Man Sized Jumps

There are so many developmental milestones that Tate did not reach on time. Many of them I noticed, but some I never even missed. Being an experienced mother I am sometimes shocked at some of the ones I let slide by without wondering about. Once in a while Tate will do something that he has never done before and I’ll think, “WOW! This is huge (several years late, but so cool)!” About a month ago, Tate started jumping from the second step on the staircase, skipping the bottom step. My other kids did this long before kindergarten. Tate is twelve years old and six feet, two inches tall. This is one of those activities that I waited for but it just never developed. Levi is only three years older than Tate, and Sydney is two years younger, so they were often jumping off of steps, small retaining walls, the porch, and many other things. I tried to teach Tate to jump many times but he just could not do it. He could “sort of” jump if he was on a flat surface, no drop involved, but even then one of his feet always followed the other so that it was a hop or a skip and not really a jump.

My other kids would holler, “look at me!” or “watch me mommy!” as they jumped off of things or ran through the house and jumped over things. There’s that joint attention that I often talk about, once again. Tate never wanted my attention in the way a typically developing child would, so he never asked me to watch him do anything. But truthfully, there was not a lot of excitement going on in his world to watch. Don’t misunderstand. I am head over heels in love with my guy Tate and he did not have to “do” anything to impress me. I spent more time with him than any of the other children, teaching him things, helping him with things, trying to pull him out of his private world constantly. He mostly wanted to sit and stim or stare at something. And now, I’m off topic again…  This post is about why Tate did not jump, not about why he did not ask me to watch him jump.  (See: Look What I Can Do!)

I believe that Tate has found it so hard to jump for the same reason he struggles with many things. It is called spatial awareness. Have you ever had your arms really full and tried to walk down steps without being able to hang on to a rail or to see exactly where your feet are? It can be a little uncomfortable. Have you ever missed the bottom step because you miscounted? Maybe you thought there was one more step but you were at the bottom already? Or you thought you were at the bottom but there was one more step there? That awful feeling you get when you cannot tell exactly where your foot is or if you are going to fall or not is probably an approximation of what Tate felt for years just walking up and down the stairs. It took him a very long time to be able to walk up or down stairs without a tight grip on a railing. He would walk up one step at a time, bringing both feet on to the step but never alternating feet and climbing stairs quickly as his peers did. Finally, long after he should have, he mastered the stairs. 

Tate does not balance well. Like many people with autism, Tate needs both feet firmly on the ground in order to feel safe. He has a really hard time feeling comfortable if he is leaning back or standing on one foot. Remember my last post about his first trip to the dentist? Lying back in the chair that moved was so frightening to him. We had to practice at home. Here's the link to that post.

Why has Tate suddenly started jumping? It probably has a lot to do with the development of some of that spatial awareness lately. Remember the bike camp I have talked about? He learned to ride a bike this summer! (See the link here.) I think the bike riding may have taught him a lot about spatial awareness. He can balance on the bike and has gotten so much more confident surefooted across the board. After Tate started jumping off the stairs it wasn’t long until he was jumping into the pool. I had all but given up on that ever happening! Big things are happening at our house. They may be baby steps at your house but they are man-sized jumps in ours, literally.

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Cleaning, Filling, and Straightening the Teeth of Autism

Going to the dentist can be very stressful for people with autism. The noises and smells, the poking and prodding, the bright lights that shine in your face, while you are tipped back in a chair that changes heights, can all be over stimulating for sure. We went this week and Tate got his teeth cleaned. He is finally tolerating it all very well and I can give most of the credit to the magnificent dental hygienist who cleans his teeth and a team of dentists who are so patient and kind.

Tate’s siblings went for a “happy visit” to our dentist when they were about five and the dentist just sat them in the chair and counted their teeth. After that, we would start going regularly for cleanings. Tate’s first visit did not go well. He was uneasy in the chair and panicked when it laid back. He would not hold his mouth open and gagged anytime the dentist tried to put anything in his mouth. I was not surprised. I wondered if he’d ever be able to see a dentist and what we would do in the event of a cavity. For that matter, how would I know if there was a cavity? Tate did not tell me when he was hurting. He did not have the ability to communicate to me when he hurt. He often had terrible ear infections as a toddler but I never knew until there was a fever. It was always a guessing game for me. Sometimes I took him to the doctor suspecting an ear infection, and there was nothing wrong and sometimes the doctor would say, “OUCH, he must be in so much pain!” And, Tate never said a word or indicated to me that he was in pain. But I was talking about teeth…

I was able to brush Tate’s teeth at home but usually had to get him in a headlock to do a very good job. I did not accomplish the headlock and the good job every day. If I handed Tate the toothbrush he would rub it on a couple of front teeth, spit, toss the toothbrush toward the sink, and call it done. He actually does not do much better than that now, at age 12. I cannot still get him in a headlock and I have to stand on a stepstool if I am going to help him these days. He is so tall!

