream when emotional (which limits our ability to take him in public). He has limited control of his bodily functions, so he wears pullups.

It is almost 14 years later, and those first days of great faith seem very distant. But, it is good to look back on them and remember the great work of the Lord. The same God Who was there to breathe life into my son's lifeless body is still here today to breathe life into my worn out physique.

When I ask Him why, He tells me that it is for His glory. (See John 9). This is a journey, but it is not one that we need to take alone. We need to encourage one another, pray for one another and exchange our weakness for His strength. "I can do ALL things through Christ Who strengthens me."

I encourage all to share your stories, your struggles and your needs. We are here both to give and to receive.