It's Too Loud In Here!

Many people with autism like to be alone. They like quiet. They like calm. They might like some noise but only controlled noise. So, they don’t necessarily want silence and I’m not sure it is even about volume so much. They just don’t want unpredictable noise or chaos. For example, Tate loves music, television, and movies. He even likes surround sound but he NEEDS to be in control of the noise. He needs to be able to walk away if he is feeling overwhelmed. He wants to pick the movie and control the remote. He can feel at ease if he is controlling his environment and is able to predict what is going to happen. Touch, smell, taste, and sight are all a big deal to a kid with autism and I recently addressed some of Tate’s issues with touch. Noises (sound) are also an issue with many kids with autism.

Tonight we went to a restaurant. Ten feet from where Tate was sitting was a crying baby. Now, Tate doesn’t hate babies but Tate was miserable. He squirmed. He complained. He whispered things about babies who cry (whispering to himself is one of his stims). He stuck his fingers deep into his ears. He asked me if I had any headphones. (They use headphones at school to help with the noise level sometimes.) The screaming went on for about ten minutes while the mother ignored her baby. I love babies; but I honestly was beginning to squirm a little myself. Finally, the mother picked the baby up and gave him a bottle. The little guy went right to sleep and we were able to enjoy our meal. I have a friend who has a son with autism who probably couldn’t have lasted the ten minutes. They would have had to leave after just the first cries. Interestingly enough though, I have another friend who has a son with autism and when he goes to a restaurant he, himself, makes a lot of noise. He is non-verbal and one of his stims is to make loud noises. (Remember, autism is a spectrum and people are all over that spectrum.) The same young man who likes to make loud noises? When his baby brother cries he puts his hands over his ears! My theory on this is that he does not like his baby brother’s noises because they are totally out of his control and unpredictable. He needs to be in control of the noise to be able to tolerate it.

Just hangin' out, upside down.

Recently, Tate’s sister and I were in the living room watching a movie that Tate loves. I told him I wanted him to watch it with us. He watched it but he could not relax and really enjoy it. He sat in a hard backed chair behind the couch, instead of on the couch with us, and watched from the dinning room. He could not relax because he was not in control. He was not alone to enjoy the movie and he was not going to be able to pause it if he wanted to, or run it back and watch his favorite parts more than once, or fast forward through the song he did not like. He would have enjoyed the movie so much more if he’d been alone to watch it. When given the choice he will almost always choose to be alone.

Having seven children and belonging to a small, close-knit church family, we have always had a lot of “people traffic” coming through the house. It sometimes gets pretty loud in our home. When he was little, Tate did not hang out in the living area, showing off, and trying to get the attention of the adults as my older children had. He did not run off to play with the other children. He usually snuck off to my room, climbed into my bed to watch television, and wait for everyone to leave. I’d find him and invite him to be a part of our gathering, but know that he would not be coming out until the noise level was back down to his liking.

Tonight when the baby was crying, I was not only feeling a little stressed from hearing it myself, but I was watching Tate squirm and I was feeling stressed because he was stressed. I try hard to make his world “autism friendly” while at the same time challenging him to step out of his comfort zone and make his world a little bit bigger. It’s a fine line. I am usually guilty of staying far inside his boundaries to keep him happy but once in a while I drag him too far across the line and feel terrible about it. Sometimes it does pay off though. Sometimes, instead of a meltdown and huge amounts of anxiety, that lead to nothing but more anxiety, we get growth.

Going through a carwash was out of the question a few years ago. The noise terrified Tate. Now they are very doable. Tate still becomes a little nervous, probably because of the noise, but he loves watching the soapsuds cascade down the windshield. Smoke detectors at home and fire drills at school are no longer things that send him into a panic. Fireworks are another example of progress made. When Tate was young, a fireworks show would drive him over the edge. On the fourth of July, his siblings would have a great time with their dad out in the yard lighting fireworks. Tate would be inside in my bed hiding under blankets while I tried to soothe him. We did not stop celebrating the fourth or make our older kids go somewhere else to light their fireworks. Although we are very considerate of Tate’s disability and his sensory issues, it cannot ALWAYS be about Tate. We do have six other kids who need parents too. Surprise! Somewhere around age six or seven, Tate decided fireworks were pretty cool. Now he looks very forward each year to those loud pops and booms. He still watches and listens with his fingers in his ears but he enjoys the lights and noise quite a bit. He’s really livin’ on the edge now, huh?

