Yes, Justin. You HAVE come a long way! The last fourteen months since his official diagnosis of PDD-NOS have been nothing short of a miracle. And while miracles sometimes imply instantaneous and complete improvement, miracles also come as the result of months of hard work and navigating unfamiliar territory while asking God, Himself, everyday for guidance.
As we prepare for our second Walk Now for Autism Speaks, I felt the need to update everyone who has loved, prayed for, worked with, and supported, not only Justin, but my husband and I. And yes, while most of the time I am “okay”, there are times that I need every bit as much support as Justin. I need to know that people understand. I have to know that people who know us have gained some insight into this disability that they didn’t have before. I must see that Justin’s Journey hasn’t all been for nothing. And I have to make sure that our story–the good side with progress beyond expectation, and the importance of early intervention–gets out there to every parent who needs to hear it.
I made a short video that begins with Justin around Christmas of 2010. In this video you will see a few of Justin’s struggles. First, you will see his echolalia–pretty common in kids with Autism Spectrum Disorder. You will also see one of his “screaming spells” that we experienced fairly regularly. I have to say the daytime spells are much easier with which to deal than the night-time spells!! At his worst (just a short seven months ago) we would deal with the same type of screaming episodes four, sometimes six, times a night. He could never tell us “why”. Holding him, talking to him–nothing helped. It was honestly one of our hardest times. Sometimes I wasn’t sure that Nate and I were going to make it through! And you will also see an example of one of Justin’s “stims”. This type of activity helps him to stay calm, reorganize his “sensory” issues and, well, I’m not really sure what else. I just know that there were times he “needed” to do it. And, although many parents/therapists/teachers disagree on whether or not to allow this type of behavior, sometimes I let him.
And now I want to show you a quick video I made of where Justin is today! These clips shows his love of music (quite a variety I must say)! The clips show just how far his language has progressed!! Most importantly, the clips show how much he loves and enjoys life!! For Justin, the world is no longer a scary place with crazy textures, sensory discomforts, and weird impressions. He is learning daily how to deal with those stresses and how to enjoy life. Like was stated in his one-year birthday poem, he is here to stay–just try and stop him!
I just wanted to mention two important parts about the video. First, his echolalia really helped him when it came to singing! At the time I recorded him singing the “Baby” song he still had great difficulty with back and forth conversation and could not answer questions like “What is your name?” That is the reason I included that very question later in the video. Justin was about 39 months old before he was able to answer the question “What is your name?” So of course I am so proud and love to ask him now, just to hear him answer!
Where are we now? Justin is in the Special Needs PreK (SNPK) class at the local elementary school. He rides the bus–yes, the “short bus”–go ahead, say something! The short bus pulls up to my house twice a day. Sometimes a car has to pull up and wait while I place him on the “up” step. If you place him on the “down” step it messes up his day. The wonderful, underpaid, and so loved and appreciated bus monitor buckles him into his carseat. I admit I have felt a range of emotions, but embarrassment was never one of them. If my three-year-old son can overcome his fears and get on that bus everyday and be taken to a place (without his mom) where loving, but tough, teachers challenge and stretch him almost beyond his limits, then what right would I ever have to feel embarrassed that the short bus was pulling up to my driveway? So, I choose to be proud. Proud that I recognized a problem, proud that I did something about it, and proud that I am going out of my comfort zone and doing what is best for my child. You know, I think Justin and I have both done a lot of growing this year! And I didn’t really have to choose to be proud. Waving “bye” to my baby while watching his teary-eyed face looking out at me through the bus window mouthing “bye Mommy” as it drives away–well, I would challenge any mom not to be proud.
Next year Justin will remain in his Special Needs PreK class, full time this year, and he will be attending the same school that his older siblings attend! Justin is so excited! So, I will have all four of my children at the same school, all on the same schedule! Not sure what I am going to do with myself when all four kids have been picked up by 7:30 a.m. every morning! Hmmm, maybe catch up on all that sleep I lost while getting up with Justin multiple times a night over the past three years!!
Speaking of sleep, Justin is doing much better. A change of schedule, different routine, or being around a large group of people during the day will predictably cause a few wake-ups that night. But we now know when to expect them, how to handle them, and we even have some medication we can give him on nights when we expect him to have a difficult time. Nate and I have almost started feeling human again. Uninterrupted sleep should never be underestimated!
We still have some areas to tackle! I have to admit that potty training is right near the top of my list. Unfortunately, Justin doesn’t seem to prioritize the same way I do! I’m hoping by his fourth birthday we will see some progress as far as potty training goes. It’s pretty common for kids on the spectrum to be delayed in potty training. I’ve heard that it is more of a sensory issue. With Justin it is certainly not a cognitive issue, so I guess I just have to be patient and see what happens!
Justin is getting private OT at home and will continue until at least next February. His Occupational Therapist is working on coping with anxiety that comes mostly from sensory issues. She will also continue working on his adaptive skills such as dressing, washing hands, and of course, toileting. His fine motor skills are still somewhat delayed, and he has weak hand muscles. Actually, he has low muscle tone all over–also know as hypotonia. I am in the process of getting another private PT evaluation to address these issues. He was receiving PT at school, but, since the school system only addresses needs that affect Justin’s access to a “free and appropriate education” and not medically-based needs, he no longer qualifies for PT with the school system. And in June he will finally see a geneticist. I’m not sure what to expect from the appointment, but I was told by his neurologist, pediatrician, and a friend that he should be evaluated by a geneticist. So, we will go and see what she has to say! These “big” appointments can be very overwhelming and stressful for Mama, so I am thankful to have a supportive family with me all the time!
As you could tell from the video his speech is great!! We are still working on “conversation” and socialization with peers. It is not uncommon for kids on the spectrum to function very normally within their own family and have great struggles outside of that familiar circle. This behavior describes Justin perfectly! Of course, Justin’s varying ability to socialize makes me look to the future and wonder what his struggles will be. But, Nate and I are prepared to provide Justin with whatever he needs–whether it be public school, private school, or home school. His educational needs may vary from year to year, and I will just go with whatever he needs at the time.
My love for Justin has multiplied throughout the last year. My respect for this little three-year-old who simply continues to rise to every challenge presented to him is beyond what I feel for some adults. He is such a sweet, funny, and articulate little guy! His “quotes” keep us all laughing, and I barely remember those days when he had nothing but echolalia. I know our struggles are not over, but we are prepared. Nate and I, Justin, and the rest of our family will overcome.
An excerpt from the poem written by his Nana for his first birthday:
One in 88–since the statistic of “one in 150″ has increased since our first post fourteen months ago. I don’t care about the numbers–Justin is one in a million to me! Wow!