Recently, there was a post from an interested family member on the Apraxia-Kids listserv expressing their concern about sharing with a child’s parent the issues they were noticing in that child. This concerned family member was seeking advice and was very worried about how this advice would be received. I could relate to that. Telling a parent that there might be some issues exhibited by their child that should be evaluated by a professional… oh my! I am living this story as I share this experience with you.
I am Gram to four of the sweetest grandbabies in the world, all of which have speech and other issues to some degree. Let’s call them A, B, C, and D, so I won’t get further in the “doghouse”. I am on the AK listserv since 1997 because of A, age 6 years and 3 months. At 12 months old, I knew something was very wrong with the way “A” did many things…. especially “working” on his speech, making no eye contact, afraid of touch, and too sensitive to sound. By 15 months, I was desperate for his mom and dad (my son) to take him for evaluation. You cannot imagine what denial there was or how painful it was to me to be in the “doghouse” all the time, trying to encourage them to find help. I could not stop, however, trying to get my grandson help just because his parents did not want to, and could not, see the issues I raised about his behavior and speech. Even though we knew “A” had a genetic condition called XYY from birth, there was not much information regarding these chromosomal disordered boys…nothing I could find to give me support in insisting there was something very wrong with his development.
But at the risk of estrangement from my son and family, finally “A” had an evaluation at a major children’s hospital at 19 months old. Diagnosis…. severe, global apraxia, with many autistic tendencies. It had been, and still is, hard for me to understand that the parents could not see it. In their defense, “A” was their “norm” and their “only” experience. The truth is that children have such a wide range of “typical” behavior. And finally, it was devastating for them to think of having to deal with any issues…losing their normal child. I did try to understand…but I assure you, I WAS in the “doghouse”. Then “B”, now age 5, was born to my second son. She had low muscle tone and was a “floppy baby”. She logrolled instead of crawled…w-sat all the time (and still does)…..and by 14 or 15 months…. no speech again. After seeing what we had been through with “A” and my son really making fun of his brother for being in denial over A…this son and wife were in deep denial too. If anything, the tension between Gram and this set of children was greater. Their denial was even stronger and more bitter…although having great respect for my knowledge in helping and identifying A’s issues, this set of kids “just didn’t see it” either.
Then there was “C”, A’s brother, now age 4…. so coordinated…but no speech at 24 months. The parents began to say I only looked for problems in the grandchildren. “C” has a lisp and has sensory integration problems too. I think my kids really knew my heart was in the right place, but thought I had read too much and could only see the worst in my grandbabies. That statement always amazed me. Perfect is what every grandmother wants. Experience is what we have. Some of us are very well educated. Heartbroken is what we feel when something is very wrong with a loved one. But… in the “doghouse” again and again…
Then there was “B” again. I saw so many signs of ADHD…. total denial from my children…. even though she hangs from the ceiling, does not talk well and has no memory, can’t sleep, bed wets, is compulsive, and has no attention span. This grandchild still hasn’t gotten any help with that as I am sure the school will have to speak to that issue. Even though my undergraduate degree is in education and despite many, many years of teaching experience (before I went to law school), B’s parents think ADHD is not even appropriate to discuss in regards to their daughter and can’t imagine I would raise the issue.
Then “D”, my baby, now almost three years old, came along. I thought it just could not happen again. There was just no way that yet another one of my grandchildren could have speech issues again. “D” was by far my most normal grandbaby…but at 26 months…no sound at all. Complete denial by his parents even after all our family had been through. I could not stop being in the “doghouse” for his sake. “D” is now verbal but is not intelligible. All my grand babies are now in therapies 2-4 times a week. So Gram is at peace. “A” is by far our most involved because of his other issues, which now also includes stuttering. But this first generation of problems…being a mother-in-law to boot…oh my gosh…. the absolute making of big-time “doghouse.”
I say all this because there has never been anything harder in my life (or more important) than to try to get help for the four babies I love. And the help was help that only loving parents could give approval for. I prayed. I tried literature. I tried giving web sites…everything. The Apraxia-Kids listserv has heard from me many times…my heart broken…. but nothing I could do. I was sooooo sure and I loved them all so much. I was so generally well educated and now have enough hours in study to yet have another degree regarding special children. It broke my heart…. for my children and my grandchildren but I could have never lived with myself if I had not done everything I could to try to make my sons see that each child needed help. I am not sure I am past the day for the “doghouse” again. Each child seems to be getting the help that they seem to need now. But I am watchful and not afraid to speak up again if necessary. I just have to pray that I can do it in the right way and in God’s time.
Gram from Mississippi