Note: Most children with autism have Sensory Processing Disorder (SPD) and I will be writing more about Tate’s sensory issues in the near future. I recently wrote a blog post entitled “Don’t Touch My Skin” about his aversion to touch that you might find interesting.

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An IEP Tutorial: 13 Tips

The Individualized Education Program (IEP) process can be daunting. I was very intimidated those first few years. I have been in some very tense meetings with less than desirable outcomes and I have been in some very relaxed meetings where everyone left with smiles. I have learned a lot and no longer feel sick before I go to those meetings these days. I have some words of wisdom for you if you are still struggling with anxiety before you go to those awful IEP meetings. Following are my tips. The first few are pretty basic and you’ve probably heard some of these before. But the bottom half of the list are things that are a little more unique I think. Hopefully, you can learn from my experiences and some of my mistakes and successes.

1. This is very important: Never go alone. Hire an advocate long before the first IEP meeting so that the advocate has time to get to know your child and his/her needs and the two of you have time to go over goals. I was so lucky because my son had a Board Certified Behavior Analyst working with him. She knew him very well and has come to almost every IEP meeting since he was five. There were many times when I did not know what to ask for or did not understand some of the jargon but our advocate did and my son has benefitted greatly from her expertise. If you absolutely cannot afford an advocate then find SOMEONE (even another parent who has already been through the IEP process and has some experience) to go with you so you and your spouse are not alone. An advocate can be intimidating (without being scary) and can make a lot of difference in how the IEP looks at the end of the meeting.

Tate with Dad's glasses and laptop

2. Educate yourself about the IEP process. Before you go to your first IEP meeting read a book about the process and your rights. I recommend the Wright’s Law books. This is doubly important to the parent who does not bring an advocate with them.

3. Be on time. It looks pretty bad when mom and dad walk in late. I usually try to be early. Because, in our first IEP experiences, meetings sometimes started late (due to missing equipment or people) and I had complained, I did not want to be the one who caused our meeting to be delayed. One time I actually had to rearrange furniture for a meeting; then wipe glue and glitter off the table we were to use before our meeting could begin. Every minute of the meeting is valuable. Sometimes substitute teachers have been hired so your kid’s teacher can be there.  

4. Do NOT let anyone rush the IEP process. If enough time was not allotted for the meeting then you can ask for another meeting. You have the right to call an IEP meeting yourself anytime you want one. Put your request in writing though because if it is not in writing then it never happened. My kids’ schools used to schedule one hour for our meeting, ninety minutes if I was lucky. We never got finished in that amount of time. Apparently, some IEP meetings only require one hour but teachers have told me some parents go into the meetings accepting what they are offered and giving little or no input. Don’t be that parent. You need enough time to ask questions, get the answers, and help plan the IEP. You know your child better than the teachers do.  

5. You may be hoping for the best but you need to prepare for the worst. Take off your rose-colored glasses but don’t wear your boxing gloves into the meeting either. Keep them hidden just in case you need them but don’t go in ready for a fight. Sometimes things go bad quickly and unexpectedly. My son started at a small rural school where I knew almost every teacher and staff member very well and considered most my friends. I never dreamed we would have any problems coming to an agreement over what my son’s IEP should entail. I was wrong. It only takes one person on the IEP team sometimes to stand in the way of progress. Your goal is not to intimidate anyone so behave humbly and keep a smile on your face if at all possible. Be friendly. Be nice. Be sweet. Be kind. Set a dish of chocolate in the center of the table. Compliment everyone. THEN if you cannot catch your flies with sugar, bring out the vinegar.

