As many of you probably know I have a special needs son. He has Down’s Syndrome and ADHD among several other diagnoses. He just turned 14 and he is almost as big as I am. Mentally though he is only about the level of a 3 or 4 year old. As frustrating as things can be for me I know that it must be extremely frustrating for him as well.
When he first came to live with us in 2010 I wasn’t prepared, I thought I was, but I wasn’t. I didn’t get any kind of instructions, no special training at all. What I did have was a lot of love and determination to do whatever was right for him.
It was a very hectic and chaotic time those first few weeks. He wouldn’t sleep without medication, which we did not have for the first week or so. He would just run around the house creating mass destruction. Not to mention the fact that his little sister had also been placed with us and she had been diagnosed as emotionally disturbed. She wasn’t even two at the time.
He was not potty trained and he would not tell you when he had soiled or wet his pull up. It took us over a year to fully potty train, we still had and still have times when he refuses, but when he reached the goal of being able to wear ‘real’ underwear the change in him was remarkable. He had gained self confidence and a sense of independence that he had never known before. Even his teachers commented on his new attitude.
He was mostly non verbal at the time also. I bought the Your Baby Can Read Dvds and began to play them everyday. Amazingly his speech began to improve and he began talking more and more everyday. And he hasn’t stopped! He can communicate pretty well now unless you want him to explain why on earth he was playing in the toilet or with cat poop in the play yard.
The placement was only temporary at first. We had good days and we had bad days. The good days were few and far between. The bad days were often really bad and exhausting. I was thankful for every little tip his teachers and doctors were able to give me.
Eventually we started to develop a rhythm. Then he would do something totally unexpected. We knew that he did not sleep well and he had a history of getting up and sneaking out at night. Fortunately he has never tried to sneak out of the house but he has gotten up at night. (We actually installed a cheap alarm on his door that we turn on at night to alert us if he sneaks out of his room.)
There was one night his older sister found him in the kitchen making a ham and cheese sandwich, but he had put horseradish on it instead of mayonnaise. Then another night right before Thanksgiving he had gotten up and decorated all of the pies with blue icing.
When he got accustomed to our routines and when he began to feel safe we started to see improvements. They were slow, very slow, but every bit of progress was so exciting. Then we would have relapses and he would go back to his old ways and behaviors. It was so frustrating. I would often just sit and cry and pray to God for help and guidance. He would touch me and renew my strength and patience each and every night so I could wake up refreshed and ready to face the next set of obstacles.
I read up on every article I could. I talked to the doctors and specialists. I carried a huge notebook around with me everywhere so I could write down everything they told me. I checked out books at the library and took notes. Then I would try out a few ideas and suggestions at a time. If it worked that was great, If it didn’t I just crossed it off and tried again with something new.
I might add a little note here that what works today may not work tomorrow with him. Each day is a new day and he has a toatlly different outlook, personality, and attitude from day to day. So I just kinda have to judge him when he gets up in the morning to see if he needs a hug or if he just needs me to stay away.
I found ways to encourage and motivate him. When everyone said he couldn’t be potty trained I knew he could. I wasn’t trying to prove a point that I was right and they were wrong but rather prove to them that he was capable of more than what they believed he was. They told me I just needed to accept the fact that he would always be in pull ups.
He also hated and still hates loud noises. With that being said he is one of the loudest kids I’ve ever been around. He hums, he sings, he yells, he makes all kinds of noises at all times of the day with no apparent rhyme or reason. Let me get up and turn on my exercise video in another room and he is yelling at me to be quiet.
Normally he stomps through the house making as much noise as possible everywhere he goes. He sounds like a raging elephant unless he is trying to be sneaky. Then he can tiptoe and sneak up on almost anyone.
During that first year we also had another sister placed with us. She had her own set of challenges with being almost blind in one eye from a dog attack, ADHD, and ODD. I know that bringing her into the home helped him feel more secure as he was constantly asking about her but she also required a lot of attention. He did have some major relapses but we eventually worked through them.
