By Nancy Thompson
My son Curt met all his developmental goals with the exception of speech development. The day my husband and I were given the report back from the speech therapist about our son’s language delay was one of the worst days in my life. No special needs parent forgets how their first time receiving a report about their child. I remember hearing the therapist talk to us, but I wasn’t listening because my heart was somewhere in the pits of my stomach, completely broken. It took days for me to shake it off. I had a 2 ½ year old son and a 1 year old daughter who needed me and I needed to snap out of it and work out a plan for the parent I wanted to be. So I wrote this down in my planner.
Problem: Curt is not talking
Solution:
- Try everything! Talk to Curt all the time, even when you think he’s not listening. Teach him about things while I am driving. Count street lights. (He liked street lights and trains)
- Do research. Do not ever let another doctor or therapist accuse you of not doing something. Be the smartest parent they ever met.
- I am driving this bus, not the therapist, doctors or teachers. They are part of our team, but I am the driver. I can do this!
I remember clear as day when the local school district diagnostician came to my home to tell me she thought my child had Aspergers and then later told me she didn’t think I played with him enough. She asked, “Do you get on the floor on your knees and play with him?” Did I? I thought I did, but could not remember so clearly anymore. I felt like I was hit by a load of rocks. Why does the mother always get the blame? I was furious.
After she left, I went online and looked up Aspergers. It didn’t sound like my son. Aspergers kids tend to talk on time. My son wasn’t really talking. He had maybe 15 words total and many of those were in a language he made up. So she was 100% wrong on Aspergers. Did I play with him enough? Nothing feels like enough when you feel like a parental failure (which I wasn’t by the way, but good luck trying to tell me that 12 years ago).
I went to the Gap for a little emotional therapy shopping and bought a new pair of blue jeans. These jeans and I had a plan. I was going to wear them every single time I got on the floor to play with my son. They weren’t just my “Mommy jeans,” they were the symbol of my relationship with my Developmental Language Disorder. Curt had deficits in both expressive and receptive language and it was overwhelming. He was in the 2nd percentile for his age. But I could see he wanted to learn and communicate.
Curt and I started at the train table, playing with Thomas the Train everyday. We practiced playing with toys back and forth. I would talk and model questions and answers. I really wanted him to be able to ask for water and tell me when he was hungry. So we spent a lot of time in the kitchen modelling sign language along with spoken words for water, eat, more, etc.
I didn’t look at speech goals and let them overwhelm me. I made my own speech goals depending on what was best for him and the things he found frustrating. If I could ease his frustration more growth would happen and it would happen faster. I told the Speech therapist, “Okay for the next month we are going to work on personal exchanges where he needs to ask for things he needs and we need to model the exchange a few times. Don’t frustrate him at all. Just model and repeat, model repeat and then give him the item. He will catch on!” We started with water, then moved to food, toys, and then things he was interested in. I managed to work in reading site word, shape names, colors, and the abc’s. One of his first words was Frapachino. Guilty as charged, let’s just say Starbucks got me through some tough days.
I would count street light poles on the way to speech therapy. Then one day out of the blue he started counting with me. I broke down and cried. I had been waiting for that milestone forever. It meant that every time I talked to myself like a crazy lady in the car was all worth it. In the beginning, one goal took about two months and then after a year, goals took about two weeks.
Six months after I bought my jeans I noticed they were faded at the knees. Two months later the knees ripped. I wore those torn up jeans till Curt’s next speech evaluation. While his speech therapist was reviewing his growth over the last year, I couldn’t help but reflect on my own growth and the holes in the knees of my jeans. Those holes meant something to me. I earned them!
I bought a new pair of jeans soon afterward and I repeated this six more times. I have kept most of the holey jeans. They have become my trophies for each set of milestones met. I always tell newer DLD Moms to go buy a new pair of jeans, get on the floor and play with their son or daughter. Enjoy your child and try to have the best time putting holes in the knees of those jeans.
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Nancy Thompson lives in Austin, Texas and is a Mom to a 14 year old son with Developmental Language Disorder, a 13 year old daughter and a 6 year old son. She enjoys reading books, Austin music, art museums, eating tacos, and going camping with her family. She loves helping others in the DLD and special needs community and making things better for all children.
Thank you for this! I appreciate your honesty and realism. I commend you for all of your hard work as a momma!
I have a 3 year old son with DLD (diagnosed when he was 2) I live in NY and I also have a 1 year old daughter. He is in a special school 5 days a week, but I still feel like I should be doing more. Your article really helped. But can I ask if any of your other children have DLD I am petrified for my daughter and they use the word genetic all the time, my husband and I don’t believe we have it, so where did this all come from and is she next??
Thank you for this, my son has also had every label in the book thrown his way. We grieved after someone told us he had autism only to have the clinic ( a very well respected clinic here in Washington) say “we meant he meets the criteria for insurance to pay for services, not that he has autism.” We did speech and developmental preschool and everyone pushed their narratives on him. SPD, ASD, you name it. At 4 he received his formal DLD diagnosis and now we are 5 and in a kindergarten classroom that truly doesn’t get it. I found this website and read all your stories and cried! It’s great to hear that we aren’t alone, that we aren’t crazy! Thank you
Your article brought tears to my eyes. What a devoted mama you are. I thought of the many children like your little one who don’t have such devotion in their lives. They are just left in corners to develop on their own. God bless you and your little one. And all those holes in your jeans.
Thank You for sharing.
I too have several pairs of jeans which have worn into trophy knee holes after extensive child-related activity.
I think there should be a national jeans with knee holes wearing day to raise awareness of and celebrate the laughter, anguish and exhaustion of life as a parent just trying to do their very best for their child AND enjoy every moment of it.
This Message is for Lisa F who wrote above. I hope you see this.
Lisa, while I do not have another child with DLD, I do have a daughter with dyslexia and some auditory issues that appear as ADHD inattentiveness. She was tested and showed signs she was probably gifted but something was wrong. She has benefited from her brother because of all the therapy we did with him, we were able to catch her type of dyslexia very early on. She was literally missing 4 phonograms in her brain due to non-stop ear infections between the ages of 4-7. She had to go to speech therapy to practice sounding out certain sounds and we grouped them with a dyslexia specialist. She did this for 4 days a week for 3 summers and then 2-3x per week during the school year. We did a lot of before and after testing and we were able to track real progress. Last year we tested her for gifted again and this time she passed with flying colors. I owe all of what we were able to do for my daughter to my son. Had I not known what to do, I don’t think she would be doing so well right now. She still has to work very hard. We have her on a 504 plan in school to give her extra testing time. And we review things in multi-sensory formats when needed with her.
I also have a younger son who is 6 and I worried while I was pregnant, then constantly through each milestone. He hit a language wall around age 3-4 that worried us a tiny bit but we gave him time. Teachers were freaking out and I had to really stand up and tell them to chill out and give him time. He’s now six and doing extremely well. But that doesn’t mean we let down our guard on him. My husband and I are constantly working on his speech and language skills. Mostly because were a realized that this is just what we do. He has a lot of fine motor issues. He does therapy for that. But I am giving him time and he is coming along quite well. We are miles ahead on his therapy because of all we have been though with his older brother.
I think the key is to remember to slow down and enjoy our children. Try to blockout alt he outside noise. Inform them about DLD and how it can affect families, but only in how it makes them uniquely a family. I think my sons DLD has made my daughter a more empathetic person. Her dyslexia has also made her more sensitive. We tend to read a lot of books about inventors, and artists who think differently and now my youngest son thinks that different is cool and a good thing. Hang in there. All the knowledge under your tool belt will just help you with the other children no matter what.