6. Go into the meeting with a list of goals you would like to see on your child’s IEP. The school representative will be bringing their own list of goals, and probably even a rough draft of what they want the IEP to look like. The Office of Special Education Programs (OSEP), which is part of the Department of Education, discourages schools from bringing draft IEPs into the IEP meeting but IDEA is silent on this. Coming up with a draft IEP before involving parents is mind boggling to me but it is common practice. You can find sample goals online or in the Wright’s Law books. And… IDEA does not limit the number of goals an IEP can have. I once took ten or twelve tentative goals to an IEP meeting and was told that the school typically only allowed three goals on an IEP. Don’t believe it folks. Your child is there to make progress. Set your expectations high.

7. Have your questions written down and take them with you. You don’t want to walk out of there and later remember all the things you did not talk about. It is important to ask things like, “How much and what kind of training will the para professionals have?” IDEA says that para professionals are to have ongoing education throughout the year. Sometimes that does not happen. Ask about lunch and recess. Ask who will have access to your child’s IEP. Privacy laws are strict and your child’s diagnosis or IEP may not be shared with all the people who work with your child. Initially, my child’s diagnosis and IEP were not shared with substitute teachers or specials (Music, PE, Art, Library) teachers. That was unacceptable. My son needed accommodations and modifications for many activities. He also needed help during fire drills, tornado drills… Protecting a child’s privacy at the expense of keeping them safe and educating them is ridiculous in my mind. Now we have to put it in the IEP that everyone is to be told. I actually try to make sure that even the janitors, secretary, the cafeteria staff, and bus drivers are told about my children’s disabilities. If it really “takes a village” then the villagers ought to be given a clue about their little charges.

8. Remember that the I in IEP stands for Individual. There may be very specific anxieties or behaviors that are unique to your child that should be addressed in the IEP. If your child does not communicate well then you need to ask for insist on a note coming home every afternoon telling about his/her day and answering some routine questions about their behaviors… If your child has dietary needs then those should be listed in the IEP… Social skills training might need to be a part of the IEP. Don’t let the school push you into signing a standard IEP with goals recycled from the last student who had a similar disability.

9. Take notes during the meeting or bring someone with you to take notes. Do not rely solely on the notes taken by the staff. I once got my son’s IEP in the mail and was blown away. It looked nothing like the IEP we had discussed and I had the notes to prove it. The school note taker will probably ask you to sign their notes. Don’t be afraid to ask them to sign yours as well. You might even want to exchange copies of notes before you leave the building.

10. Usually we accentuate the positives but not today. The IEP meeting is not the best time to boast about your child’s strengths and progress. The child’s strengths are mentioned on the IEP and that is enough. The IEP meeting is a time to examine your child’s weaknesses under a microscope and try to collaborate on how to help him/her make progress. Do not minimize your child’s sensory needs, behavioral issues, physical disability, social skills deficits, or academic limitations. The school psychologist and the others on the team may come prepared to talk up the progress and give your child a very limited amount of services. Don’t get caught in that trap.

11. You cannot make it about the money. The school may try to make it about the expense of the services your child needs but the law says that your child is to receive an “appropriate education.” Parents sometimes hear, “We don’t have that available” or “There is only one O.T. in our district and she has to serve the needs of all the kids that need O.T.” Here’s the thing: If a hundred kids need occupational therapy (for example) and the occupational therapist is spread too thin then the district SHOULD hire another O.T. but instead they often suddenly decide to graduate a bunch of kids right out of their occupational therapy sessions. It all boils down to money. Don't let your kid be the one that is pushed out of services they need. 

Science Experiment, Tate was in 3rd grade

12. Don’t be pressured or tricked into doing something you do not want to do. A lot of these educators have been doing this a long time. Most are honest and want what is best for your child. Some are not. I learned early on that when I heard the words, "promoting independence" or "facilitating independence" come from someone on the IEP team it meant that I was about to be told that they wanted to pull support for an activity or a class that my child currently had support for. Facilitating independence; Yeah, right. Call it what you want. It still meant my kid was going to be without support and floundering on his own. If you are surprised to hear that your child suddenly seems to make enough progress so he will lose para support for an hour, it could be that the school is struggling to find enough paras or the money to hire them. Make sure you do not agree to “facilitate independence” unless you are sure your child is ready for that. BEFORE you sign off on it, go and observe. Send your advocate to observe. Learn from one of the biggest mistakes I made early on in this game... No matter how many times you hear, “We can always add the support back in,” know this: you will have to fight tooth and nail to get back anything you let them take away. AND, you may not succeed. The goal for all of us is independence but don’t ask a fish to climb a tree! Some kids will achieve independence and some won’t. Asking a kid who is not ready or able to do the things they cannot do is cruel. If you feel pressured to sign something or make an amendment to the IEP, tell them you need a couple of days to think about it.