His behavior is good most days now.I can remember the first doctor’s appointment I took him too. He was literally climbing the walls. I’m serious, I went straight to Wal-mart and bought one of those monkey backpack leashes for him. Yes, I got a lot of criticism for putting my child on a leash but I’d rather have him safe then be explaining to the paramedics how he ran away in the parking lot.
I can remember several meltdowns in public places when I thought for sure someone would be calling the authorities on me. I remember all of the ‘If that was my child…’ or ‘My kid would never act like that…’ from strangers who didn’t know the situation. I just smiled and sat in the floor with him wrapped in my arms until he calmed down. Then we would finish what we could finish and go home.
This child also loves food. He will wolf down two plates of food before I can finish half of my plate. We have had to work with him to help him slow down his eating so he can digest his food better and to keep him from choking at every meal. There has only been two things I’ve found that he wouldn’t eat, one was the horseradish I mentioned earlier, and the second was a ‘Monkey Milkshake’ his older sister made for him.
I also researched food allergies and sensitivities. I learned a lot by keeping track of his behaviors and checking them with our menus. After a few months I was able to take my notes to the doctor and show them what we had found. The doctor then wrote a note to the school and we had his diet modified. What a difference that made in his behavior!
He was in public school until he transitioned to middle school. He did not like the change and he rebelled in many ways. His new teachers did not know him and his little quirks and no matter how many times I tried to explain things to them or how many notes I wrote they just didn’t ‘get’ him. (Please note that I am not condemning public school and I know the teachers have a lot put on them. It just didn’t work for our family.)
The other problem they had is that he is just so sweet and convincing at times. He was on a modified diet but he would convince the teacher and aides to give him snacks and extras that he was not allowed to have. This resulted in serious issues and he began to get sick every time he went to school. I was picking him up, taking him to the doctor, doctor writing notes, keeping him home until the issues cleared up, sending him back to school, he would get sick again, I would pick him up again and back to the doctor…. it became a vicious cycle and something had to stop..
The last time I took him to the doctor he had lost a significant amount of weight from the diet issues. I had already spoken with her about homeschooling and she agreed that it would probably be the best route for him at that time. So that was his last week at public school. We’ve definitely had our ups and downs trying to get our routine set and getting him to understand that Momma doesn’t take ‘No’ for an answer.
His fine motor skills are not great but we work on that almost every day. When we first started he would absolutely refuse to write anything. He would simply say ‘I can’t’. If that didn’t work he had a pocketful of excuses that worked on the teachers at school.
‘I’m hungry’
‘My stomach hurts’
‘I’m sleepy’
‘I need to go potty’
This last one was a favorite at school. They would send him unsupervised and his older sisters found him several times wandering about the school campus alone. Sometimes the custodians would find him and ride him around the campus on their buggies. There was a time I went to pick him up for an appointment and they couldn’t find him anywhere. I tried my best not to panic but I was scared to death.
Oh, I almost forgot, maybe the favorite excuse was actually pretending he couldn’t hear anyone. I felt it was selective as he could always hear a bag of chips opening two rooms away with the door closed but the teacher insisted he couldn’t hear her. It got so bad that I took him to the doctor and had his hearing checked. I even asked for a referral to a specialist to double check. Not a thing wrong with his hearing. He just had everyone fooled.
He quickly learned that he had to at least try to do what I had asked him to do. Often I would offer a game or puzzle as a reward once he finished a certain amount of work. This was just the encouragement he needed and now most days we can get our work done by alternating ‘work’ with educational videos, games, or puzzles.
He is now reading at about a first grade level. He gets so excited when he reads a whole sentence by himself. This makes me happy because I know there are certain things that he needs to be able to do to be semi-independent. He will soon be an adult and I am not sure what the future will hold for him but I want him to be as prepared as he can be.
We focus on some reading and some basic math. We also do a lot of Life Skills. He can put his clothes in the washer and dryer. He can also fold them and put them away. He does help to prepare simple meals. He is learning to load the dishwasher but I have to supervise or else he will be licking the plates clean. He makes his bed and is responsible for keeping his room straight too.
He can now shower by himself which was a major achievement and he can do most of his basic hygiene routine without prompting. This has helped him to feel more independent. Also it helps me and everyone else as we don’t have to stand and supervise him and we can give him a little privacy. Bath time was at one time a screaming session because the water was too hot, too cold, too wet, etc. It always sounded like a scene out of a horror movie when I needed to wash his hair.
There are things we have had to learn along the way. Every morning I clean the bathrooms and do a quick check through the house. Every person has their own bathroom basket of toiletry items that they can take to the bathroom when they shower. If anyone leaves anything then he will be the one to find it and most likely destroy it. He has also been known to shave his eyebrows.
I learned early on that if there was something out of place then he would find it and it would call his name. I left a cabinet door open on my desk one time and he passed by it as he went to the bathroom. In less than two minutes he had completely taken apart my fax/copier/printer and destroyed it.
He is also obsessive about certain things at times. The toilet paper must be on the roll a certain way or else he just loses it. He will destroy the bathroom in a matter or minutes if someone has turned the roll around.
If we are moving furniture around or rearranging rooms we have to do it when he is outside or asleep. He gets upset to see the room(s) messed up or not in their normal state.
When he is playing he will line up toys, books, or whatever he is playing with in a certain order or sequence that only makes sense to him. If you ask him to clean it up then he has to do it his way and in his own time. He also does this with his socks and shoes… there have been many times when I go in his room to find an odd arrangement of clothing in the floor or on the bed.
Since he has come to be a part of our family I have definitely done many things that I never thought I would do or say. I won’t list them all but they have included things like ‘Don’t lick the wall, the window, the door, etc.’.
Heaven help us all if this child ever had to have stitches because he thinks he is dying when he gets a scratch that bleeds the tiniest bit. If he steps on a sand spur be ready to call 911. When he was in public school he had a small red spot from his flu shot and he made such a big deal about it that they had bandaged up his whole upper arm. Needless to say I freaked out a bit because I was wondering what kind of injury he had sustained at school to warrant such a bandage.
He loves to work on the tablets and the computers. The child who can’t complete his assignments without me standing by his side will be the one playing games on other sites the minute I walk away.
Movies are something that can absolutely capture his attention. He can watch a movie one time and have the whole thing memorized word for word. This is the same kid who can not remember his sight words from five minutes ago.
He loves to be outside, most of the time, except for when he doesn’t. I know that doesn’t make a lot of sense but it would if you knew him. He will whine and ask nonstop to go outside. Then he will want to come right back in saying it is too hot, too cold, too windy, etc.
He is definitely a jokester too. He is constantly knocking on the wall in his room and making us believe someone is at the door. He can also imitate a variety of noises and have us thinking all kinds of crazy things are going on around us.
Sure there will be things that he can’t do but most things he can do just in a different way than others. He has a lot of trouble with buttons, zippers, and ties. That doesn’t keep him from dressing himself as I just try to buy pants with elastic waistbands, pull on shirts, and Velcro shoes. We will continue to work on these things but right now I feel it is best for him to be as independent as possible.
For now we will continue to focus on the things he can do and keep building his self confidence and independence. I will continue to pray for wisdom, guidance, and direction for what we should be doing and how to handle the obstacles that will come along.
If you will also please pray for our family and other families with special needs kids. My day usually starts about 4:00 am with him up singing or yelling, depending on his mood. It just gets busier throughout the day and doesn’t ever really end. Then there are the countless number of doctor visits, trips to specialists, and his least favorite, the dentist. We need everyone’s prayers for strength, health, and patience.
He processes things much differently than you and I do. In other words, he marches to the beat of his own drum. Someone has taught him how to ‘whip’ and ‘nay nay’ so he is dancing and saying ‘watch me whip’, ‘watch me mayonnaise’…. lol… don’t try to argue with him either because he is always right, even when he is wrong.
You can also read the following for more details about our adventures:
Pollywog's Place Blog 