That first time in the dentist chair at age five, was a disaster, but all was not lost because of an amazing dentist with some great ideas. The dentist sent us home with a little mirror on a stick and told me to “play” dentist with Tate. He told me to get a sturdy chair and practice reclining him in it and putting the mirror in his mouth until he could tolerate it without gagging. I did that several times over the next few months and Tate became tolerant of it. The next trip we made to the dentist went very well.

HOWEVER, the first time Tate had a cavity we were back to square one. I believe he was seven years old. The visit to try and fill the cavity was disastrous. So, we rescheduled and arranged for an anesthesiologist to put Tate under so the dentist could fill two cavities and get x-rays. It was expensive but it did not look like there would be any other way.

Getting that filling was quite an experience. He had no idea what was going to happen and not enough receptive language for me to really explain it to him. When we got to the dental office I told Tate he would be taking a nap in the dental chair and I pulled out a new DVD and his little DVD player. Tate was elated. He climbed right up into the chair and started his movie. They gave him a shot almost right away. It must have hurt ‘cause he hollered, but he did relax right away. He did not even flinch for the IV. They wrapped him tightly in a blanket and taped his eyes shut and then it was time for me to leave. I hated walking out of that room. I was banking on him not remembering anything but later that day he told me several times that he had bad dreams while he took his nap at the dentist and “they moved his teeth all around.” It probably felt like they had. They filled two cavities, removed two baby teeth, put sealants on his molars, took xrays, and plaster impressions for an orthodontist. They did it all in 90 minutes. Coming out of the anesthetic was rough. He kept bursting into tears and saying, “I’m so sad.” He insisted I kiss him so I kissed his cheek. He said, “No! Kiss my mouth.” His breath about knocked me down but duty called. HA

The plaster impressions they took that day were sent to an orthodontist. Tate’s teeth were actually so crowded that some were coming in behind others, but I thought any notion of Tate being able to handle braces in his mouth was absolutely ridiculous. I did go to a consultation with an orthodontist who assured me that he could put braces in Tate's mouth, move his teeth, and do it without overwhelming Tate (or his mother). We found that the orthodontist was just as incredible as our dentist. Tate was amazing. He did very little complaining and handled much more than I ever dreamed he would be able to. We went slow and did a minimal amount of work on the teeth but it made all the difference. The braces were worn for about a year, while Tate was in second and third grade. His under-bite was fixed and his teeth do not overlap like they once did. We found that wearing a retainer is out of the question though. Tate can’t even hold it in his mouth without choking and gagging. We hope to go back in the future for more work on straightening everything up further. 

2010               and                2011

Tate had a cavity filled in the dental office without anesthesia a couple of years after that first cavity was filled. He did quite well and I thought we would be fine from there on out. However, we tried to get a cavity filled in the Spring of this year and the drilling was just too much for him. Tate tried so hard to cooperate but he could not. He kept closing his mouth and putting his tongue in the way. He asked for a drink over and over and gagged a lot. The dentist tried everything he could but it was not going to happen that day. So, we rescheduled and called in the good old anesthesiologist again. The experience was very similar to the first time except he only had to be under for about 20 minutes. This time, upon awakening he did not cry. He just said, “I love you, Mom” about fifty times which has become something he does when he is stressed lately. I don't hear it often enough and I do love hearing it but wish it was not usually under duress. 

The other day when we went for the cleaning? They suggested we begin using a Sonic toothbrush. I haven't worked up the nerve yet to suggest we push something noisy and wiggly in Tate's mouth. School starting back up was stress enough for one week. I guess I had better practice my ninja moves and my headlock holds and break out the electric toothbrush soon though.

I recently blogged about our last trip to see a medical doctor. You can read that here: Immunizations 

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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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