13. The squeaky wheel gets the grease. I hear it all the time. Other parents have asked me why my kid has more services than their kid or how I was able to get full support for my son. I first point to the advocate we have (Tip #1). Then I tell them that they have to make a lot of noise. For four long years I wrote complaint letters, sat in the principal’s office, made phone calls, took notes, and made a lot of noise. I also gave gifts, sent cards, volunteered in classrooms, bought school supplies and other things the school needed, and was very visible at the school. I can hardly believe it but some parents meekly take the services the school offer and ask for nothing more. They do not get involved or ask questions. I suppose that there are some wonderful schools out there where all the staff does what is best for all the special needs students. ?? I love my kids’ schools. I love my kids’ teachers. I love my kids’ therapists. I am happy with my kids’ IEPs and the services they are receiving currently. It took a long time and a lot of noise to get here.

If you enjoyed this post, you might also like 15 Truths of Parenting Special Needs Kids. 

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Losing Language and Finding It

Tate developed language at a young age and spoke in complete sentences, and later lost it. I’ve told that story in other blog posts but I’ll give a quick review. When we began ABA therapy and discrete trial training, Tate was a little older than two and a half. At that time, Tate could still label almost anything but he could no longer speak in sentences. It seemed that when autism stole his ability to communicate, it was selective and it left him with a lot of nouns and a few verbs but no adjectives. He spoke with one word at a time. When he wanted a drink, he no longer said, “Can I have more milk?” but instead he just said, “milk.”

Tate, age 3

Now, this is the really interesting part: Some of his nouns were replaced by other words. The word umbrella was no longer “umbrella” like it used to be when he wanted to play with one, but it was changed to “rain.” The word “broom” was now “sweeping.” Sometimes he could use a phrase, and seemed to be using adjectives, but he really used the phrase as one word. For example, “wolf” was never just “wolf” but was now always, “big-bad-wolf.” The big and bad were not really used to describe the wolf but all three words used together were his label or his noun. It seemed like the autism scrambled his way of thinking. Tate could only think in very concrete thoughts. He was left with absolutely no ability to converse.

Because Tate was our sixth child I knew that most young children do not use pronouns correctly. Tate had amazed us at a very young age by using pronouns exactly as he should. He was able to say, “I want” instead of the “me want” that many small children use. I used to point that out to people so proudly and wonder why he was different than the other kids had been. I am absolutely sure that he could speak in four and five word sentences before he lost language. He could say, “Come, change my diaper” and “I stink” around age two, using the pronouns correctly. And then. It was gone.

As a baby, Tate had picked up pronouns from his environment. I did not spend huge amounts of time teaching him the correct way to speak. An eighteen-month old Tate could say, “I want” but a nearly three-year-old Tate usually said, “Tate wants.” Why was he in tune enough as a baby and toddler to pick up language but unable to learn from his surroundings as a preschooler without intense effort on his part and mine? Where did the pronouns, verbs and adjectives that he had learned previously go? He had to be taught again using systematic lessons. We had to go back to the beginning and start over. 

During the first ABA sessions, the teacher used very simple commands. She did not usually use more than four or five word sentences when she spoke to Tate. She did not use adjectives when giving him instruction. Because Tate’s receptive language was in the twelve-to-fifteen month range by this time, we had to communicate with few words. The more words used in a sentence, the less Tate got out of the sentence. During the discrete trials the commands were, “Do this” or “Build like this” or “give me” or “show me.” This seemed strange to me in a way. We were trying to build his vocabulary, not limit it. I remember telling the therapist, “But he could say, ‘this is delicious’ when he was just a baby and now he can barely talk!” I wondered why we weren’t trying harder to add words instead of limit them.

This was the answer I was given: We were going to build Tate’s expressive language by having him repeat sentences adding one new word each time. For example, when Tate said, “want milk,” I would say “want milk please.” Tate had to repeat my words before he got the milk. After he repeated my words, and as I was handing him his cup, I would say, “I want milk please.” This time he was not required to repeat my sentence but he usually did. We used this technique constantly. He started using real sentences and they began to lengthen. When Tate labeled something, then I repeated the word with an adjective or a verb attached. If he said, “truck” then I said, “big truck.” If he said, “frog” then I said, “green frog.”  This went on all day long every day of the week. Tate regained adjectives, verbs and adverbs. The progress was amazing. Sometimes we stalled for days but other times he added words by the dozens.

Some days were huge for us. Right after Tate’s third birthday in October, I took Levi and Tate out to lunch. Tate marched right up to the counter, looked at the woman taking orders and announced, “I want a cheeseburger please.” I nearly cried for joy. There was a day soon after when we were riding in the car and Tate called my attention to a school bus in the lane next to our car. Tate rarely called my attention to anything so I was shocked. He had never mastered joint attention, even before his regression. The bus was a yellow van. Tate was used to seeing the long buses that his siblings rode so he was confused by the size of the bus. He said, “Look Mom, a little bus.” We had been working that week on big and little and it was clearly getting through. He was generalizing what he had learned at the table. At that time we had only been doing our forty hours of discrete trial a week for about four months. And this is why I so strongly believe in ABA therapy and discrete trial training. Tate was regaining language almost as fast as he had lost it.

I should probably be clear about something because this comes up a lot. Some of you always want to know: Did Tate develop autism at age two? Is that why he lost his language? Tate already had autism. He was born with it. I know this. He had a lot of quirky behavior before he lost his language. He may have had such a huge vocabulary BECAUSE he had autism. I don’t know how autism works. Some kids never gain language. Some kids get it and lose it. Tate’s regression is common in children with autism. I don’t believe his shots at eighteen months caused autism. I didn’t drop him on his head at age two and cause the autism. There was no tragic event in his life. Tate was “different” from day one. I didn’t know what it was called or why he was different but he was different long before he spoke his first word and long before he lost the words.

Other posts about language: What brought you here? and Speaking Tate's Language

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You can stop talking now.

My husband is a heating and air conditioning contractor who runs his own business. But, more importantly, he is a Church of Christ minister and has been preaching at our small congregation for 25 years with the exception of about eighteen months that coincided with Sydney’s adoption and the beginning of Tate’s intensive early intervention. So, our kids have all grown up as preacher’s kids. I say that to set up the stories I have to tell you today.

"Scram. Beat it."

When our oldest son was just a toddler, one Sunday he was standing at the back of the building with me as everyone was exiting. We were usually the last to leave, making sure to speak to every member. I guess this particular day our little guy had been tickled, teased, and patted on the head all he could stand. He’d had enough. As the last of the crowd thinned, and it became very quiet in the back, an elderly lady bent down to speak to our sweet, angelic, precious, little guy and he responded with a growling, “Scram. Beat it.” She was shocked; and she straightened up giving me a polite smile and a nervous laugh. I was horrified and apologized to her while probably turning every shade of red a human can turn. We, of course, lectured our little guy on the way home and his daddy spanked him for being so rude. I knew exactly where the offensive phrase had come from, as Oscar the Grouch was our child’s favorite Sesame Street character.  As awful as that seemed to me on the day it happened, I have come to love telling this story and have shared it with lots of people over the years. “Scram, beat it” has become sort of a term of endearment to me and as the kids get out of the car for school, I often say, “Have a good day. Now, scram, beat it.”

Fast-forward 24 years and several children later. Wednesday evening I was walking down the stairs of the same church building to teach Bible class. I heard Sydney several feet ahead of me, in her best teacher voice, say, “Tate! Don’t be so rude!” I also heard a laugh from an adult in the same vicinity at the same time; not the kind of laugh that comes from hearing a good joke, mind you, but the kind of laugh that comes from someone when they don’t know what to say or how to respond. Let me insert here that our church family is so very understanding of Tate’s lack of social skills. They do not make him feel badly (or his family feel badly) when he is less than friendly, ever. On top of that they go out of their way to help us watch out for him (and Sydney too) always trying to speak to him so they help him practice his social skills. Now, back to the story: I caught up to my two “angels” in our classroom I was barraged with Sydney’s NEED to tattle and Tate’s desire to keep me in the dark. They each got louder and louder trying to drown out the other one. I stopped them both by speaking quietly. It is an amazing thing I have learned. When kids are yelling, they get quiet a whole lot faster if you speak softly than if you holler back. I asked Tate if he would like to tell me what he had said that was rude. He said he would not. So I asked Sydney to go ahead and tell me. This resulted in both talking loudly at the same time again. I wish I could film this sometime because it really is quite comical and is becoming a frequent part of our lives now. Sydney began talking and could only get out one or two words at a time while Tate was interrupting the whole time with, “No. No. No. We don’t want to hear. No. Hey! Hey! No! Stop talking! Quit. Be quiet. No! Our mom does not want to hear this.” Somehow, I was able to decipher. I think. As they were going down to class a grown up had asked Tate a question, trying to strike up a conversation. Instead of answering politely, Tate had a “scram, beat it,” moment. He told the grown up who had tried to speak to him, “You can stop talking now.” Was I horrified? Yes. Yes, I was, but knowing that we were amongst Christian friends who understood made it much less horrifying. I used the first part of our Bible class to discuss manners and hope it did some good. Hope is the key word. I keep trying but autism is so much bigger and stronger than my lessons on courtesy and social skills sometimes.

I’ve been thinking a lot about these two instances since Wednesday evening. They were 25 years apart, one with a toddler and one with a young man taller than myself. If I allowed myself to, I could become quite depressed that I am still trying to teach lessons to my 12 year old that he should have learned as a preschooler. Instead I will choose to find the humor, be glad that we have understanding friends, and keep hammering away at the rude behaviors.

Tate and Sydney

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My 15 truths of parenting special kids

1. Parenting a special needs kid does not make you super hero. I seem to have given some of you the wrong impression. I am not supermom, not even close. I rarely cook anymore. Most of the time we all eat different foods at different times, especially in the summer months. I don’t spend enough one-on-one time with any of the kids. I lose my patience and raise my voice occasionally. I feel really successful on the days I keep the laundry done, the house fairly clean, and the kids happy.

2. Parents of special needs kids have a lot of insecurities. Sometimes I don’t know what to do. I’m winging it here. Oh, I’ve tried to read all the right books and surround myself with people who can advise me about my kids’ disabilities but I’m the one who makes the ultimate decisions and sometimes I do not know what the right decisions are. These disabilities are spectrum disorders. There is no one treatment or therapy that works best for all kids with special needs. What if I do the wrong things? What if I miss the things that would have helped them the most? What if I mess this up? Even though we have insecurities, I still believe #3 to be true.

They are so easy to love!

3. (In spite of #2), Parents of special needs kids are experts… on their own kids. I could never claim to be an expert on autism, Fetal Alcohol Syndrome, or ADHD, but I do know Tate and Sydney really well. When a teacher or doctor tries to tell me what is best for my kids instead of asking me to collaborate about what is best for them, we will not make any progress. Spending short amounts of time with a special needs kid cannot begin to compare with the investment the parents have made. Parents of special needs kids want to be asked, not told, how to best interact with their child because WE are the experts.

4. Parents of special needs kids like to talk about their kids… a lot. Something seems to happen to women when they give birth. The number one topic of conversation is no longer clothing, hair products, recipes, or movies. The conversation now revolves around their child. Parents of special needs kids are no different. However, we tend to flock together and talk about our kids' disabilities and therapies and their school situations. I tend to turn almost every conversation I have with anyone, anywhere, anytime, into a conversation about autism or ADHD. I cannot seem to help myself. I am sorry, friends.  

5. Parenting special needs kids is sometimes lonely. I am lucky in that I got to do this five times with typically developing children. But in some ways that may make it a bit harder because I know all the things my special kids and I are missing out on.

6. Parenting special needs kids can be exhausting. Yeah, I know; all parents are tired. Remember I did this with five typically developing kids. I know the difference between being tired and being exhausted. It’s not just the physical rest that we sometimes give up. There is so much stress. A disability often taxes a family emotionally. Typically developing kids grow up. They learn to do things for themselves. They eventually leave home. Think about it. Now, are you really THAT tired? I’m really THAT tired. Really.

7. Many parents of special needs kids hope for the best but prepare for the worst. We know where all the exits are, carry a bag of emergency supplies, and have a plan B in place at all times. There are these things called meltdowns. They may look like temper tantrums to you but they are not comparable at all. Meltdowns are not usually triggered by anger but are from anxiety or sensory issues. Meltdowns are not something a child can really control easily. Meltdowns can ruin a gathering. Hoping for the best and preparing for the worst also applies to the long-term as well. Parents of special needs kids have to have very flexible plans for their children’s future as adults. Many of these special kids will never “grow up.”  

8. Special needs children are expensive. They require therapies, doctors, medications, and schools that typically developing children do not. One of the things we hear a lot is, “You get help with all of that right?” I always want to laugh. Just who is supposed to be helping us? The federal government? The state? The insurance company? Who? We mortgage our homes. We take out loans. We work extra jobs. We do without things. We use our savings and our retirement accounts. Parents of special needs kids are often deep in debt.

9. Parents of special needs kids hurt when their kids hurt. Sometimes our kids have to do really hard things, academically, physically, or mentally. And we just have to watch, hands tied, while they struggle. Sometimes our kids’ pain, anxieties, and fears are incapacitating and there is nothing we can do to relieve them. Sometimes when I watch Tate pace, wringing his hands, or even breaking out in hives, because he is fearful of what lies ahead, I become physically ill myself. 

10. Parents of special needs kids need encouragement, not pity. We are proud of our kids. We celebrate smaller milestones than you will for your kids but they are just as precious to us. We love our special kids just as much as you love your kids. We do not often feel sorry for ourselves. We are not ashamed. An encouraging word means so much to us, probably more than you will ever know. 

11. (Similar to #10) Parents of special needs kids hear a lot of clichés. “Everything happens for a reason” and “God only gives special kids to special people” are two that I hear the most. Neither of these things is even true! Think about it. If everything happens for a reason then children are abused for reasons. Cancer has a purpose. The second cliché is no better. Lots of special needs kids are born into families that hurt them instead of help them. I hate clichés. I’d rather hear, “I prayed for you today” or “Your kids are sure making great progress.”

12. Sometimes, once in a while, there are a few of us, not many mind you, but a few of us parents, who feel guilty. What if I had not taken that cough syrup while I was pregnant? What if I had not used all those cleaning products while I was pregnant? What if we had started the early intervention sooner? What if we had tried harder and done more therapies? Sometimes we think about these kinds of things…. but mostly we don’t.

13. Sometimes parents with special needs kids are defensive. There are reasons for it. Some of us have had a few really bad past experiences with our kids’ peers, other parents, and teachers. We have learned from past incidents that not all children or adults are kind to us. We are hoping it won’t happen again but know we need to be prepared. Also, we know people are watching us, and our kids. We are different and we know it.

14. Despite #13, Parents of special needs kids are approachable. We WANT to spread awareness about our child’s disability. Ask us your questions. We will answer them. We would much rather explain the how and why than have you guessing and misunderstanding. Don’t stare but come over and ask us what you want to know. Remember #4, we love to talk about our kids just like you do and we don’t bite. Our kids don’t either (usually.)

Riding the train at the zoo

15. Parenting a special needs kid is rewarding, more so than anything I’ve ever done. The small things are often huge in our worlds. The things we learn from our kids and their struggles could never be taught using any other method. I had heard it before I had my own special kids: “He has taught me more than I could have possibly taught him.” I used to wonder what that could really mean, imagined that I might know; but I did not. I’m not sure anyone could understand without walking in the shoes we walk in. It’s life lessons we learn. It’s compassion, patience, joy, and empathy on a level that no one could have ever described to me before I became a parent to a special needs child. 

Note: This blog post has done so well I decided to try another similar to it. Click to read "An IEP Tutorial: 13 Tips